Experiences with

Autosomal recessive polycystic kidney disease (ARPKD)

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 investigating high blood pressure I’m 38 and bar the blood pressure have had no symptoms until now , I constantly have to p during the night and am

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 kidney cysts. Witch could be pkd. Probably pkd2 due to the fact I was 54 years old . I’ve had several follow up scans here’s the most recent Ultrasound

I am currently on pd home dialysis. I felt as if it had stopped working and my Dr recently confirmed this. I have severe lower calf edema. It’s red spotty, itchy and dry and very tight. I am starting the cycler on Monday. Has anyone else had manual exchanges stop giving them proper fluid removal?

I have done Carbo/Taxol, Avastin, Carbo/Caelyx, Rubrac a and now Anastrazole. I have a scan coming up, but lately can feel the cancer spreading and am resorting to pain killers. Can anyone who has had this many lines of chemo tell me what else was available for them to try, and also how successful it

Hi ckd friends, Do you have a family history of kidney disease that includes a parent, grandparent, Aunts and uncles etc with no explanation for the cause? Do you have a bland urinalysis (no blood and little to no protein), with near normal blood pressure and all your other labs are in line? So did

I am having Robotic Laparoscopic Nephrectomy on Monday. A mass was found on my left kidney and they will be removing the entire kidney. It’s been mentioned that surrounding tissues will also be removed and it leaves me concerned about the adrenal gland. I have messaged my surgeon questioning whether

My PSA increased from 0.19 to 0.3 in just 6 weeks. My MO is scheduling a PSMA pet to see if the cancer is localized or metastatic. I will most likely start ADT or ADT+. Recommendation are welcomed.

A few months ago 4 or more tumours were found in my husband's liver. Hes also fighting a staph infection that he has picked up in the hospital. He is in hospital now 8 weeks on iv antibiotics. He has had 2 goes of taxotere. Communication is very bad with his team. It is very hard to know if infectious

Good morning, everyone! I wonder if anyone else has had problems following a denosumab (Prolia) injection. I was first diagnosed with PMR in 2015, and at that point, was told to discontinue the alendronic acid that I had been on for many years because it had been discovered it was not the “wonder drug

I have been trying hard to research and know the issue with me but i can't really find an answer...i normally have good sex with my partner but recently am having pains when my dick is aroused....and most times it stops arising because of the pain. It seems like the pain is from the veins in the dick

l had UTI's all my life l'd been in and out of doctors surgerys so many different hospitals l my 1st child complained about the pain in my back l kept telling tge doctors that l was hurting so much not one doctor took me or my mum seriously when l said there must be something wrong "Apparently since

This title is absolutely my silliest by far. My kingdom is going to represent my body for the purpose of this post. I went to a follow up with the vascular surgeon last week. He said my fistula would be ready to use if needed in two weeks but that hopefully it would be more like 2 years until I need

Hi all I have recently finished 3 x Lu-177 and 3 x Docetaxel infusions whilst hormone sensitive. I have been on Degarelix since November so no idea what's doing what but but my PSA has fallen from 17.6 to 0.19. STAMPEDE type scans showed I would benefit from radiotherapy to the prostate which I can

Hi, I’m in a bit of a pickle. I’ve been urgently referred due to anemia and age (62). But I’ve previously had a terrible experience with colonoscopies. I had 2 agonising failed ones in 2018 and a CT colonoscopy. I also had a abdominal CT 4 months ago. I’m worried about my radiation dose from so many

My PTH (parathyroid hormone) turned out to be quite high: 167 after my second chemo. Has never before been tested. Not sure what to make of it. My MO doesn't know what to do, partly because calcium and potassium levels are still ok. My endo is out of the country and I was told he doesn't treat high

Ok met with Doc. She agreed the /triamterene Could have caused a false reading. My blood pressure has been 135/77 sometimes 144/78 I am not taking anything and keeping a long. So I have no diuretic but my ankles are really swelled this afternoon. Did I eat salt this afternoon , probably. I’m trying

partner diagnosed decompensated cirrhosis 22.12.21 - stopped drinking the same day. Albumin 18 at diagnosis, 24 at best since now dipped again to 22. How long did people's albumin take to recover - is it normally so slow to improve - in contrast bilirubin gone from 256 to 58 since Dec. He is having

I have been struggling forever with insomnia caused by taking opiods for RLS. Like many of you here it's worth it because the relief from RLS is so wonderful. I recently added Olanzapine 5mg at night for sleep. I know it's on the naughty list as it tends to increase RLS symptoms. I decided to go ahead

Hi, new member here. I had surgery on my liver last year, de-roofed a large cyst of which I have many! Polycystic kidney disease on kidneys and liver. (Cheers mum!). Blood test results all going the wrong way now, but not getting much info back from doctors or hospital. Gamma gt? Up from 200 in September

Lower back pain, one sided, is it kidney trouble? Undiagnosed and this is new symptom along with swollen ankle. Rheumy ordered ct scan for wednesday this week. Thanks in advance you lovely people you! :)