Thursday, 25 December 2008
In summer 07 MRSA managed to get through an arterial line in my arm, it travelled into my hands and all my fingers causing a deep cellulitis infection around my hand and all my fingers. I couldn't even put my hand on the bed to move myself about, it was red, swollen and very painful. After months of strong antibiotics it cleared up from all but one of my fingers. Around October time my index finger was still red and by then looked a little deformed. My Dr just shrugged it off as remaining infection but said he'd do an x-ray to rule out other possibilities...
The results weren't good (I will upload the actual x-ray taken when I go on my other laptop) and as soon as they came in I was referred to an orthopaedic surgeon. He told us MRSA had caused 'bone death' in the last bone in my index finger and because of chemotherapy treatment I was waiting to have for my lung disease it needed to be completely eradicated, if it was it could re-enter my blood stream it could cause serious septicaemia. He agreed one more week of antibiotics and if it was no better further intervention was needed. Surgery, I said "erm I doubt very much my lungs would cope with that!"
"No" he replied "under local anaesthetic". I don't know what sounded worse. Long story short I had the first of 2 operations. The first not being very successful, he had to remove so much dead bone that the joint collapsed and my finger just looked more deformed. The second one proposed to go ahead in late November still has some mystery about it as to exactly what happened and what went wrong. I was last on the surgical list on a cold day last November. Due to the nature of the operation I was told I'd need K-wires to hold the healing bone in place as he planned on removing the joint completely and pinning raw bone edges together. Due to the fact the wires needed to be left in place for upto 6wks I needed good antibiotic cover. I remember spending the best part of a day on the surgical ward and being terrified but knowing I was in safe hands...
Various Drs came to try and get some IV access for the antibiotic, Vancomycin which I've had on many occasions for MRSA. All the Drs that came to get IV access failed including some ICU Drs. So it was left to the anaesthetist in theatre. Late that day I went down to theatre, I remember saying goodbye to mum and being wheeled into the anaesthetic room. I remember being attached to the cardiac monitor, the Drs preparing the local anaesthetic and the anaesthetist began slapping my arm in a bid to bring up some veins. The next thing I remember is looking at a clock... I had no idea where I was, who I was, I couldn't speak, I couldn't move, I had gathered something somewhere had gone wrong but I didn't know what. My bottom lip felt as someone had punched me in it and my throat felt as if I'd been strangled. As I started to come round more I started to listen to conversations. I heard the words 'brain damage' and 'cardio-respiratory arrest' thrown around a few times but I didn't actually believe they were talking about me. I tried to speak but as I opened my mouth the words just didn't come out. I scowled back at the clock. 2hrs had passed, what had happened in 2hrs? Where did they go? Some hrs later in the ICU my parents explained what had happened. I had suffered a serious anaphylactic reaction to the antibiotic. I had swelled around my face and throat I then stopped breathing, my blood pressure dropped and my heart suddenly stopped. The sore lip and throat were from the breathing tube that was quickly inserted. I was without a heartbeat for almost 2 minutes which had caused oxygen starvation to my brain and hence the reason why when I was told something a few minutes later it would need to be repeated... I was suffering from mild short term memory loss from the trauma and oxygen starvation. I remember very little about that time, I don't even remember not being able to breathe in the anaesthetic room. Also other details, some I wish I didn't remember and the fact that 7 days later the operation went ahead and was successful. My memory did fully recover but is now not 100% due to the morphine I take. Unfortunately the stress my lungs had been put under that week led to me developing pneumonia which led to me spending Christmas 07 in hospital. I believe it left some lasting damage behind which I feel has contributed to my rapid deterioration this year.
I'm glad to be spending this Christmas at home and on a years reflection I'm proud to tell you about what I've managed to live through...
Friday, 19 December 2008
There was entertainment too, apparently the Spice Girls had been asked to come but they couldn't make it so they asked their mums to come instead but 2 of them couldn't make it, ill with arthritis, 3 of them did turn up and danced around to Spice Girls songs. It was infact 2 health care assistants and a physio assistant in a wig and strange looking outfits... I will put a video up when one of the staff nurses sends me one...
The sister also put on a policeman's hat and we sang (or mimed in my case, no one would hear me under an oxygen mask anyway!) along to the fat policeman song. I have no idea what that was about... Then santa came round and handed out presents, I have a sneaky suspision it was actually the hospice consultant but I couldn't tell properly so I will investigate that one on Tuesday!
