PKD Charity for Autosomal Dominant PKD | HealthUnlocked

Hello all, I've started taking Tolvaptan (45/15) and I'm experiencing extreme muscle fatigue and brain fog. Does anyone else experience this? Any...

Sharing that I am hosting what I hope will be a great Zoom discussion tomorrow Jan. 23 featuring Robert Kolker ("Hidden Valley Road"), a New York Times...

What would be the normal kidney volume in [cc]? How can we know the progression of pkd with kidney volume? What volume shows the severe effects of pkdI was on...

Has anyone tried ketocitra one drug with BHB that the company is making large claims about

Hi everyone, I've just posted this on the Kidney disease page too so apologies if you're reading it twice! My 3 year old daughter had an ultrasound of her...

Hi, I'm Piotr from Poland. Please write how your blood creatinine increased after starting Tolvaptan treatment? I have been taking tolvaptan for less than...

Hi everyone. Recently been diagnosed with ADPKD. Just wondering if Tolvaptan is provided by the NHS. Thank you.

Hi my name is Rick I was diagnosed with adpkd on 5th jan 2022 I have never had any cases of pkd in my family before me and only discovered I had it while...

Hello. I’m new here. Just thought I would introduce myself. I have a daughter who has suspected PKD. You can read all about it in my profile. Just wondering...

Hello! I’m Naomi, 24 in London, diagnosed with PKD not long ago and trying to learn to live with it and how to advocate for myself. Glad to be here 😌

I will be 73yrs in January and I was diagnosed with PKD earlier this year although I have multiple cysts on my kidneys I have been told it is early stages and...

Hello all, God bless everyone on this sight. I just have a quick question. In late October 2019 during a routine CT I was told I had bilateral parapelvic...

Hi. I am 37 and diagnosed with ADPKD. Is there anyone here who got deroofing of cyst ?

Hello, I have a question. I’m 54 year old male about 2 years ago I had a routine scan test showed bilateral parapelvic cysts on both kidneys. It also showed 1...

I'm really sorry if I offend anyone by joining this community when I don't actually suffer the condition but my consultant has recommended speaking with PKD...

Hi. I'm recently diagnosed. Aplologies in advance for asking too many questions or covering old ground... In my first face-to-face meeting with my UK NHS...

Hi - I'm Mike. Pleased to meet you! Aged 60, born in Birmingham in the UK, now living on the Wirral. Diagnosed early 2021 with ADPKD. I have 3 kids, early to...

Hi all, so now my kids have grown up and have been tested for PKD . 3 of the 4 have inherited it from me. We have all been to see the nephrologist and apart...

Hello everyone. Hope everyone is well. I have a follow up question. I had a kidney gene panel done. More because one of my sons is starting a family it was...

Its been a while since I've been on here, since I have been taking Jynarque I have been feeling really good no pain and my kidney function is doing great!...

Hello I’m new to all this. I’m 54 yo man. No known family members have pkd. In August o 2019 I had a Ct scan that showed bi laterial parapelvic cysts and a 4...

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...

Hi Everyone Totally new on this page. I was just wondering if anyone stuffers with bad gout flare ups? I have a egfr of 13. It’s took a couple of years to...

Hey guys hope everyone is safe,now just a question about hyperinflated lungs do they have anything to do with my kidneys being very,very big or should I vory...

hello to every body .Feeling awful the last few months .as i have not being able to do my job properly. so annoying.One day i feel ok in the morning and then...

Hello I have PKD and I’m 60 I was diagnosed at 16 but in general great healthy though I have brain aneurysms aswell Today I have got my recent blood results...

Can BPH lead to elevated creatinine in PKD patients? If so, is a procedure to alleviate BPH recommended?

My blood test showed a spike in creatinine one hour after I played tennis. Anyone have a similar experience?

Just recovering from getting new Kidney, at second call-in. Was EGFR 7 so was very tired. Blood results improved dramatically and no pain from operation...

Is running bad for us? I have read that vigorous exercise can cause creatinine to spike which isnt good for damaged kidneys. I have started running since...