I realise I mention it a lot and most of you are aware of it as a treatment that I have, but very few of you really know what it actually is.
Since March 2010, I have been travelling back and forth to Rotherham every fortnight (then every three weeks, then four weeks). It was mainly to treat the GvHD in my skin, with hope that it would help with my lungs but there wasn’t a massive amount of evidence for that at the time. We went to Rotherham because that is where they are the experts in this country, and we didn’t have the facilities in Birmingham. We do now, and I have transferred to the QE team. I was having the treatment using the central line I used to have in my chest, but last year, the line started misbehaving and acting like a blood clot, then it cracked, and it was decided that in August it would come out, and I’d have my remaining photopheresis sessions using my arm veins, as I only had about five left that were to be spread over eight months or so.
However, in September, my liver started playing up and I got stuck in hospital and was incapable of getting to Rotherham for treatment. The plan then became to transfer my funding and have me carry on at the QE, but it just sort of fell by the wayside and I didn’t have any treatment until I brought it up with Ram at clinic and he got it sorted for January this year. I had my first treatment, then we went back for my second one a couple of weeks ago and the nurse I had just annihilated my veins, so they’re putting another central line in on Thursday. Had the GvHD not flared up in my mouth in November, I wouldn’t have had to go back on steroids, and I probably wouldn’t have had to restart this, but here we are.
Here is some information about photopheresis:
The patient is attached to a machine using either their central line or a vein. About a pint of their blood is drawn off and centrifuged. The red cells and some of the plasma not needed is immediately returned to the patient, and the leukocytes and plasma required are isolated for further treatment. Once the leukocyte-enriched blood is collected, a drug called Uvadex is added to make the T-Lymphocytes more sensitive to UV light and therefore promote the death of diseased cells. When the Uvadex is photoactivated (all this happens within the machine), it binds with the DNA of the cells to prevent further replications, leading to loss of cell viability over several days. The damaged cells are then returned to the patient, which is thought to generate an increase in immune system activity, thus encouraging the production of healthy lymphocytes.
So that’s it, really. Two days attached to a machine (although with a line, it’s about two/two and a half hours max) where they do fancy things to my blood. Still don’t know how the Uvadex works but it does. My skin is grand. I’m nearly off the steroids again. It doesn’t hurt, it doesn’t make me tired; it’s really very dull. But that’s what it is.
That’s why I needed it.
That’s a machine.
That’s my last line. R.I.P.