Extra time

Since the last post we've lost 3 more transplant survivors.  One was after me, two were before.  As a transplant survivor you know that you are given extra time with no guarantees.  IF you survive the surgery.  IF you don't reject the heart.  IF you don't get complications from the medications.  IF some ordinary germ doesn't cause some major infection because you have no immune system.  Let's face it...there are a lot of IF's.

But, the extra time allows you to appreciate many things.  You appreciate your family and everything they do to help you pre and post transplant.  You appreciate your friends who stand by you from diagnosis to recovery and beyond, who listen to you, cry with you, believe in you.  You appreciate the simple act of taking a breath because you never know when it might be your last.  And you learn to live each day as if it was your last.  Not going overboard with doing the wrong things, but simply enjoying going to the movie with a friend or having lunch with your pals or spending the holidays with your family.

Next month will be 5 years of "extra time" for me.  Sometimes I get frustrated because I want to help others as much as they've helped me, yet my job has limitations that I sometimes can't change.  Sometimes I wish I could find another way of helping but the reality is that you do have to eat and pay for all these medications so you have to have a job and insurance!

The key to the whole thing is to take this extra time and do what you can, when you can , to whom you can, to the best of your ability.  If you can do that, then those extra days will be worth it.  Here's hoping I can take my own advice!

PS:  Friends and family.....go to the older posts and put some comments over things I've forgotten or stories that need to be shared.  You all know there were some funny ones!

7 Pounds

I've watched this movie a couple of times and found a few things interesting.  First, the feelings that Rosario Dawson's character goes through are scary accurate.  I remember how it was to hear those words about going on the transplant list and then the sudden reality of exactly everything that meant.  The way she felt and the things she went through as far as being tired so easily, passing out (or nearly) on people, etc., the need to continue to be independent even though you knew your time was growing shorter....I would like to know how those around me would rate it compared to what I went through just to see if somebody else thinks it is as accurate as mine.

The "direct transplant" issue of Will Smith's character, however, is not accurate as far as I know.  Hollywood often takes artistic freedom with transplants, and while I know that each transplant location has their own set of rules, I don't think UNOS would allow a direct transplant. 

I always find it interesting that the movies or TV will show someone going in for a transplant then coming out and people not having to wear masks or be in isolation.  I'm pretty sure that isn't the case anywhere.  But, if getting organ donation on TV or in Hollywood would increase donor awareness, then I guess a little "fudging" with the facts can't be all bad.

And another...

Another local transplant person passed away this week.  Just a little older than I, he had his transplant in Missouri and moved to our area a couple of years ago.  I met him one day in clinic...seemed like a nice guy.  He was ten years out on his transplant.  Again, have no idea what went wrong.  We've had a lot of ice and snow so it might have been related to shoveling.  H1N1 is going on around here so maybe that was the cause.  Or simply, maybe God decided he had finished his work here on earth. 

The way I'm starting to look at it is this....I've been "legally dead" three times already.  What extra time I've been given is for me to do the best I can with, and enjoy all those I care about.  Here's hoping it might be a little longer.

Lose one more

Lost another transplant survivor last week.  She was in her early 20's and had her transplant at 14.  Became a starting pitcher on the BA girls's softball team shortly after her transplant and part of a winning state championship team.  I have no idea what happened, what caused her death.  Sometimes young people get tired of taking all the medication (and I can understand that) and begin to feel like they don't need it anymore.  Sometimes rejection issues come up.  Sometimes there are viruses that attack our imnio-surpressed bodies and cause organ shut down.  Whatever the cause, it is a shame that such a courageous young woman lost her battle to live.  And it brings the reality of our life to light...whether you are a transplant patient or not life can be short.  Unfortunately, for those of us who are transplant patients, you can't take anything for granted.