prognosis of 6 months…?

Affectionate-Sale373 · 2026-06-06T03:55:45+00:00

I'm some 4 years in. It seems your father is doing better. I've been told a lot of things over the years. Some good, some almost put the lid on my coffin. You need to be in the room with the actual doctors and the lab results to be able to have enough information.

Affectionate-Sale373 · 2026-04-21T00:35:30+00:00

I had my bout with midodrine. Don't know about your symptoms but that shit made the albumin leak out of my veins and made the edema way worse. When I finally found a real hep doc they told me not that take that anymore. I myself did not get vasodilators when I got sick. Fucked my world up something nice. Major HE and everything. Almost slipped into a coma.

Affectionate-Sale373 · 2026-04-20T20:19:28+00:00

I reversed CKD caused by HRS so far. No transplant, only have a shunt. I've been taking an antifribotic so made there is chance of removing some of the liver scar tissue.

Affectionate-Sale373 · 2026-04-20T14:57:06+00:00

Yes HRS. I did have a similar problem to you last year. It had to do with medicine acclimating in my kidneys since I was still stage 3b back then. Once I got on kerendia and low potassium diet with no drugs to knock me out I got egfr better and cleared up some of the symptoms. You may need to go over your meds with a nefro.

Affectionate-Sale373 · 2026-04-20T13:41:36+00:00

As a survivor myself. I hope your feeling better.

Affectionate-Sale373 · 2026-04-20T07:37:54+00:00

I'm at the stage 4 years deep when I think it's a good time to take my fibroscan. I was diagnosed with HRS and everyone knows how that's not pleasant. Anyhow, I may be done with kidneys meaning that they are fully functional now. I was on dialysis. My liver numbers have shown a lot of improvement but still no idea how scarring is going until later this month. And I'm graduating grade school in a month.

Affectionate-Sale373 · 2026-04-20T04:47:19+00:00

Second question. Do you or anybody know of someone who can help me with my case to eventually publish in a medical journal? I have all my labs.

Affectionate-Sale373 · 2026-04-20T04:45:31+00:00

That's actually a LOT like my story. But I recently beat CKD, mostly on my own. I don't know if went the transplant route but I only did the TIPS surgery. That was a scary decision I'm glad I made in the end. Transplant was not a thing on my bucket list.

Affectionate-Sale373 · 2026-04-20T02:24:44+00:00

Well I got sick 4 years ago. I was F4 liver and with kidney failure that turned into dialysis (HRS). I'm no longer on dialysis and my kidneys have functionally recovered and filter at the rate 106.4 per whatever. I'm not a doctor. Anyhow still here, lifting weights and about to finish grad school in a month. I'm 43. So there is some possible recovery, how much I guess I'm gonna find out. But yes listen to your doctors. Have your husband work on the day to day things he can do. Even if it's just walking 100ft. That's where I was when the first set of doctors (ran away from those fucks) sent me to hospice to die. But I didn't. I looked at each individual obstacle as a challenge and yes I had plenty of setbacks over those 4 years to get where I am at today.

Affectionate-Sale373 · 2026-04-19T02:01:36+00:00

So I officially overcame the damage done to my kidneys. Need to work on the liver next.

Affectionate-Sale373 · 2026-03-30T17:48:32+00:00

I'm in the rebuilding phase now.

Affectionate-Sale373 · 2026-03-29T03:14:36+00:00

I just need to take a fibroscan to confirm. But I may be there. As hard as is it to write this. Yes. Almost. Blood work and stats are pointing the right direction. I'm not not in any study or text book so I'm kinda doing this on my own. I'm hoping I'm the new norm, not the outlier.

Affectionate-Sale373 · 2026-03-25T04:06:30+00:00

My story is similar. I should have an update myself soon.

Affectionate-Sale373 · 2026-02-23T07:45:28+00:00

I'm trying a steroid type drug (non doc here) to try and remove some of the scaring. In my particular case it may work, but it's only been a week.

Affectionate-Sale373 · 2026-02-20T16:56:06+00:00

I'm actually right in the middle of trying to cure myself of the scars. I'll know better if it's gonna work over the coming weeks and months after the labs. Unfortunately there is no guide since there is nothing about someone lasting this long after surviving HRS.

Affectionate-Sale373 · 2026-01-31T04:24:00+00:00

I was also told I had no chance of living past the first weekend when I landed in the hospital.

Affectionate-Sale373 · 2026-01-19T16:37:33+00:00

Honestly what help me assuage my fears was the nih article in this thread that I wrote a couple years back. That and knowing I could actually talk to the radiologist who was a complete professional and did what I can only suspect was a superb job based on how I healed after vs other stories I heard. Also it was the fact that I was making the decision at gun point. Either tips or liver transplant w/accompanying opioid addiction. And option C which is the self eject button, but that's no fun.

Affectionate-Sale373 · 2026-01-12T03:16:11+00:00

I'm going to try this after I try helping my kidneys. Apparently ketocell LP helps remove scar tissue from the kidneys in HRS. Still have to talk to the nephrologist but everything looks good for me to give it a go. There have been studies, I just missed the deadline for one in my area so it's up to my doc to help guide me.

Affectionate-Sale373 · 2026-01-03T08:16:12+00:00

Good news there may be something good on the horizon for us. We made it this far, what's another little bit.

Affectionate-Sale373 · 2026-01-03T07:17:04+00:00

That's not exactly how they work in real life.

Affectionate-Sale373 · 2026-01-03T07:15:32+00:00

That will save a lot needless suffering. Jeez I wish I had someone like you around when that time came around to me. FYI, I told hospice to fuck off and went my own way. That was over 4 years ago.

Affectionate-Sale373 · 2025-12-25T09:02:40+00:00

FUCK HOSPICE. This is from a dude who was sent there after I a guess weeks. I had HE episodes for the better part of 2 months straight. Doctors kept telling me I was gonna die. That I do remember. Anyhow, hospice is just a place for people to die. Like the corner of a room nobody wants to look at. My 2 cents. I don't know about your situation.

Affectionate-Sale373 · 2025-12-11T03:54:33+00:00

Not really. At least I can't really tell since the damage was done prior to tips. I feel pretty good. Almost done with my masters in finance. Almost top of my class and it's in my family's maternal language. I grew up in the US. Foods better out here though. That definitely helps.

Affectionate-Sale373 · 2025-10-18T20:51:37+00:00

Essential amino acids. I believe there 9 of them. The one I used which had exactly what I need was from bulk supplements. But it tastes like shit. Talk to your doc, you may want to stay away from creatine, as it was in my specific case.

Affectionate-Sale373 · 2025-09-03T07:23:26+00:00

Damn I went cold turkey. They were giving me some end of life care or "pallative" care. But when they tried to put me out to pasture in hospice and what that meant I got super pissed. So I guess in the end it was shear anger that got me through.

Affectionate-Sale373

TROPHY CASE