A few points from me. I'm sorry that you have that condition. On the other hand delighted to hear of your positive health position from a man of 78, your an inspiration to all. Well done mate.
Now on with another story that I'm reminded of after reading your post:
I knew a man who was a regular visitor to St Vincent's in Melbourne for many many years. He had one of the immune related diseases. He too was used by the specialist for training new doctors. He was known and admired by all at the hospital and i must say a very humble and likeable old fellow.
One day he was taken to the emergency room of another hospital by an ambulance in a lot of abdominal pain, and subsequently diagnosed with a bowel obstruction.
He was moved to the gastrointestinal ward where the doctors and nurses visited him, medicated him for pain and put him on a drip and no food diet. To his surprise these on-ward quacks started talking to him about a colostomy bag. He was medicated, frightened and begging them to talk to the specialist at St Vincent's because he believed his current condition was related to his immune disease and needed to be assessed and treated differently. The doctors didn't listen to him and just kept insisting that they would need to operate in days if it didn't right itself. Saying things like 'You don't understand you are in a very serious situation and an operation will save your life, if we don't you will almost certainly die'
His wife contacted St Vincent's and asked to speak to the specialist he had been seeing for years, the doctor he felt very comfortable with. She got as far as reception person who discussed it with the doctor and rung her back saying 'The specialist understands what's going on and the local doctors are working with him now, there isn't anything he can do" and that was it.
The wife then tried to get him moved to St Vincent but could not make it happen.
She subsequently spoke to some friends and found a good alternative private hospital and moved him at their cost to that hospital. He literally walked out the door in the hospital gown got dressed in the car and went to the new hospital. On arriving at the hospital they declared they wish to be admitted as fee paying and were asked if they had a preferred doctor they declared the specialist but he was not on their lists so they provided a suitable substitute.
The end of of this story is approx. $13,000 AUD in care for out of pocket expense and no operation. We will never know if the first hospital would operate or not, but when you speak to him, he was certain.
One can draw the conclusion, ER's we do their best to help everyone but after that you better choose your medical treatment. Public hospitals need to move people on, they assess on the bases of averages, and they derive their income from the government at a fixed rate and importantly hospital beds are in short supply. Come into one of these places of business as a public patient and you are at the mercy of a government influenced profit system, and you know the government isn't paying much. At least when you are paying your way you wont have some hospital administrator thinking your taking up a valuable revenue generating spot.
Lastly, as for doctors and friendships, forget it. It's a professional relationship and never anything more. They cant afford to get attached to patients and have an endless supply of new meat coming in the door.
So either buy insurance or have access to funds and someone that will ensure you get the care you need.
Just my thoughts in response to your request for thoughts, Good luck for your next ten years mate.
Cheers