Playing catch up

First off here's the article about my special gift to the hospice (here).© Manchester Evening News

Christmas Eve

I've always believed Christmas is as good as you make it as with other special events, days, making the best of what you have makes the day what it is. This year I didn't expect Christmas to be an easy going day and it wasn't but we still made it a special one and enjoyed it. Of course Santa was very good to me and spoiled me.
Not too long after that article had gone out in the local paper I got a call from the Manchester evening news. They said NHSBT had contacted them over the 'help save my life' article and Channel M interveiw to say that as a result 3000 people in Manchester signed up to the organ donor register. As I was told this over the phone my eyes filled up. At the time when it came out I thought, it's quite good maybe 1 or 2 people might sign up and even if its just 1 or 2 that’s enough for me, that's my job done. But to hear that 3000 signed up took me by surprise, the thought popped in my head '3000 people? And 1 person can save upto 7 lives?! That's alot of lives saved!' The journo asked for a few comments and said they would run another article over Christmas to report the response. And sure enough on Dec 29th I was again on the frontpage here. That cheered me up alot but to hear that Jessica Wales received her lungs after over 4yrs of waiting cheered me up more. A couple of days before my article came out I saw on facebook that Jess had taken a turn for the worse, in no uncertain terms when your ill enough to be on the transplant list that often spells out that time is up. Knowing this I texted a couple of friends trying to find out exactly what was going on and received details that that was in fact the case. Jess was clearly out of time and I thought it was more than likely within the next day or so I'd probably get a message saying time was up and Jess had passed away. But a few hrs after hearing Jess was critical rumours started to fly around facebook that she had had a call and it was a go. Just after midnight on Dec 28th it was confirmed Jess was in fact in theatre getting new lungs. The feeling of relief was over whelming. Of course not forgetting the donor family, they have lost a loved one over the Christmas period and during that time have been selfless enough to think of others and agree to organ donation and because of this Jess' life and probably the lives of a few others have been saved. Jess was so poorly going into transplant so there's no doubt her recovery will be lengthy and probably a little complicated, it's early days but Jess has been given her 2nd chance, at last. Jess' friends handled how ill she was and documented details about her transplant so well that it spurred me on to do my final part of planning which I'd been meaning to do for a while. My group on facebook, Rachael Wakefield's Transplant Plea has a following of over 8000 people now and is not really used anymore so I've made a couple of close friends admins and they're going to update the group for me when I can't because I'm hopefully getting new lungs. The group, twitter and my blog will be updated by friends and will be the most upto date forms of news. I will (situation permitting) update right until I go to theatre then my phone will be switched off until I'm able to use it. Mum will contact 3 close friends with updates and they will keep on top of facebook, twitter and blog. Now those final plans are laid hopefully it won't be too long before they are put into practice.
New Year's Eve was manic so more on that later.

long week

What a week I've had! When people say to me "what do you do to occupy yourself? You must get bored?" Ha! Chance would be a fine thing! So I'll start from last week.
Last Thursday as usual I went to the hospice, felt perfectly fine in the morning had some reflexology, had my NIV all set up beside me and was comfortable. By mid afternoon I got a strange feeling, I had palpitations, my heart felt like it was racing and I felt sick and tired. The hospice doctor prescribed some extra diazepam and said it'd probably pass. We waited it out for 5hrs before I was finally sent to a very busy, very noisy A&E. In A&E everything looked fine so I decided I was safer at home and signed myself out. I contacted my consultant the next day and arranged to see him the following Tuesday. That day I went to a support meeting at my transplant unit. Fantastic idea, they allow pre and post transplant patients to get together, share thoughts, ideas and tips on surviving (quite literally) transplant. It was a quiet meeting with just a few of us one very inspirational post transplant patient and I did also meet one lady, Ruth who was pre transplant, waiting 16mths. She mentioned the new start Christmas party that was taking place the next day at the hospital. I knew nothing about it so she pointed us in the direction of J's. J is lively, bubbly and lovely. She works in the new start office at wythenshawe and from what we could gather works hard! She sold us some tickets for the party for the next day.
I didn't really know what to expect, J had said she would introduce us to Sky and her family. By chance I suppose, Sky was leaving the ITU whilst I was being admitted for my transplant assessment back in August, she is the 16yr old girl I spoke of back then. She is now 5mths post heart transplant, in 9mths she's gone from feeling a bit poorly with a stomach upset to having an ultrasound scan and medics stumbling across her very diseased, failing heart, to urgently needing a heart transplant which she got within 4 days of being listed. There is only one word to sum up that story, amazing! Sky was inspirational and we got some pics together.