After that some of the nurses got up to Jive. The lady I sat next to, M, who also goes to day hospice on a Tuesday is also an oxygen patient at that point got a little teary "I used to be able to Jive" she sobbed. Up until that point I hadn't really thought about how potentially sad such a party could be for some of the patients. It was after another comment from M about some cards she'd had printed that really made me think, she'd had some cards printed and they had spelt here name wrong, she sent them back but didn't think the correct ones would arrive in time but they did and she had a mad rush on her hands to get them out to people because she feared she may not be here this time next year and she said "nobody would want cards with my name on when I might not even be here this time next year". She seemed so blasé about it but I could tell that it was really affecting her. It was at that point I looked around the room at the other 40 or so patients smiling faces and thought, she's right, there's a good chance alot of these people might not even be here this time next year, myself included. I also got a little teary then too but when asked if I was ok? I said it was the heat and one of the nurses opened a door for me. I peered out into the garden and held back the tears.
I had conversation later with another lady that also goes to day hospice on a Tuesday. She's a cancer patient who has been battling cancer for a few years now, along with myself she's probably one of the youngest patients at the hospice (ok so there's still 23yrs difference between us but on average there's 50 odd years between me and other patients!) and she was telling me about her 12yr old son at school. They had an assembly and one of the teachers asked what a hospice was? One of the kids put their hand up and said "it’s where people go to die..." the teacher then agreed. She said her son was sensitive as it was and he went home and questioned her about it. She said with tears in her eyes "I said to him I'm not dying but I could tell he didn't believe me. I phoned his school and explained to them exactly what happens at a hospice and asked them to at least have a word with him and his class". Having said what I've already said in this blog I guess it shows what sort of a variety of patients the hospice really caters for and what some of the different needs are of the people that go there. In my eyes the hospice is a happy, lively, beautiful place that I'm glad to attend. It’s a place of life and peace. Today I saw people with all different illnesses come together and every single person in that room at some point was smiling, even the ones that couldn't speak, smiled too. That to me says alot about what hospices are about, although some people will spend their final days there, it is a place of life and a place that should not be feared.
I'll leave you with a short clip of some of the staff that made today as wonderful as it was…
Remember most hospices rely solely on local fundraisers and donations and receive very little funding, if any from the government. To make a donation to Willow Wood Click Here.
Thursday, 18 December 2008
Friday, 12 December 2008
Due to infection Jamie hasn't been able to come near and I'm sorry to say it has lead to us having to end our relationship. The strain for me was too much. I wanted him there when I needed him most and he couldn't be, I know for 1 second thats not his fault its just the way things are and the more I thought about it the way things always will be. We agreed to still talk/text and I hope he will continue this blog with me. I'm looking forward to hearing how his training for Australia transplant games 09 has been going...
Jamie made transplant look easy, his is one of the success stories that I'm glad to have been apart of but recently the issue of transplant for me seems to have got more complicated (if that’s possible). Duke is still waiting on scans and x-rays that have been posted to them. The teams have now shown alot more interest and both
If there's one thing I've learnt recently from various conversations and recent happenings its that transplant is no cure, it is no fix and it is certainly not the answer to everyone's problems. It is a gamble and a big one at that. A swap of one set of problems for another and what I and the teams have to work out is are my problems worth swapping? Sure the reward of things working out is the dream but what if I were one of the unlucky one's it just didn't work out for? I'll leave you with some transplant wisdom anyway...
Tuesday, 18 November 2008
Thursday, 6 November 2008
Wednesday, 29 October 2008
I think also the publicity from my article in Closer magazine which came out yesterday has been a great help and I am very pleased with that. So thank you to Emily for sorting that out!
Now something that a couple of people have mentioned, what would happen to the money if either my time ran out or we had any left over (heres hoping on that one!)? I am more than happy to talk about this as people have been kind enough to donate so its only fair they know what will happen to their money. I have had a think about it and it would be near impossible obviously to give each donation back to each individual so instead I’ve decided I’d like it split between some charities. Willow Wood Hospice, the local hospice that has been looking after me since I deteriorated in August. I recently spent a month in the hospice for symptom control and I now attend their day hospice twice a week, most of the staff that work there are volunteers because like most hospices it is grossly under funded. The British Lung Foundation, the only charity in the UK that aims to cure all lung disease their motto being ‘One person in seven in the UK is affected by lung disease. We are here for every one of them’. Also I have recently had a wish granted by The Willow Foundation. I had a pamper weekend away in Centre Parcs (html'ed for my American readers ;-)). They are an adult wish foundation, granting seriously ill adults a wish. The world of adult medicine is pretty ruthless and having spent alot of time in ITUs, HDUs and recently Willow Wood I have seen (or heard) the blunt end of it. So this foundation deserves some recognition.
So I think that about sums this blog up.
Oh one last thing I started antibiotics on Saturday for a possible lung infection. And its a good thing I did as for a few days now I've had bad back pain. I mentioned this at day hospice on Tuesday and long story short I have a Kidney infection. I've been to see my chest consultant today and probably haven't got a lung infection (had my sats checked on 60% oxygen/12Litres and they were 92%, woohoo), its just further deterioration in my lungs but I need to stay on the antibiotics for the Kidney infection.
