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.

413 Members
2,161 Posts
0 Online
Kidneys & Bladder
/ Polycystic Kidney Disease (PKD) Support Group

new to group

deleted_user
deleted_user
Hi all, I am new to this support group, in fact it's the first one I've ever joined! I am a 51 year old female, diagnosed w/PKD 20 years ago and the only thing I've had probs with is my BP. Only the last couple of years have I experienced pain, ruptured cysts, etc. My GFR is 50 which apparently is pretty good, considering my age. My dad died of kidney failure at 73, choosing not to go on dialysis. I went to the convention last August in San Diego and learned more than I've learned about PKD than in the last 10 years!!! I'm looking for people who share my disease, as I don't know anyone who is going through this, and wanting to "compare" symptoms.......just don't know if it's coming from the disease or just my age :-0) I'm having ripping, tearing feelings in my belly and back constantly and am figuring that's the cysts....anyone have these pains? Also, when I eat more than just a small meal, I had such a "full" feeling....my neph believes it may be because of the kidneys being so large it's more or less "squishing" my stomach. I also get a very, very nauseated feeling if I eat too much or eat too late in the evening before I go to bed......anyone? Wondering again, is that just age? LOL I would SO like to connect with someone!!! I appreciate any advice!!!
deleted_user
deleted_user
hi and welcome to a great support group.
first, about your age, we have lots of people here older than you so don't feel you are about to fall apart.
good that your function is not bad. as to the twinges in your belly and back, could be PKD, could be muscular. one thing I doubt is that it is your age. age doesn't cause those feelings, at least mine didn't.
as to the indigestion, that could be due to your cysts enlarging and crowding your stomach, sorry to say. best to eat your main meal early and have a light dinner so you can sleep better. it could be reflux. go easy on fatty foods because they can make matters worse.
I don't have to tell you to cut way back on sodium and drink plenty of water.
visit us often, you will learn a lot from this group.
norma67
norma67
Oh what I wouldn't give to be 50 again, guess you know by now that I'am pretty much over the hill, naaa, just kidding you. Welcome to our group, it's a fabulous group of people from all wallks of life and we all have PKD or have a family member with it. About your age causing all these symptoms, I don't think so. I'am much older than you and don't have any of these things happening. One thing I do have though is the full feeling after I eat only a small amount of food. Kidneys are probably pushing everything in the wrong direction, whatever that might be. I have spinal stenois, so my back hurts me bad, add to that my huge belly and it makes my back hurt even worse. So you can see, we all have our little things that bother us, but it's not due to age, I'am fairly certain of that. I would say the average age of PKD patients on here is way younger than you and I, a lof of them are in their early 40's and some way younger, so age doesn't seem to be relavant. As Helen said, visit us a lot, she knows whats what around here and you will learn as well. Welcome again and ask any questions that you have.

Best Wishes,
Norma...
deleted_user
deleted_user
Thanks! Yes, I thought he indigestion may be because i was eating too late in the evening, and they have diagnosed me w/reflux so I guess that's it. The "tearing" feeling/pain is in the front of my belly, in the middle of my ribcage and to the right. Do you know if the kidneys get so large that they push on the muscles and that could possibly be the cause of the pain? Have you heard of that before? I even thought it could be gallstones, but they've tested me for that long ago and it didn't show up on the ultrasound. I'm one of those people who like to know the cause of the pain, but am thinking I may never know from one day to the next....I'm just starting to experience pain every day now. I've read all of the comments and find myself blesssed again that there are so many people out there that are so supportive and I thank you spiderwoman8!!
deleted_user
deleted_user
I had very large kidneys before they were removed in a bilateral nephrectomy. I had some aching but very little pain. I did however have a full feeling much of the time and threw up very frequently at night. Pretty much any time I overindulged in the evening I paid for it that night! At one point I was throwing up (only at night) about 2 times a week. My kidneys weighed 16 pounds and were crowding out my other organs on my relatively small frame.

I have only thrown up once in the last 9 months (since I had the nephrectomy and then transplant)! Hooray!

I agree with Spiderwoman. Eat small meals at night.

Welcome to the group. You'll find lots of people with helpful information here.
deleted_user
deleted_user
Hi
Welcome to this great support group.:)
Jukesy ((((((((hugs))))))))))
Chewitt
Chewitt
Welcome to the group ttlyblessed. I hope you can find the support you need here. I have the problem of massive kidneys, accompanied by an enormous liver, and I also experience a lot of pain under the right ribs. There's a great deal of pressure on a number of organs as a result. I have pain when I have a drink, not just food. Something is bursting through my ribs, which I try not to think about! I have read that the increased intra-abdominal pressure puts strain on the deep muscles in the abdominal wall, also causing pain. This may be what you are experiencing. I can never really pin point the exact source of the pain on any one day, but have deceided that as there's nothing I can really do about it, it doesn't matter. It's all pain that wouldn't be there if I didn't have the enlarged kidneys and liver.

