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.

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norma67 05/03/2011

Has anyone ever heard of this happening? Going from one number, not down, but up? Even my creatinine is up. I'am so shocked tonight and wanted to share this with alllll my family. One other thing has happened. On the lab report from my ultrasound, it stated that the cysts on my right kidneys, which has been the serious offender, have shrunk! I now have more vialable kidney tissue that I had before?? Has anyone ever heard of something like this happening? I am so happy that I am crying tonight. I know it's not fair to all of you, but I just had to share it with someone that understands and God only knows that you guys understand. At this point today, my GFR is 40, it was down as low as 27, my creatinine has been as high as 1.9 and is now down to 1.4. I want to tell you all that this has not happened over night or with any degree of magic. I have worked like hell to make things happen and it appears as if my efforts were not in vain. I am very old as you guys know and the thoughts of having to live what remains of my life on dialysis, well it was pretty depressing for me, so I began to work and work. I use the treadmill almost every day at the gym, even though it kills me as I have psoraiatic arthritis and spinal steosis, I still do it. I was determined that I would never go on dialysis and now there is a chance that it may never happen. I'am not going to be so cocky and think that I am above it all, as I certainly am not. I'am going to enjoy these days of not having to worry about myself, Jim and my kids living without their mother. I'am going to enjoy every single day of my life, no matter what is thrown at me, which has been considerable of late. I've not told you the entire story, thats for another time. Tongiht, I am so grateful and if there is anything I can do to help any of you, please, please just ask away. Maybe I have magic powers, LOL JK!!!! About diet. I do not drink any coffee and haven't since I have was 39, take that for whats it's worth. I take no aspirin or anti inflammatory drugs! I have to confess that I did smoke at one time, but i don't anymore, I knew that it was so bad for me, but I couldn't stop, finally I did. I thinking what else I have done, you know the exercise drill that I've done, I've always eaten a well balanced diet, medium protein, drank milk and always drank some wine, LOL no big surprise there, huh guys. I'am trying to think of things to help you all. I think that diet has played a huge part in my illness. I never went to the extremes, always tried to keep it balanced, so take that for what it's worth as well.

OK, I'am done. The tears are gone and I am ready to help any of you that I can. I work really hard for people and a lot of you will attest to that. If there is anything you need or want that I can give you, just yell NORMA!!! HELP!! And I'll be there.

With so much love and affection for all of you,
Norma...

norma67 05/20/2011

Hi Jess, Actually the change in my gfr was due to me drinking tons of water!!!!!!!!!! When your creatinine goes down so goes your GFR and thats what I did ok! I eat a well balanced diet, as much as I can. I can't have many vegtables or fruit due to an overload of phosphorus and potassium, so I could only eat junk, pure unadulterated junk. No wheat bread, no broccoli, brussel sprouts, all the things that I love, I had to stop eating. But it worked, all the labs are now within normal limits. So the lesson is this, as your kidney function reduces, so goes your labs down the toilet. You can get them back up again and I did, but not without putting on a few pounds. My vaniity is gone...:( But I stil trudge on over to the gym every day and will as long as I can.

I don't know how Ruth is, the last I knew she was very bad and now there is no correspondence at all, and even her private email is backed up. I'am very worried but the thought crossed my mind the other day that maybe she is having that duel transplant that she needs so badly. Do you think? She always said that is was next to impossible, but maybe it is happening now. Thats what I'am praying for.

Be very careful with the chiropractor, they are not medical doctor's, they have no degrees in anything except chiropractic maneuvering that takes very little to get. Because you have PKD, you should be seeing a medical doctor for the fall you had. At this point, you probably need rest, a pain reliever, ice or perhaps a muscle relaxant. Just my humble opinion and that of the medical world.

lots of love,
Norma..

deleted_user 05/21/2011

I did talk to my medical doctor about my back and she said it would be fine for me to go to the chiropractor. I do not want to take any pain meds and I am letting my body heal slowly and gently. My loving husband is helping me immensely with the meals and housework. He now knows how to do the laundry! Lol. I believe chiropractic therapy is beneficial for me. It may not be for everybody I'm sure.
Thanks for caring,
Jessica

deleted_user 05/21/2011

just wanted to comment on the writer who asked about decaf coffee and cola (ernhrts).
a cup or two of coffee a day shouldn't hurt, decaf or not.
as to cola, I can't think of a single good reason why you would even consider drinking it. well, maybe one, it tastes sweet.
the only reason we keep it in our house is we tumble jewelry and after several tumbles we use cola to clean the steel shot.
cola contains caffeine, it is high in phosphorous, can be high in sugar or if artificially sweetened has chemicals that don't do any good and may do harm.
I stopped drinking soda a long time ago when I learned that it contributed to belly fat. therer are other sweet drinks, such as lemonade, which are far better for you but water is the best choice. since we were conditioned since childhood to want something sweet to drink our taste buds need retraining to enjoy the wonderful flavor of water, but it can and should be done.

norma67 05/21/2011

Jess, I reallty do care as I 've seen my fair share of catostrohic incidents relult from chiropratic care. Glad that your MD approve of all your care, Common sense comes to mind. Take good care sweetie.

love,
Norma..

deleted_user 05/24/2011

Spiderwoman, I drink cola because I work approximately 70 hours a week (3 jobs). One of my jobs is a bartender and it is just so easy to grab a diet cola from the soda gun to keep hydrated. I am tryng to switch to all water but am having difficulty doing so. Question about the artificial sweetners, I use splenda quite a bit, are we no supposed to be using those? Thanks in advance!

tryn2bpositive 05/24/2011

What a great post to read! My mother had her GFR go up after they treated her for anemia, so, I have heard of this. I really think that working out along with dietary change is key and your efforts have paid off! I've had some success these past six months in keeping the disease from progressing and getting rid of, and shrinking, my kidney stones.
Reading your post has given me renewed hope and I'm going out for a walk! Keep it up. Mind over matter!

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