Polycystic Kidney Disease

[Hazmat35]

Hey all, I have Polycystic Kidney Disease.  My Kidney's are covered with cysts and they have spread to my liver and other organs. 

I am on Hemo Dialysis (3 x / 4 hr. per) and I have SEVERE back pains from the cysts pushing on my back and other organs.  I take prescription pain meds (Percoset, Dialudid) pardon my spelling). 

My Neph has recommended that I have the kidney's removed which would inturn take away the pain - no Kidney No pain!  Makes sense.  But when I asked him about the "disease" and if it would continue to spread from the Liver to other organs he was at a loss. 

Does anyone have any info on this or experiences about it.  I know that there are a lot of people on here with PKD. 

The pain is so severe at times, I can't sit, I can't lay down, and god forbid, I have to sit in that chair for 4 hours!!!!  Can anybody point me in a direction to do some research?  PKD foundation has not responded. 

[okarol]

I am sorry about your pain. I don't know the answer about cysts in other organs but I will try to find out.
Are you considering a transplant? Sometimes they'll remove a kidney to make room for a transplant.
You might be interested in this thread "The Mystery of PKD" http://ihatedialysis.com/forum/index.php?topic=8760.0

[cloud393]

Hi Haz!  I have PKD too and am scheduled to have a bi-later nephrectomy (removal of both kidneys) on Oct. 1st.  Like you, I have the back pain, trouble breathing at times, and just have that uncomfortable feeling all the time.  I am currently doing NxStage home hemo 5 days a week, avg. 2.5 - 3 hrs each.
I have been told that the PKD would still be there after the surgery but it doesn't affect the other organs like it does the kidneys and it also won't hurt a
new transplanted kidney.  I'm told the surgery will be about 6 hrs and I'll be in the hospital 4-7 days.  I understand there will be a significant incision that
takes some time to fully heal but, I figure it will be worth it just to loose all pain & discomfort from the kidneys themselves.  I plan on having my laptop at
the hospital and will try to update my progress as I'm able.
How long have you known you have PKD & how long have  you been on D?  Do you know how big you kidneys are?  I'm told mine are 40 pounds each.
Very hard for me to believe.  I've asked for pictures of them and have been assured I will get them. 
Feel free to ask any questions you have.  I'll answer all that I can.

Wishing you well,
Lorie

[okarol]

Lorie, I hope you get photos. It helps to understand why there's such discomfort.
Photos of enlarged PKD kidneys, WARNING - not for the squeamish: http://ihatedialysis.com/forum/index.php?topic=10648.0

[LoneHighway]

The cysts do spread to the liver, but almost never have any effect on the functioning of the liver, so nothing will be done about that.

In women, the cysts also spread to the ovaries and often result in ruptured ovarian cysts. Another common trait with PKD is something called a Berry aneurysm, which tends to burst and give you a stroke. You can be screened for that with an MRI.

Women generally suffer more than men do with PKD. My poor mother had it all, the ruptured ovarian, the brain aneurysm, and back then they used to go in and carve the cysts off the kindneys, she had that done 3 times and the third time she didn't way up. Thank goodness they don't do that anymore.

[Hazmat35]

Hi Haz!  I have PKD too and am scheduled to have a bi-later nephrectomy (removal of both kidneys) on Oct. 1st.  Like you, I have the back pain, trouble breathing at times, and just have that uncomfortable feeling all the time.  I am currently doing NxStage home hemo 5 days a week, avg. 2.5 - 3 hrs each.
I have been told that the PKD would still be there after the surgery but it doesn't affect the other organs like it does the kidneys and it also won't hurt a
new transplanted kidney.  I'm told the surgery will be about 6 hrs and I'll be in the hospital 4-7 days.  I understand there will be a significant incision that
takes some time to fully heal but, I figure it will be worth it just to loose all pain & discomfort from the kidneys themselves.  I plan on having my laptop at
the hospital and will try to update my progress as I'm able.
How long have you known you have PKD & how long have  you been on D?  Do you know how big you kidneys are?  I'm told mine are 40 pounds each.
Very hard for me to believe.  I've asked for pictures of them and have been assured I will get them. 
Feel free to ask any questions you have.  I'll answer all that I can.

Wishing you well,
Lorie

My Neph has suggested that I have them removed and yes, I am on a Transplant list, actually two of them here in Florida.  I have been on Dialysis since April this year (5 months) and have been diagnosed with PKD since 1999.  My mom had it, my sisters have it, my nephews have it, too!  My nephews who are both in there late 30's early 40's haven't seen any "effects" yet, but my mother passed away as well as one of my sisters. 

I am just trying to justify having them take them out versus the pain.  I hate the idea of surgery. 

[cloud393]

I know what you mean about having surgery, it is a scary thought.  I am quite nervous about it but I am feeling so awful today, horrible pain, nausea, you name it I'm feeling it, that I think the end results will justify the means.  You know you can take time and think it thru, it's not something you have to get done right away.  I'm sure the correct answer will come to you when it's meant to.  In the mean time, take care and stay well.

[romanyscarlett]

I have PKD and a few years ago my neph drained a lot of the cysts on my kidneys by inserting a large needle & drawing off the fluid. This helped immensely and I was almost pain free for an entire year. I asked to have that done again but I was told having it done more than once is dangerous and that a fellow patient in my area died from an infection caused by having repeated drainages done.

I knew I couldn't carry on living the rest of my life with the constant back pain and cyst infections so I wrote to my neph and asked him to remove my kidneys. I had the right one taken out in April this year and the left removal was scheduled for 6th October but I've postponed this because I'm having a few fistula problems.

It's a big thing to consider but I'm so glad that this is the route I've taken.The level of pain I experience has dropped dramatically since having my right kidney out. The operation is a big one and it took a long time to recover but it was worth it. A few months of pain versus a lifetime has got to be better.

[Hazmat35]

That is my delimia now.  How long do I suffer with the pain versus having the Nephrectomy.   

Some days the pain is not so bad, a few hours on the heating bad, and I can deal with it.  Other days, it is a constant pain and then every once in a while out of the blue, you get that STABBING pain like someone with a knife is jabbing at your back. 

I am still working full time as well as Dialysis 3X per week, so I am real concerned about the recovery time and getting back to work.  I'm sure I can work things out with my boss, but, I hate the idea of someone having to do MY JOB while I'm recovering.  It's not that they won't mind, it's just that it is MY JOB and I don't want anyone to do it, while I still can.  I don't want to "inconvenience" anyone. 

But, thanks for all the info!  This helps a great deal.  Much more info than I received my Nephrologist.  What the hell am I paying him for anyway???