Saturday, 21 December 2013

One Year On

It is exactly one year to the day that I was put on the transplant list.

I remember Peter, Andrew and myself jumping up and down as though we'd won the lottery. Of course the news came after a really terrible year of disappointment and jumping through painless hoops. It was as though Christmas had come early and I did nothing but grin for a week. I said at the time just getting on the list would be enough, it meant I still had hope, it meant there was a chance I'd beat PH and go on to live well into retirement. Foolishly I was convinced I was going to get 'the call' within days, or at most weeks, of going on the list. However as the weeks and months rolled past reality hit and I knew I was going to be in for a long wait but I still hadn't reckoned on hitting the one year marker.

During my wait I watched and waited while several of my friends went in for transplant. Some out comes were bad, poor Anne, some were false alarms, how Stacie coped with being sent home twice I will never know, and others, the majority, were roaring successes. Out of all of them the only person I can say, hand on heart, that I didn't feel a twinge of jealousy about was Kath. Yes there was a moment when I thought, 'why not me' but the overwhelming feeling was joy that Kath's two and a half year wait was over. Her transplant gave me renewed hope that sometimes the wait may be long but the end results are well worth it.

Of course none of this should overshadow the stark fact that more people die waiting for transplant than get them. Dan Male is a case in point, he waited so long that he eventually became too ill for transplant and died. I know, it sounds crazy doesn't it, that you can be 'too ill' for a transplant. In truth though it happens more often than anyone can imagine. Yes the focus is always on the part or parts of the body that need replacing but in truth the whole body is effected. For PH patients the lack of oxygen in the blood can cause damage to the brain, kidneys, liver etc, etc. And don't forget the drugs we take are toxic and are slowly poisoning us as they ease our symptoms. Most of us need regular blood tests to check our kidneys and livers are still working properly. Once your kidneys or liver starts to pack up, that's the end of any transplant hopes.

I am constantly urged to stop working, look after myself etc. Well I know all those making these comments have my best interests at heart but no matter how well meant they may be no one truly understands why I still insist in working.

There are two reasons. One is to remain as fit as I possibly can, for as long as I possibly can. My muscles are under attack from oxygen deprivation and lack of use. When, if, transplant come the better shape they are in the quicker I'll recover and get back on my feet. Even the short walk from car to desk will help keep my legs in shape. Sitting at a desk for eight hours a day helps with my core muscles. Writing and typing keep my hands and arms going. It's small steps in the big scheme of things but when I'm praised at the transplant clinic for keeping so 'generally fit' for 'someone as ill as you are', then it is all worth it.

The second reason is for my emotional and intellectual state. I like to keep my brain busy, staying at home and having nothing to think about other than my own situation or whether 'Kyle has slept with Kate and will Georgia find out' is not exactly the intellectual stimulation I need. I also know that I'd become very inward looking and depressed if I were cooped up at home. At work I get to gossip and laugh and feel I'm a useful part of a team. Listening to people moaning all day may not be everyone's idea of an uplifting day but most of the time it makes me glad for the life I have. There are some situations I wouldn't be in for the world.

So today I will probably spend some time having a little bit of a 'poor me' moment and a little cry but I will get back on the horse and hope that 2014 will be an easier ride than 2013 was.

So now I've got all that off my chest how am I feeling, well a lot better is the answer. I've had more bloods taken but I don't think they will show anything as things have improved dramatically over the last day or so. The little blisters or spots have gone and my mouth is still red but not dark red. The soreness has gone, more or less, sharp food, such as oranges, still makes me wince but on the whole it's back to normal. Thankfully my breathing has improved significantly overnight. My chest was declared clear again yesterday, which is supported by the fact that I'm not bringing any gunk up so it was suggested that my throat may have irritated my asthma. I was advised to continue with the meds I already have and to increase my asthma meds for the next week. Twenty four hours on my breathing has improved, so at least I know what was causing that. I've been given extra antibiotics in case things flair up during the holiday period but it looks like I will be well from Christmas, thank goodness.


Yesterday I went shopping, or at least Andrew and Peter did the shopping. I was wheeled around pointing out things we needed and grunting occasionally. We were in and out in under an hour and anything we haven't got now, we can do without. I spent the rest of the day resting, which is exactly what I intend to do today and again tomorrow. Looking at the weather I'm so glad I don't have to go anywhere.

Did I mention it's the Strictly final tonight? So excited! Who do I think will win? Well I'm backing Suzanna but I think it will be Abbey. Next blog, tomorrow.