Friday, 14 December 2012

The trials and tribulations of PUVA

Well here I am again, as some of you will know I have been having PUVA treatment on my psoriasis recently, so far I have had 10 sessions and thought I would write my 100th blog......yes I know, amazing isn't it? For someone who doubted she had anything to say I have rambled, moaned, teased and informed my way to 100 blogs!
Anyway I digress, I was talking about PUVA treatment wasn't I?
PUVA stands for......oh I can't be bothered to look it up, yes ok naughty I know but I am feeling that way today, it's light therapy.
My dermatologist was close to confirming me as a lost cause when he offered this as a 'last resort'
it is performed in a private hospital that is 40 minutes drive away from us and at my first visit I was warned I was possibly looking at 20+ sessions at two a week.
So, first visit was also an assessment of my suitability to have this treatment. The nurse looked at my hands and my feet, I did offer to show her the Psoriasis under my boobs and the patches on my legs and in my ears as well but she declined my kind offer and the reason became clear when she wheeled in the machine they use to deliver the light's like a box on a crane type thing that can be lifted up and down, no way would my boobs go in there!
There is apparently a cabinet that you strip off and stand in if the skin condition they are treating is on your body but apparently they wouldn't even consider such a thing for a person whose skin only has to see the sun peeping through the clouds to turn a fetching shade of red.
This was why I was warned my treatment would take so long, she studied me for a minute and then declared me paler than a skin type 1, apparently there is no number on the scale less than a 1 so I suppose I must be a -1 by their definition.
The week before this first appointment we had dutifully gone to our local hospital to pick up the cream/gunk that was a necessary part of this ritual.
The nurse had me sit on the bed/couch in a cubicle and hubby took off my boots and socks ( as you will see later we got around this problem)
The nurse frowned when she saw the jar of gunk ' oh typical' she said ' they never gave you the lotion, this takes so much longer to do'
This stuff had to be painted onto the areas that were to go under the light so the nurse placed my hands on a pillow and my feet on a towel and then produced the smallest paint brush imaginable, you know those you get in kids sets of paints? Well that was the size of it, she painted the area that had psoriasis on it which is practically all of the soles of both feet and palms of both hands.
I sat there watching the paintbrush on my feet thanking god I wasn't ticklish, when she got to my left hand we had another problem as that one is bent up with arthritis and won't open or lay flat and trying to get the brush between fingers that won't move was fun. The patient nurse chatted to me between sighs as she lamented the fact I hadn't been given the much more practical lotion and suggested she e mail the consultant to ask for such a prescription for me, I was happy to go along with whatever she thought was best.
Once painted we had to wait for half an hour for the gunk to be absorbed, I had noticed another woman in the waiting room drinking coffee that I now understood was having the same treatment and the nurse said that normally they would send us back outside to wait and have a cuppa etc but as my feet were obviously out of action for the next half hour I would have to stay there so I amused myself by giving Trevor the wrong answers to the crossword he was attempting to do and watching the clock on the wall opposite the cubicle.
After half an hour the nurse returned and set up the machine, apparently it's run on joules! As I understand it electricity is amps etc this machine is joules, well anyway these joules need to be worked out very carefully along with the time you are exposed to it or nasty things can happen.
So it came about my hands were stuck into the box and the tops and bottoms were cooked for 12 seconds.....WHAT? all this for 12 seconds I hear you ask, yes that's starting off slowly and cautiously apparently.
Cue same for feet but just soles of feet, tops not blasted as they could burn. Should mention here that is exactly what did happen to tops of hands after 6 sessions so only palms of hands being cooked now too.
Oh yes and just to mention here that you are provided with a rather snazzy pair of goggles to wear whilst under the machine as your eyes have to be protected from the radiation.

Fast forward the next few sessions as they followed the same pattern although the time was extended a few seconds each time, oh and also we had decided to save the palaver with boots and socks I would wear slip on sandals that I had stopped wearing when I became so unsteady on my feet and fell over a couple of times wearing them so now I clung to Trevor on each visit.

A week or so later they had been successful in getting me a prescription for the lotion (much easier apparently) however when we picked it up from our hospital they gave us a leaflet with it that explained the procedure for using it and it was completely different to what the nurses had told us and had been doing so cue more delays and problems that I might add had them threatening to write TROUBLE at the top of my notes while they checked it out.

Sorted and now we could do a 15 minute soak of hands and feet at home and use the 40 minute travel time to the hospital as the absorption time and then just needed to be in the hospital for the actual light bit. Great eh?
We bought two bowls and then promptly discarded one as it meant having my elbows up round my ears to have my hands soaking in it, we replaced it with a baking tray, inventive aren't we?
The other bowl sat on the floor for my feet and the baking tray on a little table for my hands....Sussed it.
Trevor carefully measured the hot water and the lotion to go in it and there I was, stuck with hands and feet in water for 15 mins.
Enter a very curious cat and dog......
Molly (puppy) sniffed at the water and ignored my plea for her to leave it alone as she stuck her nose over the edge of the bowl, I splashed my feet hoping to scare her away but no, a new game eh?
Meanwhile I caught sight of Bobcat preparing to jump from the coffee table onto the table where the baking tray took up all the room, I flicked water at him and he retreated only to try creeping up from the other side.......
Trevor had gone outside to clear the car as it had been snowing the previous day and although that had cleared enough for us to be ok getting to hospital it had frozen on it overnight.
The animals had me captive for that moment, unable to actually move and shut them out of the room and determined to investigate what this new game was.

Now when you take hands and feet out of the water you must not rub them dry, you can pat off the worst of the water which I did before slipping my still damp feet into my highly unsuitable sandals.
As we got to the door I realised just how much fun this was going to be today as the ground was icy and here was I in sandals.
Trevor hung on to me, half helping half carried me to the car and at the other end he had to do the same to get me into the hospital, people must have wondered at this daft woman in sandals coming in from the snow/ice but hey, I was born to be different.

I have now had 10 sessions and should be half way through but was told at the last session it was more likely to be closer to 30 sessions needed for me, we have reached 3 minutes under the light at this stage so we are progressing slowly but surely. Have I noticed a difference? Not yet but I live in hope as ever.

- Posted using BlogPress from my iPad


Miss Benefit said...

"Have I noticed a difference? Not yet but I live in hope as ever." Gosh... Hope it works out in the end but what a palavar!

What initially sounds a tedious and easy process now has the makings of a carry on film.

Cheers to Trevor A real hero.
Muted cheers to you for keeping your chin up through all this.

Ron Graves said...

Penny, next time, tell the staff you need a wheelchair transfer from the car, and back to it afterwards.

There should be no problem arranging that.

I was going to say just in bad weather, but that would get too complicated.