Monday
Cure HHT Webinar: Liz and I sat in on a Cure HHT webinar last night entitled "Ask the Doctor: Virtual Meet-Up". The webinar was facilitated by two docs discussing and offering information about the dual diagnosis of HHT and Pulmonary Hypertension (PH). In reviewing the introduction to the webinar, Dr.Olitsky stated that about 70% of HHT patients have AVMs on their liver and there is a link between liver issues and PH.
The docs identified the difference between PH and PAH, the signs of PH, its relationship to HHT and info about the Pulmonary Hypertension Association. PH is progressive, so once it is diagnosed, there are treatment choices but it doesn't get resolved or "cured". It turns out that I have three of the five indicators of PH: fatigue, shortness of breath, and decreased exercise tolerance (The two I don't have are a sometimes fast heart rate and fainting).
The primary beginning assessment for PH is through an Echo Cardiogram, which I have had with Dr. Wozniak in the past. Based on some findings of that, further diagnosis is through a Right Heart Catheter, which is a more complicated procedure.
Based on attending this webinar Liz and I decided on the following beginning plan: 1) give Dr Wozniak (cardiologist) all the information from this webinar to add to his thoughts about my heart valve disease; 2) find out if there is a relationship between water retention in my ankles and PH; 3) send the info on the link between liver AVMs and PH to Dr. Wells, my hepatologist.
Oh... and June is HHT Awareness Month!
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