Polycystic Kidneys

[Cordelia]

I have PKD. I was diagnosed many years ago. The cysts over time damaged my kidneys and I'm currently on dialysis. Has anyone had surgery to remove the cysts due to back and flank pain? My transplant co-ordinator said the surgeon will likely want to remove them due to causing so much pressure on a new kidney when I get one.

Has anyone had them removed? What was your surgery like? Actually, what the actual surgery called? My co-ordinator described the surgery something similar to a blender, shredding the cysts.

[DrMoskowitz]

I'm running a clinical trial for PKD. I think there's a remote possibility that a drug may shrink cysts and even get dialysis patients off the machine. That's assuming there's still some functional tissue left that will start working once the cysts disappear.

Would you be interested in the trial?

[okarol]

Do you have more info so that patients can read about the research, process, funding, time required and risks?  There's more info about PKD and clinical trials here http://www.pkdcure.org/tabid/1477/Default.aspx

[Cordelia]

I live in Canada, so probably not possible, but thanks Dr. Moskowitz

[Ang]

I have PKD. I was diagnosed many years ago. The cysts over time damaged my kidneys and I'm currently on dialysis. Has anyone had surgery to remove the cysts due to back and flank pain? My transplant co-ordinator said the surgeon will likely want to remove them due to causing so much pressure on a new kidney when I get one.

Has anyone had them removed? What was your surgery like? Actually, what the actual surgery called? My co-ordinator described the surgery something similar to a blender, shredding the cysts.

i had both my kidneys removed in 2007 and 2009 due to pkd, surgery was fairly normal,usual pain and stuff

[DrMoskowitz]

okarol, I prefer to send each patient who's interested the trial documents.

Cordelia, you could be in Timbuktu and still participate in the trial. All I have to do is email you the trial documents. You download them, print them out, and show them to your nephrologist. If s/he is willing to prescribe the meds we use for the trial, then you're in.

[Cordelia]

Thank you, I'll think about it

[okarol]

okarol, I prefer to send each patient who's interested the trial documents.

If you're going to post here and try to get people involved then the least you could do is be professional about it. Being vague or mysterious is always a red flag for me.

[paul.karen]

I have PKD and i owuld like to see the trial documents.  Can you post them openly here so all with PKD can see and decide if we/they are interested.

[carol1987]

I looked but did not se the PKD trail listed on Dr.Mocowitz's web page..... he lists many other clinical trials however.

I also have PKD and would appreciate it  if he was more up front with his information!!

[Cordelia]

I feel the same also.

[DrMoskowitz]

To preserve my intellectual property, I haven't just given it away. I'd like to get credit for my idea if it works. That's why I'll send anybody the trial documents, with a confidentiality agreement asking that you not divulge it publicly. I'm happy to explain to anybody who agrees to the terms of my trial why I use the meds I do. If you don't like the terms, don't enroll in my trial.

If the trial works, we'll publish the results, and then everybody will know about it. But at this point, some circumspection is required.

[rsudock]

Cordelia back to your original question....the surgery to remove native kidneys is called a nephrectomy. My husband's friend had it done and they removed each kidney a month and a half apart from each other. His polycystic kidneys were getting so big they had to be removed. The kidneys were making it hard for him to breath!!! Anyway he recovered after a couple of months has a pretty long scar though.
I have not heard of any surgery where they just shred the cysts off the kidneys. When I had my gallbladder removed they did it laparoscopically. Just 4 small incisions in my abdomen and then they put a bag around my gallbladder and then shredded it up inside the bag. Once it was shredded then they pulled the bad out of one of the small incisions. Maybe that is what your nurse means by shredding the kidneys to remove them?!?! hope this helps..

xo,
R

[Cordelia]

Hi Rsudock

I think you are definitely right! The nurse told me its like a ziploc bag ( a major expensive one) that they shred. My question is though-do they do that procedure before a kidney transplant takes place or during the transplant? This is what I'm confused about.

Thanks for your helpful insight!

