My husband has been on dialysis for 5 years. He did peritoneal dialysis at home for 4 years, and then he switched to hemodialysis and now goes to a clinic 3 days a week.
I know the good and bad of dialysis. It is not fun, and I’m sorry you or a loved one are facing this.
I would strongly encourage anyone who is reasonably healthy to go for dialysis. This is because the symptoms of kidney failure are felt approximately when the GFR (filtration rate) is at 15% but the person won’t die until the filtration rate is much less. Go on dialysis until at least the GFR has deteriorated enough that there won’t be suffering.
The worst symptom my husband experienced before starting dialysis was pulmonary edema, having his lungs fill with fluid. He wasn’t anywhere near dying, but he was slowly choking. (Oxygen would not have reduced that sensation.) Dialysis eliminated that symptom.
This article, written by a doctor whose father considered dialysis, but chose to go without, agrees with my experience of symptoms. https://www.washingtonpost.com/national/health-science/a-doctor-is-shocked-by-his-fathers-struggle-with-end-stage-kidney-disease/2015/09/21/d7e80382-4ad3-11e5-846d-02792f854297_story.html.
I just scrolled down and read that Becky started! You are doing it on your own terms, too. Congratulations. Sounds like you’re active and don’t have many other health issues either. That’s good.
Have you seen the ihatedialysis forum yet? Some posts are old, but some are useful. http://ihatedialysis.com/forum/. Best of luck!
For me, old retired RN it is a definite NO. But I don't even do mammograms anymore. I won't be treating long ongoing and chronic things anymore, and at 77 I am fine with that. The age makes a difference. Dailysis is terribly taxing, exhausting, 3 days of week with no other days feeling really and with infections, limitations. Doctors will threaten you that a death due to kidney failure is very painful. It isn't,and of course they have the drugs and the hospice to help one through. Basically it is exhausting and organ shutdown. So for me there is no question whatsoever. We each must make our own decisions in any of this. Good luck.
Shane, Doing Nx. They are upping frequency right now. I’m not a candidate for transplant. Diabetic and cardiac problems. I have a dialysis nurse who comes to start and disconnect me. In between I have an LPN who stays with me. So far no problems. I’ve known for a few years I would end up on dialysis. I saved up to buy my own equipment. If I had to do this, I wanted to do on my own terms - not Medicare’s, so I self pay. I’m lucky in that my deceased husband had fantastic supplemental insurance. I turn a few things into them. I’m very compliant with diet and fluids. I had about 8 weeks of training. I went to the clinic for two weeks. I hated that. I get bored, but that is improving. I asked my question because I had read some negative comments about costs. I may be a cash cow for dialysis, but it’s my cash, not public funding.
Very good! That is the best treatment you could have chosen (but you already know that). It’s a pretty neat machine once you’ve been trained. Being an old dialysis nurse PM me if you have nurse questions (sounds like you already have great resources). Happy Holidays!
My 69 yr old friend chose to stop his. He had diabetes and had lost a leg. He was tired. He did it for a long time. Other diabetic friends reg dialysis didn't work for them. Veins couldn't take it anymore so they went piertoneal. which is the last thing.
I think its great u can do from home. No sitting all day in a hospital setting. As long as you feel good and can go on with life and enjoy I don't see the problem. Do those who oppose dyalisis understand what it is? That its a lifesaving process. Just say to those who oppose, "Its dialysis or death."
But keep in mind that we are all going to die, that's a fact. So the issue is not "if" but "when" and "how". So I think your personal situation is what you need to consider here.
Recently I read a distressing anecdote about a woman, 64 and a lifetime non-smoker, who visited her mom, 90, in a nursing home. She left the facility, went to the gas station and bought a carton of cigarettes. Guess she decided that she wanted to go sooner than her mom was.
Becky I admire you very much. Are you on NxStage or regular hemodialysis? With NxStage you need to dialysis almost every day. How long was your training for home hemo?
I worked in dialysis for 19 years; taught PD & home hemo. For you to dialyze at home takes a lot of time and dedication but your dialysis outcomes will be better if you are using NxStage.
