Outside of visiting a Porphyria Specialist, for formal diagnosis, and my new AIP Clinical Study participation... I have been at a disadvantage in securing a long-term medical provider to manage my health needs. The providers that I have approached know little about AIP and do not seem to have the time to invest in learning (even with printed material distributed at office visits). This has been a particularly difficult dynamic for me...knowing more about AIP than the professionals I put my life in the hands of...well...it provokes fear, insecurity, and anxiety. I continue to politely offer educational information...I keep a current Personal Health Record (Formal AIP diagnosis letter...copies of all recent lab/ imaging results...relevant medical history documentation and professional AIP educational literature).
This particular new patient visit was different!
Dr. M knew quite a bit about AIP!
Dr. M educated me on the nuances of the disease and offered long-term medical collaboration.
Dr. M's AIP Liver Surveillance Plan entailed:
1. MD office evaluation Q6months
2. Blood work Q6months
3. Liver Imaging Studies Q6months (Ultra Sound Q12ms/ alternating with MRI Q12ms)
4. Eventual Liver Biopsy to determine cell status/ level of disease impact on liver
5. Scope to assess Gluten Intolerance and Poor Vitamin Metabolism/ Absorption
6. Long-term collaboration and disease management support
7. If ever necessary... due to AIP related cirrhosis or primary liver cancer... a liver transplant
8. The option to receive the monthly Panhematin treatments (recommended by Mount Sinai)at his facility, under his medical guidance.
At the close of my appointment I became moved by the new found sense of medical security Dr. M had provided me.
I am so very grateful to be blessed with Dr. M as a knowledgeable new member of my health care team!!!
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