Thursday, 5 December 2013

December Already!

It's December already, I don't know where the time is flying. Another busy week has gone by, starting with a lovely Christmas party on Saturday, organised by Papworth PH Matters Support Group, just to get us all into the Christmas spirit. I had really hoped I'd be well enough to see everyone and catch up. We had a great time and got chance to meet up with old friends and meet new ones. It was especially nice to meet up with Ruth and Steve at last, after we have seemed to keep missing each other for one reason or another and to meet Esen and Omer. It was great to see everyone and, as is becoming the norm for me, I found myself pinching myself that I actually made it to the party! I don't know what it is really with all this 'pinching myself' - I guess it's trying to come back down to normal again after having gone through what feels like such a major event in my life.

Enjoying a good chat!

Now we had got ourselves in the Christmas spirit, we spent a few days gettting the house 'spring' cleaned - or should I say 'winter' cleaned - and started getting the decorations, cards and presents ready for Christmas. I love Christmas, I always have done, and like to get things ready in early December, especially the decorations then we can enjoy them all through December and get in the festive spirit for the month. I am so looking forward to Christmas this year, it is already feeling special. 

All lit up! 

I cannot get past this feeling of everything feeling so special  and that the simple and ordinary things we take for granted actually feel so wonderful. Again, I think the events of the last few months has heightened this, together with the last few years being so difficult and challenging and knowing there will still be further challenges ahead. Not least of all too, knowing that in having my transplant, another family are grieving a loved one and facing their first Christmas without them is a very difficult reality and I therefore cannot help but appreciate every minute I have been given to enjoy my life again. This reality makes it so much more poignant. I'm not sure as yet whether these feelings will ever leave me, somehow I don't think they will, I have been given too big a gift to just take life for granted ever again and in honour of my donor and their family I cannot imagine ever doing so. 

And here we go again, after yet another broncoscopy!
Wednesday and it was back to Papworth again, this time for clinic tests and a broncoscopy to check my lungs and check how things are healing. It had been nearly three weeks since I'd been and I felt ready for some reassurance that things were still going all right. It is still very early days and I am still learning to have some confidence while I'm away from the hospital. I'm hoping this will come in time, sometimes it can feel a bit frightening if I have a bad day or I can feel something a bit different to what I'm used to: they instill it in you so much what signs to look out for both infection and rejection when you first leave hospital, but I worry I may miss these signs I've been warned to look out for, especially when there is still soreness and healing from the surgery and associated symptoms, which you could easliy mistake for something else. I guess this will just get easier, especially when I have recovered from the operation properly. 

It wasn't the best of news following my bronchoscopy, it is looking like I am going to need some further surgery, due to a problem in my windpipe. I cannot say I'm surprised though, as the problem has been ongoing since my transplant, but it was difficult for the Transplant Team to see properly what was going on until the wounds from my transplant surgery had healed inside. It has been causing me lots of problems since my transplant though, so I am trying to take it in my stride and know that really the sooner it is dealt with, the better and that some of the things that have been holding me back a little may be sorted once and for all. 

At last, a proper good old shower!

Just to finish off, I managed to achieve another major step this week, something I'd been wanting, hoping and wishing for so much these last few years. My scars having healed nicely and stitches now disappeared, I stood under the shower and sang! I've been doing so ever since! In getting my transplant, all I ever wished for was just to be normal again and do some of those basic things that people do everyday and take for granted. I am happy with this ... for now...

Thinking of my very special donor

At the moment there is still a chronic shortage of organ donors, still three people in situations similiar to me die each day while they wait. During December alone, this season of Advent, this means at least 93 people in the UK will lose their lives unnecessarily. This all slips under the radar, quietly unnoticed and ignored by most, even by those who say they would actually take an organ if they needed one. If it was some big disaster that had happened where 93 people lost their lives, then there would be major public outpourings and answers demanded, but no, there is an air of complacency instead, it is just individuals and as long as it doesn't affect us then it doesn't matter is the attitude of many. So if you want to do one special thing this Christmas and haven't done so already, please sign up to the organ donor register and tell your loved ones. There is no bigger gift than the gift of life.

The Papworth PH Matters Support Group meets quarterly each year and welcomes everyone whose lives have been affected by PH. Next year's 2014 meetings are: March 22nd, June 14th, Sept 27th, Nov 29th(Xmas party). Everyone welcome. 

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