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Postby Bodhisattva75 » Sun Sep 02, 2018 2:10 pm

Hey All,

This is my first time on here, and after reading through the responses you all give, I think I'm in the right place :)

It's not for me, it's actually my 43 year old husband that has PKD turned 'moderate' CKD . Unfortunately, his Mum had it too (and later had a successful transplant) and his sister has PKD. My hubby is now at around 23% kidney function and on Tolvaptan. His CKD nurse at Birmingham Queen Elizabeth is absolutely unbelievable, we couldn't as for a more caring and helpful lady.

The reason I'm on here is that hubby has recently had 2 high readings for liver enzymes. One was shortly after losing his Dad in January - he had a really bad time and a couple of big blow outs. Luckily, after 3 months his readings neutralised. However, he's now back on the lowest dose and has just had 2 high readings so has had to come off them until results have normalised. We have no idea what might have triggered this. Any suggestions would be appreciated.

We're both a little panicky at the prospect of him having to stop the medication. I've found myself googling 'CKD' and, like many things on Google, you're bombarded with the most negative outcomes and stories. This is my reason for being here, I could do with some support and, just advice really I suppose.

Can anyone else relate to this?

I'd be interested to speak to anyone that has had dialysis and, possibly, a transplant to understand the process second hand.

Thanks, everyone. And I wish you all speedy recoveries :)
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Postby wagolynn » Mon Sep 03, 2018 1:57 pm

Try looking at the topics on this websites home page

This one tends be a little more technical, look at the 'Handbooks'

These are reliable sources.

With PKD, it is possible to have cyst on the liver, which can effect the function.

When you have had a look at the above, plus ask the medical team looking after his case, you will probably have some questions, post again and I am sure someone will have some answers.
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Postby Bodhisattva75 » Mon Sep 03, 2018 2:59 pm

Thanks so much for this, its much appreciated.

I'd love to hear personal experiences from anyone in the same boat. Can you recommend a better place to post?
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Postby AmandaClare » Tue Sep 04, 2018 12:05 am

Hi Bodhisattva

I hope hubby is able to restart the treatment and avoid end stage - I know little about PKD.

Nor am I the best person to share personal stories since I was at your husband's stage about 32 years ago - though that's good news in itself! But didn't want to read and run. I would advise not to frighten yourself with statistics about survival times on dialysis. They include people of all ages and co-morbities so don't tell an individual much at all.

I wish you both all the best. Many of us on here are proof that life goes on after end stage, albeit with a major added complication. Keep posting.

Amanda. X
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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Joined: Tue Sep 18, 2007 1:58 pm
Location: London


Postby wagolynn » Tue Sep 04, 2018 3:47 pm

Hi Bodhisattiva,

Some random thoughts;

Tolvaptan - I think, forces the kidneys to expel more water but maintains blood sodium levels, it also reduces the rate of growth of the cysts in some patients.
Many diuretics increase sodium excretion along with water but adding sodium is not a problem.
I think, it is recommended that Tolvaptan is prescribed for 30 days only and/or the liver function is closely monitored as it can cause liver damage. (I may be out of date on the liver damage)

PKD - See ... ase-adpkd/

CKD - (Chronic Kidney Disease) Usually referred to in stages 1 - 5 1 being mild, and 5 total failure.

PKD will progress to CKD but each patient is different so the rate of decline is unknown, and it can progress in burst but it will progress.
Some patients go through life with PKD without being troubled by it.

When the kidney function is around 10% the patient is put on dialysis, this is a holding measure until the patient can be transplanted.

Sorry, it looks like doom and gloom but it is not as bad as it sounds, and it better to be realistic rather than thinking it may go away.
Your husband will find it much better if he can understand the condition, and its treatment as it progresses rather than being a passive patient, well I do anyway...

I think, you will find it difficult to get many responses to your post but if you ask specific questions then you are likely to get some.
Whilst every patient is different there are many common factors, and practical problems.

Best wishes.
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