My consultant decided today to refer me for a lung transplant assessment. There are 3 main things they look for.
1. Weight and BMI, I am and have always been very tiny never above 7st my entire life.
2. Bone density, mine is border line although after a year of treatment my bone doctor was very happy my scan showed a marked improvement.
3. Lung function they like it between 18 - 30 mine is 19. Begs the question why did my other consultant not refer me before when it was 23, her words I wasn't ill enough.
Not to mention that because of my size they would look to using a child's lungs making the my chances even slimmer. (which in its self a really horrible thought)
And the anti rejection drugs they use can suppress your appetite.
So all in all I don't really understand why he's referring me, I would say my chances are non existent at best.
Kim xxx
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kimmy59
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No, don't hold your breath! Hope all goes well for you kimmy. Good luck anyway. xxx
Seems like there are never any easy or straightforward solutions for people with lung disease. I suppose all you can do is continue with the process and see what transpires. Good luck !
You just never know - as Argana says, jut wait and see and be positive Kimmy (by the way what was the therapy for the bone density?). All best wishes x
Hi Kimmy, thanks for the info. I too have just been referred but have heard nothing so far. Like you I am small (but not so small, 9.5 stone and 5' 6"). I have LVRS surgery coming up also this year so reckon they will see how that goes before proceeding with tx. The whole area of transplants is fraught with sadness, it's inescapable.
It's hard to stay positive in this condition plus the world's also in a pretty negative condition, I think it's safe to say. But you need to keep that part of you that keeps bobbing to the surface alive. Keep the breath!
Kim I'm sorry being on a transplant list is good in the fact you have a chance of new lungs and lead a normal life if the is such a thing, the other fact is every time the phone goes you will jump out of your skin.
It is very sad someone has to die you would think we would have the technology to replace lungs hart and kidneys.
I wish you all the best and hope something come up soon
I am on the waiting list at Papworth Hospital for 1 lung transplant. I too am petite, 4'9" and weighing in at 6st 5lbs. I have lost about one and half stone due to medication and my condition burns off the calories. I have been told if I go down to 38kg I will be taken off the list as I will be too frail. So I am trying to pile the pounds on. It is very difficult, with a poor appetite. Eating is tiring. I need a small lung but have been told it is possible to trim one to size. You have to be a certain weight to qualify for a childrens lung, I can't remember what it was.
Thank you so much for your reply, 6st 5lbs is exactly my normal weight. I'm going to contact the dietician on Monday to ask him to draw up an diet plan to gain weight, I'll also start taking my Ensure everyday again, cheese on everything and powered milk. I really hope you can get your weight back up I know what a struggle it can be, been fighting it forever.
I have a follow up at Papworth tomorrow, these appointments are about every 4 weeks so I expect they will be nagging me again about my weight. As you say, it is a struggle. I also have an appointment on Tuesday at my local hospital with a nutritionist so hopefully they can come up with a plan.
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