Saturday, 25 October 2008
Friday, 24 October 2008
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
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
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
- 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
UKlung transplant list is just too long, you could wait upto 4yrs for a donor in the 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. UK
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
So what do I do now?!
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
Thursday, 23 October 2008
For now I thought I'd leave you with a cute pic from the photo shoot...
Monday, 20 October 2008
HANG IN THERE BABY I KNOW YOU WILL BE OK...
Sunday, 19 October 2008
Friday, 17 October 2008
Wasn't so well this afternoon but all the staff could think to do was drug me up with Dizepam and put me on my ventilator and leave me to 'sleep it off'. With me, probably not the best option but there was no harm done.
Mum is, in desperation, for some money for my funds, bag packing tomorrow at a local Morrisons. I so feel for her, shes absolutely desperate to get me the money and get me to America. I may ask for some leave from the hospice and go show my face. In the mean time I have been thinking of other ways to pull on people's heart strings. Talking, at the moment is somewhat of a challenge for me so a video appeal maybe the way to go. I recorded something on my laptop and if I can work out how to upload it in the right format I will.
A Journalist from Closer magaazine is coming on Monday to take my story so shes been on the phone to me on and off all day asking about stations/times etc. I will be in Closer Magazine on Oct 28th!
I am going to go now before Jamie completely empties my cupboards (post transplant readers you'll understand me) seen as I don't have a fridge well its cupboards instead...
After a discharge meeting at the hospice yesterday, social services, after us asking until we were blue in the face if mum could be my carer agreed she could be under 'special circumstances'. Usually a family member that lives under the same roof under the care package I have cannot be the primary carer but they have decided to allow this in my 'special' case.
So I am looking at discharge on the 22nd. Will be going to day hospice twice a week opposed to the usual once a week so I have day hospice on the 23rd then transplant appointment on 24th. My primary consultant is aware and has agreed if I can't cope he will sort me out a bed in hospital, something we really want to avoid but bottom line is my lungs are just not good enough for me to be at home. It doesn't matter how many carers and how much help they will give us if I'm not well enough I'm just not well enough.
Anyway back to the reason for this post. I don't know who you are and which one of us that "I know someone who works at the hospital and has looked after you and theres nothing wrong with you, so get over it" comment in our guest book was aimed at, I can only guess me due to my recent press coverage but seriously if you can be that pathetic and think a comment like that in our guestbook is going to make a difference, well, how stupid are you?...
More later when I'm in a better mood at the moment I have lovely visitors I must get back to :-)
Wednesday, 15 October 2008
‘Help me before it’s too late’
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.
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!
Tuesday, 14 October 2008
Over 20 different medications, nebulisers, inhalers and other numerous aggressive treatments, 24hr oxygen, and non-invasive ventilation, is a scary prospect for anyone let alone a young 20 year old girl. This is the norm in the life of Rachael Wakefield, battling to keep herself breathing, living and enough oxygen in her body. This was her (pictured) only a few months ago, enjoying life as best as she could, not letting things get in her way. But over the last few months things have got much worse for Rachael very quickly, and very dramatically.
My best friend Rachael Wakefield has a rare interstitial lung disease that has unfortunately left her so unwell that she desperately needs a lung transplant in order to continue living. Over the years her lung disease has progressively got worse and her lung function is now less than 15% of what it should be. This is not a great for anyone, let alone a young 20 year old woman who has her whole life in front of her. She has battled for many years doing everything that she can to try and improve her condition; in the mean time she has raised the awareness for others with rare lung conditions. Providing families with a friendly understanding ear, sympathy and often much needed advice. Her latest mile stone is setting up a website; www.breathingislife.com, which is helping to further share the stories of sufferers and explain to others the trials and tribulations of living with a rare lung disease.
Unfortunately all medical treatments available for the treatment of her lung disease have been tried and regrettably have not worked, the only way for her to continue living is through this much needed lung transplant. Sadly, all options within the
Therefore I am asking you from the bottom of my heart to donate money or anything you can to this special person so that she can get the treatment she desperately needs. She is my best friend, and watching her deteriorate so quickly over the last few months has broken my heart. I can’t stand by see her struggle to live anymore knowing that there is a hope of dramatically changing her life, through this transplant. Unfortunately I, her family and friends can not cover the costs for this treatment, and I find it heart wrenching to think that it is only money that will stop her from dying and save her life.
Please visit www.breathingislife.com to donate and also for further information on this unique and truly special girl who deserves a chance at life.
I think that pretty much sums up this blog
P.S Happy Birthday Katie x
Monday, 13 October 2008
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.
Anyway for now we'll leave you with her appeal poster.
Rachael & Jamie
You can donate to help us get Rachael to America HERE