Wednesday, December 29, 2010


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!

Saturday, November 27, 2010


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.

Wednesday, November 10, 2010

Almost 8 months post transplant

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 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

Tuesday, September 21, 2010

Things that have changed after 6 months

In April, I wrote this blog

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.

Friday, September 10, 2010

Hello Blog world

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.

Thursday, August 19, 2010

Home and IV free

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.

Monday, August 9, 2010

This is crazy

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

Thursday, July 29, 2010

A little good news

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

Thursday, July 22, 2010

I am so bad

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.

Monday, June 28, 2010

Yucky Sinuses!

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, June 11, 2010

Friday update

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.

Friday, May 28, 2010

Stomach Bug

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.

Thursday, May 20, 2010

Little Bump in the road

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!

Thursday, May 13, 2010

New Beginnings

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.

Tuesday, April 27, 2010

Post transplant thoughts

Great things post transplant:
  1. Breathing
  2. Exercising with no oxygen
  3. Traveling overnight without bringing vest or nebulizer
  4. Socializing
  5. Gaining hours a day back because no need for vest or nebulizer
  6. Being able to load and unload dishwasher without getting short of breath
  7. Holding my breath
  8. Talking
  9. Laughing
  10. No coughing
  11. No daily fevers
  12. No monthly IV antibiotics

Things I can't wait for:

  1. Driving
  2. No pain
  3. Flying
  4. To be hungry
  5. To run

Wednesday, April 21, 2010

Scar with no staples!

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 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.

Sunday, April 18, 2010

Pray for Lungs

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!

Wednesday, April 14, 2010


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 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.

Sunday, April 11, 2010

True love

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!

Saturday, April 10, 2010

Big Plans!

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!

Friday, April 9, 2010

A little disheartened ******Edited

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.

Thursday, April 8, 2010

It keeps getting better

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.

Wednesday, April 7, 2010

First Clinic Appointment

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.

Tuesday, April 6, 2010

Boston tomorrow

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.

Friday, April 2, 2010

I am sorry

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:

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.

Tuesday, March 30, 2010

Good News

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%.

Monday, March 29, 2010


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

Friday, March 26, 2010

My view...

...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

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 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.

Wednesday, March 24, 2010

Irish Luk

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.

Tuesday, March 16, 2010

Yesterday's procedures

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.

Thursday, March 11, 2010

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 but my brain is not functioning today!

Tuesday, March 2, 2010

nothing new

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.

Saturday, February 20, 2010

Just a post

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.

Saturday, February 13, 2010


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?

Friday, February 5, 2010


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.

Tuesday, February 2, 2010

The 2nd Annual Dinner/ Dance was a success!

(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!

Friday, January 22, 2010

Are you serious?

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!

Thursday, January 21, 2010


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.

Tuesday, January 19, 2010


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?

Thursday, January 7, 2010

IV time

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.

Tuesday, January 5, 2010

Control Freak

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.