Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hello Everybody!
I'm new to this forum and I'd love to hear about any recommended reading, threads, or websites I should be checking out.
I haven't had a lot of time to explore all the topic discussions, but from what I have seen I can tell this is a wonderful community that I hope to become a part of.
For many years I've been battling high blood pressure and after doing everything a textbook patient should do, exercise, lose weight, diet, reduce stress, etc., my blood pressure only continued to rise. After pushing the issue with my doctor we discovered I have polycystic kidney disease (PKD) three years ago.
Upon informing me of my condition my doctor was far more upset then I was, for I didn't have a clue what he was talking about. Cancer, I would have understood that. A heart problem, I've head of those. But "poly-what are you taking about? I pee just fine. I have what?!"
So, I did my research and cried a lot. I found out my father also had it, he died this last January from it at age 67. I wasn't very close to him.
Dad would talk about having "holes" in his kidneys that caused kidney stones, but I could never understand what he was talking about. Then he got prostate cancer, which he didn't treat because he knew more than the doctors. The cancer eventually became bladder cancer, which he didn't treat. What a mess.
By time I learned about my PKD and how it should actually be treated, at least as best as we can, it was too late for him.
I, on the other hand, immediately made some lifestyle changes, found a support group, and signed up for clinical research study for Tolvaptan.
I'm just finishing phase 3 of the study, next week as a matter of fact, and I'm pretty certain I'm on the placebo. However, I'll immediately be moved to the next phase of the study where I'm guaranteed to be given the real drug. So, I'm pretty excited.
So, at this point, I just wanted to say hi.
I'm new to this forum and I'd love to hear about any recommended reading, threads, or websites I should be checking out.
I haven't had a lot of time to explore all the topic discussions, but from what I have seen I can tell this is a wonderful community that I hope to become a part of.
For many years I've been battling high blood pressure and after doing everything a textbook patient should do, exercise, lose weight, diet, reduce stress, etc., my blood pressure only continued to rise. After pushing the issue with my doctor we discovered I have polycystic kidney disease (PKD) three years ago.
Upon informing me of my condition my doctor was far more upset then I was, for I didn't have a clue what he was talking about. Cancer, I would have understood that. A heart problem, I've head of those. But "poly-what are you taking about? I pee just fine. I have what?!"
So, I did my research and cried a lot. I found out my father also had it, he died this last January from it at age 67. I wasn't very close to him.
Dad would talk about having "holes" in his kidneys that caused kidney stones, but I could never understand what he was talking about. Then he got prostate cancer, which he didn't treat because he knew more than the doctors. The cancer eventually became bladder cancer, which he didn't treat. What a mess.
By time I learned about my PKD and how it should actually be treated, at least as best as we can, it was too late for him.
I, on the other hand, immediately made some lifestyle changes, found a support group, and signed up for clinical research study for Tolvaptan.
I'm just finishing phase 3 of the study, next week as a matter of fact, and I'm pretty certain I'm on the placebo. However, I'll immediately be moved to the next phase of the study where I'm guaranteed to be given the real drug. So, I'm pretty excited.
So, at this point, I just wanted to say hi.
Welcome! Thank you for sharing your personal story with PKD. Sorry about your Dad. My Dad died at the age of 98 from bladder cancer. He didn't have PKD tho.
Keep us posted about the Tolvaptan trial. I have an appointment with my nephrologist Tues. and that is one subject I want to talk to him about. (I'm also going to ask him what he thinks of saunas...lol...not to belabor the point).
The National Kidney Foundation site is www.kidney.org
The PKD Foundation:www.pkdcure.org
They have interesting webinars and a free monthly newsletter
www.medlineplus.gov
www.pkdiet.com is interesting too
Good health to you. Feel free to ask any questions you have.
I'm sure you'll quicly discover (if you haven't already) that all of us experience PKD differently. Some have lots of pain, some have none. Some have huge cysts, some do not. Some go into kidney failure but many do not. I had a transplant about a year and a half ago and I feel great...so even a bad case scenario isn't a death sentence!
I kept an online journal here on my personal Daily Strength page before and after my transplant, which you can check out if you want one example of a PKD chronicle.
Welcome!
I have run the gamut of PKD experience, from kidney failure, to dialysis, to transplant, to bilateral nephrectomy (removal of both kidneys) with most of the stops in between, I was lucky enough to miss the pain and grossly enlarged kidneys, looked normal through it all.
sorry about your dad but he died of other causes, not PKD. I don't think there's any connection between prostate cancer and PKD, tho bladder cancer may have a connection somehow. I don't think its common as I haven't heard about it in PKD forums.
good luck with the Tolvaptan and definitely keep us informed. it may be the ray of hope for our children and grandchildren, as well as those who are not advanced in our PKD.
