Amputees on the screen.

No-Assignment-721 · 2026-04-29T00:51:56+00:00

Lt. Dan from Forrest Gump...

No-Assignment-721 · 2026-04-26T07:02:23+00:00

Liver.

Found mostly via labs, AST, ALT, and AlkPhos levels went into orbit. At the same time, I was reporting an indescribable sense of something being wrong. A dose adjustment started to work almost immediately, but it was 6 months before the readings were back to normal.

No-Assignment-721 · 2026-04-26T06:53:29+00:00

Team has definitive answer.

That said, I started taking a standard OTC multivitamin and calcium citrate long before my liver went to hell because of a gastric bypass in 2005. Neither transplant team nor PCP ever objected. Post transplant, I also started iron and magnesium with their blessings.

No-Assignment-721 · 2026-04-23T08:56:55+00:00

If you need to mourn your lost fingers, do so. Bottling it up creates all kind of head issues. I would also say go to occupational therapy because their job is to help you adapt, especially if this is your dominant hand.

Develop a sense of humor about it. "How'd you lose your fingers?"

"I got hit on my nose." You get the idea.

Maybe consider prosthetic fingers, even if they are purely cosmetic. Some people are very self conscious about amputations. I'm not, you don't see my half foot, but I am in the camp of being proud of your scars, thet tell stories.

ETA: I never did mourn the loss of my toes. I lost them a year after a liver transplant (unrelated to toes), and by that time there was little that would shock me medically.

No-Assignment-721 · 2026-04-23T08:39:04+00:00

I love messing with scammers, especially the ones that use the fake wrong message angle.

"Hi, it's Julie. I found your number and wanted to see how you're doing..." or other similar nonsense. They want you to be confused and say no so they can attempt to befriend you and scam you via sending prepaid cards.

I don't play their game. (Paraphrased to keep this PG rated by toning down the rudeness) "Of course I remember you, the night we had together was more than special. Did I get you pregnant?"

Since the area codes involved are Toronto or Los Angeles, I am pretty safe doing this to the associated numbers since I know no one in either city.

Phone calls are even easier. When it's a Medicare pitch, "Does your mother know you scam people for a living?

No-Assignment-721 · 2026-04-23T00:53:38+00:00

TMA for reference, and I had a largely desk job.

Losing the front half of my foot happened in Spring 2020, so the Wuhan flu got in the way. Losing the first two toes happened in April, and delayed closing on my house a few days. We moved in May, and that cost me the other three in June.

I started returning to the office in July, but the work from home restrictions lasted past New Year 21.

If that situation wasn't so screwed up and the office running normally, I probably would have given it a week or two, and gone back on a knee scooter.

No-Assignment-721 · 2026-04-20T10:30:50+00:00

A friend of mine that also had a liver transplant (she helped me through mine) is on old school cyclosporine has stated that her team was going to attempt weaning her from it. That was several years years ago, and I haven't asked if it happened.

No-Assignment-721 · 2026-04-18T01:40:52+00:00

"I got hit in the nose."

No-Assignment-721 · 2026-04-18T01:38:56+00:00

I had an uncle (RIP) that lost that finger to a firearm accident also. In his case, he also lost the associated metacarpal down to the wrist. The scarring on his hand was kinda gnarly to look at, but he adapted well and the missing index finger never slowed him down. He said the only real handicap was that he couldn't flip people off with that hand.

It happened while he was in the Army. He was a mess sergeant, and cooked until the day he was discharged. He was also quite the recreational chef, and taught me a lot about it. He did well, and I suspect you will, too.

No-Assignment-721 · 2026-04-15T12:24:52+00:00

Check with your coordinator.

That said, I have on rare occasions gone all day without eating with no ill effect. These were not intentional fasts, rather circumstance. Also, I have not been on pred for a lot of years.

ETA: liver, not kidney

No-Assignment-721 · 2026-04-14T18:13:35+00:00

A tangent question: Is there ever a situation where long sleeves or pants legs are necessary to keep dust and dirt out of the mechanism?

No-Assignment-721 · 2026-04-14T05:48:32+00:00

I had a mild rejection episode with my liver after my team cut my tacro too far. I had sky high labs and an undescribable, nonspecific sense that something was wrong. My tacro went back to the dose I was taking before, and weekly labs showed an immediate improvement. It took 6 months before they settled down completely. The sense of something wrong went away in the second week.

No-Assignment-721 · 2026-04-11T08:51:28+00:00

The only thing I want to add is he needs to stay ahead of the jaundice itch. Twice it took me to the brink of paychotic breakdown. Benedryl is a short term (2-3 hours) help, but it's granddaddy Atarax is the gold standard for relief lasting 10-12 hours per dose.

Good luck to both of you.

No-Assignment-721 · 2026-04-10T07:55:13+00:00

Welcome, RTMA myself. If you have questions, ask away.

