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Sangye
10-30-2009, 11:06 AM
Lots of you folks have been on dialysis. Can you describe it for the rest of us? I've always wondered what people go through with it.

Doug
10-30-2009, 02:50 PM
Lots of you folks have been on dialysis. Can you describe it for the rest of us? I've always wondered what people go through with it.

After a stent is installed surgically in your chest or neck (with weggies, the neck is the only suitable place to install a stent- or two, as was the case for me), you will be placed in a recliner with a small television set that can be swung in and out of place in front of your face. I only used it the first time because I was ignorant. After that, because you feel tired, the temptation will be to rest (i.e. "sleep"!) during the hours-long procedure, but the technician involved will try to assure you stay awake so you can let him or her know if you feel any problems coming on or so you can respond to questions they have when they adjust levels of blood components (potassium, etc.) their on-going testing indicates needs adjustment. You hold a plastic tube in your lap that is your blood after it has been through the machine and it reheated to body temperature. If you are in a typical hospital room, it will be so cold, you will welcome the warmth! I suppose the procedure leaves you cooled down, too, but I can't speak to that. I can say that the procedure leaves you very relaxed and blissed out, not at all unpleasant, but you will not like people interacting with you for some time after the procedure as you will want to rest. That's my experience with it. I'd be interested to hear other's experience with it, to see if my experience was unusual or typical.:p

Jack
10-30-2009, 06:40 PM
There are two types of dialysis - hemo as described above and CAPD which is the one I was on for 18 months.

CAPD (continuous ambulatory peritoneal dialysis) is done by pouring a litre or so of saline solution into your peritoneal cavity (that's the bag inside you that holds all your bits in place) through a permanent catheter. This then absorbs all the nasties over the space of 6 hours and effectively turns into urine. You then drain this out and exchange it for a fresh solution four times a day.

I used to experience a few twinges during exchanges, but otherwise it was quite comfortable and it meant that I could still do most things (like going to work). However, the system is no replacement for working kidneys and I felt a bit unwell most of the time and fainted a few times. I'm not sure how long I could have continued without big problems.

andrew
11-01-2009, 10:45 AM
It has been over six yeasr since I was on Dialysis. All I can remember that, like Doug, it made me tired. I had a stent first in my inner thigh (when in ICU) then in my neck for the rest of my hospital stay. Other than feeling tired, it didn't really affect me. I had visitors during most of the sessions and was quite fine to chat during proceedings although not constantly :) I tried to bring a book in once but it took too much concentration to read. Unlike Doug, we had no TV, just a nurse or visitors. I did lose heaps of weight while I was on Dialysis. Must try and get myself in there again ;)

Sangye
11-01-2009, 01:32 PM
Don't you dare.

jola57
11-01-2009, 04:25 PM
I'll sick Duffy on you if you do

andrew
11-02-2009, 05:45 AM
I'll sick Duffy on you if you do

Nah, I was just thinking of sneaking in for my 100,000km service, not about getting sick again :D

Sangye
11-02-2009, 07:18 AM
I think I need new spark plugs. :)

Doug
11-02-2009, 07:56 AM
Get a cat. No, two! Wait, I feel more tired than before. Get a guppy. A male guppy, because females all are pregnant and eat their young. But not all of them or enough of them. Get a plant. A philodendron. Not a big one, though, because you will be overwhelmed with foliage soon enough. New sparkplugs are over-sold. Get a new car instead. And trade it in for a... never mind! Ignore me. My pain meds just kick in. What?! :eek: I feel catatonic.

Jack
11-02-2009, 08:13 AM
Wasn't there a post once about threads running off topic?

How come there are so many people on here who have been on dialysis, but then recovered when I did not? I feel hard done by! :(

Sangye
11-02-2009, 09:37 AM
I totally understand, Jack. When I read about some of you guys who were near death and back to work in a few months I wonder, "Sheesh, what went wrong with me?" There are too many factors to ever know what to expect and why each of us has had different outcomes. It is what it is. :)

Doug
11-05-2009, 07:30 AM
Mine was done in conjunction with plasmapheresis, which may be the deciding difference. Seven days of dialysis, followed by a day off, followed by dialysis and plasmapheresis right after it (these were very long days!), followed by a day off, followed by dialysis and plasmapheresis right after it. I started to feel very much recovered by the first day of dialysis and plasmapheresis, and on the road to health (if still feeling a bit an invalid) after the second. It was a remarkable transformation I hadn't anticipated after nearly six weeks of hospitalizations in three hospitals in two states. It seemed my rheumatologists, nephrologists, and pulmonologist all were in communication with each other and were accepting the guidance of the most capable group of physicians involved with WG, the rheumatologists. At one point I even had an immunologist from Jewish National Hospital in Denver involved in my care. From the stories reported here, unfortunately, it seems there's an awful large degree of luck in getting the right combination of medical personnel working together toward the same approach to the same goal. I was one of the lucky ones. And I had the severe form, with kidney involvement.

Sangye
11-05-2009, 08:03 AM
This brings up an interesting point. I'm going to start a new thread called Plasmapheresis to address it.

Jack
11-05-2009, 08:13 AM
When diagnosed, I was first treated by the rheumatology department, but after a very short time they transfered me to the care of the renal department due to the state of my kidneys. They all worked together on vasculitis research so it made little difference from the Wegener's point of view. I immediately underwent a course of plasmapherisis, but permanent damage had already been done.
I then went through a period of around 12 months without dialysis (on a restricted diet), but with deteriorating kidney function. This had been predicted from the outset. My kidneys finaly gave in and I went onto dialysis (and a different restricted diet) for 18 months until I had my transplant. :)

coffeelover
11-05-2009, 12:57 PM
Jack,

After all you have been through.. You have a great insight and even better attitude.
We/I appreciate that
Lisa