Just a few years ago, I was a 48-year-old sales manager and an owner of a large, successful manufacturing company. I was always in great shape, and when my partners and I decided to obtain disability insurance, I was rated the #1 best for my health at the time. But 3 weeks later, a “time bomb” –that doctors had completely missed–would go off inside my body.
It happened like this: one day as I was preparing to go on a business trip I began to feel unusually tired. I needed to be on my “A” game for this trip, so I decided to postpone it for a day and stay in bed to catch up on my rest. The next morning, my wife Babette checked on me before leaving for work and she thought I seemed OK. After she left, I got up, showered, and started to get ready for the trip. My nephew called me a little later, and as we were talking he said, “What’s wrong Uncle Keith?” I remember telling him that I didn’t know what he was talking about, and he said to “hang tight” and wait for him to get back to me. Then, my business partner called, and we had a similar exchange. The next thing I remember, my wife came home from work and took me to the hospital—where we found out that I’d had a stroke!
In the next few days, I went to three different hospitals and had numerous tests. My stroke was ischemic–due to a blocked blood vessel in my brain. But since I had no known risk factors and was in excellent health, the cause of the blockage was mysterious. During all the testing and examinations, doctors discovered that I had two AVMs (arteriovenous malformations) in my lungs. AVMs are malformed blood vessels, where capillaries are missing. The capillaries normally filter clots and other debris from the blood—but an AVM can allow a clot to pass through and travel back to the brain. It’s not something most people would think of, but the stroke in my brain was caused by AVMs in my lungs. My neurologist consulted Dr. Mark Chestnut, from Oregon Health and Science University (OHSU), and they diagnosed me with a rare genetic disorder called HHT, or Hereditary Hemorrhagic Telangiectasia. I was sent to OHSU to treat the AVMs in my lungs with a procedure called embolization. I learned that because HHT is genetic, there was a 50% chance that my children could have it—and that one of my parents must have it, too. And yet no one in my family ever knew about HHT!
HHT can cause AVMs (or telangiectasias which are small AVMs) in the lungs, in the brain, liver, nose, and GI tract, and on the skin where they appear as red spots. The most common symptom of HHT is nosebleeds, but AVMs in the lungs or brain, which usually cause no symptoms, can suddenly cause an ischemic stroke, a brain abscess, or bleeding into the brain (hemorrhagic stroke) or lungs. Liver AVMs can lead to heart failure and bleeding in the GI tract can cause severe anemia and the need for blood transfusions. Only about 10-15% of people with HHT know they have it. But when HHT is properly diagnosed and treated, most of these life-threatening and disabling events can be prevented.
Although I was the first person in our family to be diagnosed with HHT, many more followed. Like many people with HHT, most of us were diagnosed as adults, years after our first symptoms (the average time from first symptom to diagnosis is about 30 years in HHT—which is why awareness is so important!)
After my stroke, my mother was determined to let everyone in our family know about HHT. She was diagnosed at age 69. My uncle was tested and diagnosed at age 68—and once it was discovered that he had HHT, on down the line it went—to my cousin and my cousin’s little girl Natalie. Before we knew about HHT, Natalie had many nose bleeds–but everyone thought that was normal. When they finally diagnosed her with HHT, doctors discovered bleeding in her brain from an AVM. She went through a major surgery at age 4 which saved her life.
My daughter Chantel has HHT, too. She suffers severe nose bleeds each week. She had a high-risk pregnancy during which she had to have AVM’s in her lungs embolized to prevent a stroke or lung hemorrhage while giving birth. She now has two children– one has HHT, while the other does not.
My stroke recovery progressed slowly and steadily, but not without some bumps along the way. Babette had to stay home with me for a few months after the stroke, and it took quite a while before I went back to work on a part-time basis. But I found I was struggling to remember things about the business. I needed to use my disability insurance income because I was not able to work full time. So, after much effort and hard work to get back in the game, I was forced to leave the company I had worked so hard to grow. Fear and depression began to take a toll on my attitude, which had always been positive and upbeat, no matter what problems we had encountered. I began to think negative thoughts…What good am I now? How will I support my family? Will I get any better? How long will it take? On and on…I wondered if moving on with my life was going to be worth it.
But one morning, with tears flowing down my face, my focus shifted, and a new thought came to me: I can overcome this! I can make a difference in the world! I can still be a husband, father, grandfather, and friend. I can help make a positive impact on others and make a difference. That’s when I got the idea to work with others who’d had a stroke and/or HHT.
First, I started a self-help program for other stroke survivors. I interviewed other people who’d had a stroke, and after quite a bit of time, determination, and do-overs, I understood that what they truly wanted was help in re-building their self-confidence. I created a web-based program, Strength after Stroke (https://strengthafterstroke.com), and developed the BASE (Belief, Attitude, Strength, and Energy) curriculum. My mission is: “Helping those that want to regain their confidence, are willing to work toward understanding and overcoming their personal challenges and feel the need to improve their own lives.”
Second, I became involved in raising awareness about HHT. At a recent HHT Patient and Family Conference, I shared my story of how a stroke lead to my HHT diagnosis. I want to share my story to inspire others with HHT to get proper screening tests and treatment, to tell their families about HHT, and to prevent strokes and other complications of HHT.
Maybe the cause of your stroke was never found. Do you have frequent nosebleeds, red spots on your skin, or anemia? Has someone in your family had these symptoms—or an unexplained brain abscess or lung hemorrhage? Are there multiple people in your family who have nosebleeds? If any of these are true, you may have HHT. Finding out if you do—and getting proper treatment—could be the key to preventing another stroke.
For more information about HHT, visit www.curehht.org
Keith Taylor is a business man, stroke survivor and creator of the Belief, Attitude, Strength and Energy (BASE) self-help curriculum. To learn more visit his website https://strengthafterstroke.com/.
Special thanks to Sara Palmer, Ph.D., a retired psychologist, Cure HHT Board member, HHT patient and author of Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia for her help with this blog.