Hello BLF friends,
Hope you are doing well 💐
Some news and thoughts to share.
Full blood work and injected MRI for that enlarged pancreas on Thursday. So fingers crossed 🤞
As for when I found out about LAM, by chance, after continuous chest infections through a CT scan, I have found about this through another thoracic CT scan after a bronchitis and pleural effusion.
I wanted to tell you I had 2 genetic tests, like mouth swabs, to see how my metabolism reacts to pharmacology. It was called test Cypass. I had read about it and asked for it. It is not reimbursed because it is preventative medicine so I paid 300 Swiss Francs.
Well I thought it could be worthwhile as my “filter” organs seem to be affected by the amount and type of meds I take.
Undoubtedly the liver, kidneys, and pancreas now are suffering.
I have liver cysts due to medication, I have an adrenal glands insufficiency due to steroids and now my pancreas is enlarged by 35mm..since the last CT scan so in 6 months, well except if they hadn’t spotted in January.
I must tell my LAM Sis 🌸 reading this that I am not on Sirolimus so it can’t be that and I don’t want you to worry, we all react differently.
I have had a lot, a lot of antibiotics for the last 40 years, a lot of steroids for various chest infections etc
The other point of this test is to find out which medication actually fits you best.
So we’ll see.
I remain quite confident and positive. I think we need to be vigilant without letting it taking over our lives.
I feel grateful to be in shape at 66 despite all those mishaps. I believe that the well-being approach, naturopathy, and mindfulness meditation have personally helped me.
I am lucky to have retired 4 years, time is of value.
Wishing you lovely summer days 🌻