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I've had a double lung transplant.

36 replies

Justalittlebitmore · 28/07/2023 14:00

I had my transplant nearly 4 years ago now. It was a physical and emotional rollercoaster but I will be eternally grateful to my donor and get family.

Ask me anything!

OP posts:
lakapass · 28/07/2023 14:23

Why did you need one?

Justalittlebitmore · 28/07/2023 20:17

Cystic Fibrosis. My lungs had been declining for years but the last two were brutal. I was on oxygen 24/7 and eventually a non-invasive ventilator because my lungs were too weak to even breath on their own. My lung function was at 12% at the end.

OP posts:
LongTermLurker · 28/07/2023 20:23

Wow! How long was the operation? How healthy du your lungs feel now? Eg can you go for a run?

What a thing to go through. Really hope you're thriving.

boboshmobo · 28/07/2023 20:24

Will you have a 'normal ' life expectancy now ?

neverwakeasleepingbaby · 28/07/2023 20:25

Hope you're feeling much better since the transplant. It sounds like you've been through a lot!
How old were you when you had the transplant?

Justalittlebitmore · 28/07/2023 20:28

Thank you!

I think the op was around 9/10 hours. They didn't wake me up until day 2.

I feel amazing now, I've never known what it was like to have normal lungs and now I do! I can run, swim, do anything a 'normal' person can.

Most importantly, I'm still alive for my child. He is what kept me going in the darkest times.

OP posts:
Greenfishy · 28/07/2023 20:29

Donโ€™t have a question, just wanted to say ๐Ÿ’ช๐Ÿผ๐Ÿ’ช๐Ÿผ๐Ÿ’ช๐Ÿผ

Babamamananarama · 28/07/2023 20:30

Oh wow.

What was the recovery like?
(I've had a stem cell transplant but imagine it's a very very different recovery process).

strongcupofTea · 28/07/2023 20:30

That's amazing op in so please for you and your family. Have you heard of landing crew on YouTube? The 16 year old son just had a double lung transplant.

Greenfishy · 28/07/2023 20:30

To you!! Sorry posted too soon!!

Justalittlebitmore · 28/07/2023 20:32

@boboshmobo
It's unlikely I will have a normal life expectancy. Rejection usually happens at some point although there are people still alive 20/30 years after their transplant.

Also, the anti rejection drugs are immunosuppressants and can mean you are more likely to catch bugs and other illnesses. There is also a much higher risk of certain cancers eg skin cancer. Plus the drugs are really rough on kidneys, so some people end up needing a kidney transplant a few years later.

I try not to dwell on it too much and just focus on enjoying life.

OP posts:
SisterWedge · 28/07/2023 20:33

Amazing I'm so pleased for you and your family. The donors family should be very proud.

Enjoy your new lungs OP X

Justalittlebitmore · 28/07/2023 20:34

@Greenfishy thanks ๐Ÿ˜Š

OP posts:
Justalittlebitmore · 28/07/2023 20:35

@neverwakeasleepingbaby
Thank you. I was 38

OP posts:
ThatFraggle · 28/07/2023 20:37

Do you know anything about the donor? This is a bit woo, but after the transplant did you find any changes to personality?
Like the made up story of the recipient who suddenly changed career to be a baker or something and years later discovered the donor was a pastry chef.

Justalittlebitmore · 28/07/2023 20:40

@Babamamananarama
The first week was really tough. I felt worse actually, like a had a really tight belt around my chest but logically I could tell I was doing well (no oxygen) etc. It wasn't like woke up feeling like a new woman. I had a spinal block in for the first 10 days, although they had me up walking within 4 days with 4 big chest trains , catheter in etc. I was quite a sight. I have never felt so vulnerable and totally reliant on other people in my life, I couldn't do anything for myself at first.

The hospital was amazing and I was home after 3 weeks. It would have been a week earlier but I had a small chest infection that needed treating first.

OP posts:
Justalittlebitmore · 28/07/2023 20:43

@strongcupofTea
No, I haven't of them. I will go and look them up ๐Ÿ‘

OP posts:
PerspiringElizabeth · 28/07/2023 20:45

Were you scared of the surgery? I guess the alternative is scarier? Just c annoy imagine the ordeal!! Incredible.

AnotherCountryMummy · 28/07/2023 20:46

I don't have a question either, but this is fucking incredible! What a warrior you are ๐Ÿ’ฅ

HollyandJingles · 28/07/2023 20:47

My DD has CF, its such a horrible relentless illness. I think this will be in her future at some point too, hopefully not for a while yet, shes 15 at the moment.
I don't have a question because I try not to think about it, I just wanted to say you sound amazing and its so great to hear something positive. I truly hope you have many many years ahead of you!

Justalittlebitmore · 28/07/2023 20:47

@ThatFraggle
I know very little about her, except her age and sex. She was over 10 years younger than me. I'm not usually emotional but that really hit me really hard.

That and I can't imagine what the family went through and how they could make the decision to donate whilst going through so much unimaginable pain. It's totally overwhelming.

OP posts:
Justalittlebitmore · 28/07/2023 20:49

No, I didn't notice anything different about myself afterwards. I suddenly loved crisps and spicy food but I think that's down to the drugs, which can change the way you taste food.

OP posts:
Justalittlebitmore · 28/07/2023 20:54

@PerspiringElizabeth
I wasn't scared actually. I was ready for the next battle or nothingness. I was at peace with everything before they put me under. I'd had a long time to think about my life and I was felt like I had had a good run. I knew that despite my will to live, that my lungs weren't going to last more than another month and this was my only hope.

My only worry was DS but I knew I had done my best and would continue to be strong for him if I woke up after the op.

OP posts:
PTSDBarbiegirl · 28/07/2023 20:55

Wow, what an incredible story! It's very inspiring to read the way you approach life. I just want to ask if you live in the moment, having had such an incredible new chance to live differently it must be fantastic. Impressive human story, enjoy OP thanks for sharing.

GraysPapaya · 28/07/2023 20:58

Nothing to ask, but this story has made my evening, so good to see some wonderful news in the world and so pleased youโ€™ve been given a chance to lead a normal life.
Iโ€™m an organ donor and hope I can help someone in this way one day.

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