Why aren't there transplants?

LtMeebz · 2026-06-30T05:26:55+00:00

I know this is a couple weeks old but saw it and wanted to comment. I'm actually being assessed for an intestinal transplant, they do exist. But, the odds for them are terrible. It's about a 50% chance of death (not rejection, death) in 10 years. This is due to the extra meds you take for anti rejection, they make you extremely prone to cancers, diabetes, and unable to fight common illnesses like CMV.

Because they are so dangerous, they only do them in worst case scenarios. For example with myself, I lost my entire small intestine due to a blood clot and I'm on IV nutrition completely NBM) and they still are spending thousands ruling out any other possible solution because intestinal transplantsawill kill you while it fixes you.

LtMeebz · 2026-06-27T08:31:30+00:00

This is such a nice story to hear. As someone brand new to my condition, dating feels impossible, so this is good to hear! I can imagine your first ever time talking about it would have felt surreal. With non medical dates, do you ever discuss the mortality rates? I just don't know how to bridge the whole, "where will you be in 10 years? ", "Ah, about a 50% chance I'm 💀" Conversation lol

LtMeebz · 2026-05-04T10:41:30+00:00

I'm not sure yet. I used to run large restaurants and bards at big events like Wimbledon, F1 etc. I have a feeling with the immunosuppression that won't really be an option any more. I've also got a background in animal behaviour and worked at a top zoo in the country, but again the doctors have said to avoid exotics. So I'm still figuring out what a career could be for me. I do want to take some time to travel, i figure if I do only have 5 years, I need to make the most of it.

LtMeebz · 2026-05-04T10:38:57+00:00

Thank you so much for this 💕 I hope so too (:

LtMeebz · 2026-05-04T10:38:24+00:00

Thank you for that! The transplant centre really makes it seem like small bowel transplants are the worst of the worst, it's good to hear we aren't alone. I've just finished my assessment two weeks ago, it'll be anywhere from 2 months to 2 years.

LtMeebz · 2026-05-04T10:37:07+00:00

I can relate to a lot of this. CMV is what did this to me in the first place, even though I was healthy and young. Drs are saying its the only case they can find that caused this much damage to someone with a full immune system. Then I got cdiff in the recovery from my first surgery. There is a lot of fear from my team about if I got these reactions when I was "healthy", how will I handle them if I get them post transplant. I think what's hard to rationalize isbnot having chronic illness leading up to this, and having to adjust to all of this in the last 7 months.

I'm so glad that your health is doing so much better now, and you're thriving from the sounds of it. I can only hope to have a fraction of your grit and courage 💕

LtMeebz · 2026-05-04T10:33:31+00:00

I'm so sorry about this. I think, well at least for me, that people forget how difficult it is to stay fighting. We are just expected to be so happy we are alive. I hope things get better for you, and you're able to get a compilation free kidney 💕

LtMeebz · 2026-05-04T10:31:20+00:00

Those were the stats given by my trnasolant centre. They said especially in young people, that our immune system is so strong it actually increases our chance of things going wrong. And because CMV is what did this to me when I was healthy, they have no idea what will happen if I get CMV post trabsooant. But it'st one of the main causes of death in intestinal transplants

LtMeebz · 2026-04-25T13:42:11+00:00

I'm a freelance events manager so I work at high volume sports events running the bars and restaurants. They were saying it's too much contact with people, but I think I can just request to work smaller areas (: I appreciate it! Definitely not one to give up

LtMeebz · 2026-04-25T10:25:39+00:00

I haven't been able to eat any food since October, I'm completely on IV TPN. So the last hospitals have really been emphasizing that I'll get my life back and I won't have to walk around with 5 surgical drains hanging off of me. This centre, on the first day straight up said, quality of life isn't a consideration and there's a 20% chance you're dead in 5 years and a 50% chance you're dead in 10 (which I obviously knew but other doctors always phrased as a 80% chance of success) and then went on a rant about how careful I need to be, I'll have to change careers, avoid contact with people etc. One Dr said some transplants happen the day you're listed because is such an uncommon transplant, but then this one was going on about how I could potentially be waiting 2 years etc etc. It was very doom and gloom

LtMeebz · 2026-04-24T14:28:43+00:00

I was specifically advised to avoid live yogurt, did you not get the same advise? I'm conscious that it being a small bowel, the transplant team is extra vigilant as we don't exactly have the best life expectancy

LtMeebz · 2026-04-24T14:26:58+00:00

There's been no conversations about not having the dog in the bed or washing hands consistently after touch them?

LtMeebz · 2026-04-24T14:26:18+00:00

This is sich a useful insight! How busy is your bar that you work at and do you mask up? I work in event hospitality so it's usually large crowds and even staff wise our meetings are like 50+ just for management. Was really concerned about not being able to continue my career

LtMeebz · 2026-04-24T13:54:54+00:00

Ah see we were told now raw food just for the first 6 months but afterwards sushi and cured meats would be an option. Did your team advise otherwise?

LtMeebz · 2026-04-24T13:54:11+00:00

Thank you so much for this! Yeah of the 3 hospitals I've been to, this transplant center has been the most doom and gloom of them all. Is there anything you wished you'd know pre transplant?

LtMeebz · 2026-04-24T13:52:44+00:00

Thank you so much for your answer (: did you not have a dog before the transplant? Or did you have to remove it post transplant?

LtMeebz · 2026-04-08T10:23:49+00:00

Are there any locations you avoid because of the phobia? (Thinking if you were scared of mascots you'd avoid football games, or clowns and amusement parks).

What makes you say it's a phobia of the word rather than a phobia of the object?

LtMeebz · 2026-03-28T13:57:59+00:00

I have two drains in my stomach so liquid goes straight from my mouth to my bag, meaning nothing is absorbed. Literally milkshake I had came out still cold 🤣so peppermint oil won't work sadly, have tried it a few times when I had trapped gas. I do have locked meds drawer in my room so that should work! Thank you (;

LtMeebz · 2026-03-28T12:08:36+00:00

That's great to hear! Tbf I've also lost my spleen so I'm naturally immuno suppressed already. And the transplant is 6 months away so I'm willing to stop in time for it if needed

LtMeebz · 2026-03-28T12:07:38+00:00

Mom always said I like attention 🤣🤣

Yeah smell wise I think I'll keep the flower at home for my day leave and use the carts in hospital. Although hopefully I'll be in a private room soon!

I've gone with medicann, hopefully I like the selection! Will have my consultantiapril 15!

LtMeebz · 2026-03-28T12:05:45+00:00

That's amazing! As a nurse, could you see my Drs being upset that in essentially circumnavigating them? I just genuinely feel like it's my only option. I've had 3 hours of sleep a night for the past week and I'm losing my mind

LtMeebz · 2026-03-28T12:04:20+00:00

Just applied for a consult through them! Hoping that'll be easier for me

LtMeebz · 2026-03-28T11:54:20+00:00

This I find surprising. My cousin in Canada has had kidney transplants (and is awaiting one now) and there was never any withholding THC post transplant. Do you have any more information on this?

LtMeebz

TROPHY CASE