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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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 .
about 1 month 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?
Mrs Gibson said...
about 1 month ago
My husband has Stage 5 CKD. He has been advised to find a donor although he is not on dialysis yet. He has 4 more tests to complete before he's put on the organ transplant list. I prepare his food daily. Since his diagnosis his mood swings are affecting our relationships. He just snaps for no reason. When he does he treat hens to harm himself. I am the brunt of his abuses. He's scheduled to have a fistula procedure on Thursday and now wants to cancel it after his blow up this morning. I can't take it anymore. I am stressed all the time and being a breast cancer survivor, stress is not good for me. I feel like leaving him for my sanity.
about 1 month ago
Feeling drained. Marc is up all night from stomach pain, again. Dialysis may help some, but ever since he started (3 years ago) it seems downhill. It's so very hard watching this, trying to be the strong one when inside, I'm losing my mind. I'm angry. I'm worried. I'm just so tired.
2 months ago
So I finally decided to find some forums to vent on. There are days when I feel very alone. Meaning, is there anyone else dealing with a similar situation. I am sure there are but man,.. nobody I know family or friends can really understand.
I am about to turn 42. My wife is 45. We have been happily married for 18 years. Heck we were kids when we met. What a road it has been.
She was diagnosed with Renal Failure soon after we met. At that point it was just beginning signs...headaches, getting sick more often than normal. Hypertension. They tried variety of drugs to slow it down. great doctors and all but we had no idea what was headed for us.
The last 18 years have had so many crazy ups and downs I have blocked about 50% of them from my mind. Some highlights, she actually had a transplant from a living donor ( good friend ) several years ago, It started off good but failed. Since then she first tried PD dialysis ( that was a disaster ). After a few near death experiences ( CHF ) she switched to Hemodialysis.
Hemo worked far better for her but the trips to and from the dialysis clinic was a nightmare. I remember it was a very bad winter the year we had to start, and this is also when she was losing muscle function due to muscular dystrophy. Yeah, she has that too. Slow but steady progression. She can no longer walk or shower etc without aid.
Also in the mix have been countless surgeries, countless trips to the hospital. Countless calls to 911. The fear of knowing if the latest trip to hospital will be our last. She has had a handful of events that required breathing tubes. In the past year her blood pressure has resulted in near strokes. While thankfully no stroke detected , there was brain swelling and some "minor" damage to let side of her brain. But how can anything of this nature really be "minor". All pretty serious shit if you ask me. And we have enough to fill a novel.
She is an amazing person. She is an absolute inspiration to everyone she meets. The Irony is old friends and family I think grow weary, resentful and fearful..things change people move on. Yet she constantly meets new people that come to the house and they just fall in love with her.
I have always been the one that struggles a little with negativity and would get down. But she was always so strong and positive. However in the last year, it's just finally caught up with her and myself. Through all of this we have been pretty successful, fairly energetic and pretty good lives all things considered. But when emotionally and mentally it catches up with you ..it really catches up with you.
Through all of this I worked my way up at my job of 15 years. I was a successful Software Development Manager. Last year I was on the verge of a promotion to Director. Then suddenly things just caught up with me in all facets. The job went corporate ( we were bought out ) and suddenly work was a mess. I was pulling 70-80 hour weeks. my job was threatened. Meanwhile, things are catching up with the wife at home. Mentally and physically.
When the job goes to [profanity removed], and things at home goes to [profanity removed]...it is well..a [profanity removed] sandwich. I battled through it but this past march I was crashing mentally. It is weird when you finally realize how depressed you are. You realize you might be having bad panic attacks and you never even realized it. You throw a tantrum because you drop a mug. One day you are driving and you just suddenly do not know where you are going, too many things running through your mind and you have to pull over.
So, I went on FMLA. Then FMLA turned into short term disability. My Doctor recommended it. It was a lifesaver, however I knew this was a risk for my Job. I returned to work after a 6 week leave. I came back as energetic and positive as I could but I knew something wasn't right. I knew lay offs were planned for June in fact being the manager, I was part of the planning. I knew how much we had to cut. Long story short things got weird and I knew ..just knew they were putting me on the block. Awful.
In June I was laid off. Since the lay off I have probably put in about 15 hours a week looking for work. Much less than I should. Sadly taking care of my wife and just fighting the will to wake up and be motivated is a struggle. I got a great Severance thank goodness. It has been a relief in some ways. But also infuriating. If I was not a caregiver..I would still have a job. Then again, the job was going south.....but being a caregiver had an impact. When things get corporate the get heartless. Heaven forbid they keep someone with an ailing wife who might need to take time off. SInce I could no longer work flex hours i pulled the FMLA card. Then they pulled their card.
I am emotionally drained over the Job experience. I am emotionally drained over being a caretaker. I am starting to wonder if I can do both anymore. I feel guilty that I feel this way.
I am 42...and I am tired. I am very tired. There are no programs I can find to help. Our reliance is on friends and family. We are paying some people to help with cleaning - they are friends and pretty cheap...but it is still a chunk to pay.
I am wondering if getting a Job and keeping it is even feasible anymore. But not doing so is going to be financial ruin. Just..ugh.
All I wrote here is really scratching the surface. Just wondering how many others are in my position and at this age. I am certain dealing with this as seniors has it's struggle too. But I am too young to retire. I do not have social security. Thankfully we did pretty well saving money, 401k but....it is not that much either....
We love each other very much. We are like cats. We land on our feet and bounce back up. But each bounce is a little less. And it is getting hard to just get along now.
Thanks for reading. sorry if this was too long.
Linda Negley said...
3 months ago
My husband has stage four renal failure ,dialysis 3 times week,almost lost him in surgery a year ago. Things have changed between us. He's quiet, doesn't want to talk about his conditions and I feel like he hasn't any connection with me. We've been married 31 years and up til no no problems. I have stress and panic problems because I feel like I'm losing contact with him. We love each other but other things seem more important than us. He works a part time job because he wants to. It's hard on me mentally because I want some of his time and affection. Am I wrong ? We never do anything together.
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