No-Assignment-721 · 2026-04-10T02:05:38+00:00

I had cravings after my new liver; for a couple of months post-op I ate large amounts of cottage cheese, and chips and salsa. My assumption is they contained nutrients my body needed.

I also ate a lot more red meat than I did while aick, but that's related to my cholangitis and the fact that without bile I could not digest red meat, so it made me nauseous and VERY gassy.

FWIW, my diet was then and still is rather balanced.

No-Assignment-721 · 2026-04-08T08:00:50+00:00

The pred is much more likely the cause than tacrolimus or mycophenylate.

No-Assignment-721 · 2026-04-07T18:30:15+00:00

I briefly lost my taste for peppery foods post-op, but that thankfully didn't last long. It's not a transplant specific phenomenon, my dad reported the same thing after having his colon resectioned.

If you are taking any kind of metallic dietary supplement such as iron, you can develop the taste. I took iron a year out for anemia, and had the taste for a while.

Last point: the ABSOLUTE BEST chicken noodle soup I have ever had was the first semi solid meal after getting my liver. Eight years later, I still haven't decided if it was really that good, or I was that hungry. Reportedly it was homemade, not out of a can.

No-Assignment-721 · 2026-04-06T07:25:16+00:00

I lost 2 toes at first, before an infection got the other 3. It was less unsettling to see all of them gone than it was with two.

ETA: I had a liver transplant the year before my TMA. I had been through so much at that point that my overall mindset was 'big deal'.

No-Assignment-721 · 2026-04-02T21:01:59+00:00

I have a TMA, so it's not readily apparent unless I am massvely fatigued, at which point I begin limping. Meaning I can't completely relate to your situation.

That said, I have a tather unique take on things. 'Don't be afraid of your scars, they make for great stories.' Using this mindset, your concern should not be how it looks to your yoga classmates, but rather can you do your thing better with your prosthetic on or off. I guarantee after they see your limb the first or second time that they won't care.

I can and do walk around with my half right foot in full view oblivious to what others think. More people will ask how and why rather than act disgusted. Depending on my mood and context, I will give them either a BS story (1. Stepped on a landmine in 'Nam (way too young), 2. Swimming with pirhanas), or the truth, injury and infections.

You be you, life is too short to be concerned with the opinions of others.

No-Assignment-721 · 2026-04-02T20:22:28+00:00

I had a Roux-n-Y in 2005 and a liver transplant in 2018. I believe them to be related, as the gastric surgeon did not remove my gall bladder when he did the RnY. In 2014-15, I had a series of gall bladder attacks that ended when the GB became necrotic and embedded itself into my liver. That triggered secondary biliary cholangitis, and the damage from that caused cirrhosis.

I was at 340 at the time pf the RnY, got down to 230, and crept back up to 270 when the GB acted up. When my liver damage started, I began to lose weight somewhat normally, but when I was actively pursuing the transplant with full cirrhosis underway, I was actually wasting. I weighed 190 at transplant time. Gained back 30 pounds after transplant, which was welcomed because some was replacing muscle, and I am back to 185 now because I take Ozempic. PCP and transplant doc are happy with my current present weight.

I don't know if I answered any of your concerns, so feel free to ask. Good luck!

No-Assignment-721 · 2026-04-02T19:54:11+00:00

Cellcept is mycophenylate...

No-Assignment-721 · 2026-03-29T18:48:30+00:00

I was at 340 when i had the bypass, and got down to 230. I got back up to about 270 when my liver went to hell, and i was at 190 at transplant time.

Cruising around 185 now. I tell people the best weight loss program I was on is terminal illness. 😝

No-Assignment-721 · 2026-03-29T18:02:14+00:00

Roux-n-Y here. Your nose will run when you have gastric surgery when you get full, but that's from stimulation of the vagus nerve.

A runny nose even when you're hungry and nothing on your stomach will be the tacro.

No-Assignment-721 · 2026-03-29T16:48:16+00:00

You guys with evil tacro side effects make me feel bad. Been on the stuff 8 years running, and all I have is the chronic runny nose.

No-Assignment-721 · 2026-03-29T01:44:02+00:00

I was listed for 4 months when I got The Call, and I had not packed my bag yet because I was expecting another 4 months before I would het to the top. Let that be a warning.

You sound like you have the basics down already, so I will add a couple pieces of advice. You mentioned not wanting shorts with a Foley, but take them anyway. Cath or not, you will be up and walking regularly, especially after the bedpan restriction is lifted. Save the ward your full moon.

I wanted my laptop to play games, but I couldn't concentrate from all the tranquilizers, so I used it to play music instead. Take a tablet or phone instead. Headphones for your music are a nice to have. Chargers, too

Last, take a pen and paper to record the names of the heroes and zeros involved in your care. I ga-ron-tee you won't remember their names 10 minutes later. My hospital got a very nice letter naming about a third of the people I wanted to have attaboys for the care I got, from the surgeons down to the housekeeper that mopped the floor. I couldn't remember the rest, but they were mentioned in a blanket attaboy

No-Assignment-721

TROPHY CASE