I have been having bouts of insomnia and worry at 5 or 6 am until the time that we wake at 7:50am. I have read that many of the drugs I'm on can cause it, but I'm sorry to report that insomnia is nothing new to me; I have had bouts of insomnia for years, but during the time I was on dialysis, I was also on a drug to control kidney-failure-caused muscle spasms. Clonazepam, this lovely drug, made me sleep like a baby for the first time in years. And though I have two full bottles of this stuff, I've been weaning myself off it for the last 6 weeks. It is advised to go off it really slowly, incrimentally. I am down to an eighth of what I used to take. I had hoped that the transplant would help the insomnia, but I'm quite sure now that it's all down to stress factors.
Stress: the last 3-4 years have been so incredibly stressful. Last year was the ultimate in stress: we bought a very small - 50 square meter (164 foot) house that ultimately needed to be rebuilt while we were living in it. My kidney failed and I underwent dialysis surgery and care and then transplantation. We worried a lot about finances. And that is still the case.
(We need a holiday. Gary hasn't been for 6 years; I've not been since I came here for a week in 2004. Prior to that, my last real holiday was Morocco, 1992).
I have so much concern about the unknown factors which come with transplantation. Why is my abdomen still so swollen that I look pregnant? I am told that it's because I'm thin, but it still bothers me because I like to know all of the information. And why is it so difficult to urinate sometimes? I was finally told that one, and how helpful it would have been had I known in the beginning that transplanted kidneys have no regulation of output volume. So instead of urinating regular amounts at regular intervals, a transplanted kidney produces irregular amounts at irregular and delayed intervals. And, as I had noticed, I was told that patients experience that most of the urinary output is..at night, when I want to be sleeping.
One thing that is really, really difficult is that there was no real communication that post-surgery would be so time consuming and busy. I had envisioned a rest period with reading, yoga and lots of time to myself. Though I have been doing a bit of this, there has been a lot of time filled with travel to and from the hospital, self-monitoring, worrying about finances due to not working much, dealing with administration for reimbursement for donor costs, attempting reimbursement from my insurance company for things they've left unpaid for 6 months, scheduling work, trying to locate an affordable school for Dutch lessons (for my lack of the language has me at such a disadvantage).
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Wendy, I can relate to so many things you write in your blog. Like yourself, my wife has undergone kidney transplantation after extended periods on both haemo and peritoneal dialysis. As I've been reading through your blog, I find myself smiling and thinking "yep, how true" or "damn those side effects".
ReplyDeleteKeep being positive and never give in.
I'm looking forward to reading your updates.
best wishes.......Davie.
Davie, How happy I am that you have found the blog and can relate. Your smiling and thinking 'how true' is exactly what I had hoped for in writing a blog! I sympathise with you; I know it's very hard on the patient's partner in so many ways. I wish you and your wife lots of strength.- Wendy
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