I have heard thy prayer, I have seen thy tears, behold I will heal thee.
2Kings 20:5

Saturday, January 29, 2011

Saying it out loud

I honestly see myself through a whole different perspective sometimes. I consider my life right now fairly "normal" my daily routines are similiar to a day in anyone else's life other than I take a handful of meds 2-3 times a day. But recently I have had to explain my 'limitations' to a Vocational Rehab worker.  I thought it would be easy for me to explain my 'life post transplant' and as we talked about it outloud it just hit me. . . I have a lot of issues still.

For example: I can easily say "well I just take my immune suppressants", but I also had to list all of the following, prednisone, Bactrim, blood pressure pills, blood thinner pills, crazy vitamin doses, and pancrease suppliment pills (whenever I eat something). . .that is a lot to take. On top of that I had to address things like constant back pain, frequent headaches, terrible insomnia and difficulty remembering things. Okay, those things are all easily remedied BUT  I had to really think of my day to day obstacles I then added: Borderline Diabetes (although I think I have the diagnosis, I just control my sugar levels without insulin), I have Anxiety, probably a bit of depression once in a while and who can forget the lovely tremors that Prograf causes! As I listed all of that and said it all out loud it shook me up a little. The most important issue we addressed of course was risk of infection and/or rejection. I feel like I am the healthiest person in the world, but on paper I look very sick :) Oh and on some of my paper work from the transplant center apparently I am also coded as having Liver or Kidney disease stage I or something like that. . . .really?

In reality I do feel like I have had an extraordinarily healthy 3 years post transplant. What very few complications I have had since my release after recovery is nothing short of a miracle.  I am not cured obviously by reading the long list of things in the above paragraph, but as far as I can tell it was one heck of an awesome trade off. Many of the day to day bothers like the headaches, tremors, frostbite fingers & toes, anxiety, depression, back pain, kidney functions, high blood pressure and even the high blood sugars are all probably just side effects of my list of medications . . . but I will take all of those over coughing up mucus & blood, being under weight, having no energy, suffocating to death, having to lug around oxygen everywhere I go, spending 1/2  of my life in a hospital room, but most of all having the fear of falling asleep cuz I was afraid I wouldn't wake up.

Getting a lung transplant was a trade off. One set of problems for a different set of problems and even though when I list all the little things I deal with now, it is a trade I would do over again in a heart beat. 

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Where to start to learn about my transplant!

Thank You for taking the time to read my blog. I am hoping that through this blog and my experiences that I can bring hope, faith and strength to all that may be living with Cystic Fibrosis, CF with Cepacia and Lung Transplant recipients. Information and blog entrees start Nov. 07. My Double Lung Transplant was on Dec. 10th 2007. Please feel free to read about my experience and ask me any questions! My email address is jamiebug77@gmail.com

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My Testimony

It's hard to put into words how I feel toward my Heavenly Father and the Savior. I have so many reasons to be thankful for what I have gone through & endured. Because of my trials in life I have gained a strong testimony of Faith. I have always had Faith in the Lord and in Prayer. As I faced the decision to get a double lung transplant I had to rely on faith to make the choice.....By listening to the spirit, I was guided to Pittsburgh where my life was saved. I believe prayers are answered. I have always tried to follow the philosophy of this: If I do what the Lord expects of me, he will give me what I want & need. That has always worked for me. I Believe in MIRACLES..........My life on this earth is a miracle- I prayed on my knees for years to be healed from my lung disease. I knew that through a priesthood blessing (if it was God's will) I could be healed. So many times I thought he would heal me instantly...my faith was tested as I continued to get sick and no cure was in my future. I turned to prayer....I talked to my Heavenly Father, I cried to him and he heard me and he healed me by guiding me to Pittsburgh and guiding the surgeons hands. I learned humility, and thankfulness. I realized that we need others to lean on and we are supposed to strengthen each others testimonies. I learned that the hardest things we'll do are usually the greatest blessings in our life. I was able to experience a lot of things during surgery and I know I had comforting angels in my ICU room. THe Lord knows each of us by name and he will never leave our side. We need to remember to stay close to him and have Faith that he is watching over us. I know this for a fact! I know that following the gospel will bring us true happiness- the world will tell us otherwise, but I know I am truely happy & living the gospel has brought me that. Amen