Ray Klopotek’s debilitating nosebleeds would happen suddenly and without warning. Although he was always prepared and carried supplies, he couldn't always stop the bleeding and was forced to make frequent trips to the emergency room.
“I was afraid to go out. I never knew when it was going to hit me and I would have to leave an event or a meeting. It was embarrassing.” Ray said.
A referral to University of Minnesota Physicians, Ear, Nose and Throat specialist Holly Boyer, MD, changed his life.
“Dr. Holly’s procedure has given me hope that I can spend time with my friends and family without fear,” Ray said.
Suffering and frustration
Hereditary Hemorrhagic Telangiectasia – or HHT – is an inherited genetic disorder that occurs in one out of every 5,000 people. It causes abnormal blood vessels in the skin, mucous membranes and organs like the lungs, liver and brain. Bleeding in the nose and digestive tract are common symptoms.
Ray learned he had HHT at a very young age. Growing up, he had occasional nosebleeds, but he could control them. Then, as an adult, he began to suffer very severe nosebleeds – some so bad that he would pass out, need to be hospitalized and receive transfusions.
Over the years Ray saw several doctors and received the typical treatments for nose bleeds, including cauterization and laser surgery, both of which were painful and provided only temporary relief.
By the time he received a referral to Dr. Boyer, he was frustrated and discouraged. Although skeptical that she could help him, Ray thought, “What have I got to lose?”
Collaboration and innovation brings hope to patients
Dr. Boyer and her colleagues at UMPhysicians had developed an innovative procedure for treating HHT based on schlerotherapy—a common treatment for varicose veins. Thinking outside the box, they wondered if this procedure could be applied to the compromised vessels of HHT patients.
Using a very fine needle, Dr. Boyer injects a solution into the abnormal vesselthat coagulates the blood and scars the vessel from the inside out. The procedure requires great precision because of the size and sensitivity of the blood vessels. While the procedure is not a cure, Ray has fewer nosebleeds and they are not as severe.
“In the past, appointments with HHT patients were tough because the condition was so difficult to manage,” Dr. Boyer said. “Now, it is great to see these patients because this new procedure has been life changing for them. They’ve gained control and they’re so happy.”
Dr. Boyer has been performing the new procedure for HHT patient since 2008; her results are good with no serious complications. She is currently running a clinical trial and plans to broaden the reach of this treatment in the future.
More confident every day
Ray has follow-up visits every six months, or comes in when he needs to – before he takes off for Arizona in the winter months, for example. Because the procedure requires an Interventional Radiologist to help Dr. Boyer guide the injection, appointments need to be coordinated.
“The clinic staff and nurses are always so helpful in making sure I can get in when I need to,” Ray said.
Before his nosebleeds began, Ray had a busy social life and served as a leader in his community. However, the sudden and violent nature of his condition was very isolating. He has been seeing Dr. Boyer for two years and is feeling more confident about getting his life back to normal. “I lived with the fear so long that I still feel tentative about gatherings and social events. But it is getting easier,” Ray said. “I am just so grateful I was referred to Dr. Holly.”