CF Steph

March already

2011-03-01T21:01:00.002-05:00

Yes, I am a very bad blogger. It is not that I don't want to but finding the time is difficult.

I have been trying to make the most of every moment I have with these lungs. I have been going in to work everyday. I have been working out 7 days a week. I am having fun trying new things. The College I work at have put a great wellness program together. Two days a week, get beat up in boot camp. I love it because you can push yourself as much or as little as you want. One day a week, I enjoy hula hooping class and the other two days I take aqua fitness. Three to four times a week, I have been joining my husband at the gym and lifting weights. I want to be buff by bikini season. Ha Ha Ha.

I have been able to spend more time with my friend, Andrea and her children. Andrea has been a great friend to me for over 30 years and I am so glad we have been able to enjoy each other's company more often.

I am starting to do more travel for work. I haven't flown yet but plan to in the next six months. I also am becoming more active with the Alumni Association at Saint Joseph's College of Maine where I work and graduated from in 1998.

In two weeks, I am starting my MBA in leadership degree. My plan is to be done by December 2013.

Next weekend, I will be spending time with two of my favorite girls. We are going to Boston for two night and then Cape Cod for two nights. I can't wait. We always have a blast together.

I have been enjoying time with my family and my husband. I have been able to spend time with my sisters and their children.

Tomorrow, I go to Brigham and Woman's for my almost one year anniversary appointment. I can't believe how far the time has flown. With all the ups and downs I would not change the past year for anything.

Life has been good to me and I feel blessed to have been able to wake up and breathe with ease over the past year. As aways this blog is dedicated to my donor and his/her family.

Transplant Anniversary

2011-01-21T13:54:00.004-05:00

I would like all my transplant readers to comment on this blog with the type of transplant they had , the date. a little about your surgery and where you had it. I want to show everyone how many people are helped by the generosity of organ donation.

My information: Double Lung Transplant started on 3/17/10 end on 3/18/10. Came of the vent 3/20/10 after needed to go back in to surgery on 3/19/10. I had my transplant at Brigham and Women's Hospital in Boston, MA. I was released on 3/31/10. I spent a total of 13 nights in the hospital after my transplant.

December

2010-12-29T07:43:00.006-05:00

My Nana and I

I cannot believe it is already December 29th. Two more days and 2010 will be over. What a year it was! I want to take this post to reflect on the month of December. My next post will be a reflection of 2010.

Lots have or will happen this month:

What has happened:

I made it through Thanksgiving and Christmas festivities without being hospitalized or needing IV antibiotics.

I attended 5 Christmas gatherings in 5 consecutive days without becoming extremely sick or exhausted.

I went to stores to do my shopping instead of doing it 100% online like past years.

I had my nine month anniversary of my new lungs.

Went to transplant clinic and don't need to go back for 3 months.

I ran/jogged my first mile post transplant. Then did it 2 other times.

Made Christmas dinner for my husband.

Put up my Christmas tree all by myself.

First Snowfall.

First time shoveling the deck and stairs with new lungs. No cough or shortness of breath.

First time snow shoeing.

Took the step to never have my own children. Yes, my surgery I had was a tubal ligation.

First sinus infection with new lungs. Only needed a z-pack (5-days of Azithromycin) to feel better.

What will happen:

I am having my port removed on 12/30/10.

I will celebrate my 35th birthdayon 12/31/10!

I will see in 2011 breathing easy on 12/31/10!

I hope you have a safe New Years Eve!

Thanksgiving

2010-11-27T20:03:00.002-05:00

I have so many things to be thankful for this year and not a minute went by on Thanksgiving that I did not think of my number one thing: my donor.

What a wonderful feeling it was to be able to enjoy the day without coughing or using oxygen. I can't tell you the last time I was able to spend a Thanksgiving without having a home health nurse come visit me or that I was had the energy to drive 2 hours to my hometown, visit my in-laws, my dearest friend and her family, go to my parents house, eat, watch football and then drive 2 hours home. I have never been able to just get up and decide to go black Friday shopping. It was always plan to go, wake up to do my meds and then go when I had someone else to go with me. This year I got up at 3am and looked online for deals. Then I figured I was awake so why not venture out. The roads were icy but that didn't stop me from shopping from 6am until 3pm. I got 99% of my Christmas shopping done and my groceries. By 7pm, I was asleep on the couch. My husband woke me up and sent me to bed. Then at 9pm, he woke me up to take 2 pills and then I was fast asleep again. No skipping a neb treatment or vest treatment because I was too tired or even staying up for a hour longer than I felt like.

Today, I got to watch lifetime movies all day. I started a walk around noon but I got about a 1/2 mile down the road and I started getting all sweaty and shaky. Not because it was warm out either it was only about 35 degrees. My blood sugar dropped so I headed back home. I checked my blood sugars and it was 66. I ate a Turkey and stuffing sandwich with some milk. Once my belly was full, I turned on Lifetime and feel asleep. At 3:30pm, I looked outside and it was snowing. I bundled up and brought the dogs for about a 2 mile walk. It was tougher than I thought because the roads were covered with snow and ice. It was a workout staying on my feet. It is so wonderful going for a walk in the cold without the cold air taking my breath away or making me cough so hard and so much that I wish I would had worn a depends. HA HA HA.

These are just a few of the things that reminded me to be thankful for my donor and his/her family. I know it was probably a tough Thanksgiving for them because the recently lost their loved one. I hope that someday I can share the memories with them that were made possible by their decision to donate their loved one's organs.

I also am thankful for all the people that loved and supported me over the past few years. There were so many people in my communities that cheered me one and still do. It means so much to me.

All last week, I thought about the people that went above and beyond for me in the past few years. There were those that took me shopping because I couldn't carry my own bags. The people that called and talked with me to help me pass time while I was in the hospital or at home because I was to ill to have a social life. The many people that sent me cards or thoughtful gifts while I was recovering from my surgery. The people that took the time out of their busy life to bring me to my appointments whether that was in Boston, Portland, Buxton or Windham. Of course, I thought about the Doctors and Nurses that took care of me in the past and that still continue to do so. There were two people that I thought about most, the two that finally convinced me it was time to go active on the transplant list. I didn't name names because those that did these things know who they are. I know if I named everyone that I am thankful for, I would leave someone important out.

I hope everyone took some time to be thankful to those that have made a difference in their lives this Thanksgiving.

Almost 8 months post transplant

2010-11-10T12:00:00.004-05:00

It has been a while since I have posted. I have been pretty busy enjoying these lungs. I might have over done it because my lung functions have dipped over the past week. I am going for a bronch next week to see what is going on in these precious lungs.

I have been doing great with the blood sugars. My A1C ( 3 month sugar average) was 5.8. The American Diabetes Association recommends an A1C of less than 7.

The sores in my mouth are gone and have been since the end of September. I have gained weight. I currently weigh the most I ever have.

My work is holding a physical training session called boot camp. We do all kinds of neat things. Everything from salsa dancing to kick boxing to weight training and cardio. I do it 2 days a week for an hour. The other days I have been taking my dog for walks in the morning and evening...weather permitting. I would attend boot camp more but right now I only go to the office 2 days a week. The other 3 days, I work from home.

I can't believe how quickly the holiday season is approaching. I have never been a big fan of this time of year so let's hope these new lungs give me a different out look at this time of year.

So a break down of what I have been up to:

Returned to the office 2-3 days a week
Concentrated on getting in shape while gaining weight
Slowly decreasing the number of doctor appointments I have
Visited my hometown twice in the past 2 weeks
Went up to camp a few times this fall (very cold)
Attended a funeral (cried a lot)
Have been spending a lot of time out side with my 3 dogs
Attended a retirement party
Helped out for a fundraiser for the American cancer society
Painted my first piece of pottery
Spent my anniversary weekend in Burlington, VT
Took a cruise on Lake Champlain
Spent the weekend with Brittany who is currently going to UVM
Done a lot of shopping
Bought a lot of new shoes and clothing
Purchased a really expensive air purifier/vacuum cleaner
Ate at some really good restaurants and had some fantastic meals
Tried bake escargot...not a fan
Got to spend some time with my hometown friends Tracy, Andrea and Ryan
Spent some quality time with my mom and dad

Things I need to do:

Visit both my grandmothers
Visit my extended family more
Take time to enjoy the holidays
Get my lung functions back to my baseline
Go back to work in the office 3-4 days a week
Spend more alone time with my husband
Keep up the exercise once boot camp ends in December
Stop spending so much money
Get my business plan written up for my non-profit over the winter month so I can start fundraising this spring
Start on my Master's degree in the Spring
Start eating healthier
Spend more time with my 2 sisters
Go to a Celtics game
Get to a concert

Things that have changed after 6 months

2010-09-21T11:33:00.003-04:00

In April, I wrote this blog http://cfsteph.blogspot.com/2010/04/post-transplant-thoughts.html.

Some of the things that have changed is I can drive and run. I will admit I don't run like I thought I would post transplant. Though I am much more active than I was.

The hunger should be coming soon since my mouth sores are almost gone and I am not having pain when I swallow.

My pain is slowly going away. It is nothing like it has been in the past but my body has been through a lot of ups and downs in the past 6 months so a little pain is okay to me.

The number of medical appointments are a lot less.

I am back to work and I even go in to the office a few days a week.

I am on less medications.

Less side effects from medications.

I am able to swim.

My finger nails are the longest they have ever been in my life.

My bald spot on my head is almost filled in. That was from the fluid they pumped me with during my transplant.

I have gone to camp about 9 or 10 times this summer. I still plan on going up this fall and even this winter.

I had no issues breathing in the humid weather.

I don't cough going from hot to cold.

I can do laundry, sweep and mop the floors without getting out of breath. Not that I like doing those things but Brian likes that I can help out.

I did a 3.5 mile walk for ALS 2 weekends ago and never once needed to stop to catch my breath.

I don't need home health any more though I miss my VNA nurses.

My medicines have caused me to need to treat my blood sugars. I have been on insulin for 4 months. It is just a new way of life but I can breathe so I will deal with it.

I went to my niece's soccer game and didn't need to wear oxygen to walk to the field from my car. I loved that some of her teammates came up to me and notice I wasn't wearing it.

I am sure there is so much more but this is a good list to begin with. I will update this every several months.

These thing were all made possible by my wonderful donor.

Hello Blog world

2010-09-10T10:54:00.002-04:00

I feel like I have been out straight. I have absolutely no news about the rattle in my throat or the sores in my mouth other than they are both still there.

I have gone in to my actual work office at the college four times in the last week. I needed a change from everything pre-transplant. My goal is 2 times a week.

I have spent most weekends up to our camp. We have the addition almost done. We are putting the roof on now. I will probably make it up there for or five more times before snow flies.

This weekend, I am doing an ALS walk with my husband and then going to my nephews birthday party. Sunday will be a day for me. I love those days.

It is weird not going to Boston every week. I don't go back until October. I have a CF appointment in a few weeks. Plus I need to schedule an upper endoscopy because of some pain that I have when I eat and we have already ruled out acid reflux. I am going to my first dental cleaning since my transplant on Monday and getting my first IV of reclast for my bones. So even though I am not in Boston, I am still pretty busy with appointments.

I think I am going to take the next two Fridays off. Maybe next week, I'll use my gift certificate for a manicure or pedicure. Time to pamper me a little.

Home and IV free

2010-08-19T10:23:00.002-04:00

I guess the title says it all. I came home last Tuesday from the hospital. Went to my appointment in Boston on Wednesday. Finished my IVs on Sunday. The sores are almost gone. I have one sensitive area on my gums but all the white spots are gone. I guess the conclusion was they were caused by one of my anti-rejection meds. So They took me off it and will replace it with another drug when my mouth is 100% healed.

I still have the rattle/congestion in my throat. No one seems to have any idea why. It is really bugging me. I am going to have a bronch next week and they will check out my vocal cords to see if anything is wrong with them. I am still a little tired but not as bad. I feel like I need a nap around 2:30pm and I have a hard time getting out of bed. Maybe I am just bored.

Yesterday, I went in for a bone density test. I don't have any results yet. Then I went to my office. I really needed some social interaction. I don't think being home all day alone is healthy for my mental status. I guess it makes me feel like nothing has changed since the transplant. I am going to start going in to the office 1-2 days a week. Yesterday was good for me because it made me feel normal again.

I need a real vacation. Yes, I go up to our camp a lot but I did that pre-transplant. I need a real get away. An actual vacation. I need to find out when I will be able to travel because I need to get out of New England. The furthest away I have been in 2 years is Pennsylvania. Brian and I both deserve some time away to just relax and breathe! It has been a crazy couple of years.

This weekend I am going to The New England Country Fest with Andrea, her mom and her aunts. Brad Paisley is the headliner. I am so excited. I will be nice to just be and have fun without worrying about everything else.

This is crazy

2010-08-09T17:47:00.002-04:00

Well I came in to Maine Medical center on Monday August 2nd. I came in because I was extremely tired, my lung lung functions were down, the sores in my mouth were getting really bad and I just didn't feel good. Fast forward a week later, the sores are starting to go away, my lung functions are up 8%, I am not as tired and I am starting to feel a little better. Now that I am eating solid foods I am noticing that food feels like it is getting stuck in my throat. So they want me to do a barium swallow test. Maybe that is one of the reason my lung function is down. Who knows.

I am hoping to be released tomorrow so I can go to my clinic appointment on Wednesday. I have been on IV antibiotics. I think they helped a little. I am sure they will send me home on them for another week. I am hoping to get over all of this soon so I can get back to living life again.

My friend Beth, is having a tough time. She got her transplant almost 2 weeks ago and she had to go back to ICU because of some chyle fluid around her lung. I guess it was from a tear in on of her lymph node that runs along her abdomen. They were suppose to do surgery on Sunday to fix everything. I hope it went well so she can start healing. Please send thought and prayers her way.

"Mama always said life was like a box of chocolates. You never know what you're gonna get."- the movie Forrest Gump

A little good news

2010-07-29T11:24:00.003-04:00

My CF friend Cysticgal or Beth got her lungs. I am so happy for her. I am also happy that she got the call from the center close to her home. That will make life so much easier for her. I know she will get great care because I have. Last I have read, she is off the vent still in ICU. I hope she is getting the same exceptional care that I got for the ICU nurses. Maybe she will be blessed with Kathy.

I need to go in for a CT scan of my lungs to see if either bug is effecting them. I grow out two different bugs in my last sputum culture: Pseudomonas and Stenotrophomonas maltophilia (I think). These are two bugs that I have grown out with my old lungs so they are probably hanging out in my sinuses or throat. Once the CT scan is done then the Doctors will decided how to treat it.

I don't know if I have blogged about the sores in my mouth or not but they have been there for over 4 weeks. I have seen a dentist, my CF doctor, the transplant clinic, my primary care FNP, my ENT and an oral surgeon. No one has any idea what they are or why I have them. The oral surgeon gave me penicillin for 7 days thinking that might help...nope. I go back to see them on Monday to see if they are getting better and if not come up with a new plan of action. One of the biggest issues is my white blood count is 3.5. Which is low. Normal is 4.5 to 10. So my body just doesn't have the extra to fight off these sores. Next week, I'll stop one of my anti-rejection drugs (Cellcept) to see if that helps the sores. My gums are super sensitive and the minute I touch them with anything like a toothbrush or food they form sores. Trust me I have good dental hygiene. I brush 2-3 time a day and use mouth wash 2-3 times a day. I was flossing 3-4 times a week until these sores appeared. Wow got to love being immune suppressed.