Medicare won’t kick in as primary until you are on dialysis 33 months with whatever insurance you have being primary until then. Unless you stop working that is; then go to SS and apply for Medicare. For you to pay out of pocket is expensive. Medicare decided to cover ESRD in 1972 but they did not expect the number of dialysis patients to grow so large. Medicare did that as dialysis is expensive & felt those type of patients needed renal replacement therapy should be covered as dialysis is truly a life saving procedure.
So what are you asking? Whether it’s worth it? That’s a personal decision. Are you going to pursue a kidney transplant? I advise you to get an appt with a good transplant center and get on the list. If you have family or a friend that wants to donate that’s even better.
What is your kidney disease from? That factors into transplant success rates.
Dialysis requires a partnership between the person and their providers. The patients that follow recommendations for fluid gains and the ESRD diet do pretty well. It’s those patients that do not follow their diet & fluid gains that do poorly. Imo 85% of invented hemodialysis patients do not follow their restrictions which makes dialysis harder on their bodies and they feel like wash rags after a treatment.
I have seen hemo patients thrive on the NxStage 6x/wk short dialysis treatments. Those patients are truly dedicated to doing their part at home because while it isn’t hard to train for it, it does need to be done almost daily. They eat and drink what they want.
You should never hemodialyze at home with no one there in case of an emergency. Your training nurse probably told you that. I definitely support your decision not to go incenter.
You day you are not a candidate for transplantation. Have you met with a transplant team who determines this? I strongly feel each dialysis patient should meet with a transplant surgeon as they will review your history to see if you qualify. So if you haven’t yet done that, please don’t rule out transplant.
Best wishes to you. I’ve seen people live for decades doing dialysis so please don’t despair.
Shane, I have another big advantage. My stepson is a doctor and lives 4 doors away. I also have two step grandsons who are doctors and live close by. All three stop in regularly which is good.
those people are not you.. who are still young,and vital, They are talking about their elderly parents. May I ask why you are not a transplant candidate? Can you be in the future?
I’m on dialysis. I started about three weeks ago. I self pay everything. I don’t want Medicare making my decisions for me. I modified a room in my home, purchased my own equipment. I pay for the RN who sets everything up and all of the supplies. I do standard dialysis not piertoneal. I’m not a transplant candidate.
I asked the question because so many people seem so opposed to dialysis.
I still teach classes at the U. I also still do medical transcription. Working and self supporting.
Becky if this is for you, you are still young, and are you a transplant candidate? I had a friend who did great with it, we even went on a vacation to Jamaica together, the travel agency found a place for her there and she did it fine. Had a wonderful trip! She only passed after she tried the "in home" process,, that would make me nervous. I know it is hard,, but you are too young to give up, after all you have been through. We still need to meet up for a West Virginia holiday!
My step father age 90 has been on it for 6 years, he has no quality of life, heart issues, cancer and more, it is a big mess. The doctor told me that if he goes off of it he will die without any pain. It is a big money maker, until the late 70's Medicare would not pay for dialysis for a senior over a certain age (don't remember the age).
Since I do not know the age of the person it is hard to answer yes or no. My step father's doctors have said that if he wasn't so old they would recommend a transplant. I think that the age of the patient makes a big difference and what other aliments they might have.
For your brother? What does he want? Is it at home or in a clinical setting?
A childhood friend's dad was on dialysis for years. His kidneys were damaged by Diabetes. He had had cancer once and beaten it. He was doing dialysis at home and was quite poorly, although only in his early 60's.
When the cancer came back and was in his bones he had had enough. He made the decision to stop his dialysis. He talked with his doctors and family. He planned his funeral. He also planned to stop his insulin injections. His doctor thought he would go into a coma withing 2 weeks and then would be taken to hospital. He died at home 3 days after stopping dialysis.
You've got this.
I know the good and bad of dialysis. It is not fun, and I’m sorry you or a loved one are facing this.
I would strongly encourage anyone who is reasonably healthy to go for dialysis. This is because the symptoms of kidney failure are felt approximately when the GFR (filtration rate) is at 15% but the person won’t die until the filtration rate is much less. Go on dialysis until at least the GFR has deteriorated enough that there won’t be suffering.
