A couple of months back my consultant here in Gloucester said” I’m referring you to the Brompton – see if they can think of anything to do”. Encouraging or what?
So the appointment was for last Thursday, Aug 30. Be there at 9:30 for tests they said.
It’s 112 miles away, and the Paralympics are on, and I can’t walk at all well without my electric scooter so we decided to drive up the previous day, and stay over an extra night to recover. So my wife & I booked & paid for two rooms for two nights in the Brompton Nurses’ home.
Oxygen? I hear you say. Well, the receptionist at the Brompton said no problem, 2 months ago. And yes, you are on the first floor but we have a lift.
When I checked ten days before the appointment it turned out that Air Liquide had to supply the oxy (4LPM) but nobody had told them.
Yes, they were quite happy to do it – a full size concentrator plus a large emergency cylinder to London (plus 3 little ones to my surprise), plus an Igo portable 3LPM portable concentrator to my home for the car because my little portable tank only lasts 2 hours or so. But please can we have a fax from your Gloucester consultant.
Have you ever tried to get two NHS hospitals to communicate? Eventually we got the fax to AL, and bless their cotton socks they did just what they said they would – rescued!
When we got to the Brompton on Wednesday ( & boy have they got an efficient and helpful parking dept thank god!) the oxy was in the office, waiting. The lift to the first floor was a lot older than me, lattice gate and concertina door, did not meet the floor of the hallway, had to go up to the second floor and then down to the first, and keep the button pressed or it will stop between floors. And too narrow for my small scooter.
So, painful walking to and from the car over the entire stay. And have you ever tried to sleep with a concentrator? At 2:00 am I turned it off and switched to the cylinder - it just lasted until 7:00. But no chance to stay for that second night. Food at the hospital restaurant (curry, curry and lasagna) not appetizing so we found a delicious Argentinian restaurant in Chelsea Farmers Market - & no mention of the Falkland Islands.
The people at the Brompton were very pleasant & helpful, (they offered me hospital oxygen but forgot to give it to me) and the signage was efficient so we could find our way round, tests all carried out but quite tiring, food very sparse. Everything reasonable until the consultants’ clinic where the morning clinic ran into the afternoon clinic and the organization crashed.
So what was the result? A medical assistant asked the questions and relayed the answers to the (overworked) consult who nevertheless spent quite a long time with my wife & I - & gave us more information than anyone before. He explained that they have 2 research procedures aimed at neutralizing bad lung tissue & giving good lung tissue a helping hand. Unfortunately I don’t have any good lung tissue.
So when I pressed him for a timescale he said “well, years rather than decades” – a more optimistic answer than I expected – I didn’t expect to buy any Christmas cards this year. So I can plan things better, I’ll take advantage of the respiratory rehabilitation, and it’s one day at a time and make the best of each one.
Well, we gave up the idea of dinner with some friends on Thursday cos I hadn’t had my 15 hours plus of oxy, cancelled the second night’s stay, and my wife drove home cos I was exhausted.