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Hello everyone, I'm new here and have lots of questions but I'll just start with a few.
My sister's doctor is Dr. Roland Nador in Vancouver. He's had a couple LAM patients before but his speciality is lung transplant and he works out of the Lung Transplant Centre in Vancouver. My sister has just been diagnosed but they've already given her brochures on lung transplant surgery and advised that she join a transplant support group. Is this normal?
What tests can a LAM patient expect to go through following initial diagnosis? My sister is getting worn out with all the procedures. She had a chest tube to drain chyle and has had multiple blood tests, x-rays, CT scans, MRIs and has to have an angiogram next. It would be so helpful if there was a list to refer to so she wasn't constantly surprised and worried by these tests that are ordered.
She is supposed to see a dietitian in the next couple weeks. It was supposed to be this week but they postponed it as they want her to have the angiogram first, for some reason. The dietitian is just a standard registered dietitian. Are there any dietitian type people that are specifically trained to deal with LAM, or have some experience with LAM? (My sister is on a no fat diet and has lost a lot of weight in barely 2 weeks).
I cannot seem to find out or understand why my sister's lymph nodes along her spine are enlarged. I mentioned this before (FB group) and someone said it was connected with the chyle LAM my sister has but does anyone have any more info they could send me on this..articles or...?