I think seeing Extracorporeal Photopheresis (ECP) makes it much easier to understand. I really hope this video is useful to anyone else who may need this treatment in the future - check out the big needle too!
The point of this treatment is to cure my chronic Graft versus Host Disease (cGvHD). I have around a 50% chance of it working - but I remain worried.
PS. It's been really hard convincing people that this condition is actually pretty serious!
I was back in the Sheffield hospital today for a check-up and to monitor the steroid treatment.
If you remember it's the steroids that are stopping my new immune system from attacking me at the moment. The idea is that ECP 'trains' my immune system to be more tolerant.
I was on a huge dose of a steroid called Prednisolone. To begin with it was 165mg a day. Today it has been reduced to 75mg. I'm still OK but already there are very slight areas of dry/red skin appearing. It's only very subtle but it's enough to trouble me.
As you've probably gathered the last month or so has actually been great fun. I've had some great times - that I have appreciated every second of - won awards, been out with friends, and despite a massive face and rather odd head hair, I have made the best of it.
I have also started working from home around my treatment.
The steroids have made me feel lots better and after the last year I can't tell you how good it's been being able to drink and eat like I used to. I also feel that you owe it to those who haven't been as lucky as I have to make the best of the good times you are given.
But I've always known that if the ECP doesn't work there is going to be a crunch time probably early in December.
Staying on steroids is not an option. They are stopping your immune system from working so you are at a high-risk of infection. They can also do crazy things to your body and mind.
Living with cGvHD long-term can be pretty unpleasant too. Symptoms can range from a bit of dry skin to your joints seizing up reducing your mobility. It can also spread to other parts of the body, like the mouth, making life very uncomfortable. It can affect vital organs too causing death - I'm so tired/bored of death!
Some very kind people have been in touch with the blog and let me know about their experiences. Clare let me know about a GVHD mailing list at www.acor.org. I have had a quick look today and I think it will be really useful.
I have always believed I am going to survive this episode. I have much less confidence in my quality of life being restored to normal.