Normal life on dialysis
July 19, 2010 2:57 PM Subscribe
My brother has kidney failure and has been on dialysis for about a year. What are the probabilities on being able to live independently/normally, and how to go about it?
My brother has suffered for about 10 years with an immune system disorder which attacks his kidneys. It first triggered when he was at university and made him too ill to continue his course, and he lost his first job as a computer technician for the same reason. He got another computer-technician job and did well at that for a couple years, but he got laid off when the recession began to bite (they had planned to sack him in the first round of layoffs, but about a week after they told him, the company's entire network went down and he repaired it single-handedly, heh. So they kept him on for a little longer... then he got laid off anyway).
Last year, he suffered total kidney failure and had to go on dialysis. He's just now about to (possibly) be put on the waiting list for a kidney transplant. Until he manages to get a transplant (which could be years), he feels constantly tired and generally ill, he's on a massively strict diet plan (rule of thumb: if it's nice, you probably can't have it) and can't even go enjoy a pint at the pub because he can't drink more than about 200ml of fluid a day. He's been unemployed for about 2 years now, and although he can do occasional driving work on my uncle's farm, anything more than a half-day's worth leaves him exhausted.
He is, understandably, feeling pretty bummed about his future career and life prospects. He's met a half-dozen other people in his situation through the hospital, and we have a distant relative on dialysis too, but all are older than him (he's 27) and all are unemployed and either living with their parents or dependant on their significant others.
What I'd like to know is: does anyone know (or know of, or knows where there is information about) dialysis patients who still manage to live "normally", holding down jobs and supporting themselves? I'm basically just looking for anything which could point towards a way for him to manage an independent life.
My brother has suffered for about 10 years with an immune system disorder which attacks his kidneys. It first triggered when he was at university and made him too ill to continue his course, and he lost his first job as a computer technician for the same reason. He got another computer-technician job and did well at that for a couple years, but he got laid off when the recession began to bite (they had planned to sack him in the first round of layoffs, but about a week after they told him, the company's entire network went down and he repaired it single-handedly, heh. So they kept him on for a little longer... then he got laid off anyway).
Last year, he suffered total kidney failure and had to go on dialysis. He's just now about to (possibly) be put on the waiting list for a kidney transplant. Until he manages to get a transplant (which could be years), he feels constantly tired and generally ill, he's on a massively strict diet plan (rule of thumb: if it's nice, you probably can't have it) and can't even go enjoy a pint at the pub because he can't drink more than about 200ml of fluid a day. He's been unemployed for about 2 years now, and although he can do occasional driving work on my uncle's farm, anything more than a half-day's worth leaves him exhausted.
He is, understandably, feeling pretty bummed about his future career and life prospects. He's met a half-dozen other people in his situation through the hospital, and we have a distant relative on dialysis too, but all are older than him (he's 27) and all are unemployed and either living with their parents or dependant on their significant others.
What I'd like to know is: does anyone know (or know of, or knows where there is information about) dialysis patients who still manage to live "normally", holding down jobs and supporting themselves? I'm basically just looking for anything which could point towards a way for him to manage an independent life.
Where does your brother live?
What are the health services and financial constraints on his treatment options?
posted by gum at 3:30 PM on July 19, 2010
What are the health services and financial constraints on his treatment options?
posted by gum at 3:30 PM on July 19, 2010
My mom was on dialysis up until she got a transplant from my sister. The transplant was life changing and there have been times where my mom has said she would rather die then do dialysis again. :( The restrictive diet was really hard especially the drinking less liquid part of it. Having said all that her Doctors were quite firm with her that she should continue working and have as normal a life as a possible while doing the dialysis, they said and I can see this to be true, that removing the things that normalize her life would make her more prone to depression and more apt to feel awful about her treatment. So she continued to work-she did dialysis from 5:30 am til 8:30 or 9:30 and then went to work.
