Monday, 23 February 2009

Transplant In The USA

The end of January I went for my 6 monthly check up at Harefield. I was supposed to go back in August. But That was cancelled, so then it was re arranged for September, then I couldnt go to that either. So was re arranged again for sometime after, and guess what, I couldn't go again!!! This wasn't making me feel great about myself. As I had so many questions to ask, about different options I could choose ie. USA Transplant, and also I had heard on the grape vine that someone else who is as small as me, had a different proceedure where they cut the lungs down to size. And I wanted to learn more about this.

Well. . . . . . . . Due to my very long admission, I decided to email my favourite co-ordinator and ask questions.

The reply was out of this world. She told me that they have employed a new surgeon for this technique (shaving) and it would take off in the not to distant future. _This gave me hope! Again another friend of mine had lost their fight to CF.

I then approached my team on ward round and they were shocked that I knew, but said they were not going to tell me about this until it was set in stone. But them knowing about it too and being told it from Harefield gave me enough hope to carry on fighting!

It was still sometime that I was able to get out of hospital for more than a few days and get on the phone to harefield for that appointment that I so desperately wanted.

I was discahrged end of dec, and hoped I would stay away from hospital long enough to keep my appointment and thankfully I WAS!!!!!!!!!

I met Martin Carby and he informed me to stay and see the surgeon as it would be good for her to get a good look at me to see if I physically looked well enough for this proceedure, and they are doing 2 more others too. 1. Ex VIVO, and then there is 2. LVRS and then 3. Lung Lobar.

Here are links to these I think.

^^^^sorry about the long address I dont know how to make it shorter;
Ex vivo (is where possibly a poor set of lungs are not working properly they can place them in the dome thing, and flush out bad toxins and possibly give them antibiotics (as they use a synthetic blood) that allows this, and hopefully lungs that may have been disguarded as they were no good to use, by using the ex vivo they could make them better and would then be used - which would increase the donor rates) this is 100% sucsessful.

I dont know a link to the "shaving" - but basically they get a larger pair of lungs and staple them so they can be shaved to become smaller,

And then the Lung Lobar is where again they take a larger pair of lungs which would be too big to be inserted in to my chest cavity and they cut a lobe off each lung and insert them into my chest, and they act as a proper pair of lungs.

With those two proposed proceedures, it is more risky and am told that I would spend 1-2 more days on a ventilator than with the regualr transplant.

On that clinic day Dr. Carby pleaded with me to stay and meet the surgeon, so we did. We waiting from 3.30pm till 7pm. In the end, I said I cannot wait any longer. I had to get back home which was a 2 and half hour drive, so we left.

A few days later I phoned to make an appointment to meet the surgeon, and I got my appointment for the 12th of Feb,

It was a brilliant day. Very positive and thats when I was told what I have written above ^^^ .

I am worried about this, as either have never been done in the UK before, but the surgeon says I have done lots and I am good at what I do. She came from Canada and had done them there.

After my apt in Jan with Carby, I asked him about going abroad. And he said he would refer me to the UNC (Unversity of North Carolina) - I spoke to them after and they said I would be waiting from 3-9 months, which is a long time to be away from my girls, and I was suggested to to the DUKE to see what they were like, as they are the best in the Country. And sure enough, I was won over by them. And I know people who have been there for transplants, so I feel comfortable with that.

Now I have decided what I am aiming for, the job now is to get my arse moving and sort out whats next.

I spoke to my local news and the BBC again and they are all for helping me go public with this. I have had lots of strangers get intouch which I am totally shell shocked with all the support I am getting. Friend and family have been rocks for me too, and what gets me more than anything is poeple who i'd never thought would help have helped. I am so shocked, and so greatful. And people who I thought would have helped, like my dad, and other people, (not naming anyone) have not bothered at all until last week. My dad is now like hmmmm, where as before he said I AM NOT DESERVABLE of a TRANSPLANT, can you believe that!?!?!?!?!?!?!?!?! And others who are supposed to know everything about me, didnt have a clue, cos they dont seem botherd, and its all about them and their life. anyway, I said I wasnt going to go into that....... But yes, it just suprised me somewhat, and am in total AWE with all the support I am getting, so THANK YOU!!!!!!!!!!

We have got lots of fund raising ideas and things going on at the moment, that I am not even resting. I am stressed out which isnt doing my health much good, so I made a promise to meself this week, to sit on me bum and chill, and not think to hard - well thats not hard to do in my case anyway.

Im going to sign off now, cos I think I have rambled on too much today, and I dont know what I have said and havnt and I dont want to keep repeating myself, as I can see I already have! Ooops!!!!!!

Bye For Now

Sally x x x


J said...

Those new techniques sound really interesting hon. Have they told you what will make them decide when to do this to a pair of lungs to make them fit someone like you, and when to give them to a donor who has been waiting less time but who they already fit? It's got to be a positive step, as they wouldn't have mentioned it to you if they didn't think it was viable.
Have you heard anything back from the DOH about funding for tx in America?
The people who aren't supporting you aren't worth you wasting your breath on (no pun intended), and i'm always amazed by how oblivious some of those around us can be.