By Greg Bard, as told to Hallie Levine
Over 2 million Americans have severe hypertriglyceridemia. That’s a condition where your body makes too many triglycerides, a type of fat in your blood. When I learned I was one of them, I was in shock.
Up until then, I’d never thought about my cholesterol, let alone my triglycerides. My biggest concern was my type 2 diabetes. But about six years ago, I developed severe pancreatitis, or inflammation of the pancreas. At first, doctors thought it was a side effect of my diabetes medication. But when they did a little digging, they learned that it was most likely due to severe hypertriglyceridemia.
I spent the next few years in and out of hospitals. I won’t sugarcoat it: It was scary, and there were times I thought I wouldn’t make it.
Thankfully, today I’m alive and well and here to tell you that life with severe hypertriglyceridemia is manageable. In my case, it was a combination of a new medication, as well as lifestyle changes, that helped get it under control.
A Life-Changing Severe Hypertriglyceridemia Diagnosis
I was at work one day when I suddenly felt a searing pain that began in my upper left abdomen and rotated all the way to my back. It was relentless and wouldn’t ease. At that moment, I knew I was in big trouble.
I went straight to my local emergency room. Doctors were mystified. They couldn’t figure out what was going on. They chalked it up to my diabetes, gave me medicines to lower my blood sugar, and sent me home within the week. When I told them I was in tremendous pain, they told me to just take some extra strength Tylenol.
My wife is a surgical nurse, so she knew right away I needed better medical care. We ended up at another hospital — Bryan Medical Center — which ran every test under the sun to figure out what was wrong. When they drew my blood, it began to clot so quickly it was a miracle they could find anything. Very high triglycerides make your blood thick and “sticky,” which also raises your risk of blood clots.
A normal triglyceride level is below 150 mg/dL. Mine was more than 2,000 mg/dL, which is considered dangerously high. My doctors explained that such elevated triglycerides can lead to pancreatitis, a very serious condition.
The Struggle to Get Severe Hypertriglyceridemia Under Control
I rotated in and out of the hospital over the next several years. About two weeks after my diagnosis, I developed symptoms of pancreatitis again. I was three hours away from home in Kansas City, Missouri, but I turned around and went back to Bryan Medical Center. It was the only place I trusted when it came to my health.
After my first hospitalization, my triglycerides went down to 345 mg/dL. But when I returned to Bryan Medical Center I learned that they’d jumped to 9,000 mg/dL. My doctors were shocked. I made jokes about it. As a real estate agent, I constantly talk to my clients about cities with the highest scores for living. I told my medical team, “I have the highest score for living with sky-high triglycerides.”
My doctors recommended plasmapheresis. That’s when they draw your blood, remove the triglycerides, then return the remaining blood cells to your body. Mine was so full of triglycerides it dripped out of my veins as pure yellow gunk the consistency of chicken fat. It took about six hours to remove it all.
My doctors told me there was no real treatment other than to carefully watch what I eat. They sent me to a nutritionist, who recommended a very low-fat diet of less than 20-30 grams a day. I told her flat out that that wouldn’t work for what I do for a living. I constantly eat out with clients. I tried to stay away from red meat as much as I could, but you can only eat grilled chicken or fish with salad so many times.
Over the next few years I ended up being hospitalized with pancreatitis every three to six months. Each visit, I’d have to fast for a couple days to rest my pancreas, and then follow a clear liquid diet until my triglycerides started to trend towards normal. I attempted to self-treat at home a few times when I felt like I might be about to have a pancreatitis flare. I’d fast and just drink Gatorade and water for hydration.
As hard as it was for me, it hurt me more to see the effects on my kids. Although they’re adults, it was quite difficult for them to see their dad constantly in the hospital. My daughter, Kelsey, came to visit me in the ICU when my triglycerides skyrocketed to 9,000 mg/dL. She saw a gurney in front of my room with a patient in a body bag and broke down because she thought it was me in there.
Finding the Right Severe Hypertriglyceridemia Treatment
In 2023, my doctor told me about a clinical trial he thought I’d be a good fit for. It was testing a drug that targets a protein made in the liver that slows your body’s ability to break down and get rid of triglycerides. I joined the trial in February 2024 after waiting a few months to recover from another bout of pancreatitis.
I was lucky enough to be randomized on the active drug, although I didn’t know it at the time. The researchers involved in the trial measured my triglycerides every month, but they didn’t share results with either me or my doctor. Still, about three months after I enrolled in the study, my doctor pointed out that I hadn’t developed another case of pancreatitis.
In fact, I haven’t needed to be hospitalized since I started taking the medication. I had one scare when I drank alcohol while on vacation with my wife. The study coordinator called my doctor alarmed because my triglycerides had suddenly spiked. Alcohol can raise your triglyceride levels, so people with severe hypertriglyceridemia are told to avoid it completely.
Life With Severe Hypertriglyceridemia
I’m very lucky to have been able to lower my triglyceride levels by changing my diet and taking medication. My triglycerides are usually between 135 mg/dL and 165 mg/dL, which is within normal range. My wife and I eat out most days of the week, but I choose healthier options such as grilled lean meats and salad with a light vinaigrette. While I once loathed all vegetables, now I’ve found that I like them a lot more. Occasionally, I’ll order a steak or pasta once a month or so.
A silver lining to my healthier lifestyle is that I’ve lost about 60 pounds. I’m not able to be as active as I’d like because I have neuropathy in both legs from my type 2 diabetes. But I am able to go on walks and play with my grandkids, which I think is the most important thing in life, frankly.
I’d advise anyone recently diagnosed with severe hypertriglyceridemia or who has a loved one who’s been diagnosed with it to make sure that they talk to their doctor about all the available treatment options. You’d be surprised how many people are out here with elevated triglycerides, even if they aren’t as high as mine. I referred a former client to my clinical trial. He was approved to enroll and experienced similar results.
Once you get severe hypertriglyceridemia under control, the results are worth it. I feel so much better than I did just a couple years ago. I no longer drag myself out of bed to get to work. I have more energy, whether it’s for my clients, my wife, or my grandkids. I feel good about myself, and the fact that I’ve embraced a lifestyle that works for my body.