One thing that did help her was to replace all her drinking vessels with really small ones, an espresso cup for tea, a tiny juice class for water. This helped her track her liquids.
posted by momochan at 3:40 PM on July 19, 2010
One thing that did help her was to replace all her drinking vessels with really small ones, an espresso cup for tea, a tiny juice class for water. This helped her track her liquids.
posted by momochan at 3:40 PM on July 19, 2010
My father worked full time (desk job, system analyst) for 7-8 years while on dialysis 3x a week while waiting for his transplant. He has now had a transplant for 13 years. Here's what he did:
1. Stay focused. The object of dialysis is to keep yourself HEALTHY and STRONG while you wait for a kidney. If your brother is used to working, I suspect the underemployment is a major factor in his outlook right now. Perhaps there is some part time work or light volunteering to remain active.
2. Support is very important. You looking out for your brother is a great thing.
3. Plan everything in advance. You CAN live a normal live, including travel. Doctors and dialysis centers are everywhere. Just takes a bit more strategy.
4. Create a system to handle the dietary restrictions. My dad measured out the liquid he could drink and carried it with him during the day. My mom made or planned meals that were in line with his restrictions.
5. Recognize when you have more energy. He will continue to be very tired at times, but he'll begin to notice a pattern of when he is more alert and have more energy. He should schedule projects and social events during that time.
6. Use your resources. Lots of online resources around. I'm sure he's heard of The National Kidney Foundation and DaVita. There are thousands of people with ESRD and each has to work out their own way to deal.
A supportive family means a lot. By a stroke of heredity, my brother and I will both be facing dialysis and the waiting list at the same time several years from now. Our family has been amazing to us in quiet and wonderful ways.
You or he can memail me if you like.
posted by mochapickle at 3:51 PM on July 19, 2010 [2 favorites]
1. Stay focused. The object of dialysis is to keep yourself HEALTHY and STRONG while you wait for a kidney. If your brother is used to working, I suspect the underemployment is a major factor in his outlook right now. Perhaps there is some part time work or light volunteering to remain active.
2. Support is very important. You looking out for your brother is a great thing.
3. Plan everything in advance. You CAN live a normal live, including travel. Doctors and dialysis centers are everywhere. Just takes a bit more strategy.
4. Create a system to handle the dietary restrictions. My dad measured out the liquid he could drink and carried it with him during the day. My mom made or planned meals that were in line with his restrictions.
5. Recognize when you have more energy. He will continue to be very tired at times, but he'll begin to notice a pattern of when he is more alert and have more energy. He should schedule projects and social events during that time.
6. Use your resources. Lots of online resources around. I'm sure he's heard of The National Kidney Foundation and DaVita. There are thousands of people with ESRD and each has to work out their own way to deal.
A supportive family means a lot. By a stroke of heredity, my brother and I will both be facing dialysis and the waiting list at the same time several years from now. Our family has been amazing to us in quiet and wonderful ways.
You or he can memail me if you like.
posted by mochapickle at 3:51 PM on July 19, 2010 [2 favorites]
What country are you in? In the US, perhaps your brother would qualify for vocational/ occupational rehabilitation. That might give him funding to go back to school, and assistance finding a job. His medical condition is affecting his ability to find and keep a job, so this is exactly what this is for.
posted by theora55 at 4:02 PM on July 19, 2010
posted by theora55 at 4:02 PM on July 19, 2010
I finally paid my five bucks to say that renal failure blows.
I'm 33, and my transplant turns 4 in October. I spent my mid and late 20s; the entire predialysis to dialysis to transplant to posttransplant period working full time (desk job, Civil engineer, municipal government) and living on my own. While on dialysis, I travelled independently through three continents.
