I Have My Life Back (Thanks to HHT CoEs & New Advancements)

I turned 57 this year – which is a particularly meaningful milestone for me. It’s the same age my father passed away from HHT complications in 1991.

Even still, I wasn’t diagnosed until several years later. I had nosebleeds, but they didn’t seem excessive. I could tolerate them just fine – they were more of a nuisance if anything. It’s a story you often hear with HHT patients – “it’s just nosebleeds.” I want to share my story because, as I so very well know now, this disease is so much more.

Fortunately, my wife had access to the internet at work and discovered the then-HHT Foundation and saw there was a conference coming up in Chicago. We decided to go and see what it was all about – and that’s where we learned it was time to take this seriously.

I ended up getting diagnosed at Yale by Dr. Bob White, after much back and forth with insurance. I had been screened and the major issues had been ruled out, and I still only had minor nosebleeds. My journey continued to be pretty uneventful until late 2019, when I started to seek help for ever-increasing nosebleeds.

Then in 2020, I hit the wall. Several bad nosebleeds led me to the emergency room three times for transfusions and iron before I could get to an intervention. Life had turned upside down. I was shocked at how quickly it fell apart. I have a full time job, but my passion is playing guitar. I am in several (4) successful bands locally, and I am frequently called to fill in for others when needed. I’ve played all my life, and had worked hard to finally play with some of Baltimore’s finest musicians. How could this be happening, I thought. I was forced step back and try to get the bleeds under control. I also couldn’t go to work.  As it turned out, three nose procedures did not work for me. The struggles continued for more than a year. I thought life would never be normal again!

Eventually, I was started on Avastin infusions last year. And it truly has turned my life around. My hemoglobin and iron levels are in the normal range again! I have returned to work and am able to perform again! I have my life back.

Earlier this year, I went to the HHT Center of Excellence at Johns Hopkins. Gina Robinson coordinated the testing and visits. I can’t express enough how appreciative I am of the hard work from Gina, Dr. Galiatsatos, Dr. Weiss, Dr. Rowan and Dr. Morefield. You have given me my life back.

I also want to thank everyone at Cure HHT – if not for you, I may never have reached this point.

I’ve been told June is HHT Awareness month. I share my story because treatment options vary so much from patient to patient. Getting to a Center of Excellence who really knows this disease is so key to getting the right help. So is being knowledgeable about this disorder. So many doctors do not know HHT – which makes self-advocating vital.

I must admit, the last 2 years have been tough. But family and my care team have been great support. To all HHT patients out there – especially to those just finding out about their journey – I’d want to say that there is reason for hope. New advances are coming!

1 Comment

  1. Judith Jefferson on July 26, 2022 at 6:00 am

    How old were you when they started getting worse

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