Wednesday, November 23, 2011

Just keep your head above.

I have said it before and I say it again, I love this time of night.
I love the quiet, the stillness and the chance to relax with nothing that needs doing.
I could easily put my headphones in right now and just space out for an hour or so.
Or swap my night and day completely.

Things are changing, I can feel it. Change is in the air so to speak, though I am not sure how yet.

I am readying a book at the moment, that has really bought a few things home to me, in terms of life and sustainability.
I do already make the most out of the time I have, when I can. I know that the future is unpredictable as is my breathing. I hope it improves, but I also know it can worsen. But more so, the book kinda highlights the problems associated with being transplanted young. Admittedly its a positive book and such ( I will give more details when I finish it but right now I am savoring it) but it does also bring up the subject of the longer term effects of the immunosuppression, which I have always thought comical that it includes both Liver and Kidney failure. Dont get me wrong, compared with the dying if not transplanted, its nothing to worry about. But a lot of people view transplant as a cure.

More so, it is swapping one set of problems for another. There are complications, you have to look after yourself. You avoid certain things and you have to become defensive of your health. Most health professionals know very little about transplant, so you have to guard yourself. Check every medication wont interfere with your rejection levels, make sure none will damage your live. Be on the look out for infection as it needs treating quick. Organ failure is only one effect of the medication. Last month in clinic in Leeds, I was talking to a lady who was being treated for skin cancer due to the medication. So, when your docs tell you to wear sun cream, even in the winter, do it! Especially when your med levels are high. But dont let any of that put you off, I reach 9 years next month!

I found my ICU book today, though I have not opened it yet.

I was reading back over my blog yesterday as I needed some dates for paperwork. Its amazing how much you forget over time. When I look back, at days when I crawled the stairs to bed as I was to tired to even have tea, I forgot about them days. They were back last April, when they missed me off the list for laser. I fear that is where I am heading now. I am just 4 weeks post surgery and done from 300 to 130 on my peak flow. I have no appointment till January. I am not sure what I do from here. Part of me wants to see how long I can last, so I dont have to keep traveling and going through the pain and energy required. But another part of me also dosnt want to be to exhausted that I dont see Christmas and that I cant help out during it. I also still play back the whole, I dont want to waste peoples time if I can go longer.

But this is also my life and I need to live it. I still havnt posted about the possible excitement, and I cant yet, as I have had to put it on pause, until I know if this downward bit is going to level off.

I have gone back to using my neb mask during the day. I run my regular nebs through the mouth piece as I get more, but then, when I am running a load back to back, I switch to my mask so I can tolerate it longer. Tonight I am experimenting. I have added some nebs to my humidifier. I am hoping it helps. Last night, for the first time in a very long time, I woke in the middle of the night needing to run a neb. I hope this is just a rough patch, as right now, it feels like it is taking a heck of a lot to just keep my head above water.

Here is to tomorrow. When things will hopefully look up. And when I should have some news on the front the next few months.

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