I was fortunate enough to have PCKD, which is genetic rather than autoimmune and for some lucky reason I was always able to handle my fluid balance (the pee came out, it was just clear), so I only know a chunk of the misery of the renal diet - the food restrictions, but I never bothered with the fluid ones. The one thing that helped me on the diet front was removing the foods I can't have. Since I was living on my own, one thing that helped me was controlling at the source; I just didn't own salt, milk, cheese, bananas, potatoes. That helped a little; I could look in the fridge and eat what I saw, with no delicious tempting oranges.
You didn't mention the kind of dialysis; there are two main forms -- hemodialysis and peritoneal dialysis (PD). I chose peritoneal, which made a huge difference in my quality of life. (I got to try both -- due to a complication, I spent six months on hemo, which was a bit of a low ebb. I actually wound up getting my transplant while I had three different functioning dialysis accesses in me. Sod's law and all that.)
PD worked well for me because it gave me a feeling of ownership in my situation; I had to manually dialyze myself four times daily (until I got the overnight cycler, which was another step in quality of life), so I was always doing something to help myself, rather than reporting to the clinic like a calf to a veal pen. Your brother sounds like a smart guy who would not be intimidated by the technology and responsibility. PD also makes travel much more possible. Not easy -- but it is possible. So that may be something to look into.
Oh, and one last piece of advice I swore I'd give anybody pretransplant, because I'm disappointed that no one told me -- if your brother is ever interested in traveling, he should get a yellow fever shot shortly before transplant. They're good for 10 years, mandatory for most of Africa and parts of S. America, and they don't have an alternative for immunosuppressed folks.
Also, +1 to all of mochapickle's points.
Memail is welcome.
posted by Homeboy Trouble at 5:26 PM on July 19, 2010 [5 favorites]
I'm 33, and my transplant turns 4 in October. I spent my mid and late 20s; the entire predialysis to dialysis to transplant to posttransplant period working full time (desk job, Civil engineer, municipal government) and living on my own. While on dialysis, I travelled independently through three continents.
I was fortunate enough to have PCKD, which is genetic rather than autoimmune and for some lucky reason I was always able to handle my fluid balance (the pee came out, it was just clear), so I only know a chunk of the misery of the renal diet - the food restrictions, but I never bothered with the fluid ones. The one thing that helped me on the diet front was removing the foods I can't have. Since I was living on my own, one thing that helped me was controlling at the source; I just didn't own salt, milk, cheese, bananas, potatoes. That helped a little; I could look in the fridge and eat what I saw, with no delicious tempting oranges.
You didn't mention the kind of dialysis; there are two main forms -- hemodialysis and peritoneal dialysis (PD). I chose peritoneal, which made a huge difference in my quality of life. (I got to try both -- due to a complication, I spent six months on hemo, which was a bit of a low ebb. I actually wound up getting my transplant while I had three different functioning dialysis accesses in me. Sod's law and all that.)
PD worked well for me because it gave me a feeling of ownership in my situation; I had to manually dialyze myself four times daily (until I got the overnight cycler, which was another step in quality of life), so I was always doing something to help myself, rather than reporting to the clinic like a calf to a veal pen. Your brother sounds like a smart guy who would not be intimidated by the technology and responsibility. PD also makes travel much more possible. Not easy -- but it is possible. So that may be something to look into.
Oh, and one last piece of advice I swore I'd give anybody pretransplant, because I'm disappointed that no one told me -- if your brother is ever interested in traveling, he should get a yellow fever shot shortly before transplant. They're good for 10 years, mandatory for most of Africa and parts of S. America, and they don't have an alternative for immunosuppressed folks.
Also, +1 to all of mochapickle's points.
Memail is welcome.
posted by Homeboy Trouble at 5:26 PM on July 19, 2010 [5 favorites]
Yeah I would make sure your brother has checked out peritoneal dialysis. I think the only disadvantage is higher risk for infection, which is a big disadvantage, but people do it for years. If your brother can be regimented about it, it means that he can move about on his own.
