New to PKD: I was diagnosed with PKD in... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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New to PKD

Lynx14
Lynx14

I was diagnosed with PKD in August 2020 following a CT scan after suffering weeks of fevers & unbearable headaches. I had a severe infection in my right kidney; burst abscess led to a near month long hospital stay, cyst drainage & weeks of antibiotics.

It all came as a huge shock; but I’m now recovered from my ‘episode’ & figuring out the best way to live with PKD. I’m making diet changes & drinking a lot more water, but I’m wondering if anyone has advice for the bad days. Today my right kidney has been so sore, I’ve felt nauseous & breathless and I’m not sure of the best way to manage it - does anyone have advice for the chronic pain? I’ve been fine for a few weeks until today. I did have a few drinks yesterday (the first time in a LONG time!) - I take it kidneys & alcohol are not friends?!

I’m glad I’ve found this forum - nice to read about others loving happy & healthy lives with PKD and I look forward to learning more.

5 Replies

Hi Lynx14,Sorry to hear about your recent "episode ".

It's been a few years since I had a infection yet I can remember the pain and fever well.

I've been lucky to have good health since.

My advice is yes avoid alcohol,

It can be tough but I found I didn't miss it after a while.

It is also easier to regulate your blood pressure ( which I assume you'll be taking tablets for)

When you don't drink.

A good renal team is the best thing to have .

You do right to look into a good diet and drink plenty of water.

I found daily moderate exercise helps, just walking is great if you can do it.

I can't advise you on pain meds other than do NOTtake ibuprofen.

Hope this is of some use to you.

Keep in close contact with your renal team is crucial.

Hello LynxYour diet will all depend on what stage your kidneys are at.

I found out I had pkd 5 years ago and luckily my kidneys are stage 1 meaning Egfr is 90 + yet I loads cysts on each kidney.

The advice I got from my renal team were to drink plenty water, and basically do as I like within moderation ofcourse. That even meant alcohol. Don you have any blood results?

Thank you for your replies. I had good kidney function during my hospital stay (approx 80+), but bloods 2 weeks post hospital were down to 57. The nephrologist thinks this drastic drop could be down to the antibiotics I was sent home with. Fingers crossed this is the case. I have repeat bloods booked for next week.Thankfully my blood pressure is normal for now, so no medication for that.

Is it normal to have ‘bad kidney days’? And if so, are they usually linked to bad diet/hydration days?

Susan_101
Susan_101Moderator

Hi sorry to hear of your diagnosis and also your recent episode. Please do join in the chatter on the PKD Charity UKs private Facebook Group - facebook.com/groups/pkdchar... you will find conversations regarding infection, cyst burst and most importantly a lot of support. The Charity has a fantastic website and also holds events for patients too please sign up to keep intouch. pkdcharity.org.uk/

Hi Lynx,

Sorry to hear about your diagnosis and the infection.

As others have said, drinking LOTS of water is very important, as is keeping a close eye on your blood pressure.

With regards to alcohol my nephro is Fine with it in moderation (but try to quit smoking if you are a smoker).

As for the pain, I personally rely on water bottles a lot. I have a long thin one I can wrap around my lower back and that helps a bit!

I hope this helps a bit.

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