Hooray!
So far so good, but I'm still very weak and still suffering from dry eyes, mouth and skin (all symptoms of GvHD), so further treatment is necessary,this time in the form of ECP, Extra-Corporeal Photopheresis. Try saying that with your mouth full, or on second thoughts probably better not.
ECP involves taking blood out of the patient (that's me), separating out the white blood cells, exposing them to UVA light and then putting them back again.
I had my first dose of ECP on Thursday afternoon and the second on Friday morning. Thursday's was preceded by the insertion of a Hickman line in my jugular vein in the morning to facilitate cycling the blood through the machine.
Not a particularly pleasant procedure, but at least relatively painless (with anaesthetic of course), especially compared with last week's cauterisation trauma. And Dixie very kindly stepped into the breach (which Julia couldn't cover for once), took me to St Thomas's early and stayed until the ECP had begun in the afternoon. Friday's was much quicker and I was back home again only about two and a half hours after leaving, so that's pretty good. I then slept for 15 hours on Friday night, so clearly it took it out of me a bit.
My general weakness is attributable to the long-term use of steroids apparently, so the dose is being gradually reduced week by week with no ill-effects so far. And I can still drag myself up the stairs, so no need for temporary beds or portable loos again yet. Long may that last!
Meanwhile, I'm still on a cocktail of other drugs to prevent various infections or complications from arising, but they seem to be working in that respect, so I have no complaints there.
As for my eyes post-cauterisation, they still need plenty lubrication in the form of various drops and have a way to go to recover fully and allow constant comfortable use. They tire very quickly, so reading for more than a few minutes is still out of the question unfortunately and I have to keep them closed a lot of the time which doesn't make for a very exciting life.
Julia has been and remains a Tower of Strength, Dependability and Love,
despite the fact that this whole ordeal has bee as much of a Trial for her as it has for me, if not more so. She is constantly juggling her responsibilities both at home and at work in order to support me, and any offers of assistance from Friends and Family are always very welcome with both of us, from a Flying Visit to an hour or two spent just Being Here so that Julia can escape the Yoke for a little while.
On the spiritual front too, all that rope-pulling you've been doing
appears to be paying dividends, so please keep it up!
Its weird isn't it that someone worked out that if we put a line into some one's jugular like this their blood won't come spurting out. When is the moment when you think Okay lets try it.
ReplyDeleteCan't you imagine a gaggle of doubting Thomas-es and one cocksure Hickman and what about all the unrecorded Hickmen who were wrong.
Medical science is the stuff that worked there must be an awful lot of unmedical science that is quietly forgotten.
There you have my Thought for the day well, actually it might be my thought for the month. x
I like your thinking, Dixie.
DeleteAnd the blood DOES indeed come spurting out! But happily not until you turn on the tap on the end of the Hickman line first. I guess it doesn't spurt out when they put in the line in the first place because it's a tight enough fit in the vein. And the tap's turned off too of course.
But I still like the idea of all those would-be Hickmen in medical history who didn't get it right first time....
I am more preoccupied by all the victims of the Not-Quite Hickmen. They certanly go unrecorded. How often have you seen a tombstone with the inscription: 'Here lies our George who died during a medical experiment!' Or even: '... who died making Dr.Hickman famous'?
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