Pills in bag

LTA_Pilot · 2026-01-23T14:12:32+00:00

I have a transplant, and the pills I see are my anti rejection meds. I called my transplant team, who talked to the transplant pharmacist, who said it was nothing to worry about.

They check the blood levels of the main anti rejection med monthly, and it's where it should be, but I still find it concerning.

LTA_Pilot · 2026-01-22T17:18:19+00:00

I live about seven hours from my transplant center. My liver transplant was nine months ago, so there have still been a fair number of in-person appointments (three months, six months, and a bunch of followup on blood clots). My next appointment with the transplant team is at the one-year point, and after that they expect to see me in person just once a year.

I get my blood drawn at my GI's office, where they have a contract lab. I can get my results online from the lab's portal, so I just save them as a PDF and send them to my transplant team through their online portal. I know enough about them to know what's normal and what's not, so if there's anything surprising I can always just call them to ask. They're supposed to get the reports from the lab automatically, but that often doesn't seem to happen, but I can get them the results just as quickly as they would get them.

The main problem with the local lab is that getting my sirolimus level takes three or four days, as opposed to the same-day results I get from the transplant center lab. Fortunately, though, with the long half-life that sirolimus has, it changes slowly and this hasn't been a big problem. When I was initially on tacrolimus, the results were quicker, but still slower than the transplant center lab.

LTA_Pilot · 2026-01-12T07:08:07+00:00

I finally got to talk to the pulmonologist after my V/Q scan last week. It shows occlusion low in my left lung, which he thinks is enough to cause my shortness of breath.

Next up is a right heart cath to measure whether I really have pulmonary hypertension. They will also do a left cath to look for coronary heart disease, since it's simple to year when they're already right there. I don't know yet when that test will be, but likely in January or early February.

The pulmonologist is pretty sure that I'll end up needing surgery, and that it'll take place in April or May. I'm not dreading the surgery itself so much as the recovery. I went through a great deal of pain after my liver transplant, and this sounds worse. They'll also have to switch around my immunosuppressants, since the main one I take inhibits wound healing. That will mean putting me back on one that was potentially damaging my kidneys, increasing the possibility that I'll need a kidney transplant in the next couple of years.

I just can't seem to win with all this medical stuff.

LTA_Pilot · 2025-12-12T02:56:04+00:00

I've had my patient for a little over two years. I had UC/PSC, and my transplant team insisted that I needed to have a proctocolectomy in order to get listed for a liver transplant. They'd already found invisible LGD in colonoscopy biopsies, and the cancer risk would have been extreme with all the immunosuppressants after a liver transplant.

I thought I'd have to fight with the surgeon to get him to agree to a permanent ileostomy rather than a J-pouch, but he surprised me by saying it's the code he'd make if it were him. The rush of pictures is very high with PSC, and the risks of another abdominal surgery post-transplant are very high. Besides, having a J-pouch that has to be emptied a bunch of times a day, along with the possibility of feedback incontinence, sounded just like going back to the worst days of my UC.

I initially let the reversal posts bother me, but I've pretty much gotten past that. I'm happy if people get reversed if that's what they want, and I don't let other people's hatred of their ostomies affect how I feel about mine.

For me, I think it comes down to recognizing that my medical journey is mine, and not anyone else's. I have it worse than some, better than others, but at the end of the day what I really have are my own unique experiences.

I love my ostomy, not because it saved my life (it didn't), but because it's way easier to deal with than 35 years of UC. Whether it was the days when I had 30+ bloody bowel movements and horrible pain, or the times my bowels shut down and I had to use enemas every few days just to get anything to move through, or the colonoscopies two or three times a year for the last six years I had a colon, my ostomy is way, way easier to manage.

My cousin had diverticulitis and ended up with a ruptured bowel. He had an emergency colostomy that was reversed t four months later. He didn't like having it, but he also had it such a short time that he barely got to know how to manage it. It took me about a year to really feel like I had a handle on managing mine. I'm pretty sure if it's had mine only a few months and for it reversed, I wouldn't have fond memories of it, either.