This blog is not meant to be all about medical issues but that is about all I have going on right now. The good thing is none of them seem life threatening.

I have the weekend to myself. I am so happy about that. I don't think I have had a weekend like this since long before my transplant. Brian is going up to camp tonight until Sunday. My only definite plans is to go to my niece's birthday party Saturday evening. I think my parents will spend the night on Saturday after Rheana's party. I am hoping to meet an old friend for lunch tomorrow.

I will leave you on this note:
"It's not the size of the dog in the fight; it's the size of the fight in the dog." - Mark Twain

I am so bad

2010-07-22T17:47:00.002-04:00

My life has been very hectic and frustrating. I guess I haven't been blogging because I don't want to sound like I am complaining. I never forget each day how blessed I am to have these beautiful lungs.

The past 5 weeks we have been trying to figure out why my FEV1s and my small airways dropped. They finally hit bottom 2 weeks ago. Last week the were stable and this week my FEV1s increased 5 % and small airways went up 7%.

I did 2 weeks of inhaled Tobi and 3 weeks of levaquin. I had a sinus CT scan. I am in the process of doing a PH probe test today. My chest x-rays still look good and my biopsy at the end of June showed no rejection. I am really frustrated and want an answer. My CT scan was fine. The ENT said I had the clearest sinuses he ever saw for a CFer. My sinuses are wide open.

I am hoping that the sputum culture that I did on Tuesday will give some answers because I don't think I the pH probe will come up with any answers. If nothing shows up with all these tests, B&W Hospital will repeat the bronch and biopsy.

I am down to 5 mg of prednisone. My blood sugars are pretty stable with the help of some long acting and short acting insulin. Not sure if this will be a new way of life or not. Only time will tell.

The good news is I am not experiencing any shortness of breath. No fevers. 100% oxygen. So I sit here scratching my head. I have been spending a lot of time up to camp. Last weekend, I went to OOB and enjoyed the beautiful weather beach side. Sunday, I went to my first Redsox game post transplant. It was very hot but I loved every minute. Felt great to walk up the bleachers with no oxygen, no CF cough and no shortness of breath. I am loving every minute of this even the little bumps along the way.

I have been busy enjoying life while all of this is going on.

Yucky Sinuses!

2010-06-28T14:57:00.002-04:00

I have been battling a sinus infection for a few weeks. I thought it allergies but it moved into my airways. Now I have broncial pnemonia. So I am on inhaled Tobi and levaquin for 2 weeks. I feel like I just can't catch a break.

I am still waiting for results from my biopsy. Please pray for no rejection. My body needs a break. My lung functions are down quite a bit but the doctors think it is from the pnemonia. Let's hope these meds work and I bounce back quickly.

I met with a diabetes doctor a few weeks ago. it seems like my blood sugars are under control. I am hoping that now my prednisone amount is down to 7.5mg, I will see a difference in my numbers. I didn't take my long acting insulin last night (I had a brain cramp) and I woke up to a blood sugar of 119. I was very happy with that!

Other than the continuous health issues life has been pretty uneventful. I have been going up to camp just about every weekend. A weeks ago I went to see Lifehouse and Daughtry in concert with my husband and my darling friend Andrea. The week before that Brian and I bought a 1999 Heritage Harley Davidson. It is so much nicer than our 1982 roadster. We have been on a couple of rides. We have been out on our boat once and took a boat ride on Brian's uncle's boat this weekend. It has been pretty nice weather here in Maine.

I am excited I got tickets for Maine Day at the Redsox on July 18th. This will be the first game I have been able to go to in a few years. Last year, I just didn't feel healthy enough to go. It will be nice to walk from the parking garage to the park without needing oxygen.

I am still going to Boston just about every week. I still can't drive so I am starting to feel like a burden on my friends and family. I hope they give me my driving privileges back soon.

Friday update

2010-06-11T12:35:00.002-04:00

Well, this week was an interesting one. It started out with an itchy ear, a dry cough and GI issues. On Wednesday, I went to my transplant clinic. My lung functions were the highest yet and my x-ray looked good so they were not too concerned with the cough. What they were concerned with was my blood. My potassium levels were high, my white blood cells are very low and my blood sugars have been out of control. Plus they are concerned with the GI issues. So I had to go get an EKG to make sure the potassium was not harming my heart and then had to repeat the potassium blood test which came back in the normal range. Because it came back normal they did not make me take the treatment for it. For my blood sugars they added some long acting insulin twice a day. As for my GI issues, I got to do 3 lovely stool samples and a stomach x-ray. I don't know why I am not glowing from all the x-rays. Good news, no CMV, C. Diff. or bowel obstruction. Even better news my GI issues have seemed to gotten better. I am afraid to even to write that and jinx myself.

After my long appointment in Boston, my sister, Tonya, her 2 boys, Martin and Chase and I all went on the duck tour of Boston. All the years that I have been going to Boston, I had never done a tour. So Tonya and I thought the boys would really like it. I think they did until both boys peed their pants. Note to self, don't take a 3 and 4 1/2 year old on a vehicle for 1 1/2 hours with no bathroom. The best part is Chase, the 3 year old was sleeping on Tonya when he peed so she got soaked with pee. Martin was about 1 minute from getting off the duck tour when her peed. I felt so bad for him because he had held it for like an hour of the tour. After the tour we had to walk through the Copley Mall to get to the car to get a change of clothes. Poor little Chase cried for his daddy the entire way through the mall and I was the one holding his hand. I felt like someone was going to stop me to see if he really belonged with me.

So I still have the cough but now it is assisted with a sore throat. I just walked for 40 minutes and feel better. I have a high school graduation to attend tonight. Last year, when I went I had oxygen in tow. Wow, how things can change in a year.

Stomach Bug

2010-05-28T19:49:00.002-04:00

Well, I got home on Sunday. The IV steroids were fine but something happened to my stomach while I was in the hospital. I threw up like 5 times in the hospital, 3 times on my way home and then a couple other times this week. I had horrible stomach pains and GI cramps. Last night, I was awake most of the night in pain plus had my first fever post transplant. I was a little scared and freaked out. I call B&W today and they want me to call and see them if the fever returns over 100.4. The nurse said that something is going around and I probably picked it up.

My lungs feel great. I still have some sternum pain. I will be glad when that is gone. The pain is a different type of pain that I have felt before. It is like a burning feeling. Tylenol seems to get me through the day but by evening I have had enough and take 1/2 of a pain pill. It helps take the edge off.

Brian and I are going to camp this weekend. We both took a few extra days off. The weather looks great. Most of my family will be up there too. This will be my first trip up to camp since September. I am excited to do the things I haven't been able to in years. I wish that my pain was 100% gone but I know it will come in time.

Little Bump in the road

2010-05-20T20:13:00.003-04:00

Any one who has gone through a transplant knows the journey is full of ups and downs. I got a call from my nurse coordinator at the transplant clinic today and I have mild A2 acute rejection found with my biopsy on Tuesday. I don't really feel much different other than a little tired, I breathe a little harder walking up hills and a little pain in my lower ribs/lungs (not really sure where the pain is coming from). So i will be going to Boston for 3 days for IV steroids. This is a little bump in the road and I have nothing but positive thoughts about this. I am so glad we bumped up my biopsy. Thank God for Dr. DD. LOL! She is the one that suggested it after a 5% drop in my lung functions.

This will make the third trip to Boston this week. I should just change my residence. Luckily, I love my transplant clinic and Brigham and Women's Hospital.

My scar is healing and fading nicely, I will post some pictures next week.

I am so happy to say that James got his transplant at PENN yesterday and already has his vent out. I am so excited for him and his family. Thank God for donors and their families.

I got out and went for a nice head clearing walk. Along the way, I stopped at the lake and played with my dogs for about half hour. I really needed a little time to myself.

i am hoping that these steroids make me feel better than I could imagine. I knew last week before I did my PFTs that they would be down. That must have been a sign for me. I guess I need to learn to listen to my body and figure out what it is trying to tell me. This is so different that the past but so worth it. I still would not change anything! I was always told, what doesn't kill you will only make you stronger. I am a true believer in that!

New Beginnings

2010-05-13T15:23:00.002-04:00

It has been almost two months since my transplant. It is time to start over again. I will be returning back to work on May 17th. Even though I will be working from home, it is still a step in the right direction. I also have started the paperwork for my Non-profit. My deadline to get my business plan done is May 24th. Let's see how I do.

I have been pretty committed to walking everyday. The only days I don't are the days that I have out of town doctor's appointments or go shopping. I haven't been able to start jogging yet because of the sternum. My new goal to start a run/walk program is June 3rd. Hopefully, I will be healed enough to start then. Since I am currently walking every day I am hoping the transition to jogging will be smooth.

Ten months ago, I never thought I would be walking 2-3 miles every day without getting out of breath. I feel so blessed and think of my donor every day as I do the things that I haven't done in years. God bless the donor family for following though with my donors wishes.

Post transplant thoughts

2010-04-27T10:09:00.004-04:00

Great things post transplant:

Breathing
Exercising with no oxygen
Traveling overnight without bringing vest or nebulizer
Socializing
Gaining hours a day back because no need for vest or nebulizer
Being able to load and unload dishwasher without getting short of breath
Holding my breath
Talking
Laughing
No coughing
No daily fevers
No monthly IV antibiotics

Things I can't wait for:

Driving
No pain
Flying
To be hungry
To run

Scar with no staples!

2010-04-21T08:34:00.003-04:00

As of April 20, 2010, I am tube and staple free.

I went to Brigham and Women's yesterday to have my 1 month bronch. To read about my appointment please go to my caring bridge page at http://www.caringbridge.org/visit/stephaniebriggs. I don't want to repeat everything on here that I write on there.

I was suppose to leave with ever other staple still in but once the Surgeon pulled out every other one, he thought it was silly to keep the others in. I love that man. He was not the main surgeon during my transplant but he was an attending. I saw him a lot in during the 13 nights I was in the hospital. He would always come in and make everyone in the room laugh. I don't even know his entire last last because it is long and not a common name. I call him Dr. B. He was also the man that pulled my last drain tube. Yeah!

I am in a lot less pain today. What a difference it makes with no drain tubes. I am going to try and only take 2 or 3 pain pills today. I don't want to just stop them and go in to withdrawal. I went 12 hours last night without any pain pills so I think getting off of them in the next week will be doable.

Pray for Lungs

2010-04-18T18:18:00.002-04:00

I have a group of CF friends that are all waiting for the call for new lungs. One of them got a call this afternoon. She is at Duke and is in surgery as I type. I am so happy for her. She is about to receive an amazing gift exactly one month from me getting mine.

My thoughts go out to Piper, Beth, James, Ashley and Justine. They are all struggling to breathe with their damaged CF lungs and are all active on the lung transplant list. I say a prayer every night that their call comes and they receive the wonderful gift of new lungs. I keep repeating that this is so much better than I ever could have imagined and I am still healing and I can't wait for them to experience this.

I hope Jess is just the continuation of us getting our lungs. I can't wait until we are all chatting and blogging about what amazing things we are all doing with out fantastic new lungs! I am rooting for all of you!

DR. DD

2010-04-14T20:49:00.002-04:00

Let me tell you about one of my doctor's at my transplant clinic. I will not use her name but her initials Dr. DD. She is one of those people that talks to you like she is better than you. Anyone that knows me understands that this is a major no no!

My first encounter with her was pre-transplant. It was even before I got listed. She was trying to convince me how important it was not to wait too long before going active on the transplant list. you would think this was a good thing but I was still in denial of needing a transplant. I still thought that I could get better. In not the exact words she said...If you don't get listed you will die. Then in the next breath she said but remember this is a serious decision because of 50% of people are alive 5 years after their transplant. Not did she say this one in the visit but 4 times until my husband spoke up and said "we understand the risk and the statistics but you don't need to keep repeating that and if you say it again we are leaving." Keep in mind Brian was trying to get me to go active on the list. The entire visit with her pre-transplant was very negative.

Now fast forward to today. The nurse coordinator, Kathy came in and asked if I was ready to get my last drain tube out. I was happy and couldn't wait. Kathy needed to have the okay from the doctor before we proceeded. So then the attending came in and did my check up. He saw no reason why the drain would not be pulled and would find out about the staples. He left and returned about 2 minutes later with Dr DD. I immediately remembered her from my pre-transplant visit and knew we just did not mesh. She started off by going over my medicines. Saying something about voriconazole and I asked if she was taking about the medication that the pharmacist and I was just talking about valcyte. She quickly let me know that I was confusing voriconazole or v-fend with valganciclovir or valcyte. while doing this she spoke to me in a very condisending tone of voice. I tried to just shake it of. My dad also caught the tone she spoke to me. So I know it wasn't a prednisone overreaction moment.

Of course then I had a few questions. Brian wanted to know what date the limitations started from...my transplant date, my last surgery or when I left the hospital. For example, I should be able to drive in 8 weeks as long as the doctors approve it and I am off all pain killers. We didn't know when that 8 weeks started from. Dr DD answer was "you can drive when we say so!" No kidding that wasn't my question. Then I wanted to know how long I had to sleep at a 30% angle. Her reply "when we tell you that you don't need to." Next question, should I go to my dentist appointment next week to get my temporary crown replaced with the permanent one? Her reply, "Thank you for telling me about your temporary crown since I will be doing your bronch next week and no change your appointment because you are on a super high dose of prednisione." I asked when should I change it to? Her reply, "I don't know, until we tell you it is okay to have oral work done." Thanks for the help Dr DD. I ended up changing the appointment until June 8th. Let's hope my temporary crown will last.

Alright now to the piece that really bothers me. Last week, Dr. Camp the big wig and my surgeon told me my drain tube would becoming out this week along with the staples. Dr DD decided she did not want to do either without talking to Dr. camp tomorrow. He is on a much needed vacation but you would think that she would have brought up my case with him this morning when they did the phone conference with him. I let this pass and figured I didn't want to rock the boat with her especially sine she is the one doing my bronch next week. So to really drive the nail in to the coffin Val, my NP at the clinic called to tell me that I need to increase my prograf again. During the phone conversation I brought up what happened at the clinic. She told me that clinic protocol was to remove any drain tubes that drained less than 30 cc a day for more than 3 days in a row and that herself or Kathy could pull the drain tubes. Then she said it is also protocol to take out staples after 30 day. I have had mine for 28 and she said she would have removed them especially sine Dr. amp and i talked about it last week. So Val is going to make sure my drain tube gets pulled during my bronch appointment and also make sure the staples can be removed.

I have decided I am going to ask for an advance notice of when this Doctor is in the clinic so I can prepare myself from blowing up at her. I love most everyone else I have encountered at my transplant clinic but I could definitely live without her there. Well, I hope you enjoyed me blowing off some steam.

True love

2010-04-11T22:06:00.002-04:00

This picture was taken right before I was rolled away to get my new lungs. It was a very emotional moment for my husband and I. This picture really says it all. Thank you Andrea for taking the picture. In the 15 years of Brian and I being together, this is my favorite picture of the two of us. I love you Brian and thank God every day that I was blessed with you as my partner. Thank you for standing by me and cheering me on during the past few years. I really could not have made it through this all without you. You are my rock!

Big Plans!

2010-04-10T21:57:00.002-04:00

First, I want to thank everyone for the kind words and reassurance. I never doubted my decision to get the transplant. I think some time we just was to measure everything with a number and you cannot do that with cystic fibrosis. It would be great if there was a magic number that told us how sick we were but that just is not the case.

I have decided to put all of that behind be because the people that know me and have read my blog know that I was really sick and that my quality of life was in the toilet.

