Well I haven't blogged because I haven't really known what to say these past few weeks. I got home again thankfully, my mum and I have been trained to give my IVs at home and now we have a large dripstand and infusion pump sitting in our utility room. That's going fine, the strength of the drug and the fact my Tacrolimus (FK) has now been upped now I'm off Itraconazole (Itra interacts with FK and bumps the levels up so you don't need as much) has taken it's toll on my kidneys and last week my kidney function hit a low with my Creatinine spiking well over 200 (normal is 50-100 I think! My normal is about 70 anyway). We spent most of last week in clinic whilst the team played around with my FK, dropped my Ambisome to 3 days a week and kept me behind for IV fluids. Since being dropped on my Ambisome my cough has become a bit more 'junky' and my weight is down. Related or not I don't know but I hope not, I could do without further complications this side of Christmas. I saw my doctor on my own on Thursday, we haven't always had a great relationship but we get on well now and I can open up more to him more now than I've ever been able to. I don't know what he must think of me at the moment though because the last two times I've seen him its ended in tears. I cried about the fact my dad has to carry me up the stairs now and the fact I can't even stand up to brush my teeth in a morning. Of course there's not much that can be done about any of that now but he did prescribe a small amount of morphine to take the edge off the breathlessness. I was on morphine for just over 12mths before my transplant, if I'm honest it shocked me a bit, I know morphine is given as a bit of a last ditch attempt to make things just that little bit easier when nothing else really can. I am grateful to be back on it because things are bad now and I appreciate anything that would make things easier but I didn't expect to be back on morphine, not so soon anyway. It upset me a bit as I think it was a bit of a final confirmation for me that things haven't really gone to plan.
I'm looking forward to Christmas, one I certainly wouldn't have seen this year if not for my special gift.

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

Shocking...

So, today, for me, has been one kick in the teeth after another. I had an email from the Duke transplant guy (I don't know exactly what he does at Duke but he is something to do with lung transplants (obviously)) and he tells us the 'deposit' for the assessment and lung transplant is... wait for it... $718,000. I saw the email and cried. Alot. That works out at about £360,000. Where that amount of money is going to come from in a matter of the weeks I have left is beyond me. I am seriously getting very worried now and starting to think realistically. That amount of money, unless a famous celeb comes along and donates it is not going to come in time for me. I have spent the majority of the day in tears.

To put it bluntly, if I don't get this money in the next few weeks I will die. That, I'm afraid is the bottom line.

I am still feeling no better yet still leaving the hospice on Thursday (yeah Thursday instead now). My kidneys have packed in for the 2nd night running having not being able to pee for 24hrs I have just had to be catheterised again. For the past few days every time I've felt the need to pee I've had to get Jamie to run a tap for me and believe me it works!

Had a chat with the nurse here tonight, she hasn't properly looked after me before but isn’t happy about this leaving on Thursday business. I still can't talk in full sentences and can do very little for myself, I’m covered in bruises from keep wobbling into things (mainly the edge of the bed) and although the Morphine and Diazepam take the edge off the breathlessness for a while it is not the be all and end all. But it maybe that the hospice have reached the end of what they can do for me and it’s just my condition deteriorating further which is something they can obviously do absolutely nothing about. She’s handing it over anyway to the sister in the morning, I mean its not that I don't want to go home its just I'm not really any different after spending 3wks in the hospice which is, for me very disappointing. Anyway I will stop rambling now.

Oh one last thing, local friends, watch out for me in the Tameside Advertiser this week (maybe front page) they're coming tomorrow to take my story. For everyone else I will post a link when the story is up online.

Rach