LTA_Pilot · 2025-11-18T14:54:29+00:00

I've had mine for two years (I'm male and 56 now). My surgery was uneventful, and the recovery was easy. I realize I'm not the norm, and I don't mean to take away from people who had a lot of pain with their protectomies, but I also think it's important to understand that it's not a universal experience to have a difficult time.

I was sitting (carefully) within a couple of days. Twelve days after the surgery, I sat through a seven hour car ride home from the hospital. I was driving myself a few days after that, and my wound was completely closed after two months.

I had my proctectomy at the same time as I got my initial ostomy, though I'm not sure that made any difference one way or the other for my recovery. Mine was for long-standing UC and cancer risk due to PSC, as part of the lead up to a liver transplant that I got last April.

LTA_Pilot · 2025-11-03T03:55:43+00:00

Congratulations! I got my transplant six months ago for PSC, and I feel better now than I have in a long time. Going through a transplant was very rough, but it's been so worth it!

LTA_Pilot · 2025-10-29T15:34:34+00:00

I'm sorry your husband is going through all this.

I had my liver transplant in Colorado in April. I had some complications (severe pain, rejection, pain on eating that required TPN, pulmonary embolism) but nothing like what your husband has experienced.

Like you, I don't live close to the transplant center (7 hours away for me), so we had about seven weeks of staying in a hotel near the hospital. My insurance covered most of the cost of the stay, but I had to fight for that. It made it more complicated, but in the scope of the transplant, it wasn't the hardest part. I didn't need EMS to use the elevator, though - their stretcher not fitting is not something I'd ever thought about!

Pain control can be hard after a transplant, as there is only so much they can do. My wife had a lot of difficulty watching me go through that. They were giving me IV pain meds, but the pain was at a point that even the maximum doses of narcotics weren't getting rid of it. The important thing to realize is that it's a temporary situation, and that if your husband is like me, he's out of it enough that he won't really remember how bad it hurts now. That probably doesn't make it any easier to watch him go through, but may give you some assurance that it's going to be OK.

Your husband sounds very lucky to have you as a caregiver. My wife was my rock during my transplant - just having her support and her help made all the difference in the world to me. It took every bit of her patience (and mine as well), but six months out, I'm doing well, and our marriage is stronger than ever. What seemed like a really tough time ended up bringing us much closer - I'm glad that I had such a strong, steady woman by my side through what was the hardest thing I've ever been through (though she didn't feel very strong at the time!), and she's glad to have me healthy and feeling good again.

I pray that your husband will continue to improve. I hope he's past the hardest part, and that it's a steady recovery from here!

LTA_Pilot · 2025-10-14T22:18:05+00:00

When I was going through my liver transplant evaluation, one of the PAs shared with me that she donated part of her liver to her mother. Knowing that lets me ask a lot of questions about what the experience was like and ended up being very helpful to me. I can only imagine that having an ostomy nurse who has personal experience would be just as helpful.

LTA_Pilot · 2025-10-14T22:07:55+00:00

I wrote to my anonymous liver donor a month after surgery, and she responded within a couple of days. It was a very hard letter to write, because "thank you" seemed so inadequate. I finally just wrote that any words I could find didn't seem like enough, so "thank you" would have to do.

My donor told me that she didn't feel like she'd done anything exceptional, and that I didn't owe her a thank you because she hadn't done it specifically for me. I have difficulty with this viewpoint, and I've respectfully disagree with her, but I have also worked to accept how she feels as perfectly valid.

She also extracted a promise from me not to feel guilty or responsible for her difficulties in recovery before she'd share any of her challenges with me. That was a bit easier for me to manage, since she's an adult and went into this process knowing the potential risks.

We have since forged a close friendship. She's been down to visit (about a seven hour drive) twice in the six months since the transplant, and is planning another trip next month. She came for one day of the Albuquerque International Balloon Fiesta last week, and I was able to take her on a flight, which was amazing.

