Advice About Kidney Disease

[Captrim2213]

Hi Everybody,

A little background. I’m 34 and living with a long term kidney disease. My kidney function is around 18% the last few years.

I attend kidney specialist regularly but am growing frustrated.

In the last six months in my opinion my health has decreased considerably such as not having any energy and not appetite which has caused me to take a period of time off work. My doctors response is this is part of the course and there is nothing we can do.

I would love to know if anyone in the same and is there anything they do or take to improve energy levels and live relatively normal life.

Also I have three family members who would live to give me a kidney and all are in good health. When I asked my doctor could this be looked at, he said no that I have to be under 15% for me to tested, then it will take 18 months to get donors tested to see if there compatible. Is this normal?

[nellie237]

I see you are in Ireland. I am in the UK and looked at the NHS :

Known as end-stage chronic kidney disease or kidney failure, is the most common reason for needing a kidney transplant.

Ideally, living donations will come from a close relative because they are more likely to share the same tissue type and blood group as the recipient, which reduces the risk of the body rejecting the kidney".

I always thought that family members could be considered earlier, but I guess I was wrong

In believe in America it is totally different,

I can't help with your energy problems, I'm sorry, but I'm sure somebody much netter informed will come along,

I wish you the very best of luck.

[Mgt8]

Hello,I am sorry to hear about your situation. I have had kidney failure, been on dialysis and have had a transplant from the donor waiting list.

The information you are receiving seems strange to me. The aim amongst medical practitioners must be for pre-emptive living donor transplants. You should not have to go on dialysis before getting a transplant if you have a willing donor.

Has it got anything to do with the present situation with covid delaying operations? Could I suggest you might like to get a second opinion from a different doctor or even a different hospital.

I wish you good luck with your search.

Best wishes,

Mgt

[Captrim2213 in reply to Mgt8]

Thanks Mgt8 for your comments

Yes I recently got a second opinion, their opinion was I needed dialysis/transplant maybe within the year. She only reviewed my case as a snapshot but thought when I get new kidney I should have no other issues.

Because Ireland is a small place she was hesitant to take over my case, due to the fact everyone knows everyone.

I might contact her again and ask if she would re consider taking over my case as I found her knowledgeable and understanding.

[Mgt8 in reply to Captrim2213]

Sounds like a good plan....Hoping it all goes well for you. Life after transplant can be marvellous....

Mgt