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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How to support someone with PKD

Hello everyone! I'm new here and don't know exactly how these posts work, but I'm here to reach out for advice...


I do not have PKD but my boyfriend was diagnosed months ago with "the worst possible case" of this disease...he's been sick for well over a year before he was diagnosed. for all of you who have it..I'm sure you can all sympathize with him. He's 29 years old. His father, aunt, and uncle have passed away from PKD. His older brother also has it. 


Some days are better than others, my boyfriend has been so strong and positive and  almost never complains about the pain. He's gone up several pant sizes due to the swelling and also has a stomach hernia that he's dealing with. 


I don't want to complain to him. I don't want to upset him more...but I'm struggling. I'm worried our future has gone out the window, at some point he won't be able to work as much or at all, he's got a ton of student loan debt, I'm still striving for a master's degree...I'm worried we will never be able to live together because i wont be able to support us both, having kids isn't a sensible option anymore...I'm not sure if I will be able to take care of him later down the road. I'm absolutely terrified and feel ashamed that I won't be able to be strong for him...most important I'm worried i won't be able to give him the best remaining years of his life...


If there's any advice anyone can give me about this path...i would appreciate it so much,  I need to hear it.

Replies

Chewitt
Chewitt

Hi Mewty,
I'm sorry that you and your boyfriend are experiencing these difficulties. First of all I'd like to emphasise that PKD is not a death sentence. It can be a challenging illness, but there is plenty of hope. For those who reach kidney failure, there is usually the option of kidney transplant, meaning that individuals can go on to lead close to normal lives. Is your boyfriend anywhere near this point? What is his kidney function? He is affected by the large size of his kidneys and pain, so has difficulties at the moment, but a transplant would remove these problems. You talk of his remaining years, but he has a lot of years ahead of him potentially, so there is plenty of reason to be positive. It may of course be difficult in the interim years, and dealing with a chronic illness puts a big strain on relationships. You need to keep talking, but not only rely on each other. Keep in contact with friends and family and accept offers of help when necessary. You can also still have children if you want to, especially with modern techniques such as preimplantation genetic screening: you may want to seek genetic counselling. You could perhaps also attend your boyfriend's next appointment so that you can ask any questions you may have. You may find some of the answers reassuring. This may not be quite the life path you envisaged, and it will not be without difficulty, but it doesn't have to be as dark a picture as you may imagine and you don't have to deal with everything by yourself.
FullyHalfEmpty
FullyHalfEmpty

Hello - I hope it makes you feel better to know that many of us live long, active lives with PKD. What is his GFR, BUN and creatinine levels? He may *feel* bad but actually be in relatively good health, depending on what those numbers are. We just deal with the bigger belly, nausea, vomiting, exhaustion, etc. I have very little kidney function left and still work full time and helping my husband remodel our kitchen. I was approved for a live donor transplant in April. If your boyfriends disease is that far along, maybe he might consider a live donor transplant? All he would need to do is get a referral to the transplant center closest to you and get evaluated. If he's as bad as you say, he'll be approved quickly and move up quickly on the regular transplant list (for a deceased donor) but of you or someone else he knows can donate to him, he could be feeling better by this time next year. Is it going to be tough? Yes, it will, but it's not a death sentence and he most likely will live a normal life span, even with PKD.
Ilovesomeonewithpkd
Ilovesomeonewithpkd

I completely understand your situation. My boyfriend has it too, though not so severe, hopefully. We live apart at the moment as I too, am striving for a master's degree. I have similar concerns as yours, and I'd suggest you stick with him. Your support is what he needs right now. Get a job that pays well, there are plenty. Do the little things for him, and don't worry. There is no cure, but there is treatment! And people do survive! I wish us both luck. Hopefully our boyfriends get better!
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