Hospice had done a good job making him comfortable.
There wasn't any direct correlation between cancer and his death. However, the cancer had greatly diminished his quality of life, which was part of the reason he had refused treatment.
My avatar (profile picture) is from an MRI of my left kidney and spine, from a back view. I have uploaded a better picture of the MRI to my photos under my profile, in case anybody is interested.
I had a cat scan done in ER when I had my ruptured cysts 2 years ago. The report said my right kidney measures 20.1 x 11.o x 12.3 cm. That is length and width. How do they figure out one's volume? What is a "normal" kidney volume? The scan showed I have multiple large liver cysts and pancreas is displaced by cysts. Also, right adnexal cysts...(?) I'm asking my nephrologist tomorrow about volume and displacement. I'm going to ask about Tolvaptan and the other drugs being studied. I think water (drinking 3-4 Liters a day) has been proven in a study at NYU to have slowed the progression of cyst growth but not sure about formation of new cysts. That's up to our DNA I guess.
How is your kidney function? Mine is 59% and steady thankfully.
Keep in mind, my calculation is simply a cubic calculation and kidneys are not square. Therefore the volume of your kidney would be less.
From what I've read normal kidneys are the size of your fist. So imagine this, grab a two liter bottle of soda and compare it to the size of your fist. If your second kidney is of similar size you have about two of those bottles in you.
I knew I shouldn't have asked about volume..now I am so depressed! (lol) No wonder I have issues with "feelings of fullness" and nausea before, during and after eating. One neph. suggested eating a "liquid diet" to which I told her I can't see that happening just yet. I do enjoy fruit/yogurt/juice smoothies but I also think we benefit from roughage like salads, beans, grains, etc that I can't see myself putting all my food into a blender and drinking it. I do know tho, that after exercise, stretching, walking, swimming, skiing, my nausea disappears. Haven't figured out why this is true.
My Mom's kidneys were huge too and she stopped her dialysis treatment too. Let's hope this Tolvaptan really works. What was your kidney function? Thanks for your reply. I'll get over it....
My creatinine has been running around 2.0. August it was at 2.2, which is the worst I've seen it. My GFR was 62.
I don't have eating issues to the extent you do. Although I do have issues on a pretty regular basis. Gas and bloating is the worst for me. It just doesn't move very well.
I'll start a thread on Tolvaptan.
I had both my kidneys removed before my transplant and they were the size of 2 NFL footballs and weighed a combined 16 pounds. I posted pics on my profile which you can see if you are my DS "friend." I only made them private because I didn't want to alarm anybody without PKD. They are crazy looking, but after seeing the pics I understood why I felt so crappy all the time!
You were absolutely right about how large my kidneys are according to your calculations. At my nephrologist appointment yesterday he told me the same thing! Yikes! Plus he said to tac on another Liter for my grossly enlarged liver. He was amazed himself and expressed his deep empathy for me. I am a small framed petite person. My next question is-how much does 6 Liters of cystic organs weigh? I told him when I was pregnant with my son, who was 10 pounds I didn't feel half as I do with these "babies".
Then he told me the Tolvaptan price will probably be $1000.00 a month if it makes it to market. Then he said there is a clinical trial on making the colon a remover of wastes that the kidneys can't handle in renal failure. This involves 6 different medications and the trials on still ongoing. Sauna therapy is no therapy for PKD. Drinking large amounts of water is the only encouraging thing I can see thus far.
There is a 2011 Journal Neph I'll send later as to the promise this holds.
Sorry I couldn't have more encouraging news for us. I just feel so bad for those on this sight that are advanced and have pain or are waiting for double transplants. Makes me want to cry.
I guess one needs to have faith in these situations. I feel that God will eradicate all illnesses one day. (Isa. 33:24) I just need to be patient in the meantime. I pray for others to endure and don't lose sight of hope. Hope is a powerful thing.
I just viewed your post op pictures of your double nephrectomy. Oh my goodness! How you must have suffered with those huge kidneys! For three years they were that big? awgh...I'm glad you got a transplant and are doing fine now. wow.
Hugs
My suggestion is to always get copies of your test results. The doctors don't know your life style and diet as well as you do and you may be able to identify things that help or hurt. The tests are fairly easy to read, especially for things that are out of range. Some items you'll have to Google. It also makes you a more informed patient allowing you to ask better questions.
Also, keep in mind that lab results get screwed up. I collect all my test results and I can't believe how often something is "not right." Start by running the tests again.