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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New to the group

Hello everyone. I've been living with PKD for a long time. I was diagnosed as a pre teen and remained symptomless until my mid twenties. I'm nearing my mid thirties now and still in stage 1 but the size of my cysts are so debilitating. They just keep getting bigger no matter what I do. It's hard to move, period. :/ Because of my kidney function being so excellent I am just advised by my doctors to keep doing what I'm doing: eating as healthy as I can, sticking with the herbal remedies I use along with my medication (lisinopril), and not pushing myself to go beyond my limitations. I also have intractible epilepsy but my seizures have decreased drastically (thankfully!) over the years. There are moments when I just can't take the constant pain, discomfort, nausea, etc. that comes with PKD and that's when I reach out for support. I'm blessed to have a wonderful husband who takes care of me without complaint, is my best friend, and the greatest person I know. He encouraged me to seek others with PKD since my list of friends has dwindled so much over the years. Many don't understand and I feel like those who have stuck around may be be doing so out of guilt. I know everyone who lives with this can relate to how I feel. There are days I feel like an alien, or like a carrier of aliens since my cysts are weird little foreign sacs, walking around in a world I don't belong in because of my illnesses and limitations. I have trouble reminding myself that's not the truth sometimes, even though I like maintaining a positive attitude as best I can. I'm looking forward to connecting with you all. Thanks for reading. 

Replies

Chewitt
Chewitt

Hi there,
Welcome to the group. I feel for you because I know exactly how you feel. I've had times in the last 10 years when ai've thought at can't carry on like this, hauling these enormous organs around and enduring th pain and discomfort. However, somehow you just keep going. I've been surprised by how much the body can adapt, and keep accommodating the changes. It's also amazing that you can grow used to dealing with the pain, to the point that you tolerate it and although it's still there, you learn to deal with it and let it bother you less.

It is indeed a blessing to have supportive friends and family. It can be hard to keep up with a lot of friends, so focus on mainting good relationships with a couple of good friends. Support them when they need it, too, and you will have mutually rewarding friendships. I'm sure the friends you still have are still around because they want to be friends, not because they feel they have to be.

Pacing yourself as you do is the right thing to do, and it's important to make time to do the things that you can still enjoy. Keep thinking positive and take a moment each day to remind yourself of three good things. It helps.

You are not alone. Keep in touch.
Lady_Colossus
Lady_Colossus

Thanks so much :)
MaudeElizabeth
MaudeElizabeth

Hi! I'm new to the group too. I was diagnosed at 19 and am 60 now. One of the real tricks to living with Pkd is accepting the powerlessness. You are powerless to stop the cysts...or knowing when or how they will effect you next. I've been on the transplant list for 1 and a half years and am of course powerless on when a call might come. Hold your friends dear because they are the ones you will need through the years to listen to you, as you listen to them. Be sure to thank your husband too for being there mine is my partner in waiting. I turn it over to my higher power daily...ok sometimes many times daily. Other times I can just forget about it for a while those are the blessing days. Lately I am counting ever functional hour as a victory and doing as much as I can to enjoy life...it helps a lot. Hang in there even with the hassle of PKD life is worth it!!
Lady_Colossus
Lady_Colossus

For sure! I just do my best to live as well as I can. Thanks for responding. :)
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