What the HHT?

A Voice for the HHT Community

Here We Go Again: Follow-Up for a HHT Patient

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By Janice Jones

I’m starting all over again with the poking and the long needles, and the fasting before blood work is taken, and the MRAs, MRIs and CTs with and without contrast, and so on and so on and so on…

Unfortunately, this is the life of a person who deals with HHT. Regardless of how I might be feeling, it is crucial I follow-up annually with tests that are consistent and thorough to ensure arteriovenous malformations (AVM) aren’t forming in my lung, liver or brain.

This is quite demanding, even more so since I have had a lobectomy due to an AVM that had blocked oxygen and blood flow in the middle lobe of my lung. Therefore, thorough follow-up and follow-through is pertinent.

More importantly, having the right medical team that understands the disorder and isn’t regarding the patient as a learning and teaching tool and a has an understanding of the disorder is of vast importance.

I’m currently transitioning to other medical care, which has been highly recommended and has a specific department with a team of doctors who deal with the unique symptoms, research and treatment of HHT. Thus far, I have been fortunate enough to converse with experts on the disorder who have shared recent research findings and can explain what is happening to me efficiently. I’m not being regarded as another anemia patient. I’m being viewed and treated in a holistic matter with respect to HHT.

This is all wonderful, yet there are still exhausting processes that must be followed to ensure my care, diagnosis and treatment are complete. To aide in this, I’m sure to keep detailed notes, ask as many questions as possible, present as much as I can about my family history, make appointments on time as much as I can, be patient, be open-minded, negotiable, and willing to work at it and through it with the physicians and staff.

It does become very tiresome, and to be honest, being handed a magazine like folder with paperwork to fill out, orders for scans and imaging, medicines, physician referrals, and insurance information made me want to go running and shouting with dread!

However, I’m focusing on the big picture-my care is not just helping me. One day I will not have to be involved with these appointments because a cure for HHT has been discovered.

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