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

Saturday, December 26, 2009

Was is Worth it??

This is not a Christmas related entry. . . but something I get asked quite frequently. So I thought I would post on it.

Many adults with Cystic Fibrosis will face the question "To Transplant or not to Transplant?" That is the question.

For me it was NO, due mainly to the fact of a lack of accurate information. Honestly, I thought I would fight, exercise my butt off, take my meds, stay positive and hoped for a cure. . . .all that I am sure extended my life and quality of life for many years beyond what I should have had. however, it is still a fact that a cure IS NOT available. I Do still hope for one some day to stop this disease before other CFer's have to go through a transplant.

That being said. . . Was it worth it?. . .

During evaluation, I was told that a five year survival is very average for CF. However I have met people through Transplant Buddies Forum/Group that are far surpassing that number. Several people on there are 10+ years post transplant. So if you are facing the inevitable death/end with CF than 5-10 years sounds pretty good! Also it's not just 5 -10 yrs feeling all crappy like you do with CF. You will have up and downs and some complications, it's not a cure, but your life will definitely be improved! How does 80% or higher FEV1 sound? No Oxygen, run, dance, swim, or do whatever activity makes you happy. Several people post transplant choose to return to work and go back to their career or back to school. Some even have children.

Now. . . Cepacia. . . . I still do not think many transplant centers are evaluating and considering Cepacia patients here in the US. Pittsburgh, Pa and possibly Cleveland. Survival statistics on Cepacia vary. Some patients have died within 6-12 months due to complications from B.Cepacia. But did you know there are 6-7 Cepacia types? And that it does make a difference on survival depending on your "type" I was a 6 I believe. I understand that 3 is one of the more nasty types. However I know a type 3 who is farther post transplant than me! Since there are so few centers even transplanting Cepacia, the numbers really aren't' accurate. But take me for instance. . . I am over 2 years post transplant, I have not been treated for rejection and since my initial hospital release after surgery I have only had one set back of a lung infection which I recovered from easily.

My life is AMAZING! I am not saying that lightly. I can do all the things I love BETTER than I ever could my entire life with CF infected lungs. It is a hard decision. It is an even harder process. It is the absolute hardest you will ever have to fight for life and endure much after the operation. . . . but I would do it again. So far I have had 2 years to spend with my family, Bryan, and pursue goals that I had given up on many years ago. I am back on stage performing with a professional Improvisation troupe.

2 and a half years ago I thought I was going to die, I wanted to die. . . but I wanted to prove that everyone is individual and I COULD survive a lung transplant if I was given the chance.

Let me end by telling you this.. . .

I remember laying in bed with Bryan and watching him breathe effortlessly. I asked him "How does that feel, to breathe without pain or having to force every breath?" I honestly wanted to know how that felt. . . I know how it feels now! One day of knowing how that feels is worth it, anything past that is just a bonus :)

I have big dreams again, HUGE goals to reach and life with Bryan I thought I would never have~ Don't sell yourself short, Everyone deserves a second chance at life. I also need to take the time to acknowledge my Donor. . . .because she chose to be an Organ/Tissue Donor and her family honored her decision, I am still alive and up to 7 other people because one person made the choice. . . It's a miracle no matter how you look at it. One Donor can Save up to 8 Lives! They can give sight to the blind, hearing to the deaf, and other tissue, skin and bone. Many people think that if their loved one Donates their organs they cannot have an open casket funeral. That is false! Please if you are not a Donor, consider it and share your wishes with your family.

Save a life * Be Someone's Hero * Be an Organ Donor

1 comment:

Groomer Angie said...

What a great site transplantbuddies is!! Thanks for linking to that!

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