My husband has been chronically ill for 13 years. Stroke with after effects of balance problems with several falls and broken bones, Aortic aneurysm repair, and, the main problem now is End stage renal disease. He doesn't want dialysis and I don't think he really knows enough about it, but, he is adamant that he will not spend 6 hours a day 3 times a week " on a machine". He doesn't want to talk about kidney disease. His GFR is 20; urea nitrogen 42;Creatinine 3.05. He is 79 years old. I am 78. We are both exhausted. A recent fall brought me down with him and I broke my foot, spending 4 months in a cast and then a boot. He had to go to a nursing home because I couldn't take care of him. It was "dangerous" for him to be home. He is still there, thinking that he will come home, but my children are afraid that we will both get hurt. I am an emotionally a wreck, cry alone every night....I really want him here, but, I am not sure I can take care of him. He is a wonderful man, but, often takes his frustrations out on me, snapping and bossing. The last two falls he injured his head. He passed out briefly after the last one and had a small seizure.....it scared me so that I still see it, and, the blood all over the floor. I just don't know how to cope. A psychologist is seeing him tomorrow and he is in a nice nursing home........Thanks for listening.
I feel very much for you both. I am no expert in these areas but read the forum regularly as am in stage 4 CKD, age 49 due to a different chronic medical problem (bladder removed, causing chronic kidney infection) . As sad as it is it seems he is in the best place for care. a person is considered to be in ESKD when the egfr falls below 15 so it may still be some months until that happens ie gfr of 20 is stage 4. For dialysis he will need a fistula in his thigh or forearm. This is recommended when gfr falls to 30, mine was done recently as it is essential for dialysis and takes about 6 months to mature. A fistula graft can be made instead which is what I had done, and this can be used immediately. I have no answers for you but as I said I feel for you. sometimes its just good to get things off the chest somewhat, it is an awful situation for you both. all the best and in my thoughts and prayers
Thank you for your kind words, warney....He had the fistula put in about 8 months ago. The Doctor never gave much info to him, but, rather assumed that he would want dialysis. His words: "Well, we'll put this in your arm now, just in case you need it". From that we BOTH took it to mean that there was a possibility that he wouldn't need it. Doctors don't like to talk about it either I find.
You have my greatest sympathy for your situation, and, I'll pray for you.
Thank you for the information, too. Most helpful. Nanticoke
it is an individual choice in the end, perhaps it seems you both may need to push for more information. He will certainly feel a lot better if he does agree to start dialysis as it will balance out the essential blood chemistry. It is inconvenient there is no doubt but at least the rest of the time in between treatment he will feel so much better than present. Depending on the bloods, some people even in eskd may not need dialysis until well under 15, although that seems the usual. I think you both need to push for more information on the benefits. Personally, as I am starting to be quite symptamatic at times, I am not looking towards it with dread but hopefully an improved quality of life once it progresses further. Home dialysis is also an option but I am not quite at the stage of looking into these things yet thank goodness:)
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