OT-Anyone have polycystic kidney disease?

I have just recently learned I have polycystic kidney disease (my mother died of kidney failure) and the cysts are on my right kidney, adrenal gland and on recent CT, (only two months from my first one), I have now developed cysts on my liver too. The kidney cysts are bleeding. :( I have daily right-sided aching and back pain. My right kidney is deformed and I have reflux on the right as well as kidney damage from childhood.

My whole illness started out about eight months ago as benign paroxysmal positional vertigo and it was horrible with nausea, anorexia due to that, and significant weight loss. I had two Epley maneuvers that corrected the vertigo. A CT of the abdomen and pelvis was done and that is when the first cysts on the kidney were discovered which I was told were not concerning in someone in their 50s. In the meantime, I had started eliminating a couple of my Rx meds and the nausea stopped, and so I felt they were the cause of my nausea which in a sense I feel could still be true but perhaps more due to not metabolizing the meds appropriately due to kidney and/or liver problems but I do not know that yet. I do not see a urologist until 09/07 and will find out more then.

It is my understanding that this is a hereditary/genetic disorder and there is no cure and progression to kidney failure is quite high by the time you are 60 and I am 52.

I was just wondering if anyone else has this or knows someone who does and what info they may be willing to share. 

Thanks so very much. :)

• OT-Anyone have polycystic kidney disease? - At Home MT
  • Well...I did post a reply - RadtransToo
    • I just sent you an E-mail. Thanks so much. (nm) - At Home MT
  • My neighbor has/had PKD- he is 51 now - sm - XXX
    • Thank you for sharing - At Home MT
  • words of encouragement..sm - kps
    • Your kind words are so appreciated. - At Home MT
      • I understand--sm - kps
        • Thank you again - At Home MT
        • Got this in my email this morning, thought I would share--sm - kps
          • Thank you for sharing! - At Home MT
            • you're welcome for the story--sm - kps

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     This is a personal question, not exactly related to work.  I am going in circles with at least 2 doctors now (and several unrelated specialists) who are not concerned about my lab values, but from what I have looked up, it seems they should be doing something, even if it is just explaining what is going on and why.

Since August last year, my GFR has been 55-59, and from what I've read, that means kidney damage.  I am still on indomethacin, which I believe can contribute to kidney damage.  I don't know what else could be contributing or what might make things better, or if like they say, it's "within normal limits" and "nothing to worry about".

Any input?

He was extremely happy to be off the dialysis and looked quite a bit healthier for a span of time (kidneys do things the plastic tubing just can't), but he only lived an extra 3 years and had to take lots of antirejection meds in the meantime, was in and out of the hospital a lot.

I agree with the person who posted below about talking to a physician about the downsides. Find out exactly what quality of life most transplant recipients have and how many extra years most of them receive. This is a big decision. It will change your life and probably in ways you can't fathom yet.

Wish I could give you better answers. It's so hard to watch people we love suffer.

cigarette, or first hit of whatever.  I also think a lot of times "disease" is an excuse and not a real issue.   I come from a very long line of alcoholics on both sides of my family.  As as result I feel I have a predisposition to becoming an alcoholic, so I choose not to drink.   Alcoholism may be a disease in some people, but it is curable.  HIV/AIDS is a disease too that is 100% preventable.   I don't have a lot of sympathy for people who refuse to take responsibility for their actions and want to blame everyone else.  

fully believe it starts as something to pass the time or forget problems, but then the body becomes dependent and then it causes disease.

is a clotting disorder occasion by an abnormality of Factor 5, according to the dictator, but I cannot get a solid spelling of this disease.  Anyone out there heard of it?

Thanks!!!

They just reported on this disease on our local TV station.

http://www.geocities.com/HotSprings/2312/

"Lymphangioleiomyomatosis (LAM) is a progressive lung disease that strikes young women in the prime of their lives. The prevalence of the disease is not known but it has been estimated that there are a few hundred cases in the United States.


The disease is characterized by an unusual type of muscle cell that invades the tissue of the lungs, including the airways, and blood and lymph vessels. Over time, these muscle cells form into bundles and grow into the walls of the airways, causing them to become obstructed. Although these cells are not considered cancerous, they grow without the usual controls within the lungs. Over time, the muscle cells block the flow of air, blood, and lymph to and from the lungs, preventing the lungs from providing oxygen to the rest of the body.


Lymphangioleiomyomatosis is pronounced lim-fan-g-o-lie-o-my-o-ma-toe-sis. Lymph and angio refer to the lymph and blood vessels. Leiomyomatosis refers to the formation of the bundles of the unusual muscle cells.


Although there is no clear evidence for a hormonal abnormality, therapy has focused on estrogen reduction because of the population affected and includes tamoxifen therapy and progesterone therapy. Lung transplantation has become an established therapeutic option in patients with advanced disease. Recurrence of LAM has been reported in the transplanted lung of two patients raising questions about pathogenesis and suggesting a systemic component is involved.


The cause of LAM is not known. "