So in the last month whilst I have been away, my long awaited appointment with Dr Gall happened. It was a long drive down to Orpington in Kent, to the Princess Royal University Hospital but to be honest it was quicker than getting into London to Kings College and so much easier to park.
Once I had been checked in and weighed by the nurse in charge, she explained my appointment would be approximately 45 minutes long to discuss the results of all the tests I had gone through last year. I was nervous and not feeling great still in my depressive state, so although hubby was with me, I was very distant with him.
I was called in and Dr Gall was sitting in scrubs, I was surprised as usually you meet your consultants all suited and booted, and he was ready to go and perform surgery. He was warm and friendly and we started to talk about my history, my diagnosis of Ehlers-Danlos and Postural Tachycardia. He then went through the results of the tests that had been performed, he confirmed that I was tachycardic, however on the TTT it wasn’t evident as postural, but that was probably because I was now on Ivabradine so it was doing a good job. He asked did I feel it was working, I agreed it was bringing my heart rate down somewhat, however my blood pressure was still low, causing me issues. He asked if I had tried Midodrine and I explained I had once previously but had experienced problems but would be willing to give it another go. The other tests showed lung capacity issues and he suggested some further testing and physio for that, which he would refer me for.
We then talked about other issues I had been experiencing, the bladder retention and he said he knew someone who would be able to help and he would write to my GP and ask for them to send me to her. He really did bend over backwards to help me out.
I explained I was already under Professor Aziz for my Gastrointestinal issues and he was extremely happy with that, and I was at the Stanmore for my Ehlers-Danlos, so nothing more could be done for that care, he just felt the specialist care for everything else needed to be kept on top of. I liked that, he was the top of his game, this is why I had waited this long.
As I left his room, we agreed on a course of action and a follow up appointment would be made once everything had been completed, so he is now my PoTs consultant and for that I am really happy, no more shoddy treatment. Yes it means I have to travel but it means I get the best care possible, thank god for the NHS !!