Sunday, 20 February 2011

It's been a while...

I wanted to wait to post on here so I could share how I spent Christmas at home and various bits and pieces in the media to thank my donor and her family that I was here to celebrate Christmas. I managed to spend Christmas at home with my parents and we had a good day. And you don't know how lucky I feel to be able to type that sentence... In another household somewhere in the northwest a family was experiencing a different Christmas, their first without their daughter. A reality that my parents were facing so we made sure it was special and lit a candle for her.
From boxing day, on what seemed to be like a downward slope I started to become unwell. By the time I started spiking temperatures (which I thought were just a result of having the flu jab) on New years eve I was tired, not eating or drinking anything, being so sick I couldn't tolerate my peg feed even being carried upstairs was to much. I spent most of my time asleep as that was my only escape from the breathlessness I was feeling. My "I can't do this anymore" moment came on bankholiday Monday I was readmitted to the ward and they found, thankfully, there was some infection in the lungs. I say thankfully because something can be done about infection, its treatable. My infection levels came down very quickly and antibiotics were stopped after just over a week. Skip forward a while and its looking like my lungs have developed some sort dependency on IVs, I start IVs, feel better and infection levels come down, I get back on my feet, IVs are stopped, I feel rough again and have to restart IVs. I'm also having trouble coming off IV steroids, I come off them, I'm okay for a few days then I just can't catch my breath have a dose IV and I'm okay for another few days. It's crazy and so frustrating. At the moment we're working on my oxygen, I've become dependent on highflow (why do I feel like I'm in here picking up bad habbits?!) at the moment I just can't get my breathing right and feel comfortable for long peroids of time on anything less than 50litres. That is a big problem. They are able to deliver 30ish litres maximum in the community and that is at a push with 4 highflow oxygen concentrators hooked together. I don't know what's going to happen yet or what I'm going to do but I'll keep you posted.
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