Evening everyone 🤗
Thank you for your kind support.
After the hospital ordeal, I went to Les Halles de Paul Bocuse, it’s a market. There was a fish bar, I had a sole, two small glasses of white wine, and a tiramisu. I enjoyed every bite and sip!
Opposite there was this mural painting of the chef himself. He passed away I think.
Anyway I had a mixture of good news and more tests to come.
First my LAM is stable. It will not worsen because I have passed the age, I am not producing oestrogen anymore. However my lungs are already full of cysts, literally made of cysts blocking my airways so I have to take care. I will always have breathing problems, it’s not asthma and it’s not an inflammatory disease. I should never have been given so many steroids.
So because I now have adrenal glands insufficiency as a result, it is upsetting my immune system and I tend to catch more viruses etc. I must be treated promptly. It is not having a temperature which is an indicator of infection , it is the mutation in the mucus, such as change in thickness and colouring. That means I must take the rescue antibiotics which he gave me ( Yesssssss). Two alternatives. And I must do regular respiratory physio and nasal rinse.
Regarding the rare bird only a fibroscopy would show if I am colonised or not, he doesn’t think it is worth to take that risk presently, I should take the antibiotics and see if I feel better.
Also he is referring me to a consultant endocrinologist, a colleague of his in Lyon so he can evaluate this adrenal glands insufficiency and give me the right medication. He doesn’t think Prednisone is the right one for me.
I also have access to the rare respiratory medical team now. If he is away and I am unwell I can call his secretary and one of his team will see me. Because I explained I can’t count on anybody here. I mean Echinacea and Zinc have their limit^^
So how did I feel? Reassured in a way that I am getting and will get support. Plucking courage to come back here see another consultant and embark on another investigation and treatment.
Nighty night. Keep well.