Today was a beautiful day. Everyone keeps asking me how it went or how I feel. All I can say is better than I could have ever expected.

I have so many things planned for the future. I can't wait until I am 100% healed so I can give living 110%. I am going to work with my transplant center to pull together an informational piece for pre-transplant patients. This will cover what to accept before the transplant, when you get the call, what you need to bring with you to the hospital and how to survive in the hospital post-transplant. It is amazing how much I was unprepared for which I could had been informed of. This really need to be done in the perspective of the transplant patient. Because only the patient knows what is happening. I am excited to take this task on. Plus I plan on working with the transplant center to make "the call" a smoother process.

The next thing I plan on doing is starting a non-profit organization, Hope Heals. I have all the paperwork to fill out. I will be doing another entire blog about my foundation as soon as I have processed the proper paperwork. I am so exited about my idea and I know there is a need for the foundation I am starting. I also know that I have the passion and drive to make Hope Heals a successful organization. I already have two fundraisers in the works. I can't wait to go 100% public with my foundation. I just want to have my idea protected before I share it with the world. So stay tuned!

A little disheartened ******Edited

2010-04-09T20:52:00.003-04:00

After reading a few comments left on my facebook, I am starting to feel crucified because my FEV1s pre-transplant was 37%. I was very sick and my lung function numbers did not reflect that. The surgeon even said so after the surgery. He told me I had been living on borrowed time with the lungs I had. My left lung was so glued to my chest wall that they needed to go back in after the transplant to clean it up.

My x-ray pre-transplant was so white and cloudy. I was on IV antibiotics 3 out of every 6 weeks. I lost a lot of weight. My oxygen dipped into the low 80s when I walk more than 50 feet. I feel that my FEV1s stayed so high because I did my vest 2 times daily for 30 minutes each, had an hour of manual chest PT and exercised for 20-30 minutes every day. I hope people realize I worked really hard to stay healthy before my transplant. I could of easily stopped doing all of that and let my numbers drop but I didn't want to risk getting really sick. I couldn't do any normal house hold chores. I was always out of breath. My lungs only worked if i was at rest. The rest of the time I struggled for every breath I took.

My cf doctor has many patients that had lower lung functions than me that he is not considering for a transplant because they were not a s sick as me. It is hard to explain my situation because it was out of the ordinary. It took me a lot of convincing before I would even consider being evaluated. Once I was evaluated and had a UNOS score my transplant team and Cf doctor continually talked to me about becoming activated on the list. I hope no one feels that I was undeserving of my transplant because I could blow out 1.11 liters in a second.

I know some of you CFers remember a few people that died last year while being evaluated for a transplant. Their lung functions were in the mid 30s. I know because I chatted with them often. CF is very unpredictable and when the lungs are done, they are done. The scarring on my left side actually spider webbed and trapped the mucus in my lung so it just stayed there infected while scarring the tissue even more. As I got closer to my actual transplant date, I felt worse and worse. I started running fevers almost every day whether I was on IV antibiotics or not. I have faith in God that these lungs came at just the right time. Most of my CF facebook friend have never met me or experienced my CF with me. My friends and family can all verify that I was sick and I needed this transplant.

I often asked my transplant center why my numbers were so high but I needed a transplant. They never had a good explanation so I can't give you one. What they did say was they would not transplant a person that did not need one. They would not list me if I did need to be listed and that UNOS would not give me lungs if my score was not high enough. I had to trust that they knew what they were doing and what was best for me.

****Maybe this is just me over reacting because of the prednisone and anti-rejection medication that is pumping through my body. Or it is me feeling guilty because I got a great new pair of lungs while i know of several others that are still waiting for theirs. Or this is part of the emotions the doctors and nurses told me I would experience. No matter the reason, I felt I needed to keep this post because it is part of this journey.

It keeps getting better

2010-04-08T21:32:00.003-04:00

It has been three weeks since my transplant. Everyday I wake up and can't believe that I feel better than the day before. Yesterday, I had 2 more drain tubes pulled from my chest. Since then, I can't believe how much easier it is to cough. of course, my lungs are in the process of healing so I have old lung tissue and junk in my lungs from the surgery. It feels so great when I cough junk up.

I have so many fun facts to share about all of this. Like, I no longer have nerves going from my lungs to my brain to tell me that I need to cough. I need to feel the junk in my lungs and tell myself to cough. If I don't force myself to cough, then I won't and the crap will just sit in my lungs. Luckily, the stuff in my lungs is not thick and glued on like before my transplant. So when I make myself cough the stuff moves unlike when I had CF lungs.

My transplant center really stresses the importance of exercise post transplant. There are many reasons for this. One, exercise is great for the heart and lungs. I don't think that needs any more explanation. Two, exercise helps keeps the bones strong. With all the steroids and anti-rejection medication, your bones can suffer. In addition to the exercise, I am on Vitamin D, Calcium and Magnesium to help with bone strength. Three, now that my body is not working so hard to breath, it won't burn through so many calories. Many transplant patients gain lots of weight post transplant because of the lower calories that are being used and the medications increase your appetite. So I have been very committed to my exercise routine. Today, I did 2 miles in 36 minutes on the treadmill. I use to dread getting on the treadmill because it was so much work. Now, my poor little legs can't keep up with my heart and lungs. I never thought I would ever say that.

I promise you that I won't keep boring you all with just transplant related stuff but right now that is where I am in this journey. Once I am healed up and living my life to it's fullest, I will share all of that with you. I do not plan to close my blog. This blog and my readers have been a very important piece of my life in the past 3 years.

First Clinic Appointment

2010-04-07T20:04:00.003-04:00

Today is one week since I was released from the hospital. I celebrated the day by going back to Brigham & Women's Hospital for my first post transplant clinic. Though the day was long, it delivered nothing but good news so far.

It started out with blood work at 9am. Then off to get a chest x-ray. After the x-ray, I went to clinic. They took my vitals and the I did my first spirometry test post transplant.

Here are the results:
FEV1 2.28L 75%
FCV 2.68L 76%
FEV1/FVC 85 99%
FEF25-75 2.53L 71%

This might not mean any thing to you but my FEV1 pre-transplant was 1.11L or 37%. I got tears in my eyes when I saw these numbers. I haven't had numbers this good since I was in my early twenties. The best news is this is just the beginning. My numbers should actually peak at six month post transplant.

Dr. Divo came in to see how I was and could not believed how well I looked. He and Dr. Camp decided it was okay to pull 2 of the 3 drain tubes. The last one should come out next week. My staples should come out next week too. They also said my x-ray looked excellent.

We will be doing my 1 month bronchoscopy in 2 weeks.

Right now I am just waiting to see how my blood work came out. If I don't hear anything by tomorrow then everything looks good.

I am taking today of from the treadmill. I am tried from the travel and all the running around the hospital. My goal for tomorrow is 2 miles in row. Wish me luck.

Boston tomorrow

2010-04-06T19:51:00.001-04:00

Tomorrow is my first clinic appointment. They will be checking my anti-rejection medication levels in my blood and taking a chest x-ray to see how the lungs are looking. They will make any adjustment in medications based on how everything looks. Currently, I am on 17 medications. The nice part is they are all pill form so it is quick and easy.

One of the biggest pieces of my recovery is exercise. I did 1.8 miles on the treadmill today. Every day it gets easier and I feel stronger. My oxygen is staying in the high 90% and I don't even get out of breath.

I still have staples and three drain tubes in my chest. I will be happy to have those gone. Then I will know exactly what it feels like to take a deep breath. Every day, I am discovering things that I can do know that I couldn't do before. Simple things like holding my breath. I lay in bed at night holding my breath because I can.

Well, that is about all that is going on with me and my new lungs. I am so happy to be home.

I am sorry

2010-04-02T20:22:00.003-04:00

I realized I haven't been great keeping my blog updated. I have way too many documentaries going. If anyone is ever curious about my status, I update my Caring Bridge page daily. Here is the link: http://www.caringbridge.org/visit/stephaniebriggs.

I am home and loving it. I am getting use to my new routine. I love the fact that I get to exercise everyday. Today, I did 1 1/2 miles on the treadmill and the another 1/2 or so outside.

My transplant team seems to be keepoing on top of my health abd staying in touch with me. They checked my anti rejection levels today and the numbers were a little low so they tweaked the dose. This is very common so you will read me posting about medicine changes a lot.

Tonight my thoughts and prayers are with Piper. She got another call for lungs and is at the hospital right now. Currently she is scheduled to go in to surgery later on tonight. I don't think
I will be able to sleep tonight until I know if it is a go. I know she is strong and is going to come out the end of surgery with positive results. Piper's and mine experience with CF is very much a like. We both got the chronic infections which really started to diminish our quality of life. We were both on IV antibiotics more than we were off. It was so weird how similar our CF was. I really hope that tonight is the night and she will be breathing deeply soon.

Good News

2010-03-30T19:48:00.003-04:00

Brian and I had our family meeting with the doctor and social worker today. I get to go home tomorrow. I can't wait to be in my own house and get some sleep. I will be taking the next few days to catch up on my sleep and get into my new routine. Which will include a lot of new drugs and at least 30 minutes of exercise everyday.

This weekend it is suppose to be beautiful weather in Maine. Brian and I are so excited to be able to get outside this weekend. I am so ready to start living again. I need to hold myself back until I am 100%.

Breathe

2010-03-29T21:56:00.000-04:00

Today has been the day I have been waiting for...the first day that I felt like I had CF free lungs! Enough said.

My view...

2010-03-26T22:18:00.005-04:00

...My Boobs

This is the view of me looking down at my scar! Don't mind the staples, the wires, the nakedness or the drains. That is all par for the course.

Here is what I know

2010-03-26T20:51:00.003-04:00

At 9:00am Wednesday March 17th, 2010, my work phone rang. There was a doctor on the other line. A few minutes later I was discovering he was one of the Pulmonary doctors at my transplant center, Brigham and Women's Hospital in Boston. He wanted to let me know that the surgeon, Dr. Camp wanted him to call me and stay by the phone because they had a pair of lungs they were looking at for me. He said he would call me back in an hour to an hour and a half. So over 3 hours passed...no call. I was told I could eat something light so ate an Ensure. At Noon, I got in touch with the clinic, she called Dr. Camp's cell phone and told me he still wanted me on standby.

At 1:15, the pulmonary doctor called back to say Dr. camp wanted me to head to the hospital. Though, they still did not know if it was a go. We got to the hospital around 4:00pm. After running here there and everywhere I was admitted and sent to the ER. Admitting said I was a go for 6:30pm and ER did not have that information so sat in the ER room. About 20 minutes passed and the ER nurse believed it was a go for 7ish. At this point no lines had been started. A calm just came over me. They went to town. At 7:30pm, I was rolled back to the OR waiting area. At 8:10pm, I remember hearing the surgeon say let's roll!

The next time I remember anything is Saturday March 20th around 2pm. I do know though that I have had a double lung transplant, another surgery for a bleed, I have been in ICU and now in a nice little corner room with a nice view. It has been quite a ride. I will need a lot of help the next few months recovering from this ordeal.

Thank you all that sent positive thoughts and prayers my way. They were definitely heard.

Irish Luk

2010-03-24T07:17:00.002-04:00

I don't know who doesn't know yet but on St. Patty's day I got the call for lungs. It all happened so fast. I didn't know until 8:00pm that it was a go. It was just like an episode of ER. The lungs had arrived and off I went to the operating room. The next thing I know, it is 2pm on Saturday March 20th and I am waking up with tubes and a new clam shaped scare.

One week later, I am sitting in my room waiting for my daily healing routine to begin. I have progressed nicely but cannot wait for the chest tubes to be taken out. They are painful and uncomfortable but I know the doctors will take them out when the time is right. Well, I am getting tired of focusing on the computer and will write more later.

Yesterday's procedures

2010-03-16T12:52:00.003-04:00

So yesterday, I had a colonoscopy and an upper endoscopy done to see if my low iron was cause by some type of bleeding in my digestive system. Good news is things looked great. Bad news still no answer to what is causing the low iron.

The two procedures went very smoothly. Everyone kept telling me how bad the prep was for the colonoscopy. It was nothing. I was in and out of the OR in 45 minutes. When I came to I had Brian laughing. When I start to come to after the anesthesia, I say what ever come to my mind. My filter is shut off. Plus they fill you with air during the colonoscopy so you have to pass it afterwards and there is no way to do it quietly. We just laughed and laughed.

I also realized how much I love my port. When the nurse started my IV, she numbed my vein so I didn't feel the mess she mad of my hand until they pulled the IV. I have a bruise almost that covers my entire hand. WTF!

I was really tired when I got home so I didn't get on the treadmill. So, I must get on it today. I can feel the difference that the exercise is making to my lungs. Plus I feel stronger. I need to keep at it! Last week, I got on it 5 times. My that is my goal this week.

Lung wise, I feel like I am finally at my base line. Let's hope I stay this way for a little while.

2010-03-11T14:46:00.003-05:00

I can't seem to put together a nicely written post. I have tried 5 times this week to create a post that reflects my thoughts. So I am just going to jot them down and a random fashion.

Treadmill! I am back! Today will make day 4!

Yesterday, I had a lovely 2 hour dentist appointment to get a crown. I have put this off for years and figured I have pushed my luck long enough.

Went to the Gastroenterologist last week and get to have colonoscopy and upper endoscopy on Monday. Doesn't that sound like a fun day?

The weather in Maine has been beautiful this week. I am so looking forward to spring.

The IVs must have worked because I actually feel normal, if there is such thing.

Saturday night, i went to a CF fundraiser in portland. It was a lot of fun. I went with Brian and my parents. The event raised about $1500 for the CF foundation. I even got out on the dance floor with my oxygen on.

This weekend it a benefit for my double lung transplant. Maximun Velocity will be doing a stunt show again at the high school that I graduated from. I hope the word has gotten out about the event because the BMX, inline skating and skateboarding trick are crazy. Last year, everyone was super impressed.

Well, that is it for now. I do want to respond to this blog post http://amatteroflifeandbreath.blogspot.com/2010/03/positive-charge-blogger-challenge.html but my brain is not functioning today!

nothing new

2010-03-02T17:58:00.002-05:00

As the days go by, the more I cannot wait for my transplant. I have been trying to live my life the best I can but it seems like when ever I do what I want I feel wiped out and sick the next day. I am just tired of not being able to live the life that I want to live.

I had a busy weekend this past weekend and I am now paying for it. It is so hard to do the things I want to do knowing it is going to wear me down.

I just finished 3 weeks of IV antibiotics and would expect to feel great. But I have been down and out for the past 2 days: Headaches, stomach problems, tired and fevers. I just want to feel like my old self for more than a day.

I am so tired of this. Let's hope I wake up tomorrow feeling like a new person.

Just a post

2010-02-20T18:54:00.003-05:00

Today was a beautiful spring day in the middle of winter. The sun was shining and the temperature was unbelievable. My nurse and I thought it would be a good day to get out of the house. So Ann (my nurse) and I told my husband he was taking me to lunch.

There is a quaint little restaurant in Cornish, ME that we like to go to. We both had soup and a sandwich. It was so yummy. After lunch we went for a ride and then went home.

The rest of the day was pretty uneventful. Brian slept on the couch as I watched movie on the Lifetime Movie Channel. He just left to go to see Johnny A. in Portland with his friend Mike. I guess this guy is quite a guitarist. So I plan on spending my night on the couch, hooked up to my IV medications and watching chick flicks. I know you are all jealous of me right now. LOL.

