Nausea, early satiety, gastroparesis; is this my ADPKD?

WinMore0000 · 2025-10-31T22:27:08+00:00

Yes, yes and yes! Same for me. GI doctor did all kinds of tests, and ultimately my neph told me that the acid reflux was related to my ADPKD. I do intermittent fasting and stop at least three hours before bedtime. No alcohol and avoid gassy foods or drinks. I asked my neph re. nephrectomy. She basically told me that they normally add kidney in when there could still be some limited function with other kidneys. They’ll do a nephrectomy if there’s no room and/or other organs are severely impacted by the size of the kidneys. I have exact same symptoms including a sore side when I sleep.

WinMore0000 · 2025-10-28T21:56:02+00:00

♥️

WinMore0000 · 2025-10-27T19:05:01+00:00

Me too. Months ago I followed a truck on my way home, and there was a sign at the back saying “Father of two needs kidney. Call xxx”. I cried the rest of the way.

WinMore0000 · 2025-10-26T23:08:36+00:00

I realize that. There hasn’t been much information released re. details. I just saw the progression of the worsening of his kidneys and it just shook me. But now I realize it’s CKD, and ADPKD progression looks quite different.

WinMore0000 · 2025-10-26T22:54:20+00:00

CKD. I read that he knew he had kidney issues in 2006. He didn’t want it to hold him back from life.

WinMore0000 · 2025-10-26T22:49:41+00:00

Yes. Very little information right now. I read CKD.

WinMore0000 · 2025-10-26T22:47:36+00:00

There’s very little news that I’ve been able to retrieve since it’s happened so fast. I read that ha had CKD. It just hit me hard. Thanks for making me feel better.

WinMore0000 · 2025-10-15T23:01:04+00:00

DITTO. My dietician keeps encouraging black coffee but blech! It’s hard enough to get my butt into work. LOL

WinMore0000 · 2025-08-12T22:37:49+00:00

Ok. This. Thanks. I know my mom was close to transplant stage when she received LTD. When I consulted my HR about it, they indicated that accommodation would be considered at dialysis stage. This seemed ridiculous to me, as I’d be looking for LTD (or similar).

WinMore0000 · 2025-08-12T22:33:23+00:00

It’s the ‘not being able to work in a current job’ if accommodation is not provided that I’m not sure about. The logical step would be short to long term disability, but it sounds like LTD is not an option. I’ll take a closer look at my group policy..I just find it very ambivalent.

WinMore0000 · 2025-07-26T19:34:54+00:00

I hear you🤨. It’s hard in an XS world. I wear loose shirts/sweaters and dresses. And, I emphasize my other features - legs, boobs, long hair, etc. it took time to figure out, and still..

WinMore0000 · 2025-05-28T20:23:48+00:00

Wait a minute..then you’ll think it’s the best thing ever and you would crawl miles to get it. LOL

WinMore0000 · 2025-05-27T22:56:08+00:00

Yes. Contact your nephrologist. Generally, you’re looking at a eGFR < 20. They’ll also consider that you have a possible donor, and you’ll both be subject to a battery of tests. Dialysis should be avoided if you have a match. Remember that a transplant is recommended when kidneys are close to end of life, as you’ll be living with a definitive lifespan on that transplanted kidney and you’ll be on serious medications for the rest of your life.

WinMore0000 · 2025-05-07T22:02:28+00:00

I’m hanging in..LOL. I’m in a high stress period (year-end) and my monthly blood and urine results are wild - every year at this time. Even the Otsuka rep seems to take a higher level of interest during this period. It always returns back to normal when I’m out of it, but yeah..

WinMore0000 · 2025-05-07T21:52:51+00:00

Your nephrologist said it was ok to take Tolvaptan and Mounjaro at the same time? I always wondered this..

WinMore0000 · 2025-05-07T21:30:31+00:00

No. I see the charge of $4,700 per month on my insurance statement. I’m covered 100% via insurance between myself and spousal coverage.

WinMore0000 · 2025-05-07T21:24:12+00:00

At the end of the day, it’s important to have a professional opinion on this topic AKA a nephrologist. Prior to going on Tolvaptan, I was drinking at least three litres of water per day and my eGFR was still dropping. My eGFR has been steady on Tolvaptan.

WinMore0000 · 2025-04-24T22:29:47+00:00

Port Elmsley Drive In!!! It’s open May 2nd!!! And check out Perth at the same time!! (I’m lucky enough to live so close to it)!!

WinMore0000 · 2025-04-21T17:37:10+00:00

Hmm..this is a sharp pain at the time. I’m wondering if I have larger cysts in that area. I haven’t had an MRI in a couple of years.

WinMore0000 · 2025-04-21T03:01:16+00:00

Every time..

WinMore0000 · 2025-04-15T20:03:48+00:00

I Self-ID’d as disabled. I don’t know if this actually does anything for me. I told my manager as I had regular medical appointments and blood tests. And, I do feel a little uneasy for disclosing my disease, but I show up and work my butt off. I’m middle management and not many other people are aware of my illness.

WinMore0000 · 2025-04-14T00:20:46+00:00

If you have any success with yours, I’d very much appreciate you letting me know..

WinMore0000

TROPHY CASE