Good news!!

My CF doc phoned this morning to tell me I have been funded for my ECP treatment!!!!!!! The best news I've had in a long time!!  Brought a wee tear to my eye...

The funding is for 6 months initial treatment - this will establish if I am a responder e.g lung function stabilises.   If I am a responder then I will probably need 'top ups' and we can apply for further funding if this is needed.   If I am not a responder then at least I have been given this fantastic opportunity and wont have that awful feeling that I never had a chance at this treatment.

I don't know the details of when this will start, or exactly how often (generally its 2 x 5hr sessions every 2 weeks).  It will be in Glasgow, so much easier for me than having to go to Newcastle.  The ECP doctor will contact me to make the arrangements but I do need to get venous access sorted before we start treatment.  I have poor veins (years of being prodded!) and they aren't good enough for the treatment, so I've to get a permacath (most commonly used in dialysis) put in before we can start.  This will be a less permanent version of the portacath I had for most of my life pre-transplant, so I'm not worried about that.  It might be bit annoying having tubes dangling about my person, but a small price to pay. 

I really needed this wee boost, as have not been feeling great since I last blogged.  It turned out I did have the parvo virus and it's taking ages to fully clear.  I was unwell with flu like illness last weekend, so not sure if it was re-emergence of parvo, or another virus, but I've been really tired since.  I am slowly recovering and ended up taking last week and this week off work.   I realised I haven't actually had to ask the GP for a sick line since my transplant, so I must never have been off more than a week since then!   I hate staying off work as feel like I am letting patients down when I cancel appointments - however I know this time I did need to just try and stop for a while and get on top of this and hopefully I will be back to better health just in time to get started on this next journey.

I will post again once I have more info about when I can get started with treatment and what it will entail.     For now I am just so relieved that I am being given this chance.