UPDATE pg 2! If you know someone who has had a transplant...

You are supposed to be smoke and alcohol free before they put you on a transplant list for 18 months (from a friend that had a kidney and pancreas transplant - ended up with hepatitis which killed him, but that's another story) so yes, I would be upset if someone were abusing their body after a transplant when the transplanted organs could have gone to someone who actually gave a shit about their health.

Good luck to you.  As I mentioned, the early diagnoses is a BIG plus.  As for the over-sharing on the Internet, I couldn't agree with you more.  I almost did not answer you because of that.  But figured if there was anything I  could help you with  juggling all the mess in your head, I should. Enjoy yourself until then.  You have (hopefully) a  l o n g  time to figure things out.  Easier said, but relax, take it all in, and figure it out as you go.

You seem like a balanced, considerate, thoughtful person- from your OP and update. I wish you many years of good health, with or without the surgery. And a few cookies and vacations.

i don't have any personal experience with transplant recipients

but ink's quote above it exactly what i thought of when i read your questions

she was also blasted for considering another pregnancy

the difference is - you are concerned about thee things..she wasn't

people are going to fudge - either our loud or behind your back

do what YOU feel is right - you can't control how others will react to it

i will tell you how i feel about fundraisers in general
if you do have one - DO NOT go out and buy a new camper - don't brag about the concerts you bought tickets for
(obviously this happened in our town and it was VERY disappointing)

gina

I guess I'm not really sure why you're worried about this stuff?

I don't know how to answer really. I think firstly, you need to live your life after transplant. I don't think that means sitting on a beach tanning with coconut oil or drinking until you pass out, but if you get mildly burnt because you forgot your hat once - well things happen. I'm pretty good with sun protection but I know a lot of people who aren't post transplant. I have a drink on a special occasion but limit it to 1 or 2. I know people after transplant that party on the weekend all the time. People need to make their own choices and realise it might bite you in the ass later on and I'll probably judge if that person was being reckless. Smoking after a lung transplant (which I've had) - yep, I would judge that for sure. Ultimately, it means you won't be getting another one if it all goes pear shaped. I think if you smoke after another type of transplant, well, see above. You're playing a statistics game that you'll lose. I have judged a few people who go out and partake in risky behaviour time and time again but it's not really any of my business and I'm not their doctor. Everyone makes choices. If you (general you!) know you're going to abuse your organ, just leave it for someone else who wants it.

Eating healthy? Do you mean following the diet post transplant or just in general? If you're talking generally, I don't judge people for what they eat. I don't go out of my way to eat only super healthy foods beyond my diet restrictions and my diabetes. I have raised my eyebrows in the past when I know someone shouldn't be eating those deli meats or undercooked steak (and I'll say something if I think they don't know better), but other than that they make their own choices. I try to follow the diet carefully in terms of items that are low bacteria because listeria kills and I don't want it to infect me. I have a friend in similar circumstances who is treated with minimal medication due to an extremely close match. It's not such a big issue for him and he can eat more freely. So I guess as with all things, you should follow what your team want you to do. They have guidelines because that's what works and keeps people alive.

For what it's worth, the medical team do try and evaluate whether you'll follow your regime or not (medication, lifestyle, etc). If they don't think you will, they can decline to transplant you. At least here in Australia. I know of people who have not been re-transplanted after doing something stupid like not taking medication as directed until they started to reject. I also know of people who have been denied a transplant until they clean up their act and stop the smoking/partying. Unfortunately for her, by the time she was able to show the team she had changed her situation/lifestyle she was very ill. She got the call when she was on life support and died in the ambulance on the way to get her new lungs. It was very sad - she was 25. All that to say, they really like rule followers in the transplant world.

I don't feel watched at all, but I try and do what I'm supposed to. I appreciate it when someone asks me about something because they are concerned. Usually that's just someone at work asking if I've had my medication (because they didn't notice me do it). I don't think people are judging me at all and it never crossed my mind. If they are, I know I do the best I can and do what is asked of me by my medical team.

I can't answer to the fundraising as mine was covered by our health system.

Every organ has different rules about eligibility and post transplant regimes and "rules". There are some common ones but also some more specific issues that relate only to that organ, so talk with your doctor.

ETA: Ten years is a long time to not go anywhere or enjoy the life you are trying to preserve.

Gilly.

I also worked with someone who had a liver transplant. I think it was from taking a medication..She was fine one day in the hospital and dying the next..when she woke up she had a new liver.
She celebrates the birthday of her new liver -- I forget what she named "him" she said it came from a man.. And her family and her would have a party celebrating it.
I think that's fantastic.
She would drink every once in awhile. She regularly saw her drs, took her rejection meds. Etc.
But I really love how celebrated later.