Belated Happy New Year

I didn't realise it was quite so long since I last blogged!  I didn't do my usual year in photos summary - largely because this blog is currently open (i.e no sign in) so I think its best not to share personal photos :)  It was also hard to sum up the year - 2018 was quite hard going treatment wise and I spent the entire time just praying for my lung function to stop dropping!  I did still have a good year though - some lovely family holidays and the ongoing privilege of watching Estelle flourish and thrive!

I had a review appointment a couple of weeks ago and the results were a bit disappointing, but could have been much worse.  My lung function was down again, but less of a drop than it's been for a while.   Over the past 18 months it has dropped on average 100ml per month (at most 200ml and the least being 50ml).  This time it was a 40ml drop.   So this is hopefully a sign that radiotherapy has done something!  However what I need is it to stop dropping altogether, and the doctor was concerned it could be an ongoing trickle down.  We decided to change one of my anti rejection drugs to see if that could suppress the immune reaction a bit more - so far it's making me quite nauseated but I am hoping that will settle when I get used to it.   The doctor also wanted to enrol me in the trial I had mentioned before I started ECP.  Although I might be on the placebo, I don't really have any other options just now so it's worth a go.  I also believe that after the 6 month period, I could get the active drug for a year.  It's a drug used in pulmonary fibrosis to reduce the lung scarring - which is also part of the chronic rejection process, so may be helpful.  I'm willing to do anything to stop the decline!  In order to assess suitability I need a lung CT scan (done today) and bronchoscopy, which I will get in few weeks  - and also will get further lung function at that time.   So it's back to the waiting, hoping and praying for better results next time.

In the middle of this we also discovered the radiotherapy had induced an early menopause (as ovaries are near the radiation field).  I was glad to get this diagnosed as have been feeling pretty awful and wasn't sure what was going on!!!  I feel a lot better on HRT, which I will need to protect bone health..as well as my sanity!

I'm still not back to work yet.  I had hoped to return after my most recent appointment, as I had been positive it would be a good result.   As several tests needed done I have decided to stay off until these are completed and hopefully I have a better idea of what's next.   Physically I am definitely improving from the radiotherapy - I am less tired than pre-Christmas and generally feel better, although do feel more breathless on exertion now.  Mentally, it's hard to be in a constant state of uncertainty, while watching my lung function dwindling.  I've had much lower in the past and know I will somehow cope if it keeps dropping....but you get used to the amazing feeling of normal lungs after transplant and that's hard to give up.   So I want to get back to work, to feel more normal again....but I am so acutely aware that if my lung function keeps falling, then work will become very difficult to manage.   I know I will need all my energy and focus for Estelle!

I don't have any new years resolutions - why burden myself with extra tasks!  What I hope for though, is a return to normality.  To have stable lung function, to not worry constantly about what's going to happen next, to be back at work, to have something more interesting to talk about than health!   I don't want an exceptional year, or an exciting year or a year of great achievements....I just want a boring, normal, no drama year!!!