I work in a hospital sometimes and the PD people seem like they have stuff under control, while the hemodialysis people seem pretty beaten. I'm not sure that everyone can have PD but it's definitely worth exploring.
posted by sully75 at 6:08 PM on July 19, 2010
I work in a hospital sometimes and the PD people seem like they have stuff under control, while the hemodialysis people seem pretty beaten. I'm not sure that everyone can have PD but it's definitely worth exploring.
posted by sully75 at 6:08 PM on July 19, 2010
Nthing peritoneal dialysis. It can allow for more independence, a more regular diet and people often feel better and less run down because it's something they're doing everyday, rather than 3 days a week (that's the typical schedule for hemodialysis, i can't really imagine it- what if you only peed 3 times a week?) That being said, it's not for everyone. It means taking control of it yourself, and it's something that it always with you-- as opposed to hemodialysis which can be compartmentalized to a few times a week, and the rest of the time you're a "normal" person.
posted by brevator at 7:38 PM on July 19, 2010
posted by brevator at 7:38 PM on July 19, 2010
I'm so late to this AskMe probably no one will ever read my comments. I've done everything someone with ESRD can do except die. I was on hemodialysis for only 2 years before I got a kidney from someone who died in a car accident. What no one bothered to mention to me was that the disease that ruined my native kidneys had a 60% chance of ruining the transplanted kidney, so it only lasted for 13 months before I had it removed. At that point, I opted to try peritoneal dialysis. PD is much better. You feel much more normal, without the swings. Fluid intake and diet are less restricted. Big bonus: no needles. Instead of dialyzing for 4 hours 3 times a week, I would hook myself up to a PD cycler for 10 hours EVERY night. PD isn't for everyone. You must be a responsible person with a good sense of personal hygiene. PD is not for diabetics because the dialysate solution contains dextrose. I worked full time after kidney failure for 8 years before other health problems made working prohibitive. Because of surgical scarring to my peritineum, I can no longer do PD and have been back on hemo since May 2009. If you are a candidate, PD is the way to go, IMO. Also, a kidney transplant may not be the Godsend you think it is. Due to complications and disease, the 18 months after my transplant were the worst 18 months of my life. I wish I never would have gotten it, and I'm glad it was a cadaveric kidney and not one from a live donor. Americans with kidney failure are eligible for Social Security disability benefits. Anyone facing kidney failure is free to memail me.
posted by Daddy-O at 11:30 AM on February 2, 2011
posted by Daddy-O at 11:30 AM on February 2, 2011
Response by poster: Thanks all for your help, and I'm sorry for not replying when I first opened this thread - it's a bad habit I seem to have gotten into.
posted by Fen at 4:18 PM on February 10, 2011
posted by Fen at 4:18 PM on February 10, 2011
Response by poster: ... And i only just noticed daddy-o's recent answer, heh. Thanks for your reply, as well.
I should have mentioned seven months ago (!... Jeez, seriously. That's ridiculous.) he's on peritoneal dialysis - an overnight machine - and we live in the UK.
posted by Fen at 4:30 PM on February 10, 2011
I should have mentioned seven months ago (!... Jeez, seriously. That's ridiculous.) he's on peritoneal dialysis - an overnight machine - and we live in the UK.
posted by Fen at 4:30 PM on February 10, 2011
This thread is closed to new comments.
Regardless, it sounds like your brother needs some help dealing with the situation - it isn't important whether other people manage to have "normal lives," but whether he feels it is personally attainable for him.
The Renal Support Network has a great hotline for patients and family members of patients dealing with kidney disease.
There are also great websites like the Kidney Times which offers a section on patient stories. These include people who have been dealing with kidney disease since they were young kids, and those who didn't find out until they were older.
I'm sorry about what your brother has been dealing with. I really think that reading more about the community and seeing some of the other patient stories could be helpful for him - hopefully it will help him see that his disease doesn't have to define him, but it is just another obstacle in life. Best of luck to both of you.
posted by CharlieSue at 3:29 PM on July 19, 2010 [2 favorites]