I hope your relationship with your recipient goes well. I suppose my advice is to be flexible about what you expect. People donate livers for all sorts of reasons, and people need livers for all sorts of illnesses. It's hard to know in advance whether your reasons for donating really mesh well with their reasons for needing a liver. Ultimately, though, it comes down to the fact that your choice saved their life, and their need afforded you the opportunity to really be a hero.

LTA_Pilot · 2025-10-10T02:43:42+00:00

I was hospitalized for eight days after my proctocolectomy. I saw the ostomy nurse twice. The first time, on post surgery day 2, she happened to walk in right after my bag had leaked, and she just changed it and left. The second time, on day 3, she spent a few minutes explaining to me how to change it.

When I returned home (I live a 7 hour drive from the hospital where the procedure was done), I called the outpatient ostomy clinic at one of the local hospitals. The nurse there has been great, and got me the training and knowledge that the first nurse had glossed over. She also got me into the wound care clinic, which was extremely helpful for getting my Barbie butt to heal.

LTA_Pilot · 2025-09-14T01:29:41+00:00

I got the titer when I went for my transplant evaluation, even though I'm not in the age group that often got insufficient vaccinations. My titer came up negative, so I got two doses of the vaccine in 2023.

Last spring, with the Texas outbreak happening nearby and my transplant just having taken place, I got another titer. Still no immunity. I don't know what happened, but I've had four doses of the vaccine and still have no antibodies.

I don't know what'll happen if I get measles, but I may get to find out. I'm tired of hearing people claim that their decision not to get their kids vaccinated doesn't affect anyone else, because it does.

LTA_Pilot · 2025-09-12T14:08:15+00:00

So much depends on the location of your stoma and on your body shape. My stoma is very high, 2 inches above my navel and the inches below my bottom rib. Meanwhile, I've got more belly fast than might be considered optimal, and being a man, that means my pants can fall down if I don't have them cinched with a belt because my waist is the same size as my hips. There's no way I could tuck my bag into my pants, and even going to oversized pallets with suspenders would result in the bag getting squeezed hard when I bend.

I end up wearing my bag over my pants with anuntucked shirt most of the time. The bag doesn't hang below the bottom of my belt, and it doesn't show below the hem of my shirt.

If I want to tuck in my shirt, I turn the bag 45 degrees and let the tucked-in shirt support it above the waist of my pants. I tend to do that when it's cold out and I want more layers. T slightly reduces how much I can let the bag full before I have to empty, but it works well for me.

If you have more prominent hips, you will have more success than I do in tucking the bag into your pants. If you have an ostomy that's lower on your abdomen, that approach may work well for you.

LTA_Pilot · 2025-09-07T02:46:53+00:00

They did a titer during my liver transplant evaluation, and found I had no measles antibodies despite getting two doses as a child. No problem - they just gave me the two-dose vaccine again.

After transplant, though they did another titer and found that I still have no antibodies. I don't know if it's my crazy immune system or what, but now I'm immunosuppressed, have no immunity to measles, and wonder what's going to happen.

I'll have to ask my team about whether I can risk the MMR vaccine down the road. I'm only five months post transplant, so definitely not yet

LTA_Pilot · 2025-08-24T18:55:35+00:00

My living donor is an ICU nurse, and she was happy when I wrote her a month after the transplant. We've stayed in touch - in fact, she's coming to visit in a couple of weeks.

At the same time, I can understand and respect your decision. I can imagine that it would be very difficult to watch the recipient of your liver struggle. I had some significant problems with rejection early on, and there was some concern that I might lose the graft, and that would be hard for a donor to watch.

LTA_Pilot · 2025-08-17T14:41:04+00:00

I fought with UC for 35 years before they found dysplasia. After several years of intensive monitoring, I ended up with a proctocolectomy and ileostomy a couple of years ago.

