Sunday, May 20, 2012

Time is a wonderful enemy

I should probably be sleeping now, but I still feel the need to write.
I dont know where to start or what I want to say, so bear with me, this will be long and probably not much sense.

On tuesday I got out of hospital. I was meant to spend the entire time on IVs, but by Sunday, my veins had gone again and after many failed attempts to reinsert them, they gave up and switched me to orals. My infection markers where coming down yet I still felt rough. I was discharged Tuesday, still on Orals, but as I put it to them, everything they were doing in the hospital, I can do at home, so I saw no point in staying in. Its now Saturday and I feel the same as I did the day I went in. My guess, is my infection is worse now than it was then and my trachea keeps blocking up. But truth be told there is little they can do. So Tuesday afternoon I made the 3 hour journey home.

Thursday morning, I then made the 3 hour journey back to London. I had been asked to attend a research meeting. The meeting was with the professor who is fronting the research and surgery into the tracheal transplant. He knows about the website I have been building for airway information and if very encouraging for it. He wants as much input as he can from myself and a fellow patient, with aims of getting other patients invovled.

Whilst in London, I spent some time with a friend and we saw, the show, the lion, the witch and the wardrobe, which was truly a wonderful production and a good night overall.

The meeting was fascinating. He is a highly educated professor and his ideas and research are amazing. The possibilities that it paves the way for in the future are endless. To think of a world, where people could go through transplant without the fear of rejection, without medication and all the problems they cause. The amount of lives it could save is endless. And to think that in 20 years time, people with airway problems like mine, would come in for one op and be fixed with no more problems.

The meeting was also very gratfying. That these professionals want my view on things, that they like the work I have done and value my opinion. I like that I have given them things to think about and ideas that they may not have had before. Again the future possibilities. In future times, it could be a job that combined many of my skills in one go. Nursing, medicine, computers, design. The scope for progress is huge and the thought that lil old me could be part of such a huge amazing thing, is truly mind blowing.

But there is always a flip side to these things. I now know a lot more about the research, where it is up to and what it entails. And in short, its a long way off. They are applying for grants now, from the time they get the grant, to the time patients will begin benefiting from treatment, is a minimum of 18 months, but as research goes, probably a lot longer.

In all respects, 2 years isnt that long, it will probably fly by. But when I think about the last 2 years, they have been very long, very hard years and they have taken a huge toll on myself, my family and my friends. And then I think of the last month. The last month has been harder still. They cant keep my body free of infection. The only way I can think to give a general idea, is for people to think back to the last time they were sick, a time when they felt sick enough to go to a doctor and be put on medication to cure it. Well, that is how I feel, but its not a temporary thing, its living with the thought that, things are going to carry on like this for the forseable future.

Infection drains you, it puts your body into fight mode. When you awake in the morning the first thing you think about is pain, when you go to sleep, its the last thing on your mind, be it lungs, joints or neck. Through the day, you feel permantly tired. I could and have last week, slept for 20 hours a day, with no problem. Even showering becomes a dreaded task as it just takes too much energy. And the other problem with infection, is that it always gets worse. The meds become less effective, the symptoms get harder, it just takes so much out of you.

Where is this going. I honestly, dont think that I can make 2 years like this. I feel like I have run a marathon and not the energy to go on. Truthfully I dont want to die. I want to be independant, I want to see my niece finish school and go to prom, to college, to uni. And every time I look at her this weekend, I just want to break down, the thought of not seeing her reach those stages is hard. I love her so much it hurts sometimes.

I had contact with my surgeon today, on a Saturday and everything, he really does go above and beyond his duty, I am so thankful for him, he is one of the good guys. I have an appointment with him at the end of the month and, in his words, we are going to discuss all the possbilities for keeping things comfortable. I guess then, we shall decide how hard to fight from now on in.

And between now and then, I am going to enjoy all the hugs I can get and have all the fun I can mange. And I will savor every moment of it, because every moment is prescious and everyone is special.

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