All systems go!

After the last couple of months passed so slowly waiting on funding decision, it's suddenly all systems go!   I met the ECP team on Thursday - the nurses were so lovely and reassuring, so I am starting treatment on Monday!  It will be 2 consecutive days ever 2 weeks for 3 months  - then review response (ie. what lung function is doing) and might be every 2 weeks for another 3 months, or monthly.  It was a bit unclear at this stage because I will be the first lung transplant rejection patient to go through the unit, so the protocol might vary to that for other conditions.   The good news was that because i will have permcath line the process should be much faster than expected - possibly only couple hours (plus the setting up etc) - we shall see on Monday.

I think I understand the process a bit better now.  Essentially they will take out blood, which goes through a machine (looks quite like dialysis).   The blood is centrifuged (spun) to separate out the white cells (immune cells).   They collect a small amount (about 4% circulating cells) and put the other blood components back in to me.   A photo-activating drug is then added to the white cells and UV light is applied (this is all in the machine) - this process will damage those T cells (specific type white cell) and they will die off once back in my body.   The damaged/dying cells trigger the body to eventually release specialised T regulator cells.    These cells are responsible for managing the immune response - they get things under control and dampen down inflammatory processes.   It is thought that people post transplant with rejection have low levels of T-regulator cells - which means the immune reactions towards the transplanted lungs can go unchecked.   The theory is that by increasing these T-regulator cells you can slow down or  stabilise the immune reaction against the lungs.   Since it is only affecting a very specific cell, then it doesn't affect the other immune cells required to fight off infections.    So I wont be more at risk of infection, which is excellent.

The process normally involves putting a wide bore cannula in one arm to remove blood, and another in the other arm to put it back in at same time.   My veins are barely good enough to get blood samples at the best of times.   So this is why I need the permcath.   I had this put in yesterday.   Essentially they make incision in neck to feed tube into jugular vein, to direct access the heart chambers.   The other end is tunnelled under the skin for a few inches (this reduces risk of getting infected) and pops out again on the chest wall (few inches under clavicle) and stitched in place.   There are a couple of access ports at the end - one for blood in, and one for blood out.   It was put in under local anaesthetic and the procedure itself was ok, but it was much sorer than I expected afterwards!   The tube is thicker than I had imagined (my previous ports being very narrow tubes in comparison) but it should settle down and in a couple of weeks be more embedded.   I will have to be really careful it doesn't get pulled out, or infected - Estelle has been warned not to touch!!   She is very interested in the whole thing and has asked to  inspect it several times already.   It's a bit cumbersome but should be ok under my clothes and will make the whole process easier.

I feel nervous about starting - not about the procedure but more about my response longer term.  We wont see any instant changes and can take few months to see improvements/stabilisation.  There isn't a lot of data around but some studies have shown up to 50% people responding, so that's a good chance.   I am unsure about how long effects last (if it works) and what top-ups might be needed.  Will just need to go with the flow and see how things progress.

I am planning to keep working in between.   They said it can make you more tired - particularly for 24hrs after, so I don't plan to go to work the same day as sessions.   I will just have to see how I feel, but hopefully be able to function reasonably normally!

I'll update once treatment starts!

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.