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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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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2 comments:
great blog! i'm following now :)
i just had a transplant seven months ago in toronto.
how have you been doing? still fresh i guess, when did you get transplanted? did you have your three month assessment?
http://icecreammaplesyrup.blogspot.com
Hey hunny
I am delighted that you were able to enjoy xmas day at home and yes, I know that the joy is juxtaposed with the sadness felt by your donor family. You continue to soldier on hunny and no one will ever truly know just how much you experience except you. But you being able to share some of your journey means so much to so many...you deserve evry award going as far as I'm concerned :-) Love and dove always xx
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