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PKD Charity for Autosomal Dominant PKD
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Staying positive?

I am currently egfr 23, I have constant back pain,tiredness,nausea,loss of appetite and have just had the news that my husband and sister are not a match for live transplant. We didn't prepare for this news and are all gutted, my question is is how do you stay positive knowing that your condition will just worsen until you are at the required level to start dialysis and be put on the transplant list. I have had to finish my part time job due to the physicality of it and am feeling a bit down for the first time with this disease. Please help :( 

8 Replies

Hi there

Sorry to hear your news, this is hard and not easy to prepare for. It is not the end of the road.

Yes your condition may gradually decline but dialysis can maintain us for many years.  I had terrible back and flank pain for years and really struggled until I was prescribed Lyrica. his has made a real difference to my pain levels. Yes there are side effects but such is life.

I have just given up my job as a nurse as I feel so tired due to the inability to sleep, pain and as you say the sheer physicality of work. It is a major change and I have found some hobbies to keep me busy.

It is hard to stay positive but what is the alternative? Keep your chin up! Try dancing it really helps me and really lifts your mood. Even if it is just around the house, put the music up and go for it !!

Best wishes Christine


Thankyou Christine. I do love music and am constantly around music and dancing as I have girls aged 17,16 and 5. Haha they keep me very entertained. I'm looking for a yoga class as I'm told it can help you to relax. I'm on codeine and paracetamol for pain but find they give me headaches and nausea also. Like you say such is life. Best wishes to you too.



ive been looking into pkd also as i have it myself it says aviod paracetamol and asprin 


I have never heard of that Ricky. My neph has described paracetamol and codeine and I don't think he would prescribe me something i wasnt supposed to have, i know pkd patients are not allowed to take ibruprofen as this is bad for your kidneys.


Our doctor said that paracetamol is the only painkiller we can use safely. Any Non steroid andiflamatory drug is forbidden. The other main question is what can we eat? Is it safe to have a low protein diet, avoid any juicy fruits, any fruit with high potassium like bananas. My husband has not diabetis, but he doesn't eat any kind of sweet as he avoids sugar. He is afraid of any food now and he always feel hungry. I feel so sorry for him.


Hi there,

Paracetamol is fine for us as long as you do not take more than 8 tablets in 24 hours.

Diet is an individual thing it depends on your bloods. My potassium has never been a problem. I eat a low fat diet and don't avoid anything really.

I have the occasional banana and melon. I try to have 2 days with no meat. Maybe you should ask to se a dietician for some help


if you google pkd diet-the kidney it gives you a guide of things you can eat an take an a list you cant


or if you google kidney desease home remedies/kidney desease cured at home it give some useful imformation to


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