Tomorrow, my husband is taking his niece and nephews ice fishing. It will be right about the time my IVs are due so I will be stuck inside again. If it is as nice out as it was today maybe I can get Brian to go for a short walk outside with me.

I am trying to embrace each day that I wake up. Though my life is not very exciting, it is my life and I love it.

Questions

2010-02-13T13:18:00.003-05:00

As I sit here hooked up to my IV, I read the blogs of others and wonder why do things happen the way they do?

Why do some get a chance to continue living and some don't?

Why do some just get a taste of living again and others get to indulge in living again?

What is the meaning of all of it?

Does one person contribute more to the earth than another?

Is one person loved more?

Is it just a matter of science?

Do we control our own fate or is there a determined path already chosen for us?

What do you guys think?

Why???

2010-02-05T08:11:00.003-05:00

As I wait for my transplant, I keep asking why did this happen now. Why couldn't my little lungs hold out longer for a new drug that might make a difference. With CF, we all hope for a cure. I did my best to stay health so I could hopefully take advantage of a cure but unfortunately a cure will not help the scaring in my lungs.

Why can't science be speed up. In the past ten years, I have heard so many promising things but none have come to fruition. Like using stem cell to grow new lung tissue to repair scarring. Or gene therapy that could have actually fixed the messed up gene in some one with CF. Now there is a drug in clinical studies that will help reduce sweat chloride levels — a key indicator of CF. This would mean the mucus in people with CF would not be so thick.

Why do I need a transplant when the future could mean something different to many with CF. Is this a pity party? No! Just keep wondering why me? Why now?

Any way that is my though of the day.

The 2nd Annual Dinner/ Dance was a success!

2010-02-02T08:30:00.013-05:00

(Brian and I)

As the title, suggest the 2nd annual New Breath 4 Steph Dinner/Dance was a huge success. First, I need to thank Andrea York for pulling the event together. She is amazing. I knew there was a reason that when we were 4, I told her that she was going to be my best friend. She rocks. Without her, this event would have never taken place.

Me and Andrea

In addition to Andrea, there is a very large list of people to thank:

Shawn York, Kelly Sastamoine, Tracy Glover and Wendy Martin (my aunt) for going out to get items donated for the Pick-a-Prize Auction.
Stereo-Type for donating their time and talent and rocking the house during the dance. Everyone thought you guys were awesome.
My mom, Candi Tutlis and my sister, Tonya Carlton for donating so many wonderful baskets and doing some baking for the desert table.

(Me and my Mom)

The Sauce cooks: Kim Chaisson and Cindy Beedy.
The kitchen crew: Diane Mitchel, Brian Mitchell, Dave Glover, Shawn York and Carol Voilette.
The decorating crew:Tracy Glover, Diana Mulkern, Kim St. Germain and Nicole Glover.
Michelle Curtis, Tonya Carlton, Melissa Tutlis (my sister), Dan Newell, Steve Tutlis (my dad), Connie Tutlis (my Nana), Candi Tutlis(my mom), Diana Mulkern, Kim St. Germain, Nicole Glover, Donnie St. Germain, and Tracy Glover for helping in any way you could during and after the event.

I hope I didn't miss anyone that helped out at the event.

I know a lot of people dropped off baked goods so thank you to all of you.

A big thanks goes out to all the business that donated items for the pick-a-prize auction. Because of your generosity we had over 90 items.

Thank you to the Eagles for donating the hall for the event.

We had a few large donations. So I want to say a special thanks to the Eagle Riders, Precision Manufacturing Solutions, Inc. (and Mike Gallant), Irish Logging and Lazaro's in memory of Mark Ross.

Last but not least, I need to thank everyone that came out to the event. Thank you for opening your wallets to help me out. Your generosity does not go unnoticed.

With everyone's help New Breath 4 Steph raised just about $6000 to help with my transplant related costs.

The night was so much fun. It was great to see friends that I hadn't see in years. Your support and friendship means a lot to me. Of course, I didn't get to see and talk to everyone that came out but there is always next year.

Love you all!

Are you serious?

2010-01-22T10:20:00.002-05:00

So the past few days I have felt crappy. Not like needing IV crappy but just blah! Today, I woke up feeling worse. I am very wheezy, tired, my sinuses hurt, headache, very little voice and I am coughing up a little more junk. I am really hoping this is just a cold and that it will pass soon. The good news...I have no fevers. I just took some cold medicine which I never do but I want to see if I can shake some of these symptoms.

I really want to leave the house this weekend and this will put a damper on my plan to do so.

The tiredness may be from waking up too early again. This week I have been up before 6am every day. I need my sleep!

I really want this pot needle out of my chest so I can take a nice long bath and relax. Oh course my nurse is working evenings so it won't be until much later today. I could of had it removed yesterday but my home health agency sent out a LPN so she could not remove it. That is my luck.

I am in a cranky mood and should just go back to bed but I have too much to do for work. Unfortunately that requires a voice which mine is very limited today. Some days, I cannot win!

Living?

2010-01-21T08:21:00.002-05:00

Since being told that I was in need of a double lung transplant, I feel like I just stalled my life. I need to keep living life while I wait for the call. How do you continue to live life when everything is so hard?

My life consists of eating, sleeping, watching TV, taking medications, chest PT and exercising. I hardly ever leave my house and when I do it is to get more food or medication or go to a doctors appointment.

Before I heard that I needed a lung transplant I did things. It has been so long ago, I don't even know what I did. I know I love to travel, attended sporting events, eat out, visit friends, spend time outside, and spend time with my family.

Today, I am going to put on my big girl panties and start enjoying the things I use to. I know it will be hard but just sitting in my house is hard. I doubt that I will be jumping on a plane to travel to some warm destination but I am going to plan a little get away for Brian and I.

I am going to go to an ice fishing derby with my husband on Saturday. The fresh air and exercise will do me good. Yes, the cold air will sting my lungs but I need to get out of my house. I will just put my oxygen on my face, which I hate to do, and then wrap up in a nice homemade scarf.

I have lost who I am. I need to fight this battle not only physically but mentally, which I think is 100 times harder. So from this day on, I am going to plan one or two activities a week that will help me be me and not someone just waiting for a lung transplant.

Uneventful

2010-01-19T08:44:00.004-05:00

Well, I have have 2 more days of IVs left. My fevers are gone which was the reason I was started on the IVs in the first place. My lungs still feel very junky. Maybe today will be the day I get back on the treadmill. My energy level has been down since starting IVs so hopefully today I will see it increase.

Last week, I went to transplant clinic. Things are stable. I got to have an arterial blood test done. It wasn't as bad as all the other ones that I have had. The RT got it first try. I did PFTs and my 6 minute walk test. The day was pretty uneventful. The highlight of the day was being able to spend it with my dad.

I think my word that best describes the past year of my life is "uneventful." Though I try to live my life the best I can at this phase in my life, it is by far eventful. I cannot wait until I can "live" life the way I am use to living it. I need to decide where my first vacation is going to be after I get my new lungs. My husband and I love to travel and have been unable to for the past three years because of my health. So I pose this question to all my blog readers: Where would you go and why?

IV time

2010-01-07T16:07:00.002-05:00

That's right, time for the lovely IV antibiotics. I have to say how much I love my port. The decision was made this morning to start IVs and I just finished my first dose. I should know by now I can't get much past 8 weeks before needing IVs.

At least I don't feel horrible. I just have my stupid fevers,I am a little more short of breath when moving around and I am starting to cough more junk up. Hopefully, this will be quick and painless. The IVs are scheduled for 14 days, every 8 hours.

I guess I get to drink lots of fluids and sleep a lot. The bright side is, I am not stuck in plastic hospital bed for 1-2 weeks.

Control Freak

2010-01-05T07:53:00.003-05:00

Over the past few years, I have become aware that I am a control freak. When you are facing a double lung transplant, you have to learn to let that go. I am trying but not doing the best job at it.

Since my dry run on my birthday, I have realized there is so much to do before I get my call. These are not things that you would think of doing like packing a bag. These things are asking for help during and after the surgery. I have been told that having a strong social network will help in my recovery. Yesterday, I realized that I have not asked for support from my friends or family. So I wrote an email asking for help. Asking for help is something that does not come natural to me, that is part of being a control freak.

Last night, I was trying to talk to Brian about what he was going to do about work while I was in the hospital and when I came home since I am going to need care 24/7. He replied "Whatever I want to do." His employer is very understanding and will let him change his schedule or take time of without pay. Oh course I replied "What will that be? I need to know so I can make sure I can work out people to be here with me if you go to work" In a very Brian like way he said "Don't worry about it. I will make sure you have someone here to take care of you at all times."

Don't worry about it? Hello, you are talking to a control freak. Do you think I can just let go of this? I need to know. Did I tell you that I am a control freak?

I am trying to let go of this situation and tell myself Brian will take care of all this. This is very hard for me, probably harder than knowing that I am going to be getting a double lung transplant.

I am a planner. I always have all my ducks in a row. I do my finances every day. I know where every penny goes which drives Brian nuts. Knowing this, he wants me to not worry about my care after my transplant. If I had it my way, I would have a sign up sheet with dates and times when people would be here. It would be framed and hanging on the fridge.

Brian is a different breed then me. He goes with the flow. I don't know how to do that. I guess I just need to trust him and realize that is capable of taking care of this for me.

My Birthday full of surprises

2009-12-31T15:05:00.002-05:00

I was sitting home all alone on my 34th birthday so I figured I would go get my hair cut. My appointment was for noon but the hair dresser was running about a half hour behind. So I showed up at 12:30. They told me it was going to be at least another half hour. I figured I had nothing else to do so I waited. At 1:15, I was still waiting and my cell phone rang. It was Andrea. I asked her what she was doing and she said she was just sitting in her car. Of course, I asked where she was and she was in my drive way. Yeah. I gave her directions to the Salon. She got there in about 5 minutes. When she walked in, I gave her a big hug and then my cell phone beep and said I had a new message. I looked at Andrea and asked if she just left me a message. Nope. So I figured I would check my messages. It was Brigham and Women's Hospital waiting me to call ASAP. My face turned white. Andrea helped me get the number down and we paged the doctor back. In a minute, the Doctor called me back and said they thought they had a donor for me but within the 5 minutes of phone tag the donor was not a match. Well, I guess I know where I am on the list. Happy Birthday to me and Happy New Year to all of you!

transplant journey

2009-12-27T22:18:00.003-05:00

So today, I logged on to Facebook to see that Piper, one of my online CF friends got a call for lungs but it was just a dry run (as we CFers call it). Piper and I have been going through this journey at the same time. We have been at the same place with our CF for a year or so. Constant flare ups and nothing seems to help us get better. Reading about her call, made my journey towards a transplant so much more real tonight. We are going to different centers but got listed about the same time. We seem to always be sick together and on IVs at the same time.

One of the thing that has become very clear to me this holiday season is I am ready for my call. I am tired of not living. I feel like the past 2 years, I have just been being. I am tired of having to rest after a shower so I can continue getting dressed and then resting so I can brush my hair and then resting so I can blow dry my hair and I can go on and on. If you asked me 6 months ago, I would truthfully tell you that I was not ready for the call. Now, I can honestly say I can't wait for the call.

I am trying to continue to live my life as normal as I can but it is difficult at times. I have to brag for a minute because today I sang "We are the Champions" on wii rock band with my nephews. I even stretched out a few of the notes. When it was over, I was physically tired. This coming from someone that loves to sing even if I don't always sing in tune. I put the microphone down and coughed my lungs out. Even though it wore me out, singing on the wii made me feel normal for just a few minutes of my day.

Weekly update

2009-12-23T08:04:00.002-05:00

I am so glad that today is my last day of work this week. Then I work Monday, Tuesday and Wednesday and then I am of until after the New Year. Yeah! I need a little down time if that is what you want to call it. I have 3 more Christmas gatherings, my birthday and New years eve within that time.

Last Saturday, Brian and I had my Mom, Dad, Tonya(sister) , Geoff(BIL), Trey(nephew), Chase(nephew), Melissa(sister), Dan(sister's boyfriend), Kassie(niece) and Rheana(niece) all over for a Christmas celebration. I think it was a great time. We filled our bellies, opened gifts, drank a little holiday spirits and enjoyed each others company. I was successful at the beef roast with wild mushroom sauce. The appetizers and deserts were awesome. At the beginning of the day, I was in a bad mood but I think I was just feeling overwhelmed. Once I got the roast cooked, my mood because festive. My family all knows that entertaining can be difficult for me so they all pitched in and did a great job to make the event a success. Oh yeah, I got the earrings that I picked out the week before from Lia Sophia and I had to put them right on. They are very lovely.

Sunday, Brian's Mom and Dad came over for a visit. It was nice and relaxing. We ordered pizza so I didn't have to cook or clean up.

Today, I am working and watching Kassie and Rheana. I can hear them in the other room right now bossing my dogs around. Tomorrow, I need to finish up my Christmas shopping. I have 4 people left to buy for. Yuck.

Christmas day, Brian and I plan to spend the day together. This weekend (weather permitting) we have to travel to 2 different family gatherings.

So far, my health has kept up with the season. Two more weekends to see if it will prevail. Of course, I get tired easy but no new flare ups so far.

Well, that is it around here. In case I get too busy to blog, I hope you all have a very Merry Christmas and a Happy New Year.

Facebook readers: This note is from my blog http://cfsteph.blogspot.com/.

A day in the life of me

2009-12-16T08:06:00.003-05:00

This blog is also meant to be educational to people about cystic fibrosis and organ transplants. I think it is a good time to write a little bit about my typical day.

Wake up tired.
Drink coffee.
Do albuterol via nebulizer.

Cough and spit.
Stop 1/2 way through treatment because I cough so hard that I puke up my coffee.
Cough and spit.
Take a break until stomach settles.
Cough.
Finish albuterol.
Cough and spit.

Do pulmozyme via nebulizer.
Cough.
Drink more coffee.
Cough.
Go to the bathroom and hope I don't have diarrhea or constipation. (TMI, I know)
Cough.
Take handle full of pills including prednisone, nexium, azithromycin, cetirizine hydrochloride, ADEK vitamins, vitamin A, Vitamin D, calcium, iron and stool softener(to offset the iron).

Cough.
Take ultrase mt 18 to help digest fat that I am about to eat.
Eat something so I don't get an upset stomach from the pills.
Cough.
Wait for my nurse to call to let me know when she will be here for PT.
Cough.
Log in to computer and phone system to work.
Cough.
Take ultrase mt 18.
Eat again.
Cough.
Nurse arrives, checks vitals and does chest PT for 1 hour.
Cough and spit. Cough and spit.Cough and spit some more.
Take ultrase mt 18.
Eat again.
Put on oxygen.
Walk down basement stairs to treadmill.
Cough and rest.
Get on treadmill, walk, cough and spit(all for 15 minutes).
Sit and rest before walking back up stairs.
Cough.
Hopefully take oxygen off.
Take ultrase mt 18.
Eat some more.
Cook dinner.
Take ultrase mt 18.
Eat.
Take more pills.
Rest.
Do albuterol via neb.
Cough.
Do pulmozyme via neb.
Cough.
Put on Vest and shake for 30 minutes.

Cough.
Turn up TV because I can't hear it over the vest.
Take ultrase mt 18.
Eat.
Go to bed.
Cough.

So there you have it...a look at my typical day.

Thank you consultants

2009-12-14T07:37:00.002-05:00

Yesterday, Tonya, my older sister put together a lovely fundraising show. She worked very hard to pull it all together in the short time she had. She opened her house for a holiday shopping extravaganza.

