ONLY 2 MORE SLEEPS...

I am now back home at my parents for Christmas, so it feels like the festive season has now begun. Even wee Seb had a bath today in preparation for Santa coming. I am nearly finished the IVs and feel ok-ish - not a whole lot better than I did when I started them, but not any worse. Hopefully it will tide me over the festive period though and as long as I pace myself I should be ok.

It feels strange coming to the end of another year on the transplant list, and now looking forward, wondering where I will be this time next year. It is also strange looking back over the past year, which has seen some important changes in my life. At the beginning of the year I started to use overnight oxygen, then shortly after, oxygen for exercising and now laterally, require it much more during the day. Mid way through the year, I finally realised that work was beginning to take its toll, and what started as a months leave has now become almost 7 months away from work. In that time I expected to stabilise in health, but instead had a summer of frequent infections, spiralling weight loss and for the first time since I was placed on the list, began to wonder if that call would come in time. Thankfully the winter months, so far, have brought me stability, weight gain and the feeling that I have pulled back some control over my health. I am ever hopeful that this can continue into the new year and that stability can be the key word for 2008.

I have also had some interesting experiences over the past year. I was short listed for the Breathing Life Awards and travelled to London for the star studded ceremony, and thereafter, appeared in the Daily Mail to raise awareness to the issues of Organ donation. I gave a speech at Scottish Parliament in the Summer as part of the Live Life then Give Life campaign, and more recently had a further foray into public speaking at a palliative care conference. So, despite the downs of health related issues, there I have also had my fair share of positive experiences this year, which I can take forward as the highs of 2007.

As I now prepare to spend the festive season with my family, I remain positive and hopeful for the coming year. I have made it successfully through this past year, and am still here and still standing. I have plenty of fight left to see me through this coming year, and whenever that call comes I am ready to take that step. A step which will see me moving forward to a new and exciting life, filled with endless opportunities and new beginnings.

So, on that positive note, I would like to wish everyone a Happy Christmas and wonderful New year!

Only 15 sleeps until Christmas...

I spent the weekend putting up the Christmas decorations and making a Christmas CD, which I have been playing continuously since its completion ( I may or may not be listening to it at the moment). Seb has shown very little interest in the Christmas tree this year, and in fact, he took a wee huff while we were decorating it and went off to the kitchen to sulk. I think he is annoyed because it is blocking his view from the living room window. He has however taken some interest in the nativity scene, and I doubt very much it is due to religious reasons. I left him sleeping peacefully in his basket this morning when I went to get dressed, and when I returned he was still in the basket sound asleep. I was sitting in the living room for a few minutes when I first noticed a candle on the coffee table had moved slightly. On surveying the room for further evidence, I find that the nativity scene (which was sitting on a side table) had been raided. The hay from the stable was all over the sofa and all the figures scattered around the table. At first I couldn't locate baby Jesus and feared the worst, but fortunately he had just rolled under the sofa. I am just so relieved that he hadn't eaten or chewed any of the figures, as my mum got them as a child (this makes them really quite old, but I won't say how old) so it would have been a disaster. I will now have to make sure he is not left unattended in the living room again, even if he does appear to be sound asleep.

I forgot to mention in my last blog about the talk I gave at a conference recently. I was asked to help out by one of the CF trust's expert patient advisers, as she was unable to meet the commitment and was looking for a replacement speaker. The conference was about Palliative care, where this is taken to mean any care that is non-curative. Traditionally palliative care has been concerned with end of life care specifically and commonly in relation to cancer. However, it has become clear in recent years that palliative care is required at many stages of an illness, and that as well as cancer, it also applies to most chronic illnesses. I had to talk about my experiences as a patient, and based on this, what I would need and want from services. The CF team can be used as an example of a team who often deliver palliative care, as most of the treatments in CF (especially in the later stages) are to relieve symptoms and are not curative in nature. I was able to use the CF team, as well as all the other services involved in my care, as a basis to my talk. I had to speak for around 15-20minutes, and I feel that I did manage to get a few important messages across in that time. The attendees found it helpful to hear things from a patients perspective also, and the feedback after the event was apparently very positive. It's all good experience in the art of public speaking and presentation skills, which will be useful for my work in future.

I am starting some IV antibiotics tomorrow. I am not feeling too bad, but my chest was definitely on the downward slope and I was anxious about leaving things any nearer to Christmas and ending up unwell over the festive season. Hopefully this will give me a wee boost, and I can relax and enjoy all the festivities. I have had a reasonable break from IV's so I am not too upset about going back on them, although I'm not looking forward to having to get up early to make up the morning dose. I'm sure the 2 weeks will fly in though, and I finish the course on Christmas eve, which leaves me free for all the present opening on Christmas morning! Only 15 more sleeps...

I'm pleased to say that I am still feeling ok, and chest wise have been more stable over the past month than I have been all year. The last few days I have been a little more out of breath, but even if this is due to infection brewing, I am still delighted to have come this far without IV's. I will just see how things are over the next few days, as it may just settle down again, and if not, I'm sure I will have caught things early and in time for the festive season.

Speaking of the festive season, its nearly time to put up my Christmas tree and I can't wait. I have already bought and wrapped all my presents, which is clearly a sign that I have way too much time on my hands. To be fair, I am trying to be very organised just in case I happen to get 'that call'. You just never know. (Although to be honest, January would be more convenient when I have nothing else planned on my social calender ;-) )

My other good news is that I am getting a stair lift installed at home. I have been struggling with the stairs for most of this year and after a rather lengthy wait to be assessed, I finally got the go ahead to have one installed. It will take about a month to build, so hopefully by the new year I will be buzzing up and down the stairs to my hearts content. It will make such a difference to my quality of life, especially when I have a chest infection. The last couple of bad infections I've had were spent in hospital and I know if I had been at home there is no way I could manage the stairs, so hopefully this will make things easier in future. The only concern I have is keeping Seb from playing on it. I have no doubt he could learn to operate the system and would be away up the stairs before I know it. Unfortunately I think the rail will also obscure the bannister, where, when attention seeking, he likes to lie with his head poking through. I will leave you with some photos to illustrate...

Seb looks dejected and forlorn because no one is paying him any attention

Seb looks rather surprised when he is informed that his peep hole will shortly be obscured by a Stannah stair lift