Question for PKD patients on Dialysis

[gotmoose]

This question is directed at PKD people on Dialysis. My Nephrologist has told me that PKD patients do better on dialysis then other ESRD people. Was wondering how do you feel after Dialysis? I'm Facing Dialysis soon. My GFR is currently at 18.

[Sydnee]

I feel like I want to die.
I've been on dialysis since Sept 2013 (not long really) the first month was bad. Then I started feeling better, now for the last month and a half I would rather be dead. I am on PD. Neph, Hubby and kids told me not to give up until after trying home hemo. Which we will be training for in May (if fistula is ready). But I am sick and very weak I hurt all the time. My neph assures me the switch will help me feel better. Oh I'm only 39.

My aunt died after 3 years on in-center hemo, great-aunt was in good health for 20 years of home hemo, and great-uncle refused to go back on dialysis after transplant died.   

[Michael Murphy]

I have been on hemo for about a year.  The first three months we horrible, I was told to limit my fluid to 32 oz a day and they were taking 4 to 5 kilos off of me during each session.  This continued till I showed up for a neph appointment with a bp of 75/45 and my doctor literally we'll to say the least he was unhappy.  Since then he ha kept my dry weight over what I weigh and has the center only take a kilo.  I now feel much better and even manage to go to work after dialysis once or twice a month.  However after some sessions all I want to do is nap.  My PKD has left me with about 10 percent function so for now I eliminate what I drink.  I think what your doctor meant is PKD takes out your kidneys but leaves the rest of you alone.  Other causes of ESRD damage other body parts as well.
Dialysis is a major effort in time and your over all well being.  But it beats dying by a long shot.

[gotmoose]

Sydnee I'm sorry to hear how you feel. I hope Hemo works out for you and you get to feeling better. Are you on a transplant list? I'm 55 and inherited my PKD from my mother, who is doing well after 25 yrs with her transplant and still going strong. I hope I'm as lucky as her. She's told me when she was on Dialysis, she was only tired. She got lucky and received a kidney only after 3-4 months wait. I just don't understand why some people seem to do ok on dialysis and others are very sick.
Michael Murphy are you on a transplant list ?

[cdwbrooklyn]

Every case is different.  Some people do well on dialysis and some people don’t.  It depends on your body type.  I am blessed to have done well on dialysis as I was in-center for 11 years and now I’m doing it at home on the NxStage system going on 4 years now.  I have my days but most of all it’s more good days.

Should you need to go on dialysis the best thing to do is get all the information you need.  Do your research and ask lots of questions so you can determine what will work best for you, not noone else, just you.  Also, keep in mind that every case is different.  What works for one person, may not work for you, and what works for you, may not work for another person.  Try not to let the nurses or techs take fully control over your treatment.  It’s best to know what going on so you can have better control.   

 Feel  Better.   

[Angiepkd]

Hi gotmoose! I have PKD and received a transplant one month ago. I did home hemo for a year, and felt pretty good most of the time.  There were some down and tired days, but I think the 5 x per week schedule helps stop the highs and lows of in-center hemo.  I would like to have tried PD, but was told I couldn't.  Do your homework and make the best decision for you.  Hope your GFR stays where it's at for a long time!  Best of luck to you!

[Sydnee]

Thank you,
cdwbrooklyn is very correct my husband got a transplant in Oct. 2013 after nearly 2 years of dialysis. He was fine on dialysis still worked his 12 and a half hour days at the Lowe's warehouse. he was just more tired then before dialysis. (he is a diabetic)

I have been/still am on the transplant list for 3 years now. The wait list here is 6 plus years.

I have an aunt that got a transplant pre-dialysis she has been doing well on the living donor kidney for 15 years now. My mother (who I inherited PKD from) died before kidney failure from a brain aneurysm PKD related, as did her father 

[gotmoose]

I'm hoping to avoid Dialysis. Had my transplant screening at UW madsion earlier this month. They have a great transplant program but very strict critera they follow. I have to lose #20 before they will even bring me before their committee to get on the list. Good news though is the wait is less then a year for my blood type. Now just have to meet their strict BMI requirements. 35 BMI or less