Polycystic Kidneys

[Cordelia]

My phosporus levels usually sit around 1.73
My potassium levels are fine.

[Ang]

as your on dialysis this treatment in most cases should make high BP go away over time, if renal failure is your only medical issue

[vanessa]

hello everyone i am new to the site and i too have polycystic kidneys . my kidneys are 24 cm on the left and 28cm on the right and i suffer alot . i choose not to take anything but Tylenol but at times its a little unbearable. i am getting prepared for p.d. dialysis and am quite nervous but every one on this site has been very helpfull. i have always been told that when it is time for transplant you kidneys begin to shrink , i hope this is true . i swear every time i am in the ultrascan room they bring in 4 or 5 techs to see the size of my kidneys . i hope they do take them out i would be so much more comfortable i mean I'm only 38 and feel like my tummy is huge . no one understands how uncomfortable it really is . its as if we carry footballs around in our tummys.

[Hazmat35]

hello everyone i am new to the site and i too have polycystic kidneys . my kidneys are 24 cm on the left and 28cm on the right and i suffer alot . i choose not to take anything but Tylenol but at times its a little unbearable. i am getting prepared for p.d. dialysis and am quite nervous but every one on this site has been very helpfull. i have always been told that when it is time for transplant you kidneys begin to shrink , i hope this is true . i swear every time i am in the ultrascan room they bring in 4 or 5 techs to see the size of my kidneys . i hope they do take them out i would be so much more comfortable i mean I'm only 38 and feel like my tummy is huge . no one understands how uncomfortable it really is . its as if we carry footballs around in our tummys.

I know exactly what you mean!  I don't know the size of mine, as I'm afraid to find out.  I have terrible back pain from PKD, and am currently on Hemo In-Center Dialysis (one year now!  YEA HA!!!)  My dr. wants me to take them out, but I just can't wrap my head around it w/out having a transplant.  But, I know that I would feel better, I'm sure.  Tylenol doesn't cut it for me, I take Percoset or Dilaudid for the pain. 

[romanyscarlett]

I had my right polycystic kidney removed in April 2010 and I had the left one removed on 4th May this year.

Before having my kidneys removed I had exceptionally high blood pressure and over the past 6 years I've taken an ever changing cocktail of drugs to keep it under control. I've been kidney-less for 3 weeks and my blood pressure is now a wonderfully healthy average of 120/80 and I no longer take any medication for it.

My PKD made my life a misery from the moment I was diagnosed at the age of 19. I would have repeated infections in the kidneys and cysts, extreme pain and discomfort and bloody urine. By the time I was 21 I was reliant upon a mixture of codeine, tramadol and morphine to combat the pain. I had the cysts drained and popped on both kidneys in 2004 and I was pain free for over a year but as predicted, the cysts grew back and the pain started to become more frequent and acute. By October 2009 I'd had enough and asked for my kidneys to be removed. The original plan was to have the right one removed and then have the left one taken out 8 weeks later but due to a number of health issues it took a whole year before the left one was finally taken out.

The operation is not a pleasant one. My kidneys were both a foot long and several kilos in weight. I have two 14 inch long scars on my abdomen. They start in the middle of my rib cage and then curve round following my bottom rib all the way to my hip. The first week after the operation is absolute hell as the pain from the surgery is unbelievable but it gets better. For both nephrectomies I spent only 7 days in hospital before returning home. By the second week I was able to move around without being in pain. By the third week I was able to drive, go to the supermarket and bake a cake.

My mother is going to be a living donor for me and due to the health issues I've experienced in the last year we asked if we could do the transplant before the removal of the left kidney. The team in Bristol said they wouldn't do the transplant until I'd had the second nephrectomy because they didn't want my native kidney to interfere with the new one. Due to my history of getting infections it wouldn't have been advisable to still have the polycystic kidney inside me when I had no immune system. They also didn't want to risk putting pressure on the new kidney by making it go through a big operation to remove the old one.

I had several blood transfusions in January and we are waiting on one final blood test to check that my antibodies have returned to normal before setting a date for the transplant. We are hoping it will happen some time in July.

Whatever happens, having my polycystic kidneys removed is the best decision I have ever made. They can't hurt me anymore. I will never experience those levels of pain ever again and I'm not carrying an obscene amount of extra weight.

[*kana*]

It makes perfect sense to me.

Does anyone know if having a nephrectomy gets rid of high blood pressure since I do know that having cysts on my kidneys has caused high blood pressure for me. I'm just wondering if eliminating the kidneys helps to get rid of this. I'd sure love to get off my blood pressure medication.

It did for me.  I started BP meds when I was 12 years old.  I had a nephrectomy and went from PD to hemo for a couple months and my BP spiked on hemo.  I never had to take more then 1 bp med and was on 4 different ones while on Hemo.  When I went back on PD my bp dropped low and has remained that way for 2 years.   Average is 90/60 and goes to 100/65 when I am stressed.   

[Hazmat35]

It depends upon lots of things.  If you already had High b.p., then most likely not.  However, if you have them removed, it may lower your b.p. 

Other physical traits and personal eating habits have lots to play with it. 

[jshabanian]

In 2007 I had a bii-lateral nephrectomy and living donor transplant at the same time.  Big incision but not much pain, surprisingly.
Blood pressure became worse after nephectomy and transplant.  Maybe due to the meds, no one really knows why.  My kidney transplant failed about 3 months ago and I have been on dialysis since Feb.

When they do the de-roofing the cysts do grow back.  They use this procedure for people who have large kidneys, lots of pain.

[Hazmat35]

Here's a question for anybody with PKD: are you being treated for high PTH? High PTH is a common problem among dialysis patients, although it's not a problem once you get a kidney transplant. I'd just like to talk to PKD patients on dialysis who happen to be treated for high PTH.

Thanks!

Dave Moskowitz MD

I just started taking Sensipar, this past weekend.  I have an elevated PTH and PKD and I'm on Dialysis!  3 Strikes!!!







EDITED: Fixed quote tag error - jbeany, Moderator