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Getting a port put in tomorrow. Will do home dialysis. Lots of questions. Any users out there?
Hi @beach757, so good to hear from you again. I assume that since you are starting home dialysis that you have not had kidney transplant yet and continue to manage stage 5 chronic kidney disease as you wait.
There are several members who have experience with kidney dialysis who will be interested in joining this discussion with you, like @rosemarya @gingerw @threerrr3 @charicen @kathleenla
Beach, do you have questions? What worries you about getting the port tomorrow and starting dialysis?
beach757, I just now read your post, So I am sorry for the late reply. How are you doing today? Did you get the port as planned?
Any and all info re dialysis prep and dialysis, even negative, will be appreciated, incl details about vascular port, what dialysis is is like during and in between sessions, etc.
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@kamama94 May I suggest you go to rsnhope.org
This website is run by a lady who has had kidney disease since age 3, is now on her fourth transplant. There is a lot of practical education there dealing with the ins and outs of renal disease, and dialysis. There are podcasts and articles to listen to, also. She also hosts Zoom support groups twice a month.
Hope this helps,
@gingerw, thank you, will go there.
@kamama94, I had dialysis before my transplant in an emergency setting, so the 'prep' for me was immediate and the decision to proceed with an emergency port and begin dialysis was left to my family. I spent 6 – 7 weeks on dialysis (bedside. inpatient and out patient). When I was strong enough to do outpatient, I had a chest portal, and it left my arms free. My BP was taken before and after my treatment, standing and reclining. And my weight was taken before and after treatment so they could monitor the amount of fluid that was drawn from my body as I had extreme ascites (abdominal fluid due to liver failure) and edema (due to the acute kidney failure).
During my outpatient treatments, I mostly dozed while listening to my music thru my headset. I did some light reading, word and number puzzles, chatting with the fantastic nursing staff, and there was the option of a TV. I usually was hungry and felt better after treatment, but was tired.
I would like to tag some members who have participated in the Transplant discussion. I think some of them might have some dialysis experience that can help you as you prepare for dialysis. I invite: @marvinjsturing, @joanaiken, @zon, @ebrahim, @stephanierp, @birdienanie, @guidant07, @rwalkie, @parojulie, @linnea84, @jolinda – did you have to have dialysis? Member @kamama94 is seeking information as she is beginning to undergo dialysis. What was it like for you to prepare for and to undergo dialysis?
The Mayo clinic was tracking my kidney failure well before my transplant in 1981. They had put a fistula in my left arm months prior to starting dialysis. I started dialysis 18 weeks prior to my transplant. Every Saturday morning my mom and I would drive down to Rochester for dialysis at the Plummer building. She came along because I was in no shape to drive back to the Twin Cities after treatment. The most memorable experience during all of this was talking to the young kids that were getting treated the same time I was! I was 25 at the time and there wrere kids as you as 10 getting treated every Saturday along with me. Loved the conversations we had! It sure made the time go by quickly!
To be clear – not on dialysis YET but with eGFR dropping from 37 to 20 (shingles?) in 3 months, it's time to consider port placement. Even if labs improve at least I'll be ready. I'm 75 and could not get on a transplant list so if renal failure does the inevitable progression it will be dialysis and die later as opposed to no dialysis and die sooner. Sorry to be Debbie Downer but I'm a realist. And I've read nightmare stories by people my age on dialysis – nausea, extreme fatigue (I'm ALREADY queasy a lot and with fibromyalgia fatigue is always with me.)
Does your hair really fall out?
Do your fingernails really turn black and fall off?
Do dialysis patients really lose fingers and/or toes or – worse – have to suffer limb amputations?
Do you really have to be on a machine 4 hours a day three days a week?
Do you really need at least a half a day to recover from a dialysis session then feel well another half day before starting to feel awful again the evening before dialysis?
How long can 70+ year olds with CHF, COPD, and well-managed diabetes expect dialysis to work before the law of diminshing returns begins to apply?
How badly does quality of life deteriorate and how fast?
Is the nanomesh available? Is it affordable? Does it work? Where can it be done?
I started having kidney problems in 2015. My fistula was put in in December of 2015. It is now about 5 years later and I am not yet on dialysis. My last GFR was 16. I was on the kidney transplant list at Mayo and at Nebraska Medicine. Because of a recurrence of pancreatic cancer, my name has been removed from both lists. I go back to Rochester in October for another PET/MRI scan. If the tumors are growing I will have to have chemo. I have been told that because of my kidney problems, I will have to have dialysis 1 hour after every chemo treatment.
Praying for you Marvin.
Sending you well wishes and healing light, Marvin. Keep us posted.
I just finished watching an interview about supplements and kidney disease and I learned something I wanted to pass on, the endocrinologist being interviewed said that Flax Seed is extremely high in phosphorus and can be very dangerous to kidney patients. A big concern was that most people think it is a food so they forget to tell their doctors about it. Who knew?
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