Polycystic Kidney Disease. Not on dialysis yet.

[BlueKat]

My husband has polycystic Kidney Disease. His kidneys are so big, he looks 10 months pregnant all the time. He has trouble finding a spot that doesn't hurt when he lays down in bed. Breathing can be a bit of a problem at times. He has always had a bad back, while now it's worse than that. He's had multiple hernia repairs. The last one was an unbilical one. The huge kidneys caused the hernia. He had it fixed, but now the mesh has let loose. He wants to fix it again. He would like to get cyst reduction done, so the pressure is relieved in his abd. long enough for the hernia surgery to heal. We have heard about x-ray guided cyst reduction but no one seems to talk about it. Once his Dr. told him it was an option because he had some huge cysts, now the Dr. avoids the question.  He desperately wants to learn about cyst reduction from someone who has had it done. Yes, he can get a consult from another Dr. & pay a big fat bill, & then if the Dr. is willing to do it, we have no assurance the insurance company will cover it. My husband thinks it's all a trap. He believes there are risks involved that no one will talk about. He figures the Dr. wants about $1500 for a consult which will be all out of pocket at the beginning of the year, & most likely the insurance company will say no. Is there anyone on this message board who has had polycystic cyst reduction done? Is there anyone with a family member who has had a cyst reduction done? The PKD foundation e-mail contact does not answer e-mails.

[Sydnee]

Sorry can't help with the question. When Iwas diagnosed with pkd 24 years ago (when I was 14) the nephrologist mentioned it once. But he then said the possibility of infection was pretty high. It was never mentioned again but I have lots of little cysts.
I have also had 2 hernias both caused by operations.

[Cordelia]

Hi there. I have pkd. I inquired to have my cysts removed and they wouldn't take mine out because my doctor told me that they will just "grow back"

[Wat76]

I have PKD and Ihave had my cyst drained, but they return even bigger.  Not worth the painful procedure.

[BlueKat]

Hi there. I have pkd. I inquired to have my cysts removed and they wouldn't take mine out because my doctor told me that they will just "grow back"

Your history with a creatine of 27 has got to be one of the most impressive high ones I've ever heard of. I'd be breaking my neck trying to string up a dialysis machine in a hurry if any of my clients had that number. I showed my husband the 3 replies on here. It doesn't sound hopeful for any type of cyst reduction. He gets so disgusted, realizing there are no fixes. Not even temporary ones. How do you put a history in under your name on this board?

 We've got a couple children between us in their 30's. I'm praying they don't have PKD. My son found a ultrasound technician who does renal ultrasounds all the time. He paid a cash payment, with a first name only, no medical hx. records made, to see if he had any cysts yet. The ultrasound did not show any notable ones, but the technician said it was iffy. Whatever that means.  It's a real trick to try & learn what your potential health problems may be without alerting the insurance companies to pre-existing conditions. My daughter had a work up done, with plans to give her half sister a kidney, in her late 20's. The transplant hospital claimed the ultrasound was ok, but she had brought home some photo's. I swear there were a couple small cysts on the photo. I looked for pictures on the internet. They sure looked like they were there. Instead of donating a kidney she had a baby. Her half sister got a cadaver kidney. My step-daughter had kidney failure at age 10, but we were never told what caused it. She is in her late 30's now, with her 2nd transplant. She could still have polycystic disease. I did read somewhere, I think it was on Mayo internet page, that a transplanted kidney will not get the PKD because the DNA structure is different. That was nice to find out. I don't know why no one along the line had ever told us that before.

[Cordelia]

Hi there. I have pkd. I inquired to have my cysts removed and they wouldn't take mine out because my doctor told me that they will just "grow back"

Your history with a creatine of 27 has got to be one of the most impressive high ones I've ever heard of. I'd be breaking my neck trying to string up a dialysis machine in a hurry if any of my clients had that number. I showed my husband the 3 replies on here. It doesn't sound hopeful for any type of cyst reduction. He gets so disgusted, realizing there are no fixes. Not even temporary ones. How do you put a history in under your name on this board?

 We've got a couple children between us in their 30's. I'm praying they don't have PKD. My son found a ultrasound technician who does renal ultrasounds all the time. He paid a cash payment, with a first name only, no medical hx. records made, to see if he had any cysts yet. The ultrasound did not show any notable ones, but the technician said it was iffy. Whatever that means.  It's a real trick to try & learn what your potential health problems may be without alerting the insurance companies to pre-existing conditions. My daughter had a work up done, with plans to give her half sister a kidney, in her late 20's. The transplant hospital claimed the ultrasound was ok, but she had brought home some photo's. I swear there were a couple small cysts on the photo. I looked for pictures on the internet. They sure looked like they were there. Instead of donating a kidney she had a baby. Her half sister got a cadaver kidney. My step-daughter had kidney failure at age 10, but we were never told what caused it. She is in her late 30's now, with her 2nd transplant. She could still have polycystic disease. I did read somewhere, I think it was on Mayo internet page, that a transplanted kidney will not get the PKD because the DNA structure is different. That was nice to find out. I don't know why no one along the line had ever told us that before.