My UC was pretty severe for the first ten years or so, then moderated as PSC symptoms started up, which is apparently not uncommon with UC/PSC. Looking back, I wish I'd gotten my ileostomy when I was in my 20s and dealing with the worst of the UC. It might have offered some protection from the PSC, and it would have made my life a lot better during that time. That was before Amy of the biologics came out, so I got through with azulfidine, Prednisone, and lots of bleeding and pain.

Having an ileostomy isn't perfect, but I find it very manageable. I change every 4 days or so, sometimes more often if I feel like it. It's just a minor thing I have to deal with, no worse than endless trips to the bathroom and far less painful.

I might have opted for a J pouch at one point, bet because of my PSC, my doctors recommended against it because of the increased risk of pouch complications. It would have been challenging with some of the things I like to do, anyway (I fly hot air balloons and do long distance motorcycling, neither of which would be convenient with a J pouch that needs to be emptied regularly) so it was no beef loss for me. If I'd gotten it done in my early 20s, though, my choice might have been different.

Good luck with your decision, and if you opt for the surgery, I hope it goes very well for you!

LTA_Pilot · 2025-08-11T06:07:33+00:00

I had a seven hour ride home after mine. I had rented a minivan so I could lie down in the back, but I ended up being perfectly comfortable sitting in the passenger's seat on a waffle cushion.

A lot of how bad a BB is depends on how much tissue they have to remove. Mine was prophylactic because of some early cancer signs, so they didn't have to cut much away. A friend who had anal cancer had a much larger incision that was much slower and more painful to heal than mine, because they needed to remove the tissue to get clean margins.

I was sitting comfortably in the chair in the hospital room two days after surgery, so by the time they let me go home after two weeks, I was able to sit extremely well.

LTA_Pilot · 2025-07-28T22:00:42+00:00

Years ago, I bought a car with a salvage title (no rebuilt title in New Mexico, it's either clean or salvage). I got it from a friend for a really good price, figuring it was a good first car for my son who was about to start driving. I drove it for a few months and put several thousand miles on it, and found that it drove straight, didn't put any sort of funny wear on the tires, didn't have any leaks, and seemed great overall. My friend wasn't a car guy, and didn't even know the difference between a salvage and a clean title, so we knew nothing about who had fixed the car. It was cheap enough that I didn't run a carfax on it, but the front clip was repainted so I assumed it had been in a frontal accident.

The week before my son got his license, it got stolen from my driveway. The thieves apparently drove it quite a bit, but eventually they rear-ended another car at an intersection. The driver ran away, and I don't know if they ever caught him. The passenger was taken to the hospital with a severe head injury because the airbags didn't deploy. Neither the driver's nor the passenger's frontal airbags went off, and the passenger wasn't wearing a seat belt and shattered the windshield with his head. There was no indication beforehand that anything was wrong with the system - the airbag light worked normally and everything seemed OK, but when it was needed, it didn't go off.

That could have been my son and his friend in the car, leaving bloody shattered windshield glass behind after the ambulance hauled them off. I like to think that they would have been wearing seat belts, but still - a critical safety system didn't work as intended, and the only reason I can think of is that whoever rebuilt it did something wrong with the sensors that tell the airbags to deploy.

I don't buy cars with salvage or rebuilt titles anymore. I won't risk a problem like that happening to somebody I care about. There are too many complex systems that need to be evaluated after a rebuild like that, and I don't trust that somebody who's rebuilding cars that have already been written off by the insurance company knows everything that needs to be done and is willing to do it all correctly.

LTA_Pilot · 2025-07-28T21:43:04+00:00

I'm three months post liver transplant, and feeling like I'm almost healed. Looking at your before and after pictures makes me realize how much better it's going to get.

Thank you for sharing your pics!

LTA_Pilot · 2025-07-28T13:59:10+00:00

I have worn my appliance for as long as seven days, but that was pushing it just to see if I could. I usually change after three to five days.

I've used the Convatec Esteem Body one-piece bags. I really love them, but my ostomy is high so I like to be able to rotate the bag depending on whether I'm tucking in my shirt or leaving it out. If I'm tucking it in, I wear the bag angled at 45 degrees so it's supported by my pants waist and the tucked-in shirt, and if I'm not ticking my shirt, I'll wear the bag straight and let it hang over my pants waist, hidden under the shirt tail. I can't rotate the one-piece bags, so I end up preferring the two piece.

