Sunday, October 25, 2009

Too Much Information

Warning: A lot has been going on with me over the past couple months, some of it good, some of it bad, all of it going seems to continue to on and on

It is a time of good news and bad news for me. First the good news, my one year anniversary was on September 24, 2009. Outside of car accident that left Wendy without her car for a month, it was a good day. Wendy and I visited the hospital, delivered a cake and some thank you cards, and went out to a great dinner at Providence . Actually one of the best meals I've ever had. It was a significant day. It's been a year and I still have zero signs of rejection.

I continue to be on fairly low doses of anti-rejection drugs and tolerating it well, which is nice.

Unfortunately, from my perspective right now, that is about the end of the good news. In August, I let myself get a little too dehydrated and ended up getting a biopsy; of course it came up negative. Unfortunately, it was the start of a disturbing downward trend of my blood platelet count which culminated if me being admitted to the hospital. My platelet had dropped to 9k putting me at extreme risk of an inter-cranial bleed. They gave a treatment called IVIG, which had me hooked up to 2 liter IV bottle for 18 hours. Unfortunately, the pharmacy seemed to mess up the mixture and it gave me a 4-day migraine. Finally I got some relief from Imitrex. Unfortunately, since then, I've battled minor headaches, and I'm not allowed to take any meds for them. However, between the hospital, the migraine, and doctor’s appointments, I've been missing a lot of work, not good, as I was long ago out of sick time. Luckily, the IVIG treatment worked, and my platelets bounced up to 380k. I thought I was through it; I finally managed to get back to the Hematologist last weekend, only to find that my platelets were back down 19k. The ITP is beginning to look like a chronic problem, rather than an acute problem. The most frustrating part of it is that it is idiopathic, meaning they don't know the root cause of it. ITP itself is idiopathic, not just my case. The treatment for now is pulsed steroids, 4 days of Decadron every two weeks, with blood tests every week. It also means I'm on Zantac, because the steroid, tear you up. I started taking it in the evening but found that it keeps me awake; I will start taking it in the morning on the next pulse. NOW, last night I took the Decadron with the rest of my medications and now I'm suffering the most intense episodes I've ever felt. Every time I stand up, the world goes a little dark; I even fell to my knees once. Luckily I am at the end of the pulse, drinking lots of water, and hoping that once I get the Decadron out of my system it will go away. Still I have confidence in my doctors, I understand the difficulty of this particular problem, not knowing the cause, and having some many others health issue to thread it around. Speaking of which, I am still battling the BK virus. My viral count went back up to 40 million, which is to be expected with my increases in steroids. The goods news in this is that I'm still asymptomatic and another Dr., an expert on the BK/polyoma virus, said that that number is "Amateur", both I and Dr. Barr feel better about this.

So the out come of all of this is that I'm grounded. No mountain biking, most likely for 2 months - 2 months, which is unbelievably frustrating. Not just because I can't do it, but because I keep losing my fitness, it’s a struggle, I'm not making any gains in my climbing - on the bike and on the rocks for that matter. I have things I want to do, next year and I keep getting these set backs.

So with all this, I have begun to take Lexapro. For those of you who don't know, Lexapro is a anti-depressant. When I left the hospital, I was suffering from minor PTSD and recovering from Psychosis that I suffered while in the ICU. I finally went to a therapist in March, and as the PTSD clear up, it revealed a more deep seeded depression. After a couple months of therapy, my therapist finally advised me that she was worried that my depression was becoming a little more chronic and suggested an anti-depressant. Of course I was reluctant, but open, because I know I'm still having trouble, being sad for no reason, moody, unfocused, and generally unpleasant. So I went to a Psychiatrist, he agreed with my therapist’s diagnosis and prescribed Lexapro for me.

So the struggle continues for me. I have to admit that all of these issues are affecting the rest of my life, my home life, my work, but I won't go into those details. Right now, I'm kind of feeling like I just want this year to be over, to start over again.

Now, I know that as far as transplants go, I have it very very good. NO rejection, minor problems, great supportive doctors, great support at home. So I feel guilt for complaining, but I just felt like I needed to dump, I hope you don't think less of me for it.

Mostly I'm doing well, I just hope I don't pass out when I stand up from writing this...

2 comments:

Aaron said...

Thanks for sharing. I hope you're finding some comfort. There is always good music for times like this.

Anonymous said...

Your thoughts & feelings are totally reasonable, and it's helps you and us to write and read those words. You're right--these are all *relatively* minor set-backs and the world is a better place because you're still a part of it. And remember, "fit" is a place we visit, not live. Come back soon.