Something that really helped me I would ... - Early CKD Support

Early CKD Support

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Something that really helped me I would like to share....

Mgt8 profile image
Mgt8
3 Replies

Having polycystic kidney disease stage 4, I am often browsing the Internet for information which will help me with the numerous questions I have about my illness.

Many of these sites are quite medical in nature and often, that is just what I need.

Sometimes though, I need to hear it from the side of someone going through the same thing as me. I want to know what it feels like to have a fistula fitted, what the side effects to dialysis can be, what its like to live on a kidney diet and I want to understand how I can cope with everything that is inevitably ahead for me.

That is why this forum has been and continues to be so useful.

A few weeks ago I also came across this web page:

mylifeasapincushion.blogspo...

....it is one man's experiences of living with polycystic kidney disease. Upon reading it, I just had to buy his book. It is from a publisher that prints the book to order. As you can imagine, it has a select audience but I found it well worth waiting for.

Michael tells it like it is but uses humor to make it a really good read. I've only put the book down long enough to write this post as it might just be what many people on this forum might like to read too.

It's called 'Tell me if this hurts' and its by Mike Sullivan. (ISBN 978-1-291-068662-7)

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Mgt8
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HiveMind profile image
HiveMind

Really funny, interesting and informative. Thanks for posting Mgt8! :-)

starstationearth profile image
starstationearth

I have been through PKD and renal failure and now have one kidney,which is a four year old transplant. Ask away!

Mgt8 profile image
Mgt8 in reply tostarstationearth

Hi starstationearth, Thanks for your message. Glad to hear your transplant is going well.

I'm pkd egfr 13 and kidneys are 26 and 31cm although they don't stop me getting around.

I'm interested to know at what stage doctors are prompted to remove a kidney.

Would welcome your thoughts....M

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