Small frame

[skylas]

What's the shortest and longest anyone as waited for double lungs x n with a small height n frame x

[Dons-2]

Hello, I was 5ft 3 and 7 stone and I was told I might have to wait 3-4 years because of my small size and blood group.

I ended up waiting for 1 year and 9 months. But towards the end my left lung collapsed and wouldn’t stay up so I was put on the urgent list and then received my lungs within a week.

Are you on the list? How long have you been told you might have to wait?

[Hidden in reply to Dons-2]

What a remarkable result I am so pleased for you. Are you thriving now? How long ago was this? 😊

[Dons-2 in reply to Hidden]

Thanks

It was in November last year. It was a slow and hard recovery but I’m doing really well now. I’m up to 70% lung capacity (24% pre transplant) and enjoying taking my new dog for long walks and doing lots of yoga. The best thing is being able to wake up in the morning and do stuff without hours of coughing first oh and not having to drag my oxygen machine around everywhere with me! Hope you’re doing well x

[Hidden in reply to Dons-2]

Thank you for your reply, it is so good to hear of stories like yours. For my age I am doing remarkably well thank you. My old lungs will have to see me out now and to be fair they have served me well until comparatively recently.🙂x

[skylas in reply to Dons-2]

Hi I've only bn on the list since thurs 5th dec so probably got a bit of a wait to go x how u doing now x

[Hidden in reply to skylas]

On the other hand it could be tomorrow. 🙂

[skylas in reply to Hidden]

U just never no do u xxxxx

[Kcn3 in reply to Dons-2]

Hi my daughter has been told discussions will start re lung transplant. She has ppfe., as well as they think organising pneumonia,. Predisoline doesnt seem to have helped. Her Broncoscopy was postponed in march and was due next week but now cancelled.

She received a letter Saturday stating that her bmi needs to be 17. Pre steroids it was 14 and on steroids 15.8

She is 5'1" and was around 5.5 stone

During her leukaemia treatment she had numerous pancreatitis attacks and is now unable to absorb nutrients properly.

So I cant see she'll ever get to a bmi of 17.

Can I ask how old you are?

My daughter is 24.

[Dons-2 in reply to Kcn3]

Hello, I’m really sorry to hear about your daughter. It sounds like she’s been through a lot already. I’m 44 and have had lung issues since I was 16.

It does sound like your daughter is very underweight. I understand how hard it is to put on weight when unwell though.

See my previous post about how I tried to keep my weight up. I found it really helped counting calories and setting myself goals.

Best of luck to you both xx

[skylas in reply to Dons-2]

Sorry only just seen this. I was on list 90 days .now I'm 13 post n doin ok sd a few complications but ok now so far x how r u doin x

[Dons-2 in reply to skylas]

Glad to hear you got your call! Good luck with the recovery. I had lots of complications (mainly kidney problems) but had done lots of research so nothing unexpected. It was hard but all well worth it in the end! Thinking of you

[Cazaliza]

Hi my mum was in it for over 2 years and is under 5 ft and under 7 stone. Shes off the list at the moment as not fit/well enough. Hoping she will get some weight back on and stop getting infections and exasperation’s to get strength back up🤞

[Dons-2 in reply to Cazaliza]

Hello,

Sorry to hear about your mum - I hope she gets stronger. I know how difficult it is to put weight on when you’re feeling unwell and don’t have an appetite. I was told that if I went below 7 stone I would be taken off the list so I was eating 3,000 calories a day - but still not putting on weight.

I found that counting calories with MyFitnessPal app really helped. I also used to make smoothies with Calogen, Ensure, fruit and full fat milk/ice cream that were over 1,000 calories! Then tried to also eat 3 meals a day and puddings.

Good luck to your mum - I hope it all works out for her in the end xx

[skylas in reply to Cazaliza]

Aw your poor mum as she try them build up drinks they dint work for me but every ones different n at the moment I weight 9 stones from 7 n half I fink cause of all the high doses of steroids I'm always on x

[skylas in reply to Cazaliza]

I've only just seen this .how is u mum now is she back on the list. I came off the list a few times cause bn unwell. But was on it 90 days now I'm 13 weeks post x

[Cazaliza in reply to skylas]

Hi she didn’t go back on actually as she didn’t get her weight back up. Glad your weight is up, hopefully it won’t be long until you get the call xx

[skylas in reply to Cazaliza]

I got my call I ad double lung transplant 13 weeks ago .ad a few complications but doin ok now x hope u and u mum r doin ok x

[Cazaliza in reply to skylas]

Oh I didn’t realise. That’s so good. I’m so pleased for you. My mum passed away at the beginning of march unfortunately. She just couldn’t get her weight up enough to go back on the list. She was on it for 2 years though x

[Hacienda in reply to Cazaliza]

So Sorry for your Loss Hun, My Condolences to you & Your family. I too was on the List for 3 Years, they couldn't find a Match so No Calls, the waiting for that Call was Causing me too much Anxiety. I have plodded along , Good days, Bad days. Now I have Palliative care. But, I am keeping Positive as best I can. Wishing you a Lovely Weekend. Much Love. C. XXX

[Cazaliza in reply to Hacienda]

Thank you so much. She was a very strong and determined lady, an inspiration just like yourself. I wish she had palliative care really but she didn’t want it. I like the sound of all of your treatments, they will be very beneficial to you I’m sure xxx

[skylas in reply to Cazaliza]

Aw I'm so sorry to ere this . How u copeing xxxx

[Cazaliza in reply to skylas]

Not too bad actually. Miss her terribly but I’m glad I got to spend a lot of time with her and was with her in hospital xx

[skylas in reply to Cazaliza]

Aw she will always b with u xxxx take care xxxx