Lymphedema Clinic

At 1:00 am the Croce Bianca (White Cross) arrived to pick us up in what they call a ‘pullman’ – the Italian word for coach, but it’s in fact a sort of minibus.

The vehicle we travelled in

This transport is provided to patients who are being treated under the Italian Health System (in our case through Clive’s E112) who would have difficulty going by other means.

We drove through the night, drowsing uneasily, and by the time morning came we were in the mountains.

Snow-covered mountains

By lunchtime we’d reached Sankt Blasien which is where the clinic is – an attractive town, very neat and clean. It was obvious it had snowed a lot; there were great heaps where it had been cleared back. I later heard they’d had 60 cm.

Clive was examined straight away by a doctor, and I stayed on well into the evening.

The evening meal was served at the unhelpfully early hour of 5:30 pm. The patients arrived in dribs and drabs from all directions, up the stairs and down the stairs, limping and staggering. It reminded us so much of a scene from ‘The Walking Dead’ that we got the giggles.

The hotel was a breeze to find – for everyone except me. It was very dark and the streets were practically deserted. Fortunately I came across a charming lad sweeping snow in front of his house. He spoke very good English (he told me he was top of his class) and he conducted me via a shortcut right to the door of the hotel.

Vescia again

This morning we managed to change doctors in Valtopina ASL, quite painlessly, and went to the surgery in Vescia for a second time.

On the right: entrance to the Vescia surgery

The timing was perfect in one sense because late last night Clive discovered a lump under his left arm. He was able to get the doctor to examine it and she confirmed his fears that the lymph node was swollen.

She prescribed a strong antibiotic and a special cream, and told us to come back in a week’s time to see if it has reduced in size.

She also took names and phone numbers of the various characters involved in the lymphedema treatment and E112 saga, saying that she will phone them when she has a moment.

We’re very worried about the swollen lymph node because it can spell all kinds of trouble, but at least we don’t feel quite so alone any more.

Lymphedema part 2

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.)

Clive's lower leg

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.

Another brick wall

More happy bashing

Today I phoned the female doctor in Terni who does lymphedema treatment.

Speaking brightly, she booked us in for next Friday and then described the clinic’s location.

We looked on Google Maps. When the photos were taken, there wasn’t a single parking space on the one-way streets near the clinic. There is, however, a little car park right next to it.

I phoned back. Unfortunately they aren’t allowed to use the car park, but if I phone ahead (while driving) and hover outside the clinic, someone will come down and escort Clive up in the lift while I go to look for a metered space.

It suddenly hit me that we’d booked a private appointment rather than a National Health one, so I phoned a 3rd time. Still the bright voice, but as soon as I told her the situation, we went from ‘red carpet’ to ‘wipe your feet before you come in’, as Clive put it.

I phoned Terni National Health. We must book through a Pharmacy and no, they have no idea when the first appointment is.

I phoned Valtopina Pharmacy. They can’t make the appointment because, although our chit says ‘lymphedema treatment’, it has the wrong department name on it. (I’d heard ‘angiology’ as ‘oncology’ and since that didn’t make sense, our doctor had insisted on putting ‘phlebology’.)

In fact the Pharmacy weren’t sure they could make the appointment at all, seeing as it was Terni, but if I went in they would see.

The Pharmacy eventually found Terni National Health on their computer and checked the next available date for me: 26th April.

Back at home I phoned the doctor in Foligno hospital who had ratified and supposedly supported Clive’s application for intensive treatment in Germany, hoping for some advice. He couldn’t disown us fast enough.

I phoned the administrator in Perugia who had communicated  the rejection of Clive’s application for the E112. He advised an appeal on the basis of waiting-time.

We’re now pursuing a possible change of family doctor as it’s imperative that we have proper advice and backing from someone who is supportive.

“And another one just flew over,” says Clive.

Lymphedema

The notice reminds patients that smoking is forbidden in the surgery

I went to see our doctor today. He had a cigarette alight throughout the consultation despite the notice on his door. (I sneaked a photo of it with the mobile phone.)

The main reason for the visit was to ask for a referral to a certain female doctor in Terni who does lymphedema treatment.

Just before Christmas, Clive applied for an E112 which would have allowed him to have intensive in-patient treatment of his lymphedema in Germany, something which has been accorded him twice before, and which he is supposed to have at least annually. We heard last week that the application has been refused. The previous ratifying surgeon has retired and been replaced by a new doctor who just seems to have looked up lymphedema treatment in Italy on the internet.

The provision he found, which consists of an outpatient clinic attached to the oncology department of Terni hospital, will almost certainly not give Clive the help he needs, but Politics requires that we pursue it.

Returning to our doctor: he informed me that he was unable to give a referral to the Terni clinic. We have to make an appointment with a phlebologist (because lymphedema comes under the heading phlebology) and ask him for a referral – a prolonged 2-stage affair. I later found out that the earliest appointment we can get with a phlebologist is May 31st.

This is, of course, no good at all. The female doctor gets back off holiday next Monday so I’ll phone and see what I can do direct.

The whole thing is a bitter blow.

Clive’s experience of lymphedema