I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: tigtink on February 11, 2015, 06:52:06 AM
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I've done really well at just focusing on living my life and not thinking nonstop about waiting for a transplant, but there are those pesky nephrology appointments and monthly blood tests that keep reminding me that one day with no warning I could be headed to the hospital for a transplant, with all the possible risks and benefits that come with the surgery. My function has stayed at 19% for almost a year, but came back at 16% last month. I am waiting for results from yesterday's blood draw to see if that drop was just a fluke or whether my function is decreasing again. I am very fortunate--my only real issue has been anemia and fighting with the insurance company to renew my Procrit. I saw a new nephrologist this week and really liked him. He is more willing to work with me on the anemia than my old doctor, and he took time with me to go over everything. What was sobering and still haunts me is the discussion I had with him about the transplant lists. I am listed with U of MI, which has a long wait, and with U of WI which has a shorter wait time. I did not try to get on the list at Toledo because I wasn't that impressed with their program, but my new doctor said the wait in Toledo is even shorter than Madison. I think I will stick with Madison now though since I have almost a year wait time accrued there. What was unsettling was the reason he gave for the much shorter wait time in Toledo: the fact that Ohio law does not require motorcyclists to wear helmets. In fact, he said the wait time in Michigan is already beginning to go down because the law changed here recently and helmets are no longer mandatory. It was a sad reminder that someone will need to die in order for me to get a new kidney.
I've made a lot of positive changes in my life over the last year or two, and I feel as if I have prepared as much as possible for the transplant. I like to lose a little more weight, which I might be able to do if I can get back on the Procrit shots. But these kinds of reminders are pretty sobering, and I have moments when the reality of it all hits me.
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Tigtink, I spent 2 years with a gfr below 20, and I did just fine. I know that keeping vigilant means that thoughts about renal function/transplant/labs, etc are never far from your mind, and yes, it can be draining emotionally and psychologically. Keep on living your life. I congratulate you on how well you have coped with the very real anxieties that come with life on the list.
Try to keep in mind that just because some states have repealed the helmet requirement doesn't mean that no one will ever wear one. Each person makes a choice every time they rev up their motorcycle. Everyone has to take personal responsibility for their own safety. I personally would like to see the states who have lifted the requirement push really hard to encourage motorcyclists to sign a donor card. Perhaps in those states an opt-out program should be created. Sometimes liberty comes with a price. I'm all for seeing the number of available organs increase, so....
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Trust me, helmets don't make that much difference when in a motorcycle accident. Often they give a young rider a false sense of security, and they die anyway.
Donor awareness needs to be stressed in EVERY state to EVERYONE, not just the motorcycle riders. We lose thousands every year to auto accidents. Most all never thought that they would be in an accident, and all too few have signed donor cards.
There needs to be a NATIONAL champaign to renew donor awareness. Not just for kidneys, but all transplants. I don't know how, but somehow, a national ad champaign addressing the tremendous need for all organs, something that can awaken the idea to all those peple possibly willing, but never taken time to actually think about signing a card, registering, just in case they should be in an accident.
Signs, posted in drivers license offices, Dr's offices, possibly billboards?
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That's a good point, MooseMom. Free will and freedom of choice come with the responsibility to assume the risk. NoahVale, I am feeling pretty well except for some fatigue. My other labs are great, so I'm not too worried about a lower GFR. It has been down to 14% before and come back up. The issue I had with my prior doctor was when to go back on the Procrit. He wanted my hemoglobin to go below 10 before I started up the shots again. I know some do OK at 10, but for me by the time it gets that low I am so weak I can't get up from sitting position without bracing myself and my daily functioning is greatly impaired. He also never wanted to let it go higher than 11. My new nephrologist is OK with keeping it between 11 and 12 and starting back up with the shots once it goes below 11. For me. the difference between 10 and 11.5 or 12 is dramatic. I never want it to get down to 10 again. My iron stores are fine and my Vitamin D and B12 levels are great, so EPO is the only thing that will work. When my hemoglobin rises, I am more active and can lose weight, plus I feel so much better. So I am grateful for a new doctor who will listen to me. Plus, they got rid of a truly horrible nurse I had several run-ins with. I like the new nurse much better as well. I have one sister who was willing to get tested, then backed out as soon as she found out she was a match. I haven't had anyone else volunteer to get tested. I like your idea of a national campaign, Charlie.
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I'm glad to hear your nephrologist is willing to compromise. That sound like a reasonable plan. I know the risks involved, and I certainly don't want to take medicine when I don't need it, but quality of life is a consideration as well and their should be some leeway with the dosage. I jut got my test results back. GFR is back up to 18, hemoglobin is holding at 11.2, and potassium and phosphorus are normal. So I am holding steady for now, with a year of accrued time behind me. That bodes well for a preemptive transplant, so I am thankful for every day I don't require dialysis.