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jestersgal

Polycystic Liver and Kidney Disease

Posted by @jestersgal in Kidney & Bladder, Nov 14, 2011

Would like to meet others with this Disease. I am now on the transplant list for a Liver and kidney...

Tags: kidney conditions, transplants

ridingfenceson6

Posted by @ridingfenceson6, Nov 14, 2011

HELP is all i can say...i suffer severely with this horrible disease and transformation to my life style and just life itself

jestersgal

Posted by @jestersgal, Nov 14, 2011

HI,
Do you have both pkd and pld. Have you been to the mayo? I found out I had pkd about 25 years ago. And pld maybe 15 years ago. I look like I am 7 months pregnant and I am only 5'2" so not very big. I have lost a lot of Muscle mass and fat due to not eating alot. Went to the Mayo in July 2011 and my best option now is Kidney and liver transplant. Now the waitlng game begins.

mandj67

Posted by @mandj67, Jan 7, 2012

Hi again, I see you have answered my questions already!! I haven't been diagnosed with PKD but they are watching things closely. I guess its unusual to have so many cysts and not have PKD.

smanthasj

Posted by @smanthasj, Apr 5, 2012

May I ask how you have handled your inability to eat? I've been on a liquid diet for the last four months now and my GI doctors don't know what to do to make things better. I'm hopeful that the doctors at Mayo will have more options/suggestions.

bpurdy

Posted by @bpurdy, Dec 9, 2011

I had a kidney transplant in 2007 at Mayo in Rochester MN for PKD, and also had my native kidneys removed 1.5 years later. It's a difficult surgery and recovery, but now I'm doing very well now. I'd be happy to answer any questions you have. Dr. Dean was my transplant surgeon, and Dr. Prieto did my kidney removal. Both of these surgeons are incredible. I wish there were no need for the immunosuppressants after surgery (and for the rest of your life), but the trade-off is worth it!

mariecobbs

Posted by @mariecobbs, Apr 2, 2012

Hi, I had a kidney transplant 12 years at Northwestern Memorial Hospital in Chicago. My kidneys were not removed but my surgeon said they have not grown significantly and is not considering removing them. Some time I wonder if this is the best thing to do because my brother had a kidney transplant around the same time but later he developed problems. When they decided to remove his kidney he did not survive. I wonder if I should have them removed now while I am doing so well.

bpurdy

Posted by @bpurdy, Apr 3, 2012

Hi Marie. I would not have had my kidneys removed if they wouldn't have been so large (over 20 lbs) due to Polycystic Kidney Disease. If your failed kidneys are normal sized I doubt that most surgeons would remove them. My surgeon was reluctant to remove mine, but my native kidneys were causing me a lot of pain so 1.5 years after transplant they removed them. What caused your brother's problems? To my knowledge, leaving your native kidneys alone shouldn't cause any problems.

smanthasj

Posted by @smanthasj, Apr 4, 2012

Do you mind my asking what you mean by "had my native kidneys removed 1.5 years later?" Did they not take out "your" kidneys when you had your transplant in 2007? Pardon me for my ignorance, but I'm new to the liver / kidney transplant scene and I'm still learning.

bpurdy

Posted by @bpurdy, Apr 4, 2012

No problem, happy to help. The docs don't normally remove your old kidneys during a transplant. The put your new kidney in your front side abdomen. It's closer to the plumbing and I guess it's easier to find a spot for it. The docs don't like to remove your old kidneys (the kidneys you were born with) if they can avoid it. Usually they are considered for removal if you have cancer or Polycystic Kidney Disease. My diabetic friends that have needed kidney transplants have their old kidneys as well. If you have other questions for me, feel free to email me at dadieo@me.com, or hit me up on Facebook under http://www.facebook.com/purdybob.

smanthasj

Posted by @smanthasj, Apr 5, 2012

Wow. I really do have a lot to learn. May I be nosy for a minute? If I'm being to personal, please just say so, no offense will be taken. I'm just trying to learn as much as I can about the patient side of this disease. So you do have PKD, but do you also have PLD? I'm having a difficult time finding much information about PLD. I guess PLD is quite unusual. On another note... so your kidney transplant was five years ago, have things gone well for you since then. I've been told that I might need to have both a liver and kidney transplant at the same time because of the complications from the post-transplant medications have one the kidneys. So much to take in. Transplant wasn't even in my vocabulary three weeks ago.