The worst symptom my husband experienced before starting dialysis was pulmonary edema, having his lungs fill with fluid. He wasn’t anywhere near dying, but he was slowly choking. (Oxygen would not have reduced that sensation.) Dialysis eliminated that symptom.
This article, written by a doctor whose father considered dialysis, but chose to go without, agrees with my experience of symptoms. https://www.washingtonpost.com/national/health-science/a-doctor-is-shocked-by-his-fathers-struggle-with-end-stage-kidney-disease/2015/09/21/d7e80382-4ad3-11e5-846d-02792f854297_story.html.
Have you seen the ihatedialysis forum yet? Some posts are old, but some are useful. http://ihatedialysis.com/forum/. Best of luck!
My 69 yr old friend chose to stop his. He had diabetes and had lost a leg. He was tired. He did it for a long time.
Other diabetic friends reg dialysis didn't work for them. Veins couldn't take it anymore so they went piertoneal. which is the last thing.
I think its great u can do from home. No sitting all day in a hospital setting. As long as you feel good and can go on with life and enjoy I don't see the problem. Do those who oppose dyalisis understand what it is? That its a lifesaving process. Just say to those who oppose, "Its dialysis or death."
Recently I read a distressing anecdote about a woman, 64 and a lifetime non-smoker, who visited her mom, 90, in a nursing home. She left the facility, went to the gas station and bought a carton of cigarettes. Guess she decided that she wanted to go sooner than her mom was.
I worked in dialysis for 19 years; taught PD & home hemo. For you to dialyze at home takes a lot of time and dedication but your dialysis outcomes will be better if you are using NxStage.
Medicare won’t kick in as primary until you are on dialysis 33 months with whatever insurance you have being primary until then. Unless you stop working that is; then go to SS and apply for Medicare. For you to pay out of pocket is expensive. Medicare decided to cover ESRD in 1972 but they did not expect the number of dialysis patients to grow so large. Medicare did that as dialysis is expensive & felt those type of patients needed renal replacement therapy should be covered as dialysis is truly a life saving procedure.
So what are you asking? Whether it’s worth it? That’s a personal decision.
Are you going to pursue a kidney transplant? I advise you to get an appt with a good transplant center and get on the list. If you have family or a friend that wants to donate that’s even better.
What is your kidney disease from? That factors into transplant success rates.
Dialysis requires a partnership between the person and their providers. The patients that follow recommendations for fluid gains and the ESRD diet do pretty well. It’s those patients that do not follow their diet & fluid gains that do poorly. Imo 85% of invented hemodialysis patients do not follow their restrictions which makes dialysis harder on their bodies and they feel like wash rags after a treatment.
I have seen hemo patients thrive on the NxStage 6x/wk short dialysis treatments. Those patients are truly dedicated to doing their part at home because while it isn’t hard to train for it, it does need to be done almost daily. They eat and drink what they want.
You should never hemodialyze at home with no one there in case of an emergency. Your training nurse probably told you that. I definitely support your decision not to go incenter.
You day you are not a candidate for transplantation. Have you met with a transplant team who determines this? I strongly feel each dialysis patient should meet with a transplant surgeon as they will review your history to see if you qualify. So if you haven’t yet done that, please don’t rule out transplant.
Best wishes to you. I’ve seen people live for decades doing dialysis so please don’t despair.
I asked the question because so many people seem so opposed to dialysis.
I still teach classes at the U. I also still do medical transcription. Working and self supporting.
Since I do not know the age of the person it is hard to answer yes or no. My step father's doctors have said that if he wasn't so old they would recommend a transplant. I think that the age of the patient makes a big difference and what other aliments they might have.
A childhood friend's dad was on dialysis for years. His kidneys were damaged by Diabetes. He had had cancer once and beaten it. He was doing dialysis at home and was quite poorly, although only in his early 60's.
When the cancer came back and was in his bones he had had enough. He made the decision to stop his dialysis. He talked with his doctors and family. He planned his funeral. He also planned to stop his insulin injections. His doctor thought he would go into a coma withing 2 weeks and then would be taken to hospital. He died at home 3 days after stopping dialysis.