The Golfer With Two Transplants

I have to admire Erik Compton, the PGA golfer playing in the US Open this weekend.  At age 12 he had viral cardiomyopathy and had his first transplant.  Nineteen years later, after putting himself through UGA on a golf scholarship, he felt a tingling in his arms and rushed to the hospital (drove himself) only to find out that his heart was, once again, failing and went through his second transplant.  Figuring that his dream of playing professional golf was over, he hocked his clubs and started to give up his dream.  But, once again, he fought back and today is playing in the US Open.

I don't know if I could do that.  I don't know if I could go through all of this yet again.  It is hard and depressing enough to keep going for bloodwork, nevertheless to think of all the biopsies, tests, clinic visits, medicine changes, and everything else yet again.  You are warned when you agree to have a transplant that there will be LOTS of tests, hospital visits, and medicines to take.  And at the time, when that is the only light at the end of a long, dark tunnel, you think you can handle it.  But after a while it gets old.  It gets depressing.  It makes you angry.  Sometimes you look at all the pills and want to say, "I quit". 

Then you hear about a guy like this who has the courage to keep going.  Who has the bravery to follow his dream.  Who accepts the challenges and goes on.  It makes you feel like an ungrateful fool.  But everyone's situation is different.  Family or no family, support or no support, children or no children.  Reason to go on or nothing to keep you here.  Until you walk in the shoes of a transplant person, no one should judge or will ever understand.

Nobody has any guarantees in life.  Whether by choice or not, living can be a fleeting thing.  I wish I could just pack up and take a trip to Italy, or spend a month on the beach, or walk trails in the mountains...all with camera in hand.  I guess that would be my dream.  Oh well, maybe before this heart gives out....I'm not planning on another one.

small world - big heart

I was just scanning through my recent blogs and noticed that I had a transplant survivor as a follower.  So, being the curious person that I am, I hit the link and checked out his blog.  Then, I checked out his followers.  Wow, what a wake up call.

Here I am complaining about a bunch of little things and some of these people are fighting major rejection issues, dealing with complications from medications, facing more disease.  Talk about a slap in the face.  Despite all of this, they continue to be grateful for the simple act of living.  They are grateful for being alive, not complaining about their job, their homelife or lack of social life, or how they sometimes feel like someone else is living in their body with them.

Just reminded me that about 7 years ago this weekend, I could have been placed in a cemetery myself.  The "procedure that became the ordeal" fiasco.  Instead of going to decorate graves, someone could be coming to decorate mine.  What a reality check.

To all those who have survived and continue to live and inspire me, thank you.

Why can't they just trust me?

So, in March I had bloodwork ran that showed my cyclosporine levels had dropped waayyy down, and I was put on more cyclorsporine.  Now, what you need to know about this drug is that it has some serious side effects.  Some of the more minor ones involve leg cramps, mood/mental alterations, and insomnia.  So, off we went with an increase of 25 mg per day over my usual 100 mg .

Now, I've done this before, and I know when I feel worse.  And sure enough, the last three weeks have been hell.  Between not going to sleep, waking up in the middle of the night with major leg cramps, and having some really wierd dreams and thoughts, I had a feeling that the level had gotten too high.

Well, yesterday's reading seemed to indicate it.  What should be around 100-120 was 384, but since it had gone up so much the docs thought I'd taken my meds before I had bloodwork ran.  Now, come on...how many of these labs have I had done in the last 5 years?  Only once did that happen and it was because nobody told me they were going to do bloodwork.

So, today I had to go back and have it ran again....this time it was 184 and they were telling me to keep the same amount going.  Most of the time, I don't argue but this time I had to.  So, yet another run to SFH for bloodwork and clinic on the 8th...and hopefully somebody will finally believe me.  I don't think I can keep up with these side effects much longer.