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.