Well, we did it. Pete, myself and our daughter went by train to London to visit the Brompton, wheelchair and all. The doctor there was very nice and discussed Pete's problems. She thinks the sarcoidosis has long since burnt itself out but Pete now has to deal with what is left behind. He has copd and heart problems. He had an ecg, x-ray and echo and his heart is a bit "stiff" and also is beating irregularly.
We did talk about his back being in dire need of sorting out at Southampton and the doctor was in agreement about that but they want to do another MRI scan. The problem is it means another trip to London, plus then having an overnight stay at some point for a PET scan and then in 3 months time seeing a sarcoidosis specialist (Mr. Wells) who Pete really should have been seeing years ago! It is all too much and we may well have to arrange some sort of transportation that is not a train.
Things went downhill when we had just left Victoria and had a message over the loud speaker to say the train would be delayed because their had been a fatality sadly at Streatham Common. We did eventually get on our way after nearly an hour so didn't get home until 7pm having caught the 8.23am train! Pete was beyond tired, in extreme pain and had had enough. Never again! We can either get someone to drive us or get Hospital Transport hopefully.
I now have to get on to Southampton again to fight Pete's corner to get this spinal cord stimulator fitted. Wish me luck everyone.
Take care all xxxxx