Saturday, January 27, 2007

Transplant Rebirthdays

My kidney transplant was seven years ago today. "Rebirthday" seems to be the most common term the transplant world has for this day, but I've heard "anniversary" and all sorts of permutations that aren't really words I can comprehend ("transplantversary" for one). Transplant patients I know have marked it with recognition of their donors (living or deceased), special activities or indulgences, and even organ-shaped cakes (these tend to be the same ones who have names for their transplanted organ...a bit over the top for those out of early childhood).

For my part, I haven't usually thought of my transplant anniversary as a particularly joyous occasion. At the time, it was an incredibly rough week, and the improvement afterwards wasn't nearly as immediate or dramatic as advertised. Since that time, as each year passes, I'm reminded that the chance of a transplanted organ lasting gets lower. For those interested in numbers, there are good statistics available on current graft and patient survival, projected survival of kidney transplants done recently, and long-term survival of children with end-stage renal disease.

I recently heard a saying about parenting that "the days are long but the years are short" and living with an organ transplant seems to follow the same rule. Taking medications, getting lab tests, and monitoring our health make for long days (and clinic appointments at most places can make for VERY long days!). But whether average graft survival is 10, 20, or even 30 years, it's far less than the 80 year life expectancy most people expect. Each year seems especially short, and they go by fast.

What do I do for my transplant anniversary? Over the years, I've spent this day at everything from a belated holiday party to a cancelled doctor's appointment, and only last year was there a cake involved. I've tried to forget (not possible since I have a fairly good memory for all anniversary days), thought about doing something especially memorable, and graciously accepted well wishes from January 24 to February 2 (the caring is there, but some people's memory for dates is less durable).

In the end, living with a transplant is a day-to-day process, and regardless of the predictions from statistics, no one can predict the future. But having a transplant is a fairly monumental event and change in life, so for that reason alone I'd say that every transplant patient deserves a special day. Enjoy!

5 comments:

Unknown said...

Hey Manu! I loved reading your blog. I am always amazed by your knowledge and you have helped us through Jonathan's transplant in ways you can't imagine. I especially like the personal side of your knowledge and am always interested in how things are for YOU. Thanks for sharing and I'm looking forward to reading more!

Anonymous said...

Dear Manu,
Thank you for this interesting and very personal writing on transplant from the recipients side. You addressed some issues I have been wondering about. Although the numbers in the links are less optimistic than I would have liked to read. I wish for you many more aniversaries and long years filled with interesting activities, satisfaction and great friends,
lotte Bengal

Anonymous said...

I suppose that my take on things is about 180 degrees from yours on this subject. I consider not only each milestone a joyous occasion but each day as well.

I keep in mind that at the rate I was declining that by this time I may have been comatose or dead from liver disease. Every day is a gift.

Regardless of statistics, each day is one more day that I have to love life, do for others, and explore this incredible miracle of life.

When I was born no one promised me even one second of life. I'm just sorry that it took me 40 years to learn that through such a traumatic experience.

I plan to have some type of event for my one year anniversary that will honor my donor as well as all those who supported, prayed for, and helped me during my illness and recovery.

But, that's just my take on things.

Anonymous said...

I agree wih the previous comment! I watched my healthy, middle aged husband quickly become frail and desperate as he suffered from unexplained cardiomyopathy and life threatening ventricular tachycardia. With very little hope left, he received a heart transplant. Twenty days later, he left the hospital with renewed health and a realistic hope to live long enough to see our childrrn grow into adulthood. The first anniversary of his transplant will be tomorrow. While we appreciate each and every day we have been given, I am overwhelmed at the occasion. I look back at what we went through, how close he was to death, and the medical miracle that saved him. Not for a single moment have we thought about "graft success rate" or "survival rate" statistics. Even if he were to die tomorrow, it will be 365 days later than it could have been. What a blessing were hose 365 days! What a blessing is today. What a blessing will be tomorrow! To the author of this post, stop worrying about the possibility of gloom and be thankful for the day.

Anonymous said...

Gosh you took the words right out of my mouth! That's is how I feel exactly about my liver transplant. Recently transplanted in 2013.