She asked several consultants to come and show their products. In return, they all donated a portion of their sales to my double lung transplant fund. It is not just the financial support that I appreciate. I am blessed that they would give their time to help out. I know how busy it is during this time of year. I also am thankful for all the kind words, thoughts and prayers that they offered me. None of the consultants knew me personally but many of their lives had been touch by someone living with cystic fibrosis.

We had representatives from Arbornne, Pampered Chef, Discovery Toys, Longaberger, Lia Sophia and Creative Memories at the actual show. Consultants from Tastefully Simple and Usborne Books sent over products to display and sell. In addition to these vendors, consultants from Mary Kay, Silpada and Scentsy offered a portion of their sales to my lung transplant fund.

I am so touched by the generosity of complete strangers. Thank you all for everything you have done to help me out.

A BIG Thank You to my family!

2009-12-14T07:25:00.003-05:00

I don't always say thank you enough. So today is the day that I will blog to make sure I have said thanks.

Thank you to my husband, Brian who deals with the daily complications of my life with cystic fibrosis. During our time togther, he has seen major changes in my quality of life. I know that some days are harder than others but he never waivers when I need him.

Thank you to my family. My mom, dad and two sisters are always there for me. I appreciate all you do. Thank you for all the work you have done on fundraisers for my double lung transplant. Thank you for driving me to my appointments, carrying my bags, cooking me meals, cleaning my house, visiting me in the hospital, calling to check on me and just being there.

I know that now matter what happens in my life, my family will be there for me.

It's amazing what the internet can do!

2009-12-08T08:33:00.005-05:00

The passing of a CF friend this weekend has made me think about how many people I have met over the internet that also have CF or loves someone with CF. It is amazing how strong the bond is with these people who I have never met face to face.

In 2005, I heard about a website that would help me connect with other people with cystic fibrosis. I figured this would be a good place to ask others questions and educate myself with the newest information in cystic fibrosis. I never thought that through this site I would make friends that I would never meet but cry when I hear of them passing. During the years, the location of where I met up with these friend have change. Now it might be cf2chat.com, facebook, myspace and personal blogs.

Over the past years, I have heard of too many of my CF friends passing. This past year there has been way too many. Though it is hard to hear when one of my friends pass, I am still glad that I got to connect with them via the internet. Every day I log in to read the blogs of all my CF friends or their loved one. These blogs make me laugh, cry, smile and scream with anger. I am so glad that I have other Cfers and their loved ones that I can share the CF experience with. Though you don't know it, you all bring something unique into my own struggle with cystic fibrosis.

If you are reading this on facebook, please visit my blog at http://cfsteph.blogspot.com to read amazing stories of others living with cystic fibrosis in their lives.

First December Post

2009-12-04T07:34:00.003-05:00

Oh December, how I hate thee. Yes, you heard it right, I hate December! Why you ask? It is simple, December completely wears me out. There is always so much to do. By January, I am ready to crawl into bed for a month and not be disturb maybe that is why bears hibernate.

Lets start out the month with how I am feeling and see if feel the same way at the end of the month. Well, I was able to spring out of bed at 4:50am to bring Brian to catch a ride to work. My lungs have a little flutter in the lower left lobe but that tells me that I have air flow which is something that is not always a guarantee. My weight is 111. I am not on any antibiotics though I should be on my maintenance of Bactrum. I am waiting to start that after I see Dr. Z, in case we may decide on a different health routine during my CF visit. I want to try to limit the amount of time I am on Bactrum because it really dehydrates me and makes me feel like crap. Hopefully, we will check my iron levels again next week. I am curious to see if all the iron supplements I have been taking is helping. My only health concern right now is my bowels. I can't find a happy medium. I either can't go or can't stop going. Plus I am very crampy and my bowel movement was an odd color today. I know TMI! So I guess you can say things look good health wise.

This month is very busy. It all starts today. This is what December looks like...
4th wedding
5th Christmas gathering (probably won't go)
7th work meeting
8th Dr. Appointment
10th niece's Christmas play
11th husband's work Christmas party
12th niece's dance recital and another Christmas gathering (if I can make it)
13th fundraiser
18th niece's play and my work Christmas gathering
19th having my family over for a Christmas celebration
24th Christmas eve, may travel (2 hours) to hometown to visit our grandmothers
25th Christmas
26th mom's house for a Christmas gathering (travel 2 hours)
27th brother in law's house for Brian's family gathering (travel 2 1/1 hours)
31st My birthday and New years eve.

Plus I need to decorate, get my shopping done, wrap gifts, work, get chest PT and get my butt on the treadmill. There is also another work and family gathering but I don't know the dates of those yet. So much to do and so little time to rest. I am sure I am forgetting other events but I am overwhelmed just thinking about all this. Calgon take me away!

The Day After

2009-11-27T09:36:00.002-05:00

Today is the day after we all gave thanks, surrounded ourselves with loved ones and filled our bellies with delightful food. So what does that mean? It means the hustle and bustle of the holiday season has begun. During this busy, time let's not forget everything that we were so thankful for yesterday.

I had a great Thanksgiving Day. Brian and I headed to my sister, Tonya's house. The food was great but the company greater. During the meal, we had a lot of great laughs. Nothing was rushed. Everyone just went with the flow. I think it was the most relaxing Thanksgiving Day that I have had in a long time. Of course, I couldn't help but laugh when the meal done the woman were in the kitchen cleaning and all the men were on the couch watching football. How typical!

For me, today the festivities continue. Brian and I have been invited to another Thanksgiving day celebration and then I plan to take ride to visit Kim and Diana before Diana heads back to Ohio.

I am so amazed how fast a weeks vacation flies by. In a few more days, I'll be back to the grind. Trying to get everything done in a day that needs to be done. I was really hoping to be rested before going back to work but I have not slept well the past few nights. So I guess I'll go chill out.

Thankful #10

2009-11-19T13:04:00.004-05:00

Today, I am thankful for all my amazing friends. I don't want to name any names because I know I will forget someone very important to me. I am truly blessed with a great circle of friends. The out pouring of love that I have received since I found out that I needed a double lung transplant has been incredible.

I have friends from all over. Friends from childhood, grade school, high school, college, my home community, my current community and my work place. I have also blessed with a great community of Internet friends that I have met from cystic fibrosis and transplant networking sites that I have belong to since 2005.

Each one of my friends bring something unique in to my life and I am glad that I am friends with each and everyone of you!

Here are a few fun pictures!

Thankful #9

2009-11-18T09:13:00.004-05:00

Today, I am thankful for my wonderful sisters. They are not just my sisters but they are my best friends. I know if I need anything either Tonya or Melissa would do what ever they could to help me out.

Tonya is such a beautiful person inside and out. I know I can tell her anything and she is not going to judge me. I hope she feels the same way. I love that she is willing to take a day off from work to sit at a boring transplant appointment with me to make sure that I am telling the doctors everything they need to know.

Melissa makes me proud. She has come so far in her life given the challenges that she has had in front of her. She is always willing to go out of her way to help me out. I love that she is willing to bring my bags of groceries in to my house while it is pouring out and she does it with a smile. I also love that she will come by the hospital (which is out of her way) on her way to work and bring me drinkable coffee.

I know whatever I am faced with my sisters will always be right by my side to help me get through it. I love you both more than I could ever express.

Thankful #8

2009-11-17T08:47:00.004-05:00

Today, I woke up not really thinking about what I was thankful for today but while I was watching the Today Show it hit me. Today, I am thankful for my mom and dad.

You are probably wondering why this hit me while watching the Today Show. Well, it was the story about the 5 year old missing girl in NC that was found dead and her mom is in jail for selling her for child slavery. As I was watching this report, I could feel my blood starting to boiling and then they announce that the mom is in protective custody in jail, not just to protect her from the other inmates but because she is also pregnant. Wow! I started shaking from anger.

Okay now back to why I am thankful for my parents.

Reason #1: They have never given me or my sisters anything thing but unconditional love.

Reason #2: They would give any one of their daughters the shirt off their backs if that was what we needed.

Reason #3: When we found out that I had Cystic fibrosis at age 12, they never treated me any differently than my sisters. They never held me back because of my CF. I think it only make them push me harder.

Reason #4 They are not only my parents but they are also my friends.

I could go on and on about why I am thankful for my mom and dad but I don't want to get too sappy. I have been blessed to have such great parents. After seeing so many reports on the TV about ungrateful and unloving parents, it makes me see how lucky I am to have the parents I have. I love you mom and dad!

Thankful #5, 6 & 7

2009-11-16T14:59:00.008-05:00

I am not on the computer much on the weekend so I didn't have a chance to blog my #5 and #6 so today I will do those along with #7. Drumroll please...Today I am thankful for Tucker, Tess and Ruby. These are my adorable german short haired pointers. I love them for putting a smile on my face everyday. The each have their own unique personality. Tucker is goofy and fun. Tess is the serious hunter that loves to give kissses directly on the lips. Ruby wants all people to herself. She is an attention hog. So here are a few pictures of my #5, 6 and 7.

Tess

Tucker

Ruby and her pups

Ruby

Tucker

All three and Brian

Tess

Thankful #4

2009-11-13T10:22:00.004-05:00

After reading http://runsickboyrun.blogspot.com today, it was easy to write about what I am Thankful for today. I am thankful for Mr. Brian E. Briggs AKA my husband. We recently celebrated out 10th wedding anniversary but from our first official date, I knew we where meant to be together.

We have been through so many things together and we never lost faith in our love. Anyone that is married or has been married knows it is not always a walk in the park. No matter what we have faced we have tackled it together. My favorite thing to hear is "Brian loves you so much." He wears his love for me on his sleeve which can make him very vulnerable at times. I wish I showed the rest of the world how much I love him as easy as he shows his love for me.

I remember clearly the first conversation we had about my cystic fibrosis. I brought up that I had CF and his replied "That doesn't change the way I feel about you. I like you for you." He was the first boyfriend that didn't run away. Five years later, we where happily married.

Thankful #3

2009-11-12T09:41:00.002-05:00

Today was an easy day to come up with something that I am thankful for. Good Health Days! Anyone with CF or a chronic disease can tell you how important these days are. It gives you hope that there are more good days to come.

Today, I woke up and I knew it was going to be a good health day. I was up at 5:30am and felt rested. That is a great feeling. I drank a cup of coffee. Did my albuterol and put my oxygen (3L) on to get on the treadmill. I went down stairs and did 7 minutes on the treadmill at 2.5. I felt great. I was not winded or exhausted. I actually felt energized.

So today, I am extremely thankful for good health days.

Lot on my mind today

2009-11-11T12:32:00.003-05:00

I felt I needed to blog to get stuff off my chest. I am going to just post random things that are on my mind so I can stop thinking about them.

*Insurance!!!! Our insurance at work is going through some big changes. Right now I have no idea what these changes are. I am stressing out. I cannot be worried about my health insurance.

*PT! I just had a physical therapist come do an assessment on me. I cannot believe how things have changed physically. I walked on the treadmill for 5 minutes at 1.8 speed. To me, that is just pathetic! Our goal for this week is to repeat this 2 time a day every day and try to increase to 3 times a day.

*Iron! I am still very tired. I just want my iron levels to go up! This sucks.

*Vacation! I decided today to take the entire week of Thanksgiving off. I didn't take any time off during my IVs to rest so I am taking time off for Thanksgiving. I feel it is well deserved.

*Winter! I am dreading winter already. I hate the late of sun light. I hate all the colds and flues and germs. I hate the cold and snow. Can we just skip winter and go right to spring?

*Cabin Fever! I just realized I have not left my house since Halloween. How depressing is that?

Here are some good things:
*I got my H1N1 shot
*Diana is coming home the week of Thanksgiving
*I am done my IV antibiotics and Bactrum as of today
*It is nice out today
*My lungs feel better than before I started the IVs

Though my post sounds bleak, I am still looking at things positively. At least I have insurance. I am on the right track to get back in to physical shape. I got all my flu vaccines so in 2 weeks I can feel more comfortable leaving the house. Winter is only 4 months long. And the best part...in a week and 1/2 I will be on vacation.

Thankful #2

2009-11-11T09:18:00.001-05:00

Today, I am thankful for our armed forces. I am thankful for all the men and women that put their lives on the line everyday to keep us safe. Enough said. Happy Veterans Day!

Thankful #1

2009-11-10T10:29:00.002-05:00

I am going to follow the trend of the month and try to post everyday until Thanksgiving. My daily post will contain one thing that I am thankful for. These are not going to be in any order, so don't get your panties in a twist if you are not first.

Today, I am thankful for my home health nurse, Ann. She is so dedicated to her profession. She truly care about each and everyone of her patients. She often goes above and beyond her job description. She comes in my house every day with a smile on her face. She patiently sits and waits for me while I finish up whatever I am doing. She will check and make sure my dogs have food and water. She spends a few minutes every day giving each one of my dogs attention, which they absolutely love. Last winter, I have to leave for an appointment. She would not let me clean my car off. She went and removed all the snow off my car. She also won't let me get away with anything, health wise that is. If I have been really sluggish or running fevers on consecutive days, she puts a call into my CF nurse as soon as she gets to her car. She tells me all the time, I am not allowed to get sick on her watch. She comes everyday and pounds on my chest for an hour. She never complains that this is not part of her job. Trust me other home health nurses have. She pounds away for an hour while entertaining me with stories. So for these and many other reasons, today I am thankful for Ann!

That time again-long post

2009-11-07T09:56:00.003-05:00

I just realized I haven't posted in a while. I am such a bad blogger. I have no excuse.

Lots have happened since the last time I blogged.

Brian and I celebrated our 10 year anniversary. We went out for a nice dinner together. He bought me a dozen of red roses which are my favorite and was also the flower of our wedding. It was a great day.
I started running unusually high fevers like 103.2 high. The fevers continued for days so I called the Doctor. With the help of my port, I started home IVs the same day. My home health nurse came and accessed my port at 2:00pm and my home medical company had my IV meds here by 5:00pm. Got to love home health care!
When ever I go on IVs they run a bunch of blood test to see what is going on. Of course my white blood count and inflammation proteins were high. That is no surprise. My hemoglobin level were low. Levels should be over 12 and mine were 7.7. So more blood work ordered to check my iron. Iron levels should be 65-125 and mine....12! Not good. So I am on iron supplements 3 times a day to try to bring up my levels. If that doesn't work, I'll need to get some IV iron. I have not heard good things about that so trying my best to be good about taking my iron pills and eating high iron foods.
Monday, after a week of IVs and bactrum, I started running a fever again. This time 101.7. I was threatened to be hospitalized but said give me a day to see if it goes away. It did! 5 days no fever.
I have had horrible headaches for the past 2 weeks. A lot of things could be contributing to theses: IVs, low, iron, dehydration, low blood pressure, stress from coughing. Take your pick.
Today, I am missing a bridal shower. I really wanted to go! Unfortunately, my health did not agree. I just can't physically drive for 4 hours. I am very weak. I am sure my iron levels are not helping the cause. Plus, I need my nursing visit which couldn't be scheduled around the shower.
I got a call at 8:00am this morning from my sister to tell me that my Nana had a heart attack last night and is in ICU. What great news to wake up to. Of course, she is also 2 hours away from me. I am hoping they move her to CMMC, which is only an hour away from me so I could go see her. She is not coherent. She didn't even know who her daughter was. I want to call her but I don't know if I could handle it if she didn't know who I was.
I am scheduled to get my H1N1 vaccine on Tuesday. I haven't been able to have it because of my fevers and IVs. My home health nurse has been saving it for me. She is great. She also saved a regular flu shot for my husband. The best piece is she comes right to my house to give them to us and no waiting in line!
A CF friend that I met online several years ago passed this week. This hit me hard. She was just starting to be evaluated for a transplant. She went down hill to fast and passed. It is scary how fast CF can take a life.