Pics with Sky

Also my surgeon (hopefully) was there and consultant. It was strange to see them as 'people' in normal clothes outside of their medical roll. It reminds you that at the end of the day, underneath the stethoscope there's actually a person under there. In the past I have not had the best relationship with my consultant and many of the staff at the hospital for that matter but now it almost feels as it should do and for that I couldn't feel more thankful and well, lucky. It was a good day I got a few snaps and it was great to meet staff and patients involved with newstart and transplant. People, mainly high up in the charity, were coming over wishing me good luck. You know you’re famous when people know you but you don't know them!

Handing a cheque to the chair of new start (right) and J (left)

I exchanged numbers with Ruth, we agreed to call each other if we got calls and I agreed to find Sky on facebook. A day later, around 7pm in the evening I got a call from Ruth. They had lungs for her, at that moment I grabbed my transplant phone, Ruth said they were calling in reserves incase she couldn't have it. At the thought I shivered. I sat thinking of her most of the night and wondering what I'd do if it was me now? It made it all hit home a little and gave me the push I needed to at least sort out my transplant bag! Unfortunately for Ruth the transplant didn't go ahead and at around 10.30pm she called back and told me about it, the lungs were in good condition but her antibodies were not compatible, I can't imagine how disappointing that must be. Fair enough if it's determined that your not a good match, or the lungs aren't good enough but to hear they are good and you were good match must be heart breaking. The day afterwards she just simply said "I keep thinking I could be transplanted by now :-("
On Tuesday I went to see my consultant. I wasn't looking forward to seeing him so much, I knew what was coming. I have gone downhill some what in the last couple of weeks. I've gone from needing NIV a few hrs over night to plus a few hrs in the day, to most of the day, to all day. It's a worrying trend that I don't like. He didn't have much to add just to highlight I need some lungs now and we're getting pushed for time. He promised he'd write to my transplant consultant and make sure he knew what was happening. I cried that day.
I will write about Wednesday’s ventures when I have pictures up, that was an exciting day.
Thursday I relaxed at day hospice and yesterday I went to the hospice party. The staff always bend over backwards to make it enjoyable and this year was no exception. Tinged with sadness as I gazed in the direction I sat last year with friend W who died of breast cancer this year. Remembering her family, her husband and three children that will be spending their first Christmas without her this year. There were laughs though too as always and I laughed (NIV permitting) until I had tears in my eyes and my cough forced me to stop. The hospice have seen me through some of the lowest and highest points of my life in the last 12mths and I gave them a special Christmas present also but more about that later when the article is online!
All in all a busy week so for those of you that think I lounge around doing nothing there you go!

Just breathe

Something I always wanted to do when on the transplant list I got the chance to do last week. The day after I was listed Sarah Milne from the charity LLTGL wrote a press release and my story went down pretty well. Being able to raise the profile of organ donation via the media for me gives me a focus, it gives me a voice when there's nothing to say or do but wait. For me it keeps my mind busy and if I'm honest it takes my mind of what's really happening to me and what I'm facing.
On Thursday at day hospice when the media hype had died down a little I was left to my thoughts and feelings I'd blocked out both physically and emotionally. The fact is over the last week or so I've been more unwell, I've tried to ignore it but by that point the fact that I was knocking back 20mls of morphine in one go so I wasn't in tears with carbon dioxide headaches was being questioned. I talked to a hospice nurse and we both agreed it couldn't be anything other than carbon dioxide. An appointment with an NIV nurse today confirmed this. This meaning either A) my VPAP was broken or B) my lungs had deteriorated and were less able than before to do their job. We figured seen as there was nothing to point to the VPAP not working it was the latter. I have occasionally used NIV in the day but it wasn't a complusory thing and I would just use it in the day if I felt a bit under the weather.
Since the day I went on NIV I always said it would never restrict me, I would not be stuck on an NIV in the house for the majority of the day watching life pass me by, over my dead body. Now I've arrived at that point, I'm dependent on NIV more than I ever have been before, to at least keep pain free and feel 'normal' I need to be on it 15-20hrs a day. Carbon dioxide headaches are not something you can ignore as much as you think you'd be able to in a 'oh its only a headache!' style, they bring you crashing down to earth, at times I have fallen to my knees had in my hands screaming and crying. High carbon dioxide affects everything, concentration, energy, memory even down to physical appearance.
So what am I supposed to do now? I need to stay alive and wait for these lungs and that, now, involves alot of time on a ventilator but how can I sit back and watch the world outside my window carry on without me? leaving me behind.
I always wondered, would I get on the transplant list and just think 'ah at last, the battle is over' and as soon as I think that would I physically give up before I got to where I wanted to be? Which as gruesome as it sounds, is an operating table.
The fact is this latest blow has hit me hard, of course I saw it coming, anyone with a progressive disease on NIV sees it coming but how do you prepare for the fact that for the majority of the day, for the majority of your life here and now you can't even breathe for yourself?