bpurdy

Posted by @bpurdy, Apr 5, 2012

I'm happy to help, so no worries about being nosy! Yes, I also have PLD. My liver is quite large, but functioning normally. My recovery from kidney transplant was up and down. I got CMV about 3 months post-transplant, which was scary but Mayo docs skillfully guided me through and now I have antibodies against CMV so I won't get it again. I've had other setbacks, sometimes not even a doc from Mayo can understand, but now have pretty good kidney function and am weightlifting and feeling great!

mandj67

Posted by @mandj67, Jan 7, 2012

Hi, I am so sorry for the progression of your disease to the point of needing transplants. Perhaps though, a transplant could give you the hope of a more normal life as others have found. My thoughts and prayers are with you. I follow this disease because I have multiple cysts in both kidneys and my liver. So far they are small that they do not cause problems but who knows the future...? How long has it been since you were first diagnosed? Did your cysts grow fast?
Judy

sumbunnie

Posted by @sumbunnie, Mar 18, 2012

I too have pkd and polycystic liver, what problems do you have caused by the liver ? I am living on dialysis now but am trying to get on a transplant list.

smanthasj

Posted by @smanthasj, Apr 2, 2012

Are you doing liver or kidney dialysis?

mariecobbs

Posted by @mariecobbs, Apr 2, 2012

I too have polycystic kidney and liver disease. I had a kidney transplant 12 years ago and doing well.

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mattgnyc

Posted by @mattgnyc, Jun 28, 2015

Hi - i was diagnosed a year ago with PKD and PLD - stage 1. I already have some distension in the belly. How drastically did you change your diet when you were first diagnosed and how long did you have it before you needed a kidney transplant and was it difficult to get a kidney? Thanks so much in advance!

rosemarya

Posted by @rosemarya, Jun 28, 2015

Although I did not have PKD or PLD, I did have a liver and kidney transplant. Due to an earlier diagnosis of PSC (liver). I was already eating a healthy diet as directed by GI. Eventually I developed nausea, and lost my taste for foods. I sipped tea, flat ginger ale, very cold ensure (sometimes with ice cream). I nibbled crackers and toast. Sometimes soup was good. I also found that a sprinkle of cinnamon, or a twist of lemon juice gave a little flavor. If I had meat, it had to be cooked in a broth or thin gravy and very soft (like stews). Acute renal failure led me to need a kidney, too....I suggest that you talk with your transplant doc about how long you might expect to wait. I know that everybody has a unique situation, and there is no one answer. I wish you a successful outcome. And I want to tell you to hang in there for however long it takes for you to receive your new organs. In the meantime, concentrate on taking care of you!

smanthasj

Posted by @smanthasj, Apr 2, 2012

I'm glad that you are listed. I have started the process for evaluation for transplant (TX). From what I understand, there are very few people who ever "need" a transplant for PLD, since "livers never fail." Four months ago, I went in for day surgery, but didn't leave for six days due to complications (including severe liquid retention.) The water retention began to fill the small cysts in my liver. I didn't even know I had cyst in my liver. I have yet to "eat" a meal since the surgery. It was finally discovered just a few weeks ago that the reason I couldn't eat was because my liver had crushed my stomach. All along the doctors thought my lack of desire for food was due to medication. Do you mind if I ask, where you are seeking treatment? Are you at Mayo? The local transplant center here don't seem to have seen this before, so I'm trying to decide if I need a second opinion. Here is's all about "end-stage liver disease." Since my issue isn't end-stage, they had a difficult time even deciding if this was the best option. If this is the right decision, then is TX the right location?

tgirl

Posted by @tgirl, Feb 7, 2013

Hi. I'm new to this discussion board. I have PKD (diagnosed long ago), and have recently learned that the numerous, small cysts in my liver have progressed to full-on PLD. I also have gastroparesis (delayed stomach emptying). With the gastroparesis, keeping weight on was already a struggle, but several weeks ago I began vomiting, and things are going south on me. Currently, my quite enlarged liver, in combination with my small frame, are suspects. Have any of you with PLD had daily vomiting, and if so, what treatments have been helpful? Also, is there anyone at Mayo who is particularly good with this sort of thing? I'm in a large town/small city where there is no special expertise.

rosemarya

Posted by @rosemarya, Feb 8, 2013

I do not have PKD, however, I did recieve a liver/kidney transplant at Mayo in 09 for PSC. I was referred to Mayo by my local med center because of complications they were not able to treat. So I can understand a little of where you are 'coming from' in a small town. When you are a patient at Mayo, you are recieving the expertise of a whole team. You might be scheduled with a particular doctor in the PKD field, but I can assure you that your treatment is coordinated and fine-tuned to fit your own needs. It is an amazing experience. I wish you the best possible outcome.
Rosemary

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