Thursday, 28 July 2016
Having this chronic rejection diagnosis was a real kicker. Despite all the positivity there are moments during my treatment when I honestly sat and thought this isn't going to work. This is it. I'm only human right? There are always moments of doubt, these moments are well justified. How can I have faith in something that didn't work for me before?
Radiation described to me the first time as a hammer to crack a egg. Well I was left truly scrambled! The side affects were awful and I was left feeling very ill indeed. Just over a week ago I was having crappy temperatures, full of flem, very breathless and generally feeling weak and tired. I had come home from Harefield after finishing radiation, thinking I could just jump back to life where I left off and that wasn't the case. A couple days later I went into Exeter hospital and start Iv antibiotics. They worked extremely quickly in making me feel much better!
I'm now back home and finishing of Iv antibiotics. Iv taught a few lessons but there is much rest inbetween as the radiation side affects still linger. Iv had over a month of doing little to nothing. During the couple of weeks of radiation I spent with my head in a sick bowl or asleep. I lost nearly a stone of muscle and my legs to me looked thin and weak. My legs are always one of my body hang ups, when my body's working hard it eats my leg and ass muscle first and I end up with pancake butt. This reminds me of when I had painfully thin legs and I had to learn to walk.
So the next few months for me are all about wellbeing. Mental and physical. Rest + exercise + good nutrition + work + hubby time = a well balanced happy Kirstie.
I still don't know if radiation has worked to hault the chronic rejection. My lung function is still going down but it takes some time to plateau. I'm told it won't go up but just stabilise if it's worked but Iv also heard some people did get some lung function back.
Now I'm back home in feeling much more like me, happy, hopeful and looking forward to a holiday in Florida in September which my DR gave me the all clear to still go ahead with.