Hi BlueKat       

I almost died with those extremely high levels of creatine. I honestly don't know how I walked into the emergency room on Aug. 15, 2010 with those levels. At that point I could not even keep a sip of water down without vomiting it up.  I wasn't urinating at that point either.  Even my bowels shut down I was a complete mess.  Not to mention I was constantly scratching to the point I drew blood I was so horribly itchy and I couldn't sleep and suffered from severe leg cramps at that point. I was also extremely cold all the time. Not even a blanket warmer would keep me warm!

I was about two hours away from kicking the bucket from what my neph said. I was extremely lucky and very fortunate that things  turned out the way it did.  I could have been six feet under.

My one twin daughter has evidence of cysts now, she  is only going on 14 years of age.  I am keeping a close eye on her and she's going to be checked yearly with a paediatric nephroligist. She's in great hands right now going to Sick Kids Hospital in Toronto to be monitored.

Unfortunately I don't know where I inherited the PKD gene from. I'm adopted and only know my birth mother's side of her medical history so I'm guessing I got it passed down from my birthfather although I'll never really know.   I just met someone yesterday that has PKD and he told me he was a freak of nature and just 'got' the gene, no parents of grandparents ever had PKD, he was the unlucky one.

I wish I could help you.  Frustrating that they won't 'touch' my cysts until after a transplant.  Then, I would have to undergo a nephrectomy if I am to have the cysts gone meaning I have to have my native kidneys completely removed.

How do you add info to your profile? Its pretty easy, just click on your name and there is a boxed column at the left hand side, click on "Forum Profile" There you'll see the word, "Signature"  Just write your info in there and click "change Profile" at the bottom and it should save. Hope this helps.     

[BlueKat]

My husband is scheduled for a cyst reduction, called an "ablation" on Monday.  On the consent form it was referred to as an ablation. I was able to google it, & find informaiton on the web. He has about 6 huge cysts that they will suck out & dry up with alcohol. No one can give any assurance that it will relieve any symptoms. Internet information on ablations had 0% problems during the procedures. With about a 75% chance that it would help the pt.  There were no reported infections reported in the surveys related to the procedure. His nephrologist did pick out a senior interventional radiologist, whom I trust. It took us about 3 weeks to get the medical insurance company cornered into saying the procedure was covered. I sure hope he is in the 75% & not the 25% where it does no good, & the cysts fill right back up again. There was one interesting report on polycystic kidneys in people that were on dialysis with no kidney Function left. They apparantly could go in & ligate the renal artery. This cuts off the blood flow that allows the cysts to keep getting bigger. Then the huge kidney srinks. Nephrologists have told me that even a little kidney function is better than none. It sounds very strange to do something that would kill a kidney, still inside of someone. I do not remember which country they did the procedure in.

[Fatkidney]

I hope your husband's procedure went well BlueKat.   
Let us know.
I have PKD too, and am really curious. 

[BlueKat]

The IR (interventional radiologist) Dr. drained 3 cysts for a total of 2500 cc. Then 99% Ethonal was injected to sclerose the cyst. (close it off, so hopefully won't refill) One cyst had 1800 cc in it. IR Dr. said that was the record for one cyst, that he had ever drained from anyone. There was one little bleeder outside of the rib cage, which a nurse held pressure on for awhile. It's fine today. He says his back is painful this AM but doesn't hurt anymore than the cyst pain that he has been putting up with. He did not take anything for pain after coming home. No tylenol, nothing. The Dr. would give him a scrip, if he wanted it.

When they were doing the procedure, he would feel things moving around. There were a couple more extra large cysts, which they would have liked to drain, but they were not in a good position. The Dr. told him, that the cysts will move around, & fill the empty spot. In the future another big one, may have gotten into a position where it can be safely drained. On one side where they drained a smaller one, 350 cc, then another one moved into that spot, & they able to drain that also. The Dr. told me that he could have some plurisy type pain with deep respirations, which he does have. I don't know how long the painful breathing will last. He claims it was worse last night than this AM.

Long term, if he has it done again, will depend on if it actually helps any symptoms,( ie pain, difficulty breathing when laying in bed, abd. pressure, GI tract problems) & if the cysts that they drained seal off. Our insurance is lousy, with $3000 out of pocket before insurance kicks in at 80%/20%. If the cysts refill, & symptoms don't subside, it hardly seems worth paying $1000's for. Plus of course there are 100's of tiny cysts, that will happily fill up, if given enough time. It's so damn wonderful to have a body that wants to kill you from the inside out. Dr. told him light work for a couple days, so there he is, outside shoveling snow. At least he doesn't have to stare at the dialysis machine yet.

[Angiepkd]

I am glad the procedure went well! Keep us posted on how his symptom relief is doing. I also have PKD and my kidneys are huge. I just started dialysis and am feeling so much better - more energy, sleeping well, etc. However, the giant kidneys are still an issue with comfort.  My brother had to have a nephrectomy prior to transplant. My surgeon thinks he can squeeze a kidney in with my native kidneys staying. I am not too happy to be keeping them lol!  I asked if the old kidneys would shrink and he said no.  Best of luck to you and hubby!