[rsudock]

Usually if you are trying to get on the transplant list this is a surgery you do prior to getting on the list. that way when the transplanted kidney comes you are already to go. I haven't heard of very many folks removing the native kidneys while getting the transplanted one but of course never say never!

xo,
R

[Cordelia]

In my case, my husband is my living donor (planning to be) that's why I'm wondering, timing of this surgery because my transplant would be very much planned, unlike being on the "list"

[Hazmat35]

I have heard of such a surgery where they take off the cysts.  My sister was actually looking into a surgeon in Oregon, a few years ago to have it done, it is called "ROOFING or De-ROOFING".  She never had it done, because, we found out that after a few months / or / years, the cysts begin to develop all over again.  It is not an answer, just a temporary band-aid. 

I am debating having my Kidney's taken out (Nephrectomy).  I spend way to much time in the E.R. with severe backpain and breathing problems caused by the Cysts from my Polycystic Kidney's. 

Just this week I was in the E.R., for just that.  The only nice thing was the Dilaudid cocktail they gave me.  It took the pain away for a few hours, but then it was back.  Not as severe, but non the less, it was back. 

[Cordelia]

Omigosh, I'm so sorry to hear that has happened to you. I was told by the medical personelle that the cysts would not return, once removed. I have been thinking about a nephrectomy also as my urologist had mentioned it. He wants me to wait until after my kidney transplant though since I'm still peeing.

[cookie2008]

Its like scraping them off, in time they do return. 

[Cordelia]

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.

[Scarlet]

I know in my Mom's case the Nephrectomy did not "get rid" of her blood pressure issues,  but it did help.  My mother had her last kidney out ~8 months before she died and it weighted 26 pounds.  She was 62  at the time and look just like she did when she was pregnant.  They had done "roofing" earlier on and while it did remove some of the pain for large cysts, in her case she ended up with an infection. You are bascially braking a blister on the kidney wall, even if they clear it off you now have very vuneralby tissue expossed to all the other crap in your body.

As for research on cyst shrinking drugs there are several projects underway currently and some of them can be read about in the Mayo Clinic online page and in the NEJM as well.  As always you should talk with your own doctors before taking anything, most of these research projects have very defined criteria and the drugs are not just to be taken by anyone with PKD in order for the test proticals to be met.

[Jie]

As removing the cysts, or Roofing or de-roofing, the cysts may grow back. How long they will grow back depends on patients. some patients' cysts grew back after 6 months.

As removing the PKD kidney before, at or after transplant, it depends on transplant centers. Some centers prefer to remove the kidneys before transplant, usually 60 days before living-donor transplant or before being active on the waiting list. Some centers can do both PKD kidney removals and living-donor transplant at the same day. Some centers prefer removing the PKD kidneys after transplant. If there are enough space and the PKD kidneys do not cause a lot pain, it is not necessary to remove the PKD kidneys.   

[CHeatherS]

Hi folks, I am new here, and also have PKD.  Here is a great forum for PKD that I have been a part of for a few years.  http://www.dailystrength.org/c/Polycystic-Kidney-Disease-PKD/forum  Some of the folks there have had nephrectomies.  I think that like some of you have said, it depends on your center, and on the individual.  PKD is so different for each person. 

My brother had symptoms long before I did, and had a double nephrectomy years ago, then was on hemodialysis for about 5 years before receiving a transplant.  At 62, I was hoping to "make it through" without kidney failure, but looks like I didn't.  At last visit with the transplant team two years ago, they said I had plenty of room in my abdomen for a transplant, but that has changed pretty quickly and my flat abs are going away fast, especially now that I have just started PD and have a "belly full". 

[Cordelia]

It's so fascinating to hear everyone's stories here, I really appreciate the feedback from everyone. 

I was told there is room to put a new kidney in, but I do experience pain. My urologist knows about it. He said he'd likely look at taking my kidneys out after my transplant, whenever that will be. I just want the cysts gone. I figure there's a lot of extra weidght there.

 I've been on dialysis almost a full year. Transplant work up takes a long time. I also fell through the cracks getting on the list for work up which has really delayed even the remote prospect for a transplant, it's so frustrating.

[DrMoskowitz]

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