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!