Anyone w/ PKD?

[Sandi]

I was on PD for 8 years.  I was on the night machine and this freed up my days.  To my knowledge the non functioning kidney is not removed unless necessary.  I still have mine and they have not been functioning for 23 years.  Transplanted kidneys are now placed in the front lower groin area as mine was.  Mine had to be removed.  This has been my experience which I hope is helpful to you.

Sandi

[Ken Shelmerdine]

Ken you say you have no symptoms, whats your creatnine levels and such?

 My CREATINE IS 720;    UREA 23; (I think units of measurement for urea are different in the UK than the States.) POTASSIUM 4.8; HAEMOGLOBIN 14.5;    PHOSPHATE 1.9.

Blood readings are the only signs that all is not well. Apparently I have only 8% function. Maybe I'm just the luckiest guy in the world of ESRF to be in kidney failure and yet to feel so well.

GFR: Well I usually get about 250ml of fluid off each night.

Blood levels are readings, yes, but they are symptoms also. When i was in ESRF I had no outward signs and felt perfectly fine on the outside, only reason i found out I needed dialysis was b/c I was ditching work and said I went to ER that morning, they wanted a note proving it b/c I called out alot, so i went to the ER to pretend to feel icky and they drew labs,and said i needed t start dialysis. So your not the only one...

Angela
When you had you're transplant were you still showing no outward signs or had you started to feel ill?

[angela515]

Ken I had been on dialysis 2 1/2 years when I had this transplant.

[AlasdairUK]

Ken,

It sounds as though you still have residual kidney function left, but at 8% you will need dialysis. The good news is that your HB is high for a renal patient which will help with feeling so well.

I have currently been biking to work for exercise and it is 12 miles which I do there and back. There is no reason for not being active on dialysis if you are receiving sufficient dialysis. I'm currently doing HDF 3 X a week for four hours with a Kt/V of 1.7 - 1.9 and a URR of 85%.

I have a DISEASE which is kidney failure, but I'm not currently sick. I'm receiving treatment which is renal replacement therapy which keeps me healthy.

My last monthly bloods where done after three days of not dialyzing and my creatine was at 1600 and a urea of 33. I definitely need to go three times a week, but I still feel healthy.

[charee]

just thought i'd bump this up as i have just had my appointment with the transplant team and besides having to loose some weight which i all ready knew they now think before i can get on the list i will have to have one of my Polycystic kidneys out as they are so big that they are worried there will be no room for the new one, they want to wait til i loose abit of weight and then it looks like i will be back in Sydney for the operation just wondering if anyone else with pkd has had to have one removed.

[Ginger]

Charee,
If you can palpate your kidneys in your lower pelvis, they are too big for a transplant. I had my right kidney removed the end of January and then had to be on hemo until my abdomen healed.  I was getting my PD cath working again and thinking about going back to work, when I got the call for a transplant and was transplanted the beginning of April.  I found the transplant surgery much easier than the nephrectomy. 
Good luck with your weight loss and nephrectomy.

[tweetykiss]

Stupid question on my end, but what is PKD?  I just got into the kidney scene last month when my husband started his neph sessions.....

[goofynina]

PKD = Polycystic kidney disease,  dont worry about asking questions Tweetykiss, no question is ever a stupid question, we are here to answer all we can and support you all we can, 

[tweetykiss]

PKD = Polycystic kidney disease,  dont worry about asking questions Tweetykiss, no question is ever a stupid question, we are here to answer all we can and support you all we can, 

Thank you GoofyNina......

[charee]

pkd is cysts multiplying in the kidneys taking away the kidney function as they grow it can also effect the liver but in most cases the liver can function ok.



EDITED: Re-sized Picture - Sluff/ Admin

[tweetykiss]

UGH!!!  I feel for those who have it...thanks for the pics......

[Ang]

hey  there charee,

andy  here  just  a  down  south  of  the  border,i  had  my  left  kidney  removed  in  jan  07,for  exactly  the  same  reason  you've  stated  they  are  to  big  1  is  about  26cm  ,  when  it  was  removed  it  weighed  4.5kg,recently  went  to  surgeon  to  chat  about  taking  the  other  out,will leave  for  now  as  not  causing  any  grief.  i  to  have  been  told  to  lose  between  5-10  kg  minimum  for  best  outcome  for  transplant, not  even  on  the  list  yet.

[charee]

hey  there charee,

andy  here  just  a  down  south  of  the  border,i  had  my  left  kidney  removed  in  jan  07,for  exactly  the  same  reason  you've  stated  they  are  to  big  1  is  about  26cm  ,  when  it  was  removed  it  weighed  4.5kg,recently  went  to  surgeon  to  chat  about  taking  the  other  out,will leave  for  now  as  not  causing  any  grief.  i  to  have  been  told  to  lose  between  5-10  kg  minimum  for  best  outcome  for  transplant, not  even  on  the  list  yet.

Thanks for that Andy I was getting very fustrated not being on the "list" so hearing your story which is much the same as mine so i can't be so woe as me . 

Cheers  Charee

[Wattle]

Hey Charee,

I will bring this up again when I see my Neph in a few weeks. So far they have not talked of removing either of my kidneys. And yes they are very easily palpated by hand. I was assessed by the transplant surgeon when I started dialysis, almost two years ago, and he said it would be fine. They would leave my old ones in place.

I have put on a bit of weight since starting PD so I might be told to loose it.   

And don't worry about not being on the list. They will back date you so you are active from the first day of dialysis. The waiting begins....   

(oh ... and those photos are discusting    did you have to remind me of what my insides look like..ahhhhh    Yep... I want them OUT of me )

[DrMoskowitz]

I'm running a phase IV clinical trial for PKD. The current NIDDK trial won't work; I tried the same thing 15 yrs ago and published it 8 yrs ago, but the NIDDK refused to read my paper.

On the other hand, I have an approach that is more likely to work. What's even more interesting is that it may rescue PKD patients on dialysis. So anybody with PKD is eligible for my trial, no matter whether they're on dialysis yet or not.