Worried about mum.

[alison1981]

My mum and sister both have PKD. I have just been told in the last week that I also have cysts in my kidneys and liver. (I'm gutted because this means I can't offer my sis/mum a kidney if they need one)

My mum wasn't diagnosed until she was in her late 50's when one of the cysts on her liver burst and she was taken to hospital. My sister was then screened. She is in her late 30's and her condition is fairly bad. She has an associated heart condition and is taking the medication to slow down the cyst growth (can't remember name). I have no symptoms and only know I have cysts because I had a scan because of my family back ground.

That's a bit of background for you. Here is my actual post:

My mum is now 67 and everything I'm reading is telling me that she has a good chance of not making it into her 70s. I live in a different country from her so I only know what she tells me and she says she is not too bad. But she also says her kidneys are 3 times the size they should be and she is always in pain. She has also told me that when she is in kidney failure she is not going to get a transplant or do dialysis.

I am really starting to worry that I only have a couple years left with her and that she is going to go down hill quickly. I'm also worried that my sister's condition is so much worse and she is so much younger.

I just want to know if anyone has a similar experience or any advise they can give me.

[PKDC-Admin Partner]

Hello Alison,

I'm sorry to hear about your mum. Does she live in a country where dialysis and transplant is not available to someone of her age? Or has she decided not to try those types of treatment?

Transplant may not be an option owing to age but many older people do reasonably well on dialysis. Has she discussed having a kidney or both removed to stop the pain?

If she is adamant, can you find out if there is a 'conservative management' in place to help her live with a good quality of life for as long as possible?

Tess

[LucyWest in reply to PKDC-Admin]

Hi Alison,

My Mum was 66 when I lost her. She had both kidneys removed and a cadaver transplant following several years of dialysis. She was amazingly strong as Mother's are, but all the anti-rejection drugs (apparently) made her susceptible to skin cancer which eventually manifested a brain tumour. I never told her I had the same diagnosis.

My best advise is to spend every moment you can together xx

[alison1981 in reply to LucyWest]

I'm sorry to hear about your mum. It must have been so hard.

I need to look into taking extended leave from my work so I can go over and spend time with her. But I think she would be pissed at me if I uprooted my life for her.

[alison1981 in reply to PKDC-Admin]

She is in Canada so the treatment is available. She doesn't want to do it. Usher might think differently about it if she goes into kidney failure.

I worry because she is far away and not very good at telling my sister and me when something is wrong.