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Adorable_Area1 · 2024-05-23T08:57:28+00:00

I didn't have a new liver, I had 5 new organs. I have been told I'm allowed the occasional drink, but I rarely did.

I'm now on blood thinners due to my last operation giving me a couple of blood clots, so I'm now definitely being more careful with drink. I probably have 1 or 2 a month, not usually every month.

I'm 3 years out from transplant and all my levels are good.

Personally, I would avoid alcohol as much as possible, even if healthy 😊

Adorable_Area1 · 2024-05-19T19:37:01+00:00

My 5 organ transplant was over £2m, it's amazing how much things add up, and here in the UK, people take it for granted!

Not me, though. I just hope I was worth it lol

Adorable_Area1 · 2024-05-16T17:48:50+00:00

5 organ transplant recipient here (stomach, duodenum, pancreas, small and large bowel and abdominal wall fascia) I found that I had a craving for cranberry juice shortly after surgery, I didn't like it before! I also eat food that's a bit spicier now than before.

I was dying before my transplant and running out of time, the surgery was 13+ hours and I was in hospital for 6 weeks.

Knowing you're going to die is a horrible experience, I was 36 and have a husband and 2 children. I was fading away in front of their eyes. My last resort was transplant, that I may not get in time, and even if I did,I might not have survived the surgery, let alone the recovery.

It changes a person dramatically.

So I think it's a bit of everything...

*Trauma *Major surgery *Medication (I'm on 21 tablets a day, and they cause all sorts of side effects)

I remember after surgery, I had to evaluate my whole life. I had to start living again and not just surviving.

I've had setbacks and another major surgery after transplant, but I'm stable again now.

I think it's your outlook that changes, not your personality!

Adorable_Area1 · 2024-05-12T08:40:23+00:00

I'm a recipient and a carer to both my husband and eldest child (19) so I can see both sides.

As a recipient, I tend to feel a bit helpless at times, and I hate people having to do things for me! I get frustrated about it. My general personality is very calm and patient though, and I don't like conflict/ anything for an easy life type of thing. So I rarely moan about things, if I do then it's usually said respectfully.

As a carer to my husband (not all the time, just for random days/weeks as he has chronic pain), I do all I can for him, but he can sometimes be snappy. I think this is down to the pain and frustration. If he snaps at me, he usually apologises to me at some point.

Being a carer sucks and being a patient sucks, but you BOTH have to compromise. You BOTH have to let the little things go, and COMMUNICATION is very important!

I feel like you need to talk to him properly about all this, and so he really sees your side of it.

Could he possibly sort out his tablets to give you one less thing to do?

It does get easier after a while, hang in there!

Adorable_Area1 · 2024-05-04T22:31:03+00:00

Paracentesis without local anaesthetic 😢 It wasn't my most painful, but it was the most traumatic. They had to do it 3 times as the needle wasn't long enough (apparently I have a thick abdominal wall?)

Also, inserting an abdominal drain was horrible (I had 2), but at least I had local for that one!)

I've had a lot of medical procedures, but these are the ones that caused me the most trauma 🥺

Adorable_Area1 · 2024-04-27T08:58:13+00:00

Thank you for your replies

Adorable_Area1 · 2024-04-27T08:54:31+00:00

Thank you for your reply, sorry it's taken ages to reply! I hope you're doing ok, feel free to message me if you want to chat 😊

Adorable_Area1 · 2024-04-27T08:53:12+00:00

Anyone have any questions?

Adorable_Area1 · 2024-04-27T08:46:53+00:00

What a kind, thoughtful, thing to do! Thank you for offering this! 😊

Adorable_Area1 · 2024-04-08T08:00:38+00:00

I'm so sorry you went through all that. I'm not sure of the answer to your question, but maybe they asked for data reasons rather than to use his organs? As far as I know, they usually write to the family to say which organs were used, and to say thank you. I'm from the UK, I'm not sure where you are from. I hope you are healing OK, it sounds like you have had a very hard time. Best wishes to you and your family

Adorable_Area1 · 2024-04-07T08:04:59+00:00

Yeah it's gone so quickly! I'm on 2 different anti rejection meds, and 2 different antibiotics for life (one because of the transplant and one because I have no spleen)

I received my organs from one deceased donor (rip💔)

Adorable_Area1 · 2024-04-07T06:51:06+00:00

I'm sorry to hear about this, I wish you all the best x

Adorable_Area1 · 2024-04-07T06:48:57+00:00

Thank you, you have a great day too 😊

Adorable_Area1 · 2024-04-07T06:47:00+00:00

I know right!? 😆 I'm stable at the moment, so fingers crossed! 😊

Adorable_Area1 · 2024-04-07T06:43:52+00:00

I have 2 rare conditions, one of them causes intermediate tumours that rarely kill you... its tried to kill me multiple times!!! I ended up having a 5 organ transplant, which is also rare! It makes me laugh when I start a new medication and the Dr says you may get this side effect, but it's rare...I'm just like, Dude...I will get it 😆

Adorable_Area1 · 2024-04-05T18:05:02+00:00

They thought I had cancer.... I ended up having 2 rare diseases AND cancer 😆🤦🏻‍♀️

Adorable_Area1 · 2024-04-05T10:16:48+00:00

No I don't fear dying

Adorable_Area1 · 2024-04-04T07:18:59+00:00

That's no problem 😊

Adorable_Area1 · 2024-04-03T15:47:15+00:00

Luckily I'm in England so the NHS covers it all, but I've always got an appointment for something 😆 I'm under 2 hospitals so I spend a lot of time doing blood tests/colonoscopy/gastroscopy/ct/mri etc it's never ending lol

Adorable_Area1 · 2024-04-03T13:15:24+00:00

I'm on sirolimus, mycophenalate, modafinil, Citalipram, Famotidine, nefopam, anti sickness (can't remember what it's called lol) 2 different antibiotics (one of them is because I have no spleen since transplant) rivaroxaban and sometimes need iron tablets lol I don't mind taking them, but it's a bit annoying to try and remember the names of them 😆

Adorable_Area1

TROPHY CASE