Update to say there is no update!

4 weeks later..

We are another month down the road and I haven't had funding for ECP sorted yet.  In fairness my CF doctor has been on the case since day one, but the wheels of the NHS can be rather slow.  The first funding port of call was a no-go, so we have now made an application to my health board.   It's a formal process with lots of form filling -the patient can add a statement and I spent an entire weekend composing this.  These applications are discussed at a monthly meeting....and unfortunately we just missed this months meeting, so I don't expect any news until April.  Quite a few people have asked me if I can fund this privately - the answer is that I don't know, and wont know until this process has been completed.  If there is no NHS funding, then I will definitely be fighting to fund this myself.  Having now spent time reading various medical studies, I am convinced this is the best chance I have to stay alive longer.   Not everyone responds to ECP....but my type of rejection is the one that tends to respond.....and this could slow decline and improve survival, without putting me at risk of serious infections.   It's a fairly intensive treatment but would be worth it if I was a responder.

In the meantime my ENT appointment was cancelled because of the snow!!  So no further forward with that yet and not sure when it will be rescheduled for.

Estelle has had slapped cheek syndrome (parvovirus B19) -  it's a common and mild childhood illness - however can be more complicated in adults, especially if immunosuppressed.   We think I might have had this as well - I've not been feeling great for a couple of weeks now.   I have had muscle/joint pain, mild fever and exhaustion.  The fever is gone but I am so tired all the time!!   I suspect the whole emotional strain is playing it's role of course.   I've had some bloods taken so we can see if that's the cause.  I'm glad I wasn't having radiotherapy because these are the exact risks I am trying to avoid by pursuing ECP.  I can't expect Estelle to stay away from me when she is not well - it's just not possible!

I am back in Newcastle at the end of this month.   I know my lung function is down a bit again (measured locally) but I was expecting that.  I am trying to stay positive and keep living life as normally as possible, but it's hard when I don't know what's happening and feel very out of control.  I'm hoping that I will get some news about funding within the next month though, then maybe we can move forwards either way.   I will update when I know what's happening myself!