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?

One last plea...

Make video montages at www.OneTrueMedia.com

Not that I'm begging or anything but please, please help me get to America.

Rach

Front page News...

I Know I/we said this blog would be the thoughts and journey of a transplant couple and believe me in time it will be but for now it's other peoples thoughts... Rachael made front page news today. Below is the article but you can see it for yourself here:

‘Help me before it’s too late’

by Adam Derbyshire (For the Tameside Advertiser)
15/10/2008

A TEENAGER whose crippling lung disease was triggered by the family’s pet cockatiel desperately needs a transplant to survive.

Rachael Wakefield, 20, is fighting for her life in Willow Wood Hospice and admits time is running out.

Specialists in the UK have refused to offer her the lung transplant she desperately requires, telling her she doesn’t "fit the criteria".

Rachael was struck down by the mysterious disease at 13.

She said: "I am dying — this is the last roll of the dice. My only other alternative is a wooden box. I’m on morphine and oxygen round-the-clock. Every single breath is a struggle."

The family needs to raise £400,000 to pay for a transplant at the world’s leading lung clinic the Duke University in North Carolina, America.

Rachael, Dukinfield, Cheshire, underwent years of tests but her illness continued to baffle doctors who diagnosed everything from childhood asthma to pulmonary fibrosis.

Two years ago, it emerged the culprit was cockatiel Penni who had lived in the family home since Rachael was eight.

Specialists at a top London children’s hospital told Rachael she has hypersensitivity pneumonitis, more commonly known as ‘bird fancier’s lung’.

Dust from the bird’s droppings wafts into the air like an aerosol. It is harmless to most people but can trigger chronic breathing difficulties in a minority of people.

Throughout her teenage years, Rachael was hooked up to oxygen 24-hours-a-day. While her pals enjoyed nights out she was "trapped in the body of a pensioner" — a virtual prisoner in her own home.

Regular stays in Hospital led to her contracting MRSA twice. And last November she "died" during surgery and had to be revived after antibiotics were given to her too quickly.

She even underwent a course of chemotherapy in January in a bid to "wipe clean" her immune system.

But she deteriorated in August and after yet another spell in Hospital she was transferred to the hospice three weeks ago.

Rachael added: "No one who can help me is willing to do so — I feel like I’ve been left. It is so rare they just don’t know how to treat it. But every day I’m getting worse. And if we don’t raise the money I will die."

Mum Lynnette, 41, said: "It’s heartbreaking. They have told us there is no shortage of organs at the institute in America. But we have to find the cash."

Rachael has set up a website where people can donate to her fund at www.breathingislife.com

Although Paypal is a quick, trusted and easy way to donate they're taking their fees. Out of a £1.00 donation they will take 37p. So cheques can now be made payable to 'Rachaels Future Hope' and sent to: 32 Rosehill Road, Ashton-Under-Lyne, Lancashire, OL6 8HR. A Seperate bank account has been opened for the transplant fund and account details will be published on the website ASAP.

I promise tomorrows blog will be a personal one!

Rachael