Coping with my husband's disease

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Coping with my husband's disease

Postby ashleekim » Thu Jul 28, 2016 7:54 pm

Howdy from Texas! My husband was diagnosed with pkd about 3 years ago. It runs in his mothers family. Everyone has it. It seems that everyone has also passed from it. Being that i work in the medical field, I am very pro-active in his disease. He is young. 49 years old. He has a hard time coping with the chronic pain. His gfr fluctuates between 29 and 25. The size of his kidneys amaze me! While he is 5'8", 170 lbs, his kidneys are double normal size. This causes other health issues like acid reflux and shortness of breath. He is finding it harder to work his norm as well as play! I am a caregiver by nature and have a ton of patience. He, on the other hand, is very emotional. A rollercoaster at times. I try to be as positive as i can be for him. Then i cry alone so he doesnt get upset. We have children and grankids that we adore. Is there anyone out there who has advice for us? How to cope? What to expect? Looking for an ear to bend and perhaps a shoulder to cry on. Thanks...


Re: Coping with my husband's disease

Postby Guest » Tue Aug 30, 2016 10:12 am

I am so sorry to hear how difficult your husband has it and he is very lucky to have such a loving and nurturing wife to help him. it's really hard being the spouse to someone so ill. my husband is 34 and we just found out his Kidneys are enlarged and has multiple cysts already. his GFR is currently 84 so thankfully, at this stage, he isn't experiencing any symptoms. this runs through his mom's side of the family and they luckily have all had successful transplants. the future terrifies me after watching how ill his mother got before being placed on dialysis. it's so hard watching knowing there is nothing I can do. right now he is focusing on getting healthy and has lost 45lbs so far. it has been very stressful for me though trying to make sure he is eating what he needs to. eating and weight are something we both struggle with so it's been a huge change. we have a one year old son now and all I keep thinking is the only thing I can do for him is the same thing and that's to make sure they are healthy in everything else. it's hard being the strong one and holding back those tears. I can't begin to imagine how emotional it is for them but you are allowed to have days when it gets too much for you too. You can't burden yourself with it all on your own all the time!


Re: Coping with my husband's disease

Postby JodiR » Tue Oct 09, 2018 9:48 am

Hi, I see that this forum is a couple of years old. Does anyone have any updates? My husband is in Stage 5 Kidney Failure, and we have a 17 month old son. We're in the process of looking for a living donor, as well as on the cadaver list. He will be getting a port put in for dialysis in the next month. Everything is finally becoming "real" to us now, and I am finding myself becoming very anxious. Anyone have any advice? Thanks!

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