Last week my wife was hospitalized, after experiencing shortness of breath for several days. We now know her kidneys have failed. No, she does not have diabetes, and although she has hypertension it was well controlled. What I’m wondering now is do any Dopers have some knowledge to impart. Assume I know nothing, which as it happens is true.
I knew someone who survived an entire summer with no kidneys. When she went into the doctor’s office for a routine exam, they marvelled that she was still alive.
After a week or so, she was on peritoneal dialysis. She had to do an “exchange” about every 3 hours or so. That means that she had to let about a gallon of liquid drain out of a tube in her belly, and then put more liquid back in. It took about 30 minutes. The liquid was supplied by Baxter, and they’ll deliver it pretty much anywhere. We went on several vacations together, and Baxter always pulled through. She lived a fairly normal life, although she had to keep things very sterile.
On occasion something went wrong, and she’d have to do hemodialysis, which is a bit more of a pain. She’d have to sit in a hospital room for 2-3 extremely boring hours. That was maybe twice a week. And her diet was pretty restricted during that time. (No bananas, potatoes, or tomatoes, for instance.)
Maybe a year in she got a transplant from a non-blood relative. That went really well, but she then had to take a bazillion pills every day, and took steroids, and basically had to live as if a slight head cold could kill her.
Her life was never the same again, but it was pretty close to it. She could have expected to live another 20, 30, or even 40 years.
She got unlucky, though. But what happened to her is thankfully very rare.
Well, I opened this thread because several years ago, my right kidney went bad, and last September I had to have it removed (it was great, btw; I haven’t had a kidney infection since then. . .this is the longest I’ve been infection-free in years).
But both kidneys failing? I don’t know from that, so much. But I did want to give my support, and tell you I’m sending best wishes your way!
I’m sure you’ll get better answers than my second-hand experience, but here goes…
My father was diagnosed with End-Stage Renal Disease (basically, both kidneys barely functioning) about five-six years back. He’s been on hemodialysis (the second course tdn described) since then. He goes into the dialysis center three times a week, for 2-3 hours on the dialysis machine.
He was retired at the time, so that wasn’t the biggest inconvenience.
He’s on a renal diet - low sodium, low liquid intake, and many foods to avoid.
Sometimes the dialysis tires him out a lot - other times not so much. For the first several years he was driving himself to and from dialysis, which has now stopped (thank goodness).
He’s had several hospitalizations over the years since then - but he has a LOT of other health problems besides the kidney problems, so it’s hard to say how many of them are due to the kidneys.
He’s done at least two major vacations that I can remember since he started dialysis - once to Hawaii. It’s relatively easy to get set up with appointments at dialysis centers when he travels.
He’s not a good candidate for a kidney transplant because of his age and other health problems, but I know for some (many?) people with kidney failure that’s a preferred option, for obvious reasons.
There are a ton of good resources out there - National Kidney Foundation is a great one to start with.
Best of luck!
I really thought this thread was about me…
Best wishes to your wife for a speedy recovery. Hang in there!
Thanks for the responses. I just got back from the hospital, she’s handling in stride, I’m kind of freaked.
Stuffy, my best wishes to you and your wife. This is an incredibly tough time; the shock and fear you are going through right now is awful, but it does get better.
I was in your shoes in 2002. My husband was having terrible headaches, and when he went to the doctor they found he had extremely high blood pressure. Thank goodness they took a look at his file and said “Your blood pressure wasn’t this high a year ago, you’re only 33, let’s see what’s going on.” That was a Monday, and by Friday he was in the hospital starting hemodialysis and we knew he would need a transplant. 11 months later he received a transplant from a deceased donor; today, you would never know it happened other than the large scar and the 3x per day medication - and increased germ awareness.
What you need to know:
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While scary, this is totally do-able. The first couple of days after getting the news are terrible; once you start moving forward on dialysis and dietary stuff and figuring out how to get the transplant process started it still won’t be fun, but you’ll have something to do to help rather than just worry.
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Dialysis sucks. Really. But it’s better than the alternative. Hubby did hemodialysis for 4 hours at a time, 3 days a week in the evenings after work and continued to work full-time. I can’t speak to the peritoneal dialysis.
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She’ll probably be pretty tired. Dialysis can’t fully replace kidney function, although there is talk about increased effectiveness from the overnight hemodialysis.
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There will be a few medications and some dietary restrictions, but they are livable. Excess fluids, phosphorus, potassium and sodium are the big enemies. This means limited fluids and dairy and potatoes and tomatoes and orange juice and some other stuff - oh, and limited processed foods because of the sodium.
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Transplant donor matching technology and anti-rejection medications are both constantly improving. There is no reason to believe that she’ll have anything other than a normal (aside from a handful of expensive pills every day) life after transplant.
Be sure to take care of yourself! Being the partner / caretaker is unbelievably emotionally draining - don’t discount that. Ask any questions you want here or through a PM, and let me know if you or your wife want to talk or email with my husband. He’s always happy to share what his experiences were if it will help reduce the freaking out.
Thanks Winkie, you’ve given me a lot to think about. She came home yesterday and has her first dialysis post-hospital today. We (the docs and us) haven’t discussed transplants other than in passing early last week.
If peritoneal dialysis is an option at some point, there was an earlier thread on this by Doper Odinoneeye.
Speaking personally, I didn’t find that to be true. It was largely inconvenient at times, but my life more or less remained unchanged.
These folks, at the American Kidney Fund should know what they’re talking about. I’m sure you’ll find lots of good info there as well as at the links they provide.