Re-Lung Transplant

[kimmy59]

Afternoon all.

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

[kimmy59]

That doesn't sound right, I meant the thought of a child losing their life for me is horrendous. xxx

[sassy59]

I knew what you meant kimmy and I do hope that something good comes from this referral. Go and see what is said. I do wish you well. Take care xxxxx

[kimmy59 in reply to sassy59]

Thanks yeah I will go, just not holding breathe. xxx

[sassy59]

No, don't hold your breath! Hope all goes well for you kimmy. Good luck anyway. xxx

[Hidden]

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 !

[Dedalus]

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

[kimmy59 in reply to Dedalus]

Thanks. I'm on Risedronate and VitaminD. Seems to have worked.

Kim xxx

[Dedalus in reply to kimmy59]

Thank you Kim - all very best wishes - stay positive xx

[notlocal]

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.

[kimmy59 in reply to notlocal]

Thank you.

I hope all goes well for you. It is very sad and frustrating, I'm feeling very negative at the moment.

Kim xxxx

[notlocal in reply to kimmy59]

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!

[onamission]

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

[kimmy59 in reply to onamission]

Thank you. I'm keeping everything crossed they put me on the list.

Kim xx

[helingmic]

Kim keep your hopes up. That's the first step. When do you see the people at the hospital. Let's wait for a good progress report. Mic

[kimmy59 in reply to helingmic]

Thanks. Don't know yet got to wait for an appointment.

Kim xxx

[rubyred777]

Good luck to you Kimmy

Maybe 8 yrs. ago my son had a liver transplant..Modern medicine is truly

amazing. We are lucky to live in this day

and age. Using a childs lungs seems odd. But, I guess not if you are the size

Of a child. Hang in there Kimmy. How

long have you had copd ?

Rubyxx 😊 😊

[kimmy59 in reply to rubyred777]

Thanks.

Diagnosed in 2012, but I was severe by then. Just don't think I will qualify.

Kim xx

[rubyred777]

Why do you say that Kimmy ?

😊😊

[kimmy59 in reply to rubyred777]

Because of my size, lung function and border line osteoporosis.

Kim xxx

[lindacolman14]

Hi Kimmy

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.

Good luck anyway.

[kimmy59 in reply to lindacolman14]

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.

Kim xxx

[lindacolman14 in reply to kimmy59]

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.

Easter soon, perhaps we should eat lots of eggs!

Best wishes

Linda

[kimmy59 in reply to lindacolman14]

We should. I do eat just never put weight on, don't forget powered milk in everything.

Kim xxxx