As the others have said, eating lttle and often may help, rather than having one large meal. I tend not to eat too much during the day because after eating I can barely move. This means I have to eat in the evening. You can't win.

Chewitt
deleted_user
deleted_user
Hello ttlyblessed,
Everything you wrote about yourself is the same for me except I am 55. I have a size 8 petite frame and my kidneys and liver are huge and cause quite a bit of discomfort especially at night when sleeping. I waken frequently. I start the day with fresh lemon juice in water and drink plenty of water round the clock. I used to have nausea/vom. but my neph. said to eat small meals every 2 hours. Plenty of fresh fruits and vegetables, brown rice, beans and greens. I cut back on animal protein and my last neph. visit he said it would be helpful to be vegetarian but if you can't then not to stress over it. I try to enjoy my life by enjoying my food that does agree with me. Exercise for me are walks down our country lane or a round of golf, swimming. I am an artist and still work for clients doing portraits and landscapes. Focus on what is working for you rather than what's not. Do you have a hobby or a talent like music or art? I have a very supportive husband of 26 years and this support group to answer my questions which allays my anxiety when stuff happens like ruptured cysts. If I understand what is happening then it takes the fear away. We are here for you. Ask any questions that you like. Welcome aboard!
Jessica
deleted_user
deleted_user
Wow....so I'm not the only one? ha ha ha I, too, am very small framed...5"2" 110 pounds and so was thinking it may be why I'm having the pain now...the kidneys are quite large, and I know I have cysts on my liver as well. I can't tell you how much better I feel knowing this is possibly "normal" I have a wonderful husband, I am VERY active w/ 5 kids (one 13 yr old still home) and 4 grandkids and I volunteer 20 plus hours a week at our church and am passionate about my hobby, embroidering on greeting cards. I'm trying to "live life" as much as I can, but find some days are a bit challenging....I admire alll of you so much, and hope that I can be of help to some out there sharing experiences of joy and challenge!! I feel totally blessed...hence the name :-)
deleted_user
deleted_user
Welcome to the group! We have something in common...aside from PKD. I have 5 kids as well. I don't find that very often. :-). My youngest is 17. We have 1 granddaughter and one on the way.

So good you could join us here. I know I am always up for new insight. The people here are awesome and offer lots of support and good advise. Keep checking in...there is always something to chat about!

God Bless,
K~
LPenrod
LPenrod
Hey guys,

I think I remember hearing that when cysts rupture, they can attach to surrounding tissue. I think Ruth refers to this as "sticky" kidneys.

Can anyone confirm?
LHanley
LHanley
Hello and I add my welcome! The constant ripping and tearing feelings concern me - that just doesn't sound right. The full feeling can definitely come from your entire gastrointestinal tract being squished by large kidneys and liver. Eating frequent, small meals is excellent advise - for everybody, not just us. If it were me, I'd be talking to my Doc, especially if the ripping is a new symptom.
deleted_user
deleted_user
Are those "ripping, tearing" feelings in your abdomen and back constant and severe? I would call your nephrologist and ask him about it. I have experienced 3 ruptured cysts but it was severe pain that with pain meds and bedrest for 2 days went away. A cat scan revealed the 3 cyst ruptures. I know kidney infection can be very painful. Let us know what your Doc. says. Hope you feel better soon.
Jessica
deleted_user
deleted_user
Just wanted to say "welcome". I am pretty much a lurker/reader. Sometimes I'll ask a question,but mostly I just read and try to digest all the wonderful information our fellow members so willingly share with the rest of us. They are truly a wealthof knowledge and support!!!
deleted_user
deleted_user
Thanks for all of your replies!! The "tearing" feeling I have here and there are in the same place..in my upper abdomen...right where my ribcage meets, and I've done an experiment of sorts and find that it bothers me after I've eaten more than I probably should...hmmmm. So possibly it's from my stomach pushing out as someone had suggested. I called my neph and she said it's very possible..... So I've been eating just a bit at a time.....maybe a small portion of veggies and some bread or a small bowl of fruit and yogurt, etc and I seem to be okay. I think that may be the culprit. But.....another question to all of you....does anyone have an elevated liver test w/PKD? My blood results came back "okay"....with a GFR of 50 and creatinine at 1.2...but my AST was elevated a bit. Can the cysts on your liver cause the numbers to rise? My doc is doing some more specific tests in a month or two, I'm trying to lay off tylenol, etc to see if that makes a difference. Just wondering about y'all.
LHanley
LHanley
As far as I know, the cysts don't affect liver function - anyone else?
Posts You May Be Interested In
  • Ilovethekitties

    OT My last day with USPS will be 2-27-15

    Posted by: Ilovethekitties
    Last Reply: GiphyOlivia
    21
    I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
  • Rizen

    Walk a Day

    Posted by: Rizen
    Last Reply: mujicaptsd
    2693
    I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...