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!

DR. DD

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

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

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

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

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

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

True love

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

Big Plans!

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

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

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

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

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

A little disheartened ******Edited

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

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

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

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

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

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

It keeps getting better

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

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

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

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

First Clinic Appointment

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

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

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

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

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

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

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

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

Boston tomorrow

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

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

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

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

I am sorry

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

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

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

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