Hi Gary,

 

Welcome to the best support group on the net! Although I'm pretty new to this whole thing, I will try to answer some of your questions.   

 

The progression of PKD varies widely from person to person, even within the same family.  There is really no way of predicting who will have problems, and who won't.  I think it's great that at 55 you are doing so well.   From what I understand, loss of kidney function is usually very gradual.  Also remember that not everyone with PKD has problems from the disease or ever reaches kidney failure.  Hopefully, you will be one of the lucky ones!!!!

 

There are currently clinical trials for drugs which hopefully will prove to stop or slow the progress of cyst growth.  In the meantime, try to drink as much water as you can. (Check with your doctor first and make sure you can do this safely.)   Researchers believe that this may be effective in stopping or slowing cyst growth as well.  In the meantime, try to live a healthy life.  Don't smoke, try to keep a low sodium diet and limit caffeine intake,  get exercise, watch your blood pressure, and be as optimistic as you can.  

 

There are a bunch of amazing people on this forum who hopefully will see your post and offer you lots of great support and advice.  You may want to repost on the general board (in addition to the introductions board), because I think that people check that more often.  In the meantime, keep posting and let us know how you're doing!

 

~Marlene~

 

 

 

 

hi Gary and welcome. I have to echo what Marlene said. there is no better support group than this one.

PKD develops slowly over time but once the decline starts it progresses more quickly as cysts take over healthy kidney tissue.

since you are in pretty good health now it is wise to do whatever possible to stay that way. drinking lots of water and controlling blood pressure are very important. cut way back on salt if you are using it because it can elevate your blood pressure and contribute to dehydration, both bad for your kidneys. if you have no problems with your labs there is no need to change your diet except to eat healthier. get plenty of exercise and fresh air.

I hope you will find a home here and we would love to have more input from men so feel free to post whenever you want.

Hi, Gary and welcome!

Everyone is affected by this disease in a different way and everyone's kidney function fails at different speeds. 40% of those with PKD never need any treatment for the kidney failure!

A good site for  PKD information is that of the PKD Foundation: www.pkdcure.org. There is also lots of good information about kidneys in general at the site of the American Association of Kidney Patients, www.aakp.org.

Barb

Thank you for your kind welcome.  My concern is generated by a GFR of 25 and a somewhat elevated potassium.  I somehow got the impression that as the kidneys were increasingly unable to cleanse my blood my health would take a corresponding turn for the worse.  Over the past year I have begun to take Vitamin D.  I have had kidney stones in the past and periodically have flank pain.

 

Am I likely to experience fatigue?  I actually smoked since and was 17.  I excused it because I figured I would die of kidney failure before my smoking would adversely affect my health.  I started to get short of breath, so I quit, and have been smoke free since last May.  Since then I have learned that you can get short of breath from kidney failure.  My blood pressure actually dropped significantly this last exam.  But I read that this again can be the result of a failing kidney. 

 

I'm reading what I wrote, and suspect that I sound like an over anxious twit.  I am so sorry.  Thank you for your positive words.  I continue to read.

 

Gary

Gary, of course you don't sound like a nervous twit. Why wouldnt't you be nervous with your kind of family history. As I'm sure you already know,your relatives did not have the benefit of all our modern drugs and technology. It's so easy to attribute pain to PKD and it could be, but it also might not be the PKD. You have made it a long time with no symptoms and that is a good thing, you might not ever need dialysis or a transplant. Everyone progresses at a different rate and in a different way. Your reduced blood pressure is excellent and probably due,  at least in part, to your having stopped smoking, Congrats on that, by the way!! You dont mention when you are seeing your Nephrologist next or even if you have one., That should certainly be your next step. It's so good to have a man posting, you'all are less likely to share  your thoughts and concerns on a board. Please let us know how you are doing and what your Dr. has to say. Dianne

hi again Gary. congratulations on quitting smoking. knowing you can still be short of breath with kidney disease is no reason to go back, let's just try to figure what else can you do.

your elevated potassium can be an issue. it is important to try to keep your potassium (K) in normal range and that means eliminating high K foods from your diet, or severely limiting them. potatoes, squash, pumpkin, tomatoes, sweet potatoes, certain fruits can be very high in k and should be limited.

your doctor should have given you a list of high K foods but if not, check the "Nutrition" link on the left of this board and find the list of foods that are high in potassium.

I forgot to mention the Vitamin D.  did you discuss it with your nephrologist?  why are you taking it?

I don't have enough information to know if you are doing yourself any good or any harm but I do know you should not take any supplements at this stage of your kidney disease without letting your nephrologist know. you should not take any medications, even aspirin which can damage kidneys, without clearing it with your neph. 

My nephrologist prescribed it and calcitriol (sp).  He didn't talk much about it with me, which frustrates me a little, but he is suppose to be one of the best in the area.  What has happened in your life with PKD?  What has been the hardest for you?  My dad, uncle, aunt, and grandfather died so long ago.  I did not pay attention to what was occuring in their life before.

 

By the way Merry Christmas... I have been busy with holiday celebrations.  I look forward to learning more from all of you in the coming days.

 

Gary