DH just diagnosed

[Pipepans]

Just diagnosed with hereditary PKD. Will need dialysis/ transplant eventually, needs to think about a recommended drug that will delay need for dialysis further but not great side effects. This has knocked me for six.
He's being very stoic about it all so I don't worry but I feel terrible for him. He had great plans in place for the future and retirement eventually and now this probably won't happen.

I realise that drugs and dialysis and possible transplant will hopefully keep him alive for a good while yet, but I want him to have a good quality of life. It's been made to sound inevitable that he will die by the consultant a good twenty years sooner than would be expected.
My brain is currently whirling at a hundred miles an hour not sure what to do or say.
I thought we'd be together until a "natural" death at a ripe old age. The thought that may not happen has made me sadder than I thought possible.

Is there anyone else in this situation? Anyone with a more positive experience of PKD outcomes?

Sorry @Pipepans only just seen your post.

I had a relative who suffered from hereditary polycystic kidney disease.
He was fine until he was in his late 40's when he finally needed dialysis. He then had a transplant at age 53 which was very successful for almost 20 years until it finally failed and he had to revert back to dialysis.

He died a couple of years ago at age 83 which is a reasonably good age for most people.

With the right treatment - and hopefully a transplant - your DH could have many years of life ahead of him but totally understand your feelings at present. It is certainly a shock!

Wishing you both all the very best for the future!

Find a PKD group on Facebook. They will offer support and information.

Good luck to you both xx

Hi OP, sorry to hear about your DH. We have a Kidney Support Thread in General Health which might be helpful. I will post a link...

www.mumsnet.com/Talk/general_health/3964834-Rubbish-Kidneys-Support-Thread?msgid=104760971#104760971

Oh goodness thank you all so much. It's so helpful. I'm trying to just deal with each day as it comes and try and be positive until it gets to the stage that's not possible. I think if I contemplate the possibilities daily I'll drive myself loopy! We have yet to decide how much to tell the children, and of course we have the added concern they may inherit this disease too, so a lot to think about.

I suppose we have the luxury of time, and are able to plan, which many don't. He's being really brave, when I know he's frightened and angry he may not live the life he expected. He's just my most favourite person in the world and my total rock, and I can't imagine life without him around.

It's a relief to know there is hope out there so thank you.