Where has time gone?

I cannot believe it has been over 4 years since I have created a new post on my blog. My plan was to keep the blog going after my double lung transplant but I do not have nearly the amount of down time I had before my transplant. Before March 17th 2010, I spent many hours doing nebulizer treatments, IV antibiotics and chest PT via my vest. This gave me plenty of time to sit in front of a computer and blog away. I even had some time to blog for the first year after my transplant plus I had plenty to talk about. Now it is just about 5 years since my transplant and  life has kept me busy. As I approach my 5 year anniversary, I have been spending time reflecting on  all that I have been through. I decided it is time to start blogging again.

My blog posts have always been about my cystic fibrosis and my double lung transplant. I will still post about those things but life is about so much more now. I guess it has always been but from 2006 to 2011 those two things became my life but they are not me.  One of my next post will be an introduction to me as an individual and not as someone who has cystic fibrosis or a double lung transplant. Before my introduction post, I plan to reflect on my life  5 years post bilateral lung transplant.

After these few posts, I am not sure where my blog will take me but I look forward to the journey.

March already

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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 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

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!