When is it more than a Nose bleed?
Nathan Brown
Husband to a HHT Warrior| Father| Investor in People and Technolgy | CRM Evangelist | 4 Star Ranger | Tulsa Salesforce Group Leader
The moment my wife and I found ourselves on our bathroom floor, surrounded by tissues and blood reminiscent of a crime scene drama and our faces etched with panic, was a stark awakening to the severity of her condition. This journey alongside my wife, who is one of the 1/5000 people currently battling with Hereditary Hemorrhagic Telangiectasia (HHT), has been an odyssey. One of worry, discovery, and personal growth. For those who may be reading this and are unfamiliar, HHT is a condition characterized by abnormal blood vessel formation, which forms blood vessels that lack normal capillaries between an artery and a vein, casting a long, dark shadow over our lives and introducing several challenges far beyond "fatigue".
The connection between HHT and Anemia revealed itself starkly one December day, through the kind of severe bleeding episodes that are a hallmark of HHT, but often dismissed by others as inconsequential. Whether it is gastrointestinal or relentless nosebleeds, each episode drains those battling this disease, leading to iron deficiency anemia. Without medical intervention, the body simply can not keep up with the loss.
Watching as a husband, feeling powerless as fatigue and weakness steal away the vibrant spirit of the woman you love, is indescribably hard. Observing her battle with shortness of breath, seeing the change in her skin color, and feeling the chill of her hands are constant reminders of this uphill battle. Yet, outside in she battles on with a smile and the heart of a warrior.
We like many others in this community have explored every avenue for remedy, Liquid Iron has become a staple in our home, which is surprisingly palatable when mixed with orange juice- a tip for those navigating similar paths (and a possible hint to manufacturers about some possible flavor options!). Iron supplements are now a part of the daily routine, and thankfully, iron infusions have begun to make a difference, though they've also added to our ever-expanding schedule of doctor's visits that shape our treatment decisions.
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The support and insights from the HHT Community have been a true lifeline. Connecting with others who are also redefining "life" in the shadow of HHT has not only provided us with invaluable resources and advice but has also expanded our circle of friends, and sense of belonging.
It's this sense of community that has inspired me to keep using our voices for advocacy, to continue to raise awareness, and to find strength in unity. As we all push for more research and funding (which you can help by donating here ) for HHT and its complications, we do so fueled by hope and the collective determination of many others on this journey.
May we all tread this path together, with grace and unwavering strength.
Medical Speech-Language Pathologist | Licensed troubleshooter and trusted collaborator | Dedicated to improving lives
1 年It’s very frustrating for loved ones when they can do nothing to help you except watch and help clean up the mess. True. Sometimes the bathroom can look like a crime scene.
Strategy, Portfolio & Product Management, Business Process Improvements, Data Analytics & Insights, Agile Transformations, Value Based Care
1 年Severe Epistaxis- for a HHT patient is truly an emergency. No, you cannot pinch it off, or hold your head back or forward. No, those nose clips provided in the ER don't work. Watching, keeping a timer going once it starts, knowing your hemoglobin levels, tracking how much it drops after each bleed, you start to understand at what level and in what danger you are at. My husband bleeds daily, some are terrific bleeds that require immediate medical intervention. Others are insidious like a leaking faucet that just add up to impact his iron and hemoglobin deficits. Living with a hemoglobin on average at 9 (normal for a man is 13.4-18) that plummets to a 6 is a thing. Knowing how to coach and help your medical providers during or after a severe bleeding episode is a critical care advocacy measure. *If ever you need to bounce ideas off of, compare notes, understand the steps we have taken in this journey, what is effective for us or not please reach out. HHT has 80 derivations and is so very rare- we encounter Drs at each pass of an emergency who have only ever read about it in a journal in medical school, never witnessed it or treated it. Knowing what works for your wife and advocating for exactly that is critical.