I guess I didn't realize how much I had on my mind. No wonder I have had headaches. My IVs are scheduled to end on Monday. So this weekend, my plan is to take it easy so my body can rest and catch up. Please keep my Nana in your thought and prayers.

I love this commercial

2009-10-20T14:53:00.002-04:00

Do your eyes sit wide
Does your nose turn to the side
Do your elbows kind of crinkle
Do your knees sort of wrinkle
Does your chest tend to freckle
Do you have a crooked smile
Do your eyes sit wide
Do your ears sort of wiggle
Does your hair make you giggle
Does your neck grow long
Do your hips sing a song
Do your ears hang low

Here is the link: http://www.youtube.com/watch?v=FowHP01j-Oo

Will today be the day?

2009-10-12T09:38:00.002-04:00

I am trying to figure out what to do on my day off. I have a million things that I could do but nothing is appealing. My nurse will be here around 11:00 and I haven't felt 100% for the past few days. So I keep asking myself how can I turn this around? So what do I plan to do? Get on my treadmill. Yesterday, I did 3 sessions of chest PT and didn't feel like it was enough so today I will do my vest for 1 hour, have manual Chest PT for an hour and do my treadmill for 20 minutes. As soon as I am done posting this, I am going to go down and get my ipod so I can charge it. Maybe I will down load a few new songs to it. I think I am tired of the current songs on it. Any ideas to what I should download to to get me through 20 minutes of hell? Suggestion needed!

That is it for today!

Things that make you go hmmmm.

2009-10-09T07:36:00.004-04:00

This will be very short:
Obama=noble prize?
NASA = millions of dollars to send a probe rocketing into the moon?
Redsox lose to Angles in game one?
I am sitting here scratching my head...enough said.

Edit: one more...
Maine state shut down days. For those who are not from Maine, these are days that 90% of the state workers must take off without pay because the state of Maine cannot budget money. Why I think it is questionable...these days are always added to a holiday weekend. How convenient?

CF Appointment

2009-10-08T08:43:00.005-04:00

Well, I had my CF appointment on Tuesday. Everything is stable. Lung functions are just about the same as last week and 2 months ago. My weight is great for me. I have been bouncing around 112-115 pound for the past 3-4 months. I think the extra weight has helped me stay healthy. I have been pretty active lately and not getting worn out. It is a very nice feeling. I think I have found a balance of what I can do and when. I think I am just about ready to get my butt on the treadmill. I know I keep saying that. My husband has been working on our basement so I am just now able to get to the treadmill.

I had an awesome time at the patriots game. We had prime parking because of my handicap parking pass. I could have thrown a rock and hit the stadium. We tailgated while listening to a live band. My brother in-law came over to our spot and couldn't believe it. He goes to every game. I told him it was the "Stephanie Special". Of course, our company was great. We always have a great time when we hang out with Bill and Kasey. I am so glad they invited us to join them.

Saturday night, we went to dinner with Andrea and Shawn. We went to the Texas Roadhouse. I was not expecting much in the terms of food but I was pleasantly surprised. I will go back just for ribs and margaritas. This from the girl that hardly drinks. It was great to spend sometime with Andrea and Shawn. My husband is a great entertainer and made us laugh all the way through dinner.

It felt so great to go do things that healthy people do and the best part...I didn't get sick!!!!!

I have been enjoying this fall weather. My niece, Kassie, is playing soccer and I love getting out and going to her games. I am so proud of the job she is doing for her first year of playing. She is willing to play any position...even goalie. She has a great team attitude. I love to see this. She has a game on Saturday so I plan to go watch her. It is great that all the game are within a 10 minute drive from my house so it is really easy for me to go. I love having my nieces so close.

For all you gummie lovers

2009-10-02T17:34:00.008-04:00

I just found the best gummies ever...Sluggles Gummies by Wonka. I saw an ad on TV for them earlier this week and had to run right out to get them. I actually forgot I bought them last night or I would have broken in to them sooner. The are so soft and flavorful. Any gummie expert knows what I mean. You have got to go out and try them. They are addicting so beware. I opened the 8.5 oz bag a few minutes ago and they are almost gone. I am going to be so sad when they are gone. Brian laughed at me when he took them out of the bag...he knew I would run right out and get some.

Weekly update

2009-09-30T14:35:00.003-04:00

Not too much going on here. I just finished my monthly maintenance antibiotic. So as of now, I am antibiotic free accept for the azithromycin that I take 3 times a week. I am starting to get the low grade fevers in the morning and I have a flutter in my left lung that is making me cough. I am giving myself until Tuesday to make a decision about IVs. I go to see my CF doc that day.

This weekend I am suppose to go to the Patriots game with some friends. Unfortunately, they are calling for rain. They are reporting a 30% chance of rain and say "few showers". Do I want to risk sitting in the rain for 4 hours and get soaked? But then I think, this is probably a once in a life time opportunity for me. I really want to go. What do you think?

Tomorrow, I go to a recognition lunch at the College. I have worked there for 10 years. Since I work from home 98% of the time, I am excited to see all my co-workers. I am a little gun shy about going to campus with all the Flues going around but I will just use a lot of purel, keep a mask with me, and keep a 3 foot rule with anyone that is not feeling well. Good news is I already got my flu shot. I just need the H1N1 shot. Hopefully that will be available soon.

Saturday, I plan to go to dinner with my friends Andrea and Shawn. Sunday, I am hoping to go to the game. I think it is worth the risk. What's 30%? I will wear rain gear and bring a change of clothes for the ride home. It is suppose to be warm so at least I don't need to worry about the temperature.

Well, I better get back to work.

Don't let yesterday use up too much of today.

2009-09-23T08:06:00.003-04:00

I had an interesting talk with one of my close friends last night. It was about the past. She brought up some events that happened in the past and wondered if she would of done things differently. I reminded her of this quote "Don't let yesterday use up too much of today" that I had posted on facebook a few days earlier. After I hung up, I realized how we both interpreted the same events in the past in 2 different ways. Dear friend from this conversation, if you read this call me and I'll tell you what I mean.

I have to remind myself of this quote often. My entire life, I made 110% effort in my health and now everyday I am reminded that my lungs are crap. I think we can always look back and regret some decisions that we made but we can't change it so why waste time being upset about them.

What I have done in the past when I have a regret is ask myself "how can I change my life now to make the situation better." For example, in high school this same friend and I grew apart. Though we were always in each others life the amount of time we spent talking and seeing each other diminished. We both went to different colleges, made new friends and I moved to a different town. I felt really bad about where this relationship went. We were not just best friends, I considered her my third sister. She had always loved me even when I spit on her pillow. So a few years ago, I realized I needed that relationship back. She was one of the first people I opened up to about my feelings of needing a transplant. Yes, we don't see each other nearly as often I would like but we talk several times a day either by phone or instant messaging. I realized that maybe I didn't put enough effort into our relationship back in high school and college so I am trying to make up for. Though, we both have our quirks, we have both accepted each other for who we are.

The interesting thing in a friendship is what one person thinks is a fault, the other may find it an asset.

So the moral of this blog is...I couldn't change the past but I hope I learned from it so I can make a better future.

So what regret are you going to learn from today?

Not much going on

2009-09-16T09:14:00.002-04:00

Life has been pretty uneventful. I guess that can be a good thing. Health wise I feel good. I start my maintenance antibiotic tonight. Yes, the dreaded Bactrim. So I get 2 week of hellish side effects. Things have been very stable. No major fevers, coughing spells or episodes of being out of breath. I haven't really needed to use my oxygen. I have been using it only when I have been walking for exercise. The stuff I am coughing up looks pretty good for a CFer.

I have been keeping busy by going to my niece's soccer games. I love soccer. It is so much fun to watch Kassie. Every game she is getting a little bit better. She is 10 and this is her first year playing. Watching her makes me miss my healthy lungs. I want to be out there on the field with her. I have been doing different soccer drills with her with my oxygen on. I think I am going to do a 2 on 2 game tomorrow with her. That should be interesting.

Last weekend was filled with family. My mom came down and spent the night Friday. On Saturday, I went to Kassie's game, then of to my nephew Trey's birthday party and to end the night we met my Brother in law, Troy and his family for dinner. Sunday, I took the day to relax.

This weekend will be more of the same. Kassie's game and then I am meeting my cousin, Angela for lunch. I can't wait. I only saw her briefly back in January at one of my benefits. We have been trying to get together since.

Yesterday, I went to have a filling done that I needed fixed before my transplant. I was so nervous. Once it was done, I couldn't figure out why I had myself so worked up. It was nothing. So I made an appointment for a crown that I also need. I have been putting it off for years. The tooth is holding together but with my luck it will crumble during my transplant.

Like I said nothing too exciting here but figured I would just update everyone that all is well with me.

Thankful Tuesday

2009-09-01T13:09:00.003-04:00

While I was taking a bath this morning, I started thinking about how thankful I was for the Internet. It has brought me so many CF friends, it has helped me keep in contact with friends and family and it has reconnected me to a lot of friends that I lost touch with.

I am thankful that the sun is shining today and there is no humidity. It is a good breathing day.

I am thankful for baths. I just love taking a bath.

I am thankful for my dogs as they always find a way everyday to make me laugh or smile.

I am thankful for a great husband. I didn't feel like cooking last night because I had a low-grade fever so he made me a chicken sandwich. Unfortunately, I woke up in the middle of the might because the sandwich did not agree with me. When I got back in bed, he asked me if I was okay. that made my night. I know it was the chicken sandwich because the same thing happened to me Saturday night after eating one.

I am thankful for the Lifetime channel. It always gives me that good cry when I need it or it helps me pass the time when I am home alone with nothing to do.

I am thankful for candy...Enough said.

I am thankful for coffee or any other caffeinated beverage.

I like to do these types of posts every now and then so we can all remind ourselves of the goods things in life.

Swine Flu

2009-09-01T12:56:00.002-04:00

Here is some information I stole from Love to Breathe blog. (I hope you don't mind) I thought it was a very informative article. Many CFers and transplant recipients need to be cautious of the swine flu because it can effect them differently than the normally population. So please cover you mouth when you cough and wash your hands.

By MIKE STOBBE, AP Medical Writer

Since it first emerged in April, the global swine flu epidemic has sickened more than 1 million Americans and killed about 500. It's also spread around the world, infecting tens of thousands and killing nearly 2,000.

This summer, the virus has been surprisingly tenacious in the U.S., refusing to fade away as flu viruses usually do. And health officials predict a surge of cases this fall, perhaps very soon as schools reopen.

A White House report from an expert panel suggests that from 30 percent to half the population could catch swine flu during the course of this pandemic and that from 30,000 to 90,000 could die.

So how worried should you be and how do you prepare? The Associated Press has tried to boil down the mass of information into 10 things you should know to be flu-savvy.

No cause for panic.
So far, swine flu isn't much more threatening than regular seasonal flu.
During the few months of this new flu's existence, hospitalizations and deaths from it seem to be lower than the average seen for seasonal flu, and the virus hasn't dramatically mutated. That's what health officials have observed in the Southern Hemisphere where flu season is now winding down.
Still, more people are susceptible to swine flu and U.S. health officials are worried because it hung in so firmly here during the summer — a time of year the flu usually goes away.
Virus tougher on some.
Swine flu is more of a threat to certain groups — children under 2, pregnant women, people with health problems like asthma, diabetes and heart disease. Teens and young adults are also more vulnerable to swine flu.
Ordinary, seasonal flu hits older people the hardest, but not swine flu. Scientists think older people may have some immunity from exposure years earlier to viruses similar to swine flu.
Wash your hands often and long.
Like seasonal flu, swine flu spreads through the coughs and sneezes of people who are sick. Emphasize to children that they should wash with soap and water long enough to finish singing the alphabet song, "Now I know my ABC's..." Also use alcohol-based hand sanitizers.
Get the kids vaccinated.
These groups should be first in line for swine flu shots, especially if vaccine supplies are limited — people 6 months to 24 years old, pregnant women, health care workers.
Also a priority: Parents and caregivers of infants, people with those high-risk medical conditions previously noted.
Get your shots early.
Millions of swine flu shots should be available by October. If you are in one of the priority groups, try to get your shot as early as possible.
Check with your doctor or local or state health department about where to do this. Many children should be able to get vaccinated at school. Permission forms will be sent home in advance.
Immunity takes awhile.
Even those first in line for shots won't have immunity until around Thanksgiving.
That's because it's likely to take two shots, given three weeks apart, to provide protection. And it takes a week or two after the last shot for the vaccine to take full effect.
The regular seasonal flu shot should be widely available in September. People over 50 are urged to be among the first to get that shot.
Vaccines are being tested.
Health officials presume the swine flu vaccine is safe and effective, but they're testing it to make sure.
The federal government has begun studies in eight cities across the country to assess its effectiveness and figure out the best dose. Vaccine makers are doing their own tests as well.
Help! Surrounded by swine flu.
If an outbreak of swine flu hits your area before you're vaccinated, be extra cautious.
Stay away from public gathering places like malls, sports events and churches. Try to keep your distance from people in general. Keep washing those hands and keep your hands away from your eyes, nose and mouth.
What if you get sick?
If you have other health problems or are pregnant and develop flu-like symptoms, call your doctor right away. You may be prescribed Tamiflu or Relenza. These drugs can reduce the severity of swine flu if taken right after symptoms start.
If you develop breathing problems (rapid breathing for kids), pain in your chest, constant vomiting or a fever that keeps rising, go to an emergency room.
Most people, though, should just stay home and rest. Cough into your elbow or shoulder. Stay home for at least 24 hours after your fever breaks. Fluids and pain relievers like Tylenol can help with achenes and fever. Always check with a doctor before giving children any medicines. Adult cold and flu remedies are not for them.
No swine flu from barbecue.
You can't catch swine flu from pork — or poultry either (even though it recently turned up in turkeys in Chile). Swine flu is not spread by handling meat, whether it's raw or cooked.
Source: U.S. Centers for Disease Control and Prevention, New York City Department of Health and Mental Hygiene.
___
On the Net:
CDC swine flu basics: http://www.cdc.gov/H1N1flu/qa.htm

Bactrim

2009-08-28T09:06:00.003-04:00

All I can say is I hate bactrim. It makes me feel like crap the entire time I am on it. First it starts with the itching. That last like 2-3 days. Then I get very fatigued. Next hot flashes and headaches. I am blessed with 2 weeks of this. One week down, one to go. It is going to get the best of me. I am very irritable right now so don't mess with me.

I have been watching my nieces this week and they probably think I am such a bitch. I have not let them get away with anything. On top of all the side effects from the Bactrim, I am also not sleeping well. I need 8-10 hours of sleep or I am a bear.

This weekend will be a weekend of rest. Brian is going to camp to do some cement work. Hopefully, it won't pour like they are saying it is going to.

Not too much going on here. I am still waiting for new lungs and trying to stay healthy. The air is much better then it has been. I can actually breathe and not need to run my A/C. I love fall weather in Maine.

What the???

2009-08-21T11:13:00.003-04:00

Well, I went to my CF appointment. Shouldn't I be getting sicker if I need a transplant? My lung functions were good for me. Normally as I do PFTs they get worse. Not today. The more I did the better they got. My FVC =62% and FEV1=42%. I continue to boggle my CF docs mind.

