Here are Clive’s legs undergoing pressotherapy or mechanical lymph drainage for his Stage 5 Lymphedema.
A pump air-fills chambers in succession, creating a sort of wave motion up the leg.
The main result so far seems to be that he has to go to the bathroom multiple times in the night leaving little room for sleep.
Clive has very blue eyes which sometimes excite comment, but the rehabilitation doctor who came yesterday has eyes literally the colour of speedwell.
This was her fourth visit; now we won’t be seeing her beautiful eyes till after Easter.
The offer of a physiotherapist has been tacitly withdrawn. We don’t think it would have been relevant either, given especially how inflexible they tend to be.
Clive’s main problem at the moment is a swollen and painful left knee, due to a horrible combination of arthritis and lymphedema. The doctor suggested anti-inflammatory medicines which we were already using, and approved our infra-red lamp.
Clive continues to push forward, but it’s a difficult balance between healing and advancement.
The photo shows our drive in November, wending away from the house.
A year ago to the day, with the help of two friends, we drove up it on our way to Britain for Clive to have treatment for his lymphedema.
He didn’t come home for more than 9 months. When he did return, almost 3 months ago, he was deposited on the sofa, unable to walk. He still can’t walk – can’t even get on his feet – and his world consists of everything he can see from that sofa.
In the next few posts, as I follow the anniversaries of those fateful few initial days, I’ll recount how it all came about.
We certainly are in the wars as a family. Following on from Kepler’s eye, Clive has a lymphedema infection.
He has stage 5 lymphedema (the severest) and almost anything – an insect bite, a knock, a sore – can spark off an infection. In this case it’s his thigh that’s affected.
The local infection is accompanied by a high fever – 40 degrees Celsius last night although it’s been up to 41 degrees in the past.
He’s taken antibiotics and paracetamol and just has to sit it out. There isn’t the infrastructure here to help any further.
Thank God for the Olympics. It’s the perfect thing for him to sit in front of right now.
From the Lymphedema Clinic where he is now, Clive has just written a short book about lymphedema, and what it’s like to suffer from it. It ain’t fun; I can vouch for that.
He’s published it as a Kindle book on Amazon.
The cover shows his jeans-clad leg when he was 21, contrasted with his leg as it is now.
Continuing our quest for treatment for Clive’s severe lymphedema problem, I spoke to the horse’s mouth of the E112 rejection – a Professor in Perugia Hospital.
This professor promised to speak to the female doctor in Terni whom he had recommended. He phoned us back and reported that she would do her best to bring forward the appointment from the end of April. We should phone her again.
I finally got hold of the female doctor. I gave her some more details about Clive and she decided that it would not be right to ‘make him come and go’ as an outpatient.
She referred me to her esteemed colleague in Rome who has some beds at his disposal.
I eventually reached this doctor today. He will examine Clive as an outpatient initially. We should make an appointment – he gave me a phone number – to see him in a few days’ time.
I phoned the number he’d given me. An outgoing message announced there would be a wait of approximately 16 minutes. Meantime the speaking never ceased. An Italian, an English and a French voice took it in turns to tell me they were trying to deal with my call, and every time round there was a noise as if I was going through so that I was continually leaping for the microphone. (I made the call via Skype; I would have gone insane if this had been on the mobile.)
Finally a woman answered.
Name? Is that a surname? Can you spell it? (The initial letters of Italian cities are used for spelling out words.) First name? Is that a first name? Can you spell it? Date of birth? Place of birth? Fiscal code? That can’t be right. There are more names. Why didn’t you tell me there were more names??!! We’ll have to start all over again. Second first-name? Can you spell it? Third first-name? Can you spell it? Date of birth? Place of birth? Fiscal code?
There were 2 or 3 repetitions to check the whole fiscal code, and some confusion as to whether I was the wife or the husband, or whether I was phoning on behalf of my wife or my husband (she got quite ratty at this point although my voice is clearly female).
At long last the offer of a date – a month hence. We had to put it off a week more because the timing on the earlier day would have meant we got back from Rome well into the night.
The photo, which is of a ruptured lymphedema ulcer on the back of Clive’s lower leg, shows that time is not on our side.