Tom Petty said it, "The Waiting is the hardest part...". Of course, he was talking about waiting to "get some", but the point remains.... I spend a lot of time "waiting". I think that's one of the most maddening things about all of this. I'm just waiting.... waiting to get a new kidney, waiting to see my GI doctor to get my bowel problem resolved... it makes you feel kind of useless.
I try to fill up my time, though. Working is hard - I know some people still work while on dialysis and others don't. I feel so different day to day, it's hard to stay consistent enough to work a job efficiently. Most of the work I do is part-time, and on an "as needed" basis for people. I like it when I can get those jobs - mostly I work on them from home, but it makes me feel productive when I can help out. When I'm not doing work for other people, I manage a retro-gaming "company" called Infamous Adventures. We're working on several video games right now - old school "adventure" games, with a decidedly early 90's flavor. It's a lot of fun - I work with people from all over the world and all walks of life.
So, yeah, keeping busy and feeling productive and useful is something that weights on my mind a lot. Just one of those things, I imagine, that anyone who is chronically sick can identify with.
~Steve
Hi. I'm Steve - you've found my blog. I talk about my experiences with dialysis and transplants all while trying to live a "normal" life. From a young man to a middle aged dad, insight and thoughts on life, love and living with ESRD - tinged with humor.
Hi Steve--I am Greg's Aunt. He told me about you because my husband, also Steve, has kidney disease. I am not a blood match but will participate in a kidney swap program--Albany Medical Center, Burlington Vermont--there are others. If you have someone who is willing to be a live donor that does not match you, you will be bumped up on the waiting list--Steve's doctor said you'd wait just a few months. Please feel free to contact me, michele@saratogaroasters.com, and we can get you in touch with someone who might be able to help.
ReplyDeleteI know the feeling Steve, my husband couldn't get on the waiting list because his BMI was to high and he had an open wound on his foot. It is almost two years later and the wound is finally healed and his BMI is almost at what they required, so tonight I contacted St. Barnabas and hopefully we will be going to meet with them again soon with better outcome then he got last time. We do have matching blood type so I am hoping I am a tissue match to so I can give him a kidney. I hope your waiting ends soon!!
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