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