Friday, 24 October 2008

Transplant Choices...

I started this blog so I could be totally honest about my life and what goes on in it and damn it that’s what’s gonna happen in this blog.

So this afternoon I went a place I swore I would never go back to again. I'm not going to name names but it was my local transplant centre.

The last time I was at this hospital... Well let’s just say the consultant and I had a fatal fall out. He told me at 17 to go live my life because I could if I wanted to and I was just choosing not to and there’s nothing more he could do because there was nothing more to be done anyway.

I had the diagnosis of a lung disease which was serious and progressive but that didn't seem to matter and although I had originally gone to that hospital for a transplant assessment it was pretty clear I wasn't going to get one there.

I wasn't happy with what he said to me and without asking his permission I asked to be referred by my GP to a top London hospital I had been to before and knew well.

He didn't like this and after my referral he wrote a letter, a series of letters, to every physician I had ever met in my entire life stating quite clearly I had psychological issues and whatever was wrong with me lung and diaphragm wise was completely within my control and I would become ill at difficult times i.e. when he was on leave and not in the building just for more attention.

He made out I was completely none compliant with my medication. Which is very untrue, of course I'm gonna say that but taking tablets and nebulisers is something I've done for years and although I wouldn't say I enjoy doing them, they're a chore but they're something I can do to make/keep myself well and that gives me some piece of mind that what I'm doing is making that difference and I'm doing the best I can for myself because nobody else can do anything for me! There was one tablet which I had an issue with and those taking it will understand why, at that time I was on a hefty dose of Ferrous Sulphate that was the only tablet I hated taking and would try and avoid and that’s how my 'major none compliancy' came about. Ferrous Sulphate is an evil drug it left me hunched over a water bottle most of the day after taking it and dashing to the loo and from talking to a doctor friend of mine compliancy issues with Ferrous Sulphate are very, very common just purely due to its nasty side affects.

Since all this emerged my London team have read through the letters and were 'disgusted' with what had been written about me but knew they had to take at least some action on it. So I under went a full psychiatric profile and I'm pleased to say he said he was wasting his time because there was clearly nothing wrong with me.

So anyway I saw the transplant consultant this afternoon and he went over all the issues why transplant isn't an option for me here in the UK so here they are:

  • I'm not physically fit, mobile or well enough, having just spent a month in bed in a hospice that doesn't surprise me much.
  • My weight is unstable (I have lost 2 stone recently unintentionally).
  • The psychological and compliancy issues have to be investigated and ruled out completely (post transplant drug none compliancy is very dangerous).
  • Diaphragmatic issues need to be explored further.
  • I also need a proper diagnosis for my lung disease at the moment its 'Idiopathic Interstitial Lung Disease' which basically means: An unknown lung disease which affects the lung tissue, my consultant believes its some sort of Interstitial Bronchiolitis or Obliterative Bronchiolitis but we don't know for sure. Knowing would mean we would know if it could strike again post transplant.
  • I am currently on 30mg of Prednisolone a drug they also use alot of post transplant and they don't like you being on more than 10mg a day pre transplant due infection and wound healing issues.
  • I have osteoporosis - That could cause problems with bone healing post transplant.
  • Lastly the UK lung transplant list is just too long, you could wait upto 4yrs for a donor in the UK that is time I really don't have. It would be such a shame to work on the other issues when the list is just too long anyway.

You see how my rant above links in now?

The above list seems like a long one but they are or most are things that can or could be worked on if we had the time and really wanted to make it work in the UK. But we don't have the time, the transplant list is just too long but you see my predicament? My local transplant centre are now saying they need more information, but its a possibility so they have not said "NO you can't have a transplant here so go away" and Duke University haven't said yes yet. I've not been accepted at Duke yet, I'm fund raising because I need to be accepted there because the UK transplant list is too long but Duke could also say exactly the same as my transplant centre have today.
So what do I do now?!
Although the UK transplant list is too long I have not been officially turned down in the UK, yet, that’s pending more information from my London team. But I have not been accepted by Duke either; they’re also after more info on me.
I think having had some time to reflect this afternoon I need to carry on fund raising to get to Duke because I don't have the time to wait around for these lungs in the UK, my time is running out and my consultant who I had a chat to this afternoon agrees with this. But I should also let things run their course at the local transplant centre because I guess it can't hurt right?


Sickly Florida Girl said...

I know some of these dotors can be real dirt bags . i have had a few myself that wrote letters to my other doctors sayen that i was not doing what i was told to do. i would love to see them walk aday in our shose!

i am prayen for you sweetie much love and hugs from the USA!

Kathryn said...

Hi Rachy,

Duke can't accept you until they have actually seen you. That is true of any transplant center. But Duke will make you exercise under expert care at Duke's Center for Living. How is your campaign going?

Thinking of you and understanding your frustration,

Christy said...

I am praying for you Rachy. I also did a post on my blog about you and linked my blog to your's. I want to see you over here at Duke soon!!! :)

Mary said...

Hi Rachael,

I was turned down for a transplant at Toronto General for issues much like your own. They are not good with anything too rare or unusual and frankly, if anyone should recommend Toronto General to you, please stay far away from this hospital. In my experience, my treatment there was not that great to be honest. I believe you'll receive much better care at an American transplant centre.

Please check your e-mail, I sent a message to you and your parents with links to three more transplant centres. Duke is an excellent choice, but I hope you may consider several others that are said to have shorter lists: Mayo Clinic in Jacksonville, Florida, Cleveland Clinic, and also please see info. provided about Dr. Vaughn Starnes at USC (sorry about the typo in my e-mail, it US, but USC in the US :0).

My thoughts and prayers are with you!

((((Hugs)))), :0)

Cloudedbrains said...

I just wanted to say as someone with several serious healt issues - I get the none-compliant thing thrown at me alot :(
But one thing that annoys me is when it comes from people who know you better - just because they are frustrated :o
But fight onwards hun - I am behind you all the way !!
God bless xxx

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