So of course I asked, "Should I still be active on the transplant list." His reply "Yes." So then I asked "What if i got my FEV1s into the high 40s?" He said "At that point I might be comfortable letting you go inactive."

Dr. Z made a good comment to me. He said that he has a lot of patients that have worse lung functions then me (that he hasn't even considered for a transplant) but I have scarring in a unique area which worries him. He does not want me to get pneumonia in my lower left lobe because it could be very bad. Plus, I need oxygen with exertion which plays a role of keeping me active on the transplant list.

So where do I go from here? I guess I can work my butt of trying to raise my numbers more or I can do what I have been doing and just wait around for a call for lungs. Oh yeah, he also made another interesting comment. He said "I doubt the call will come anytime soon." I am so confused.

Anyone that knows me knows that I am not a quitter and will work my butt off to see if I can put off the transplant. I also have to put a lot of faith in God that the call for lungs will come when it is meant to be.

I better get back to work.

Weekly update

2009-08-20T11:00:00.002-04:00

Not much to update on. I had a great weekend with my family. Friday, I went to Funtown/Splashtown with my mom, my sister and her 2 girls. We had a blast. I went on all the rides. I didn't even need my oxygen until we were walking back to the car. It was 9pm and the humidity was increasing. All the walking and rides, really shook crap up in my lungs. I have been coughing so much I have laryngitis.

Saturday was the perfect beach day so I went to Old Orchard Beach with the same crew. I wish I could spend every day at the beach. It was another awesome day. In the afternoon, we took the girls school shopping. The stores all had A/C and there were no crowds.

Sunday another great day. Everyone but Brian went to my other sister's house. Tonya has a beautiful pool. So we all hung out by the poolside for the day. Brian was up at camp doing some more renovations. I think he plans on going up this weekend as well.

I spent most of this week resting and working. I started my 2 week course of Bactrum. I am on it for 2 weeks and then off it for 2 weeks. I hate it. It makes me itch for the first few days and I can't go in the sun. I don't get a rash or hives but some places itch so bad it burns.

I have a doctor's appointment tomorrow. I know I am at my baseline. I don't expect to learn anything I don't already know. I am going to see if Dr Z can think of anything new we can try to mix up my treatments. I need change. He might say what we are doing is working so let's keep it that way. I still think we are missing something big.

Well, that is it for now. I'll let you know if anything exciting happens at my doctor's appointment.

That time again

2009-08-12T14:10:00.003-04:00

It is time to blog again. I am inspired by Ronnie at http://runsickboyrun.blogspot.com/. He does such a great job blogging everyday. My life just is not that exciting to blog every day.

I had a great day on Saturday. I went to a family reunion and saw a lot of family I haven't seen in a while. After that I went to my niece's, Kassie's, softball family get together. She tried to kill me. She asked me ever so nicely to play in the softball game. At first, I said no way but they needed another player so I went for it. Keep in mind I have never played softball in my life and I can run without my oxygen. First time up, I hit the ball and ran to 1st base. Next batter hit the ball, I ran to 2nd. Next batter hit the ball, I ran to 3rd. Next batter hit, I ran home. Huffing and puffing, I has my sister go get my oxygen. Where have my lungs gone?

I had a long post and it got deleted before I could post it. Thing like that really tick me off.

The week I am watching my nieces and working. Last night my niece, Rheana spent the night. We had a her favorite pasta salad for dinner. Then I let her have an ice cream sundae and a s'more. I love spoiling my nieces and nephews. We also had a fire in the chimenea. It was a nice evening.

Tomorrow, I am hoping to see my oldest friend, Andrea. We have been friends since we were 3 1/2. I haven't seen her in a while and miss her.

Friday it is Funtown with my nieces. Funtown is an amusement park that I try to bring my nieces to every year. Soon I'll be able to bring my nephews. Does any one have any experience with amusement parks and riding on the rides with oxygen? I need the oxygen to keep up with the kiddos but I still want to go on he rides. Advice please!!!!

Health wise, I am feeling pretty good. One week off IVs and no major fevers. Fingers crossed I can last the summer without needing IVs again.

Gotta go!

My Evil Head

2009-08-06T12:15:00.005-04:00

Here is a picture of my port not accessed. It is still bruised from being placed. You can also see the 2 incisions that were made when they put it in place. You can also see where the needle was inserted. And stop laughing at my tan line!

I promise that will be the last picture of my bare chest that I will post. The good news is you cannot see the port when I wearing clothing and some of my bathing suites even cover it.

Oh and one correction, the evil head is for Mike's Hard Ice Tea not Lemon Aid.

I hope you all had a good laugh today. Keep smiling.

Puppy Pictures

2009-08-06T09:20:00.003-04:00

I was just looking at some old pictures and found these of Tucker when he was just a puppy. I think he was the cutest puppy ever. Of course, I am a little bias.

Now don't you think he was adorable?

I had planned on posting some pictures of my port when it is not accessed but my the memory on my camera phone is full and I can't find my digital camera any where. Once I find it then i will post some. Brian and I call it my "Mike's Hard Lemon aid evil second head". Does anyone remember that commercial? Here is the link to it: http://www.youtube.com/watch?v=wWdQnp56cK4. Hey if you can't laugh at yourself...who can you laugh at. I'll post some pictures later.

Time to blog again

2009-08-05T14:51:00.002-04:00

I haven't had that much to write about so I haven't been very good about posting. Today was the last day of my IVs. I get my needle pulled when my nurse get here. Yeah.

It is very humid in Maine today. I went outside for about an hour but just sat at my patio set on my deck.

This past weekend I went to my sister's and floated around her pool. Since my port is accessed, I can't actually go swimming. Hopefully once the needle is pulled my fevers will stay a way for a while so I can actually get some summer time activities in.

I am hoping that we will have a few nice days next week. I would like to get to Old Orchard Beach and take my nieces to Funtown with my sister. I have my nieces next week from 7am to 1pm while my sister works. I normally watch them during the summer but my sister was out of work all summer because she broke her ankle and shredded ligaments. Next week is her first week back to work.

I think I am going to go inactive on the transplant list during Labor Day weekend so I can go to camp with Brian. I took Thursday through Friday off from work.

I am starting to get the feeling I wil be on the list for a while. It is just a hunch.

I need to get my ass back on the treadmill. First I need my husband to move stuff in the basement so I can get to it. I need to move stuff around in my lungs.

Well, my nurse just pulled in. Time for Chest PT and have my needle pulled. YEAH!

My port

2009-07-24T12:55:00.003-04:00

I know a lot of people are unfamiliar with ports so I will share what I know. Here is a great link showing a picture of a port and placement: http://www.diamondblackfananemia.com/links/mediportinfo2.pdf.

My port was placed on my left chest a few inches below my collar bone. This is a picture with the port accessed.

I don't know what it will look like when it is not accessed. The port will stay accessed the entire time I am on IVs. The needle gets changed every 7 days. I will have my home health nurse do that because I don't think I can pick myself with a needle. The reason this is better than a PICC is I can have my home health nurse access it when I need it and I don't need to go in the hospital just to start IVs.

So far I have done everything that I normally do. I even did my vest and had no problems with it.

In other news, I am going home today. I have a IV due at 2pm and I am going to get chest PT. After that, I can spring this joint. I will be on home IVs for another week and a half.

I cannot wait to be at home with my puppies and sleep in my own bed.

Another day

2009-07-23T18:23:00.001-04:00

Well, for those who don't know I am in the hospital. I was running pretty high fevers for a few days and figured it was time for another PICC and IV antibiotics.

After on failed bedside PICC failure and a trying IR PICC placement I decided it was time for a port. So today I went to the OR and got a port. The surgery was pretty minor. This afternon, the PICC I had placed yesterday came out. I hope I will love this port.

I am not sure when I will be out. I hate to pester the doctor though know I can do everything I am doing in here at home. I can't wait to sleep in my own bed.

My CF doctor came in today and showed me my last 3 x-rays and explained what we were looking at. Wow, my left lung is crap! He is going to give me a cd of the x-rays. Once I get it I will try to post the pitures and explain what is going on.

Well, I am going to go relax. I hope you all have a great night.

Normal...

2009-07-19T10:10:00.002-04:00

Well not really. I tried to have a normally date with my husband last night. We went out for dinner and then stayed and listened to the band for a couple of hours. Sounds like a normal date night right?

Well, first he had to drop me off at the door because I didn't want to lug my oxygen around and I would get short of breath walking from the car to the restaurant. In the past going out to a band would lead to letting loose and dancing. Not last night. I did enjoy 2 woodchuck ciders. Woo who call me a lush. The band was so much fun and they played a ton of danceable music. Of course, I got to be a "wall dancer". You know those girls that don't dare to get up on the dance floor so they stay against the wall moving their heads and feet. To end the night I had to keep looking at the clock and do the math of how long it will take to get home, do my meds, my vest and get to bed. We decided to leave around 11:15pm...yeah I know night owls, not. That got us home about midnight and I was in bed about 1am. Of course, Brian had to go get the car and pick me up at the door of the bar. Lots of fun.

I am still blessed that I was able to get out of the house for a few hours and hangout with my husband and my friend. I am blessed that I had the choice to wear my oxygen and it wasn't a necessity. I am blessed to have a great husband that will drop me off and pick me up at the door. Though I don't get it why he just wouldn't part in the handicap spot next to the door that was empty. I have a handicap plate. He kept saying what is someone else needs it more than us. I can just drop you off and go park the car. What ever, I didn't need to walk so why do I really care.

Today, I am waiting to hear from my nurse so I can figure out if we might venture to the beach for a few hours. Of course that is pending that my husband is willing to go with me.

Well, that is my thoughts for the day.

One more thing!

2009-07-10T08:18:00.007-04:00

I think everyone needs something that will make them smile at least once during the day.

So here is a picture of my dog, Tucker in one of our many boats.

Don't tell me that didn't make you smile.

One of those days

2009-07-10T07:58:00.002-04:00

I hope the day gets better. I got up at 5am to bring Brian to catch a ride to work because his jeep has been in the shop all week. He was pissy from the minute I rolled out of bed. I could say anything without him taking it the wrong way. I think he needed to got back to bed.

He is going up to camp to work on it this weekend. He will leave right after work. Of course, he needs to pick up his jeep first so I hope it is ready. I can just imagine what this bill is going to be. So as he was getting in to his ride's car, I asked him do you have your cell phone. Nope! Luckily, I had mine in my purse. So I gave him my phone and sent him on his way. I need to make sure the Brigham & Women's know to call his cell phone to reach me this weekend. What a mess.

I came home and did some house cleaning which takes me three times longer than it use to because I have to stop every few minutes to cough and catch my breath. Who would of ever thought that I would need to take a break after sweeping the floor. Good news, I didn't need my oxygen.

It is suppose to be a beautiful day in Maine today so I figured I would take out the riding lawn mower so I can mower the lawn later. I moved everything out of the way. Got the mower out of the garage. Got of it to put gas in it. I went to restart it and nothing. What the ?!@$@! I was just running. I gave it a few more minutes and tried it again nothing. Can I get a break. Brian will get all ticked off because it will be in the middle of the driveway when he come home on Sunday because I can't start it to put it away and there is not way I can push it back into the garage. What ever!

My mom is going to come down and spend the night tonight. Tomorrow, she needs to watch my nephews so I am going to go with her and hand out by my sister's pool. Hopefully it will be nice and sunny and the rain will hold off until late evening. I am in desperate need of some vitamin D.

Health wise I am feeling pretty good. Only one day of fevers this week. I'll take that every week. I have been sleeping really good. I have a CF appointment at the end of this month. I would like to try to gain 2 or 3 pounds by then. I am at 109 which is where I have been since my last flare up and IVs. Good news, I am not loosing. I need to get my butt back on the treadmill or at least start walking outside. Maybe I'll go for a few walks with my mom this weekend.

Here is to a nice sunny weekend!

Today is the day

2009-07-06T06:48:00.002-04:00

Yes, you read it right. Today is the day I am going to go active on the lung transplant list. That means the call can come anytime. Of course, today I feel pretty good but I know that this is not the norm these days.

I had a nice but rainy vacation. I felt pretty good most of the time except for some GI issues. I think I had caught a bug because Brian has it now. My lungs were pretty good most of the vacation.

I need ideas on how to live a normal live while waiting for that call for lungs. My center wants me no further than 4 hours away from the hospital. I currently live 2 1/2 hours from the there.

I guess that is all I have to say today. I think I am still in vacation mode.

Opps

2009-06-26T06:47:00.003-04:00

I think I tried to kill what I have left of my lungs. Yesterday, I wanted to get rid of some mildew that was on my bathroom blind. I have this stuff that works awesome. It is called mold away by mold armor. It just melts way mold and mildew.

Well, I went and sprayed the blind down around 10:30 am. I shut the door and kept the vent on. Around 4:00pm, I figured I better shower before Brian got home. When I went in the fumes were still lingering so I opened the bathroom window and got in to the shower. I wasn't in the shower more than a minute when my lungs started closing up on me. I quickly washed my hair, wrapped myself in a towel and headed to my bedroom. By this time I was really struggling and started coughing and then throwing up and then the headache came. Finally, I stopped coughing and throwing up. Of course not until after I lost everything I ate for lunch. I made my way to the couch, where I laid until 7:30pm until I felt i could move without throwing up or my head exploding.

This morning my lungs are tight and I coughed up some streaks of blood. I am sure this is because of yesterday. I guess I'll never do that again.

On another note, we are off to camp this weekend. We have no big construction plans for this weekend. We need to do some serious cleaning. Yeah, you guessed it, I won't be using any mold away. The weather looks crappy again. Yuck! Where is our nice sunny weather?

Update on transplant: I go for my blood gas on Monday because I was sick with 102.4 fever on Wednesday and had to cancel my appointment. This is the last test I need before I can become active. Once I get this done, I will not need any other test for the next 6 months. Every six months, they check my blood gas, 6 minute walk, kidney functions and PFTs so they can update my score with UNOS. I am still taking it day by day on the activation but I can tell you I will be activated sooner rather than later.

Well, that's it for this Friday.

My weekend

2009-06-22T07:28:00.003-04:00

As of Friday, I planned to be activated on the transplant list ASAP but as the weekend went on my activities where less affected by my health. The air in Maine has been very damp and heavy. This makes it hard for me to breath. I do okay resting but once I get up and start doing stuff I start coughing and my lungs tighten up. I was able to go for a short walk on Sunday morning without my oxygen. I was trying to catch some one's loose dog so it wasn't a planned walk without oxygen. I coughed up a ton but rebounded pretty quick. The good news is Brian and I got the dog and was able to return it to it's owners.

I know deep down I need to be activated. My plan is to take things day by day. I really want to get through this summer. This may sound selfish but once I am activated, I cannot be more than a 4 hour drive to Boston. This means no camp. I want to try to go up as much as possible this summer. Not only because I enjoy it up there but the more we go to camp the more that gets done there. I want the majority of the work that needs to be done be done so when I get my transplant we can just enjoy the camp by hiking, fishing, canoeing, boating, swimming, snow mobiling, etc. These are things that I just don't have the energy to do on most days but have always enjoyed.

My husband and I had a nice time at camp. If you don't already know ,we are remodeling the entire camp. We basically ripped everything out and now we are putting it back together. We are also going to be adding 2 bedrooms and a porch onto it. This weekend we framed up a wall and laid the bathroom floor. Saturday, my husband took me for a ride in the woods. He loves to ride around on old logging roads and find ponds that he can fish. While doing this, he finds some nice scenic views. We tried to get to one of the views but the road was washed out. So he took me in to one of the ponds that he likes to fish. The weather wasn't the best so we didn't get to go out in the boat.

