This is a temporary blog until my new one has been fixed.
I started writing my blog to share all parts of transplant good and bad. Now I've come to a new chapter it's time to share again. I've been told I have chronic rejection and I need to undergo radiotherapy and fundo operation (but I'll talk about the fundo later)
Why do I need Radiotherapy? I have rejection of the small airways which basically means my airways are slowly closing up, sounds bad I know!! It's been slowly happening for a few years and I now know being put on Azithromycm and Montelukast is a sign things are going that way.
How do I know I have chronic rejection? A couple weeks ago I was at a routine 6 monthly appointment at Freeman Hospital Transplant clinic and I was told my lung function had significantly dropped and they wanted to do a Bronchoscopy to see if I had rejection. I had no chest infection, my X-ray was clear and I was feeling good although a lot more tired than usual. I remember driving down with Dave and going on about how I really hoped it wasn't because my face would blow up again from the steroid treatment, when they told me the result I wished it was treatable by steroids!! Alas it's the scary kind of rejection that freaks you out to your core.
How did I get chronic rejection? I honestly don't know, it just happens! Your immuno's stop working as well and your body starts to reject the foreign body within it.
How will Radiotherapy help? Basically as my immunosuppressant medication isn't working well enough to suppress my immune system I need something else to lower it more and this is what the radiotherapy does. They focus the radiation on my lymph nodes and bone marrow to get this lower level of suppression. This will hopefully stop my lung function dropping anymore. It won't go up any but if it works it will stabilise me at around 48% lung function which I can live on.
If you have anymore questions then feel free to ask me and I'll try my best to get answers for you.
Appointment 1 - 17/11/2015
I met the consultant who is lovely and explained everything to me. We spoke about the fact that I had a holiday booked and she very kindly said she would try to see if she could move my appointments forward so I could go. She gave me my next two appointments and sent me on my way.
Keep a look out for more updates.
