ERD-end renal disease
Kidney Disease, treated with dialysis, can not be cured without a transplant. This group is for those have or care for someone with Kidney Disease.
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Rollercoaster Betty said...
3 days ago
This is my first time reaching out to a support group but I am so tired and so confused! My 82 year old mother was diagnosed with stage 5 ERD 6 weeks ago and is not a candidate for dialysis. The doctors sent her home from the hospital with Hospice and told us to start gathering the family, that she probably only had 2-3 weeks. My 2 daughters and I have basically put everything on hold to care for her in her own home. Two days ago she did not even know my name and was sleeping about 75% of the day... today she was up wanting to plan a shopping trip.... and this has been the way it has been for the last 6 weeks. We never know from one day to the next if she will even be able to walk without us holding on, if she will be compliant or defiant to any and every single thing, or if she will seem relatively healthy. Is this normal for this disease? The Hospice nurses and doctors are wonderful, but they are baffled as well and say renal failure is a tricky journey. I don't know what to do about my job and every other commitment in my life that I have put on hold. My mother is completely against anyone else coming in to help with her, but she cannot be alone. This is truly an emotional roller coaster!
4 months ago
I have been caring for my mother with ERD. She was sent home on hospice 2 weeks ago and is not a candidate for dialysis. I was wondering, how do we know how long my mother has left? upon discharge her GFR was 6 . 4, but now that we are on hospice they focus on symptoms and comfort and not the "numbers"...I guess my question is, how long can someone survive with this disease? Thank you!
7 months ago
My husband has just been diagnosed with ESRD so we are still reeling. He has refused dialysis because he is 76 and has other health issues and already has a poor quality of life, so the ERSD diagnosis does explain some of that. His concern is knowing what to expect. He is "on the doorstep of stage 5". Any insight would be welcome.
Yankee witch said...
8 months ago
My husband has been on dialysis since 2007. He has been driving himself 3 times a wk to the renal center. I worried constantly about him driving especially in winter. He was sleeping all the time & we had no real life. 2 yrs ago he had bladder cancer but was really lucky as the doctor was able to get all the cancer which had not taken root into the wall of the bladder. A few months ago we started home hemodialysis. I retired 4 yrs ago so am able to do it for him. It takes approximately 4 hrs start to finish although his actual treatment is only 2 1/2 hrs. I had to get rid of alot of things to make room for the dialysis chair & the 2 machines & all the supplies. It is worth it as he actually stays awake all day most days. We do it for 5 days a wk & get 2 days off as long as they are divided. He is eating better & not throwing up so often. He is not a candidate for transplant. He now has another tumor this time in his ureter & he will be having surgery to remove that kidney & ureter. I handle everything to do with his treatment, the supplies, most things around the house & the bills. I am exhausted especially since I have chronic pain, chronic depression & panic attacks. I feel so alone. My wonderful grandson comes down & mows the lawn & plows the driveway & other jobs I don't know how to do. Although I am glad we started doing the home dialysis because he has greatly improved, I feel as though my life centers around the machines, moving supplies & his treatment. I can't go to visit our daughter or son who lives away. I try to tell myself that he has it much worse than I do & not to whine. His short-term memory is also getting really bad so I can't trust him to be alone for more than a few hours. I feel guilty that I feel the way I do.
Thank you so very much means alot. This has been the first time I've actually felt like someone understands what this experience feels like. There will plenty of those days, the dying,helpless, alone days. This site is a wonderful place, I'm finding out. Do ask for help this....illness...not only takes alot out of the person going through it but it drains us as well. Oh yes the diarrhea, that will eventually go away. I used to worry when my Kris wouldn't eat his appetite had left he told me. It seemed like forever when it returned. There are days when he'll only eat 1 small meal a day, but I'll take that over nothing at all. One thing I've been learning is take a long deep breath and I tell myself "let's get through this day" .
After 4 years I've finally found a place to let it all out. I've been reading all of your posts and I know what each of you is going through. My husband has ERSD for alittle over 4 yrs now. He started off with peritoneal dialysis and a year later was put on hemodialysis. As I've read through each post on here my heart goes out to each and everyone of you because even though it's been only 4 yrs for my husband ,we've been through abit of everything you all are experiencing. On February 13,2012 my husband was put on peritoneal dialysis..on January 9,2013 he was admitted to the hospital and had his right leg below the knee amputated along with having a catheder placed for hemodialysis. The wrong meds being given, meds being tried and not working. Visits to the er and finding nothing, but your spouses pain in bringing them to tears in front of you. You feeling helpless and angry. Hearing him/her gagging and crying, complaining of the pain no one else feels. Along with countless other things. People get "freaked" when they ask and I tell them about my husband. See he's not only in ESRD but he is also blind...has a leg amputated, hypertension. I am his only caregiver with the exception of our 4 kids. One has moved away our oldest daughter visits and helps the two youngest try and help but one is 13 and the other 9. I'm grateful for what they do help with. But after 4 years of doing all I can , I'm so tired and just at my ropes end .
10 months ago
I'm scared. Marc went to E.R. for his leg infection that didn't go away with antibiotics and he was in pain. They admitted him, but said hee had a mild heart attack. He didn't. Kidney patients always have an elevated level in their bloodwork. He was given dilaudid in the er, and ativan iv that evening. I came home, and he was fine. Told me go get rest. I came back the next morning, and he was acting like he was on too much dilaudid. Hallucinating, twitching, not making sense but conversing clearly. I asked the nurse how much pain meds he had been given. She looked and said none. I said something is wrong. Our friends and family came to visit and experienced the same. Our friend is an icu nurse, she suggested delirum. He came home last night, took all I had to get him comfortable to sleep. He has been moving and talking for three days. No tumor, no stroke. No clot. I don't know what to think. He's not the same. Had anyone experienced this before? Suggestions?
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