For Fathers day, we stopped at Brian's parents and had a nice dinner with his mom and dad. It had been months since we had been to his parents so we were due. My dad had to work so I didn't get to see him on Father's day. I made sure to call him and will see him next weekend. We see my parents a lot more than than Brian's parents.

Well that is about all that is going on in my life. I will write more sometime this week.

Welcome and Nice talk

2009-06-19T09:00:00.003-04:00

First I want to welcome any new readers that have found me through Ronnie's blog. Thank you Ronnie for our nice exchange of words yesterday.

As many know, I am struggling with the idea of becoming activated on the transplant list. I have already been evaluated and accepted at Brigham and Women's Hospital in Boston. At my last appointment they really expressed that I should be activated. They stated my CF doctor is really concerned about me and has called several times.

Yesterday, my phone rang. It was my CF Doctor, Dr. Z. He had heard that I having a tough time making the decision to become active. I told him I needed more information. Here is a list of why he would like to see me listed:
1.I have a lot of scarring. In layman terms, there is no way to improve your numbers.
2. There are not treatments to add except IVs when I get sick. I already do what they would do for me in the hospital.
3. It takes me a long time to recover from a flare up. This past time I was on IVs for 5 weeks. Which has been the norm lately.
4. My weight. I loose it so easy and have a hard time gaining it back.
5. He thinks I spend too much time on my CF. This one I just don't understand because I always have. The only thing I have added is daily Chest PT from a home health nurse.
6. I am physically healthy now to handle a transplant and he doesn't want me to loose that window.

I am very glad Dr. Z called. We talked for a good 45 minutes. He really gave me some things to go on.

I don't have the traditional case where I need Oxygen 24/7, I only need it with exercise or exertion. I don't think my body is retaining CO2 but i may be wrong...none has discussed this with me. My FEV1 is higher then a lot of people that have a transplant. My biggest issue is when I get sick, I get really sick and this scares everyone except me. I have always kept a positive attitude and that I will fight until the end. I just look at an infection as a bump in the road. I guess that is where my attitude needs to change. I guess I need to think about that one bad infection and be scared of it. I just never have lived like that.

I have made a promise to myself that I will not allow myself to waste away. I watch my weight and calorie intake. I have also been very committed to exercising. I need to keep my muscle ton up so I have every chance for a great recovery from the transplant.

So where am I in this decision? I am giving one last effort to see if I can keep any infections away by being very active on the treadmill. I am going to make a daily diary of how I feel/how my current condition is hindering my quality of life. For example, yesterday the treadmill was hard. After a minute, I felt I was huffing and puffing. I only did the treadmill for 20 minutes. So this tells me, I have a low tolerance to damp heavy air which is what the air quality was yesterday. That kind of sucks since I live in Maine and it is very humid during the summer months.

Another example, if I wake up in the middle of the night to go pee and I lay in bed contemplating getting up to go. Why you ask? Because as soon as I get up, I cough and cough and cough. Sometimes this lasts for 10 minutes other times an hour. It is very hard to go back to sleep after a coughing fit.

Wow, this is a long post. I have so much more on my mind. My next post will be shorter I promise. I hope you all have a great day.

Thoughts

2009-06-16T09:11:00.002-04:00

Sorry, I haven't blogged since my transplant appointment. I am still trying to gather my thoughts and make a decision on what I want to do.

Everyone seems to be pushing for me to be activated. I just don't know if I am 100% mentally ready. Next week I go see my CF doctor and I will have a long conversation with him on why I should be activated. If he sells me on it, I will go active. Either way I am going to get a blood gas done so that way Brigham and Women's have everything they need to make me active when I am ready. I have decided no one but me is going to make this decision. I am listening to every one's input but it is still my decision.

Mean while, I still want to prove everyone wrong. I have been pretty dedicated to the treadmill. Everyday it get easier and easier. My goal is to get on it 5 out of 7 days a week. My speed is getting to the point that I could be jogging. Maybe in a few weeks I will attempt to jog. I have been adding incline to get my leg in shape. My heart rate has been great. My oxygen is good as long as I remember to breath through my nose. I get singing to the Ipod and realize my oxygen is dipping. Ooppps.

The past 2 years, I have spent way too much time at home. I need to stop doing this. So yesterday, I created a list of everything I want to do this summer. This will get me out of the house more.

I also created a list of goals for my health. If I can meet these goals, I should be able to hold off on the transplant. I am also going to have my CF doctor help me create a list of things to watch for so I know when I need to be active on the transplant list.

I had my PICC pulled yesterday. Freedom at last. I had it in for almost 8 weeks. I used it for 5 of those weeks. My goal is to go the entire summer with out needing IV antibiotics again. They only way I have a chance of doing this is to stay active and keep on the treadmill. I can't give the mucus a chance to settle.

I better get back to work.

Treadmill and other stuff

2009-06-10T16:19:00.003-04:00

I have been pretty consistent with the treadmill. Out of 15 days, I have only missed 2 days. Starting yesterday, I am doing the treadmill twice a day. In the morning for 10-15 minutes and in the evening for 20-30 minutes. I figured this gives me two different times of the day to cough up some junk. I do around 1.5 miles a day sometime more but never less. It is almost time for my second walk on the treadmill today.

Tomorrow,I go to Boston to be re-evaluated to see if I should be activated on the transplant list. I think they will make the decision based on my PFT but who knows this is all new to me.

Today was a good day because the Redsox beat the Yankees last night. They are 6-0 against the Yankees this year. Yeah!!!

I have a busy weekend ahead of me. I hope I don't wear myself out.

Well, that is about it. I'll write more after my appointment tomorrow.

Beautiful day

2009-06-02T10:47:00.002-04:00

It is a perfect spring day in Maine. The weather is partly cloudy with temps in the 70s. Can't complain about that.

I am home waiting for my nurse for my chest PT.

This afternoon, I will get on the treadmill for 20-30 minutes. I would walk outside but the mosquitoes would carry me away.

I am pretty bored because I am not working. It is hard not to log on and do work. I thought the break would be good for my health. My IVs should be done on Thursday or Friday so I plan on going back to work on Monday.

My nurse is taking some blood today to see if my inflammation levels are any lower. If they are, I can have my PICC pulled and be done with IVs. I should know tomorrow.

I can still feel spots in my lungs that have junk attached but at this point Chest PT and the treadmill is the only thing that will work to get the junk out.

Well, that is it for today. I hope everyone has a beautiful day.

Home

2009-05-30T16:35:00.002-04:00

I got home yesterday afternoon. On my way home I and got some fresh fruit so I could make a fruit salad when I got home. It hit the spot.

As hard as it was to motivate myself, I got on the treadmill for 27 minutes yesterday. Of course today was even harder because it is the weekend and I am home alone. But I did it! Today, I did 31 minutes. I can already feel my muscles returning. After the treadmill today, my lungs felt great. I think I got some junk out of the left lung. Breathing is smooth and easy right now. I wish this feeling would last.

The one thing I need to focus on when I exercise daily is calorie intake. I loose weight very easily. So as I type this I am eating almond. Nuts are a great source of healthy calories.

Brian is up working on the camp so I am here alone for the weekend. I had to stay home for my Chest PT visits. Plus he is ripping apart the walls and I don't need to be breathing that in. I am thinking of going to my sister's for pasta. This will get me out of the house and I will not need to cook.

Tomorrow, i am debating going to my nephew's 2nd birthday party. I can ride with my sister so I won't need to drive. I hate driving. I just need to see if I can work my Chest PT around going.

Well, things are looking up. Let's hope it keeps getting better.

Good Test

2009-05-27T12:26:00.002-04:00

Some times it take a test to let you know you are really feeling better. I just did a breathing test where they test the FEV1 (amount you blow out in first second) and the FEV (full capacity of lungs). I did the best I have in several years. Wow! My highest FEV1 was 44% OR 1.26 LITERS. The FEV was about the same as always. Every test I did, my numbers got better. Normally, my numbers get worse as I go.

Last week, my FEV1s was 35% (1st try), 31%(2nd try) and 32%(3rd try).
Today, In order of tries, 41%, 40%, 41%, 44%, 44%. Yeah!

What does this mean? It means, I had a bunch of junk and inflammation in my lungs and what ever we have been doing in the past week...is working.

I bet I will be out of here tomorrow.

Life in lock down

2009-05-26T14:39:00.002-04:00

A lot of people ask what they are doing for me while I am here. The first day or two, they take a bunch of tests to see what is causing the fevers and try to start me on the right IV antibiotics based on my last sputum culture. Then they wait to see if a new culture shows anything. While we wait, I have Chest PT twice a day until I do my 6 minute walk test. This is the test they use to get the perimeters for me to use the treadmill. It also measures how far I can walk in 6 minutes. I went 1754 feet. I have done better but this is still really good with someone with my crappy lungs.

Today, I am still waiting for cultures to come back. I also get to go on the treadmill. This should make me cough up a bunch more crap. I haven't tried to walk the halls today to see how I do. I use 3 liters of oxygen when I exercise. Which helps keep my heart rate at normal levels. I get really short of breath when I cough because it causes inflammation.

Everyone seems to think my lungs sound a little better. My Doctor will be in tonight and will let me know what he thinks. My plan is to escape before the weekend and then do the rest of my treatment at home.

Well, that is it for now.

Bored to tears

2009-05-24T11:26:00.002-04:00

As most know, I am stuck in the hospital. I tried the home IVs for 3 weeks and apparently they didn't work. I was very short of breath and kept having fevers. I have been here for 4 nights so far. Does anyone else hate the hospital as much as I do?

My life is very uneventful right now which is the reason I haven't been blogging. I need to find something to kick start things in my life. Health wise summer is always my worst time of year. Yeah, I know that makes no sense.

Our camp is one big construction site so I have a hard time getting excited about going there. I was suppose to go there this weekend.

I am starting to feel a little bit better. I am not short of breath sitting here. The real test will be my 6 minute walk test tomorrow. I need to get off my duff and walk around the hospital or something. This hospital bed is becoming a permanent fixture. That can't be good.

Well, hopefully I will keep feeling better everyday and be able to go home soon. It would be nice to stay healthy for a while and be able to enjoy some of the summer.

Spring?

2009-03-16T07:48:00.002-04:00

It was such a beautiful weekend. I wish I would of taken pictures to post because most people would of laughed it they saw what Brian and I did yesterday. It was around 50 out and we figured we should soak up some vitamin D so we sat in the driveway (the only place in our yard without snow) for 4 hours. We had a couple friends stop by to join us for a few hours. The guys hung out and drank some beer while I pigged out on candy! The sun felt so great! I made the mistake of staying in the sun too long and got rosy red cheeks. Oh the joys of sun sensitive medication.

The weather looks nice for the entire week so maybe I will get off my butt and go for a walk. Hopefully, we have seen the last snow storm of the winter! Now we get to look forward to mud season. Can any one tell me why I still live in Maine?

Funny thought of the week:
As I write this I am listening to the news. What do I hear? A wild turkey knocks a man of his motorcycle. Can you imagine?

Appointment

2009-03-11T18:36:00.003-04:00

I had a great appointment at my transplant clinic. First, I stepped on the scale this morning and I weighed 116! When I stepped on the scale at the clinic same result. My oxygen was 93 at fist and then quickly went to 98 at room air. Of course my heart rate was so high it would scare most people but not me 135...that's what I get walking 50 feet without oxygen on. Off to do lung my lung function test. My FEV1s was 1.24...41% of my predicted. Yeah!!!

Okay now for the bad news. I found out the never listed me....what??? I guess they didn't think I wanted to be listed. Once I got everything straightened out they decided they are going to list me but not make me active...hello that is what I though we did in November. Good thing my health improved instead of worsened. I would have been really pissed!

After my clinic appointment, I needed to go to see the infectious disease folks. They told me I was the healthiest looking CF person they had ever seen. I was very happy about that. After we talked about all the funky stuff that my cultures have grown in the past they decided I can be treated with just the standard antibiotic treatment at the time of my transplant unless something changes between now and then. The day ended with a shot. Hepatitis A vaccine just in case I may want to visit any third world countries after my transplant. For some reason, i just found that funny.

Why this improvement all of sudden? I think it is the change of attitude I have had since my last CF appointment. I love my CF doctor but he said something that really puzzled me. He said "Steph, it is great that you have stabilized but look at all the work you are doing to stay where you are at." I took a long look at the changes I had made in the past few years and they are really nothing that I think has changed my quality of life. The biggest change was working from home. I actually love working from home. The only thing I miss is the social part of going to work. I miss all the people I work with. There was one thing that I wasn't happy with. I was not having any social life because I was afraid to catch something. So I decided I can't stop living just because my lung might crap out on me. I have been so much happier since I try to socialize a little more. I realized I could be afraid to live! I had never been that way before. I don't want to have any regrets. So I am going to live my life that way...I will just have an oxygen tank, a bottle of purell and a mask tagging along!

Yeah...I know

2009-03-11T06:52:00.002-04:00

It has been a while since I blogged. Life just got really hectic. I figured I would do a quick update while I did my vest.

-Today, I go to Boston for a transplant appointment
-Last week, I spent in a court house supporting my sister, Melissa as she was fighting to change primary residency of her 2 daughters which was with their father. It was two very long days but well worth it since she won!!! She will have primary residency at the beginning on next school year.
-A few weeks ago, Brian and I spent the night in Portland for a romantic get away. Anyone who knows my husband knows that this is basically impossible since he is such a comedian. We spent the entire night laughing but had a fantastic time.
-I have made it through the winter with out having a major flare up...knocking on wood! I was down and out on Monday but woke up refreshed on Tuesday. I'll take that any day than 2 plus weeks on IVs.
-We have had a snow storm every Monday for the past 3 weeks. I cannot wait for spring.
-Life is treating me pretty good right now.
- New Breath 4 Steph did a fundraiser with Pampered Chef. It raised $162 plus more to come from the consultant.

I have definitely not been bored in the past month. I was actually MIA for a while. I will write more when I have time.

Here is a saying I just came across that I fell in love with : Life should not be measured by the amount of breaths you take but by the amount of moments that leaves you breathless.

Friday

2009-02-13T09:27:00.002-05:00

My goal is to blog every Friday. Most likely it will be a post of random thought or ideas.

So today I am going to blog about things I am looking forward to.

1. My husband coming home from his training. Brian has been gone for 2 days. We had and argument before he left and I have emotional felt like crap since he left. We have such high expectations for one another that we always disappoint the other and don't even know we are doing so. I love Brian more than I can ever express and can't wait for him to be home.

2. Baseball season. I love baseball. I an obsessed with the Red Sox. Pitchers and Catchers reported to Spring train this week which means baseball will be back very soon. Yeah!

3. Spring! It has been warm the past few days and a lot of snow is melting. I know we will probably get more snow but at least I know that spring and warmer weather is right around the corner.

4. The weekend. Enough said there.

5. February 21st. I have a surprise for my husband. It is his Valentines Day gift. My parents are coming down this weekend so I made plans for next weekend. I hope he loves his gift.

6. For the Fedex guy to deliver my espresso/latte maker. I love Caramel Lattes so I spoiled and bought a maker. Why should I keep giving my money to Dunkin Donuts.

7. March 11th. That is my next transplant appointment.

8. For custody to be settled with my Nieces. My sister goes to court in March to see if she will be awarded primary custody. Please pray that she gets her daughters. They want to be with her and her ex is being an ass about it!

Well that is all for today folks. I hope everyone has a great weekend.