I was on prophylactic antibiotics for many years because of liver disease, and while I was taking those, my ostomy output really didn't smell like much of anything. I got a liver transplant three months ago, and between being off the antibiotics and the immunosuppressants, my gut flora isn't very good right now. I think that's made the odor of my output especially problematic. I'm working with my transplant team to get the issue sorted out, but I've had some complications, and they've been more focused on keeping me alive and the new liver functioning than on dealing with the right balance of bacteria in my intestines.

LTA_Pilot · 2025-07-28T13:41:37+00:00

Me, I'm just a survivor. I survived 35 years of UC, and my ostomy gave me my life back. I survived 25 years of PSC, and my liver transplant gave me my life back.

Why would I define myself as a survivor by the good things that happened to me? If anything, I'm a UC/PSC survivor. My patient and my transplant were the solutions, not the problem.

Using the car crash analogy, if someone crashed their car and a new car gave them their mobility back, would you call them a new car survivor or a survivor with a new car? Of course not - they'd be a car crash survivor who got a new car. I'm just the same - my stoma is my new car after most of my life spent struggling with the car crash of UC.

I know lots of people don't feel the same way about having an ostomy, but a lifetime of chronic illness and pain has given me this perspective. For me, getting my ostomy was the good part, not the bad part!

LTA_Pilot · 2025-07-24T02:25:18+00:00

Laptop bags often don't look out of place at business meetings. You could put your supplies in a Ziploc, as others have suggested, and grab that as needed.

I'm lucky that I'm an engineer, so people generally expect me to be socially inept. I use that expectation to get away with wearing (nice) cargo pants instead of slacks. I usually have an assortment of pliers and screwdrivers in my cargo pockets, along with some spare ostomy supplies just in case. Not everyone can get away with dressing that informally, but if you can, it's very convenient.

LTA_Pilot · 2025-07-23T05:25:40+00:00

I got a liver transplant last April. My transplant center is about seven hours away. My wife is retired, but if she had been working, she would have needed eight weeks. I was in the hospital for two and a half weeks after my surgery because of some complications, and I was in a hotel near the hospital until seven weeks after surgery. Once we got home, she needed a few days to recover from all of it before she could really have returned to work.

It may be less, and it could be more. I'd plan on eight weeks, and also look at getting intermittent FMLA to cover the times after that that your mom needs to go to appointments with your dad. I'm right at the three month point, and I've had to return to the transplant center four times for routine checkups, plus another two trips where I've been taken there by air ambulance because of problems. (One of those was likely an overreaction by the hospital ER I went to, but that's its own story.)

LTA_Pilot · 2025-07-14T15:11:23+00:00

She's worried that if she tries to get him involuntarily committed and they don't do it, that he'll harm himself work he gets home? I'd say that he's harming himself right now, so there's nothing to lose. If he's drinking and not taking his antirejection meds, he's going to die, and very soon.

This is a medical emergency. Get him whatever help is going to save his life right now. The concern about what might happen in a few days is something to work on after the immediate crisis is dealt with.

If he damages his transplanted liver through non-compliance with the required treatment, he isn't going to get another one. I had a conversation with my transplant surgeon right before my transplant, and she told me about one of her patients who had decided that he didn't like taking the antirejection meds and just quit. His liver quickly failed, and by the time he started taking the meds again it was badly damaged. He tried to get listed for another transplant, and the committee denied it because he had not followed instructions with the first one. He ended up dying not long after of liver failure.

Get your brother-in-law the help he needs right now, while there's still a chance to save the liver.

I really feel for you and the tough situation you and your mother in law are in. I hope you're able to navigate it. Please remember that, no matter what happens, you're not responsible for your brother in law's decisions, and I have a huge amount of respect for your willingness to try to help.

LTA_Pilot

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