A man is on a recumbent bicycle engineered to allow the rider to lie facing forward controlling the four wheels using their arms and hands in a kneeling position.

Living With High Altitude Pulmonary Hypertension: An Interview with Karen Terrell

by Jennifer Wolfe, NP-S

During my last week of a clinical rotation at Ebert Family Clinic in Frisco, Colorado, at 9000 feet, I was thrilled to have the opportunity to interview high altitude resident Karen Terrell with physician Dr. Chris Ebert-Santos.  During this time, we were able to discuss high altitude pulmonary hypertension, also known as NAPH. This is a condition that Karen has been living with since 2015.  NAPH is condition that can affect people that live above 8,200 feet, more than 140 million people live at this altitude worldwide, including the population of Summit County, where the town of Frisco, Colorado is. Pulmonary hypertension is a group of disorders that will typically be diagnosed during a heart catheterization measuring the mean arterial pressure of the right side of the heart.  These disorders are broken down into five groups. High altitude pulmonary hypertension is in group three. The primary symptoms that people first notice is extreme fatigue, difficulty getting air upon exertion, and difficulty engaging in their normal exercise routines.

How long have you lived in Summit County [Colorado], and where did you move from originally?

Karen: I grew up in Nebraska, I moved to New York City as soon as I was old enough to leave home.  I went to Boulder for school, and then moved to Denver for work.  I went to an Outward-Bound Experience, and I fell in love with this area.  I have lived in Summit County over 37 years. My kids were born and raised here; they are now in their 30s.

What are some of the things that you love to do in area?

Karen: I downhill ski, I uphill ski, and I cross country ski.  Mountain biking is my passion. I downhill bike, that is where you take the gondola to the top of the mountain and then ride your bike down.

When did you start to have symptoms?

Karen: 2015

What were the symptoms that you noticed first?

Karen: Extreme fatigue and erratic pulse, with or without exertion.  By the end of a run, I would be so exhausted that I was practically crawling home.

Do have to go on oxygen at any point?

Karen: In 2018 I started using oxygen at night. I still use oxygen at night.  In 2020 I started riding and skiing with portable oxygen. When my oxygen columns fail, so do I. It was also during this time I began to work on nasal breathing night and day.  I have been doing research on the importance of nasal breathing and retraining the body on how to take in oxygen.  Practicing nasal breathing is especially important when you are using a nasal cannula to get oxygen when you are being active.

An image of the OxyGo FIT portable oxygen concentrator with specifications.
https://oxygo.life/oxygo-fit

Dr. Chris Ebert-Santos:  The standard is “if you’re 50 and you’ve lived here 10 years and you want to live here for another 10 years you should be sleeping on oxygen.”

Between 2015 and 2018 did you have any other symptoms or worsening concerns?

Karen: In 2017 I applied for life insurance.  I was denied as I had what I now know is chronic proteinuria. The nephrologist was perplexed as to why someone who is as active as I am and takes no medication is having this condition.  The insurance company essentially told me that they would not touch me with a 10-foot pole.  This was the “canary in the mine” that made me think something was not right. In 2018, I had a cardiac ablation. The cardiac ablation corrected the erratic heart rate and relieved my extreme fatigue. However, it did nothing for my oxygen saturation.

You mentioned in 2020 that you started to ski and ride your bike with portable oxygen.  Did something happen in 2020, besides COVID?

Karen: You know, with everything that I have going on health wise I have been so cautious that I have not ever had COVID. In 2020, I was at an office visit with my PA. I mentioned that biking and skiing at higher elevation with exertion, that I felt flattened and near-dead.  My pulse oximeter showed oxygen saturation of low 70’s. My PA freaked out and thought I had Pulmonary Hypertension (as opposed to HAPH) and sent me to a Denver Pulmonary specialist.

What did the pulmonary specialist tell you?

Karen: When I went to the pulmonary specialist, they said my oxygen numbers were fine at Denver’s elevation. The Pulmonologist advised moving to lower elevation but said there is no knowing how low until I experiment.  I have lived in Summit County and raised my children here; my children still live here.  Moving was not an option. I started riding and skiing with portable oxygen. When 02 columns fail, so do I. I do have periodic episodes of extreme joint pain resulting from excessive stress/time at desk (10-hr days).  However, I try to eliminate the pain by remaining active using oxygen when I need it. If I don’t use oxygen to sleep, I feel half dead the next day and it is difficult to wake up the next day.  I worry about the long-term effects of the hypoxia, however I continue to monitor.  I am hoping to see more research done in the area of high-altitude pulmonary hypertension. 

Jennifer Wolfe is in her final semester of Nurse Practitioner school at Georgetown University. She was born and raised in Missouri and attended The University of Missouri where she graduated with a bachelor’s degree in psychology. After attending Mizzou she married her husband who was active duty in the US Navy. They traveled to many bases and had two boys before calling Denver their home in 2011.  Jennifer received her BSN from Denver College of Nursing. Jennifer has spent 7 years as a nurse in the emergency department of several level II trauma centers before starting at Georgetown as a part of the Family Nurse Practitioner program.  Jennifer enjoys spending her free time with her family and their three dogs.  

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