[TheSpleen]

Wy wife has lupus and may be looking at dialysis and a kidney transplant in the near future. I'd like to hear about anyone's experiences with the different types of dialysis.
In particular, she's very active at the gym and plays beach vollyeball several times a week. I'd be interested to know to what extent anyone has been able to continue similar activities while undergoing dialysis. I'm more interested in the "nuts and bolts" type issues. Things like keeping the catheter site clean (for peritoneal dialysis), getting hit in the arm with the ball (hemodialysis) etc...

Thanks in advance for any advice/thoughts.
Jared

 

[Clare.T]

Welcome to the Site Jared
I am sorry about your wife's lupus and kidney problems but it's great that she's so active. I don't think we have any members undergoing dialysis. You would probably do best on a kidney disease support site maybe one with a forum.

I know that some treatment centres have support staff, specialist nurses and others, who help patients with such issues, in the UK anyway

All the best
Clare

 

[bundy]

hi jared i dialzed four17 years i chose hemodialysis just becouse periteneal took too mutch time les problems with hemo more inferctions with the peritonitis you dont say whare you are from iam mail in uk and just had transplant 2 years if u need more info let me no willing to pass on my knowedge bundy

 

[roxie_P]

hi there am on dyaislsis and have been for good year now i started with hemo 3times a week and i had lines in to my grion and neck areas hemo did make me feel tired on the days i did it but in beetween you start to feel a lot better if i would of stayed on hemo i would of had a more perment acces a fisttular in to my arm, but with being only 22 i wanted to do home apd dyaislsis i ha a machine that i go on for 10hours over nite while i sleep its so muc better you do it every nite so you dont have to watch your fulieds and foods as much,
only down side is carnt realy go swiming well you can but they dont advise it you must cover the exit site and tube with a bag and when you have a bath you do this,,

as for keeping it clean its easy you was it with warter and soap free hand wash and they give you everything you will need you get a delivery once a month of fuileds etc, and you are trained on everything with a nurse befor you can take it home..

good luck hope it all works out for you xx

roxie

 

[alisiajo]

Hello and sorry to hear about your wifes dialysis. I WAS on dialysis, no longer thank gosh! I went three times a week. I was also on chemo at the same time so i was very tired. It depends a lot on the person though. If she is a very active person i think she will do fine as long as she cuts down her activity a little bit. you cant do too much at once.Thankfully my kidneys are a lot better. They were almost at complete failure (gfr 2 now at a 30) I had a cathedur in my neck. It was an emergancy situation so they didnt have time to put one in my arm. going three times a week i didnt have to worry too much about cleaning it because they did. The other times i had to keep in wrapped and COULD NOT get it wet while in shower. But, unfortunetley it got infected after i had stopped the dialysis because it wasnt removed right away. This can be very bad as the infection spread through my blood into my heart. Make sure she knows that with a low immune system there is a chance her body will regect foriegn objects and there is a chance of getting infected. They had to put a stint in my arm for antibiotics to clear the infection and that also got infected. Now they have stopped putting things in my body as obviously my immune system cannot handle it. I hope it all oes well and she doesnt lose her amibition. I didnt find the treatments that bad, as long as blood doesnt make you weasy. It doesnt hurt and i coulnt feel anything.

 

[onetay]

I can't say from experience of my own,with myself, but i was the child of a parent with kidney problems from age 5. My mom was very tired after her treatments. Like any disease there are good days and bad. She lived on dyl. for 15 years and without any kidneys for maybe 10 of those years. I am sad to report that in July of 2001 she lost her fight, which sadden me to say by to my best friend in the whole world. On the up side she was not to make it past age 10 then age 15 then age 20. She was told she would never be able to have a child and at age 21 she had me. I can remember doctors telling me with every surgery they did not think she would make it this time so they would allow us extra time with her before surgery. She was the word miracle. I don't want to scare you only incuriage you to see past what is told you and live for now because none of us know what tomorrow will bring for us.
Good Luck and long life together,
tammy

 

[bundy]

i had a fistula for dialisis whitch took place 3times a week and took 3hours and 45mins times vary no site problems and no infections yousualy dialized mon wed fri weekend off dawn side is fluid ristriction and diet yors bundy

 

[Clare.T]

I just thought I would mention that Jared has not even visited the site since he posted on September 26th.



Clare