Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

431 Members

2,164 Posts

0 Online

rogerjd 02/27/2012

Just a quick update aout my home traning sessions. I am now on week 6 and they have told me today that everything is being put into place so I can start home dialysing on 19th March. I can't wait- I am soooo excited!!!!! Once I'm doing my own I'll be able to control my own fluid intake, which at the moment is 500 mils per day and is very difficult to cope with-I'm obsessed with thoughts of drinking!!!. Unfortunately my dialysis hangover symptoms are still causing me issues and interfering with my life but I am assured that this will definitely get better once I am doing regular gentler sessions. My house has been plumbed for the machine and it doesnlt look bad at all. The filtercylinders are on a board which is nailed to the wall soif I am ever lucky enough to not need it the mess will be minimal. I will post another update once I am up and running at home- wish me luck!!!

deleted_user 02/27/2012

I wish you luck, are you going to do NxStage? I was one of the pioneers in that and I'm sure it has improved since I did it.
as to fluid removal, I seem to recall that you had your kidneys removed and must restrict fluid. it will be easier if you are doing dialysis more frequently since fluids won't build up so much.
good luck and if I can offer any help with what I learned, let me know.

deleted_user 02/27/2012

great news! congratulations on moving forward :)

CHeatherS 02/27/2012

Blessings dear!!!! Your attitude sounds very good, we are all behind you. Let us know how you do!

rogerjd 02/28/2012

Thanks for your 'good luck' messages guys. Unfortunately the NX stage has not been approved by my hospital yet due to budget so it is the usual dialysis machine. I can't wait to be able to drink a bottle of lucozade whilst dialysisng- I get thirsty just thinking about it. Andnot having to spend 6 ours at the hospital every other day will be a godsend. Just had a call today and my machine is being delivered next week so everything is on track!!!!!

deleted_user 02/28/2012

will you be doing nocturnal dialysis? I did that before NxStage but it was more difficult to set up machine. will you be doing it 6X a week? that will ease up your diet and fluid restrictions.
whatever, good luck and feel free to ask all the questions you need. I made plenty of mistakes so I may be able to help you from making so many.

deleted_user 02/29/2012

Are you able to do home hemo if you live alone?

deleted_user 03/01/2012

re home hemo if you live alone - it is not recommended but I was allowed to because I was so highly motivated and had a part time live in.
I had a phone right near me so I could call my training nurse in an emergency (normally bleeding that won't stop).
home hemo is such an advantage over in-center, sessions are shorter if on NxStage, overnight on nocturnal, more frequent but at your own convenience, no waiting at center, no waiting after for bleeding cessation.

rogerjd 03/01/2012

In UK home hemo is allowed whether you live alobne or not- in fact quite a lot of our home dialysis patients live alone. I questioned about my daughters being part of the training so they could support me if needed but this, I was told, was not necessary and was better if I did it myself. I will be doing daytime dialysis and need to do 12 hous a week slit evenly so it could be 3 x4 hours or 4 x 3 hours or 6 x 32 hours. Because of my fluid restriction which I find really hard I think I am opting for 6 x 2 so will only have one day off per week but can basically remove my fluid daily - yeay. Thanks for your support Spiderwoman- I'm sure I will have plenty questions once I start. speak soon xxxx

deleted_user 03/02/2012

6x2 sounds like the best way to go, not only for fluid but it will lessen any restrictions you have on potassium, a little bit on phosphorous but you may still need binders.
when you are ready let me know.

deleted_user 03/02/2012

what great news. great to hear its coming together.

Join the Conversation