PKD Charity for Autosomal Dominant PKD

Hundreds of cysts & enlarged kidney

Hi, I'm new on here. I had an ultrasound around 4 years ago for a hiatus hernia. Sonographer was concerned as there were a 'number of cysts' on my left kidney. I went back to the consultant I was seeing re. hiatus hernia. He didn't seem too concerned, but said he'd refer me on to a nephrologists (I was seeing him through BUPA). GP did bloods & urine tests and all was good. Nothing came from the nephrologists, so I ignored it & didn't think much of it. A couple of months ago I started having pains that were similar to gallbladder or gallstone symptoms, so my GP sent me for an ultrasound. There were no gallbladder problems, but my left kidney now has 'hundreds and hundreds of cysts and is more than twice the normal size'. There are also a few cysts on the right one. Now been referred again to a consultant, but there's a 9 month waiting list. I intend going private again once I can afford the £100 excess for BUPA. Should I be concerned that the kidney has become so enlarged and should I go without other things to get the £100 and see a consultant asap? I get some loin pain, which I thought was the H.H. My BP is slightly raised, I get breathless and have headaches,but no urinary symptoms. Nobody else in my family have had PKD diagnosed. My mum had a kidney stone once, but had loads of other health issues which involved scanning her abdomen. No mention of kidney cysts though. I'm 50 years old. Thanks

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Hello

Sorry to hear about your cysts....

I have pkd and sometimes the cysts burst causing acute pain......

Didn't know I had it until I was about 50....

Pkd is not always hereditary.....

It's hard to say if you should pay or wait.....perhaps your gp could advise on this .....

Hoping it works out for you.....

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Thanks. I've got to 50 without being aware that I have it, so I'm trying not to worry. It does help explain some symptoms I'd put down to being perimenopausal though.

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Yes

Some of the symptoms are similar...

Once I found out I'd got it, I scoured the internet for ways to slow down the progress. Davina is an American website but has some good ideas for kidney friendly diets.. ....this healthunlocked site is also good for sharing ideas with fellow sufferers.. ...

It was 3 years after I found out that I started dialysis.. ...they check your blood for egfr reading...... mine was 26 when I first found out and took 3 years to get to 7, needing dialysis.....but everyone's different.....

Hope this helps....

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Why there is no cure for this? My husband is getting to end stage of kidney failure. He is 46. He would not be that bad but two years ago he had a car accident and rupture of some cysts. This caused a rapid decline in kidney function. Otherwise, he would probably have a better outcome. He didn't know he had kidney cysts before the accident. He got a severe TBI and several traumas in his abdomen, among kidney cyst rupture. In this case, there is no cure at all. I feel so sorry, he is so unlucky.

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Sorry to hear about your husbands situation.....yes, it can feel quite hopeless at times.....there is no cure but there are definitely things that can be done to make life better and help us to last longer......

When egfr is decreasing there are symptoms but most can be managed with the help of our doctors and advice from fellow kidney patients....

I was on dialysis for a year..... it made me feel much better despite a few bad days along the way.......I was able to live an almost normal life and enjoy most of the things I used to when I was well.....

One of my huge cysted kidneys had several cysts burst and was causing problems so they took it out.....I felt much lighter for it.....as it weighed

3 1/2 kg!

In January I was lucky enough to have a transplant and am getting better day by day.....hoping for a fun summer once my anaemia has gone......

I know everyone's different but we are all on a similar journey.... we all get low at times and wonder why this has happened to us and get frustrated when things go wrong......

But there ARE things we can do to make our lives the best they can be....and quite often feel 'normal' again...

Hope it works out for your husband.....

My very best wishes......

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Hi, I was 60 when I got my diagnosis and I have no symptoms other than 'too many cysts to count' throughout both kidneys and liver. My kidneys are, remarkably of near normal size. I think given you have one very enlarged kidney you should be seen asap. Its disgraceful that you have been told to wait for 9 months. In your position I would argue the toss with the GP and get him/her to make you an urgent referral. You don't even have an actual diagnosis and you need to see a nephrologist to talk it through.

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Sorry, also meant to say my EGFR is normal, never had proteinuria and never had high blood pressure, but the pkd diagnosis was made due to there being cysts on both kidneys. Hope you get a nephrology appointment soon

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Before my dad was diagnosed with PKD, he assumed he had kidney stones because of the pain around his kidneys. I am surprised you have to wait 9 months to be honest to see a consultant. 3-4 months is understandable but definately not 9 months. Speak to your GP and tell them the pain is unbearable, or perhaps they could refer you to a nearby city where the waiting list is not as long?! You have to push your case, i know the NHS is under alot of pressure, go private but trust me dont wait 9 months. PKD is a progressive disease, You could manage the pain and slow the growth of cyst but there is no cure.

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