Lauren Janzen - phaware® interview 271

Pulmonary hypertension patient and nurse Lauren Janzen on the unique perspective of being both a patient and a RN working on the PH floor she was diagnosed on.

My name is Lauren Janzen, and I am a pulmonary hypertension patient.

I had kind of had on and off symptoms for about a year that I can recall, back in 2008. I'm from Wisconsin, so I was in college at the time. I remember going sledding with a bunch of friends and trying to run up a hill and getting to the top and being super short of breath and a lot of palpitations. It was like, "Oh, that's kind of strange." But I guess I don't typically run up a big, snowy hill in heavy gear. So eh, whatever. Write it off.

So I kind of had on and off shortness of breath. I'm a pretty active person, so anytime I'd work out, it would be hit or miss. I'd have a good day. I'd have a bad day. All right, it happens to everybody. It sounds made up, but I was actually in South Korea visiting my husband who was teaching English there for the year, and I had gone during my Christmas break for two weeks. We were there hiking around, and I got really short of breath doing a lot of different activities there because it's all mountainous. So we did lots of climbing.

At one point, we had climbed the highest peak in South Korea, and that was I don't remember how many feet, but definitely more than 5,000. It was white-out snowing, so you could barely see the trail marker in front of you, and I'm surprised I didn't pass out then and there. I'm very lucky I didn't. I knew there was something really wrong. That was kind of my trigger, but what are you going to do? You're in another country. You're having a blast. You're kind of just doing what you're doing.

I got home. Five days later, I go to a boot camp class with a friend, and I have a face plant at the top of the fourth floor after climbing a bunch of stairs. That got me admitted to the ER, where they then admitted me overnight. They thought I threw a PE, because I had been on a plane five days prior, and that's a 12-hour plane flight. That was negative.

They had a cardiologist come in the next day and do an echo cardiogram with a bubble. Well, that'll diagnose you right away. I was really lucky. I was diagnosed and treated in six days. I transferred medical facilities to where my PH specialist is now, who I still currently see.

It was hard at the time. I was 21 and in nursing school, so I still plowed on through. It wasn't easy. I will say it was probably some of the darkest times I had, just trying to adjust to being on IV medication, my husband being away, thousands and thousands of miles, my parents being from out of town. It wasn't an easy task, but I remember getting through the semester, and it was probably the biggest victory there was.

I had gone back after six months to see how I had done with treatment. I ended up totally remodeling my heart, which is super cool. So in honor to celebrate, I started road cycling. I did my first bike tour that summer. I did it. It was actually an MS ride. That kind of kicked that off, and I've been doing it ever since. So I do a couple of rides every year, and I try to make it based on usually a charity ride for another disease, but it also is a double victory for me, fighting PH at the same time I'm doing bike rides.

I have only worked as a professional with PH. I've never worked my full-time job without having pulmonary hypertension, so it's been kind of an interesting go-around. You learn a lot of things, and I will say I am better for having lived through all that I have.

Being a nurse, I think education and advocacy are the absolute top priority anybody should ever take after. You should always know what you're taking, why you're taking it. Question it. Make sure you get along with your healthcare team. That is primo in compliance when you are able to jibe with your doctor and collaborate and really have a good understanding of each other.

Initially, I had been in my last year. This was about a year after I was diagnosed. My cardiologist asked me what I'm doing after college, and I said, "Well," kind of in a joking manner, "I am going to work for you." So she said, "I will arrange for that." I ended up working on the floor that I was a patient on. So it was kind of interesting because I was patient, then nursing intern, then nurse. I have a very special place in my heart for the people that took care of me and trained me as a nurse professional, that kind of thing.

It was a good, good learning experience. I ended up getting out of that just because I was getting pretty burnt out, and I was also seeing things that I probably shouldn't have. It was a good experience while I was doing it, but I was also brand new and needed a different change of pace. So I moved over the VA system, which is where I work now.

Initially, when I worked on the PH floor I was diagnosed on, I would on occasion, after I got to kind of know the people and their understanding of things and what their values were and all that, I would open up on occasion to people directly and just say, "Hey, I'm with you. I've been here. I've been in that bed. I totally get you, and it's okay. You're going to be fine. You are seeking medical attention. You're doing absolutely everything you're supposed to be doing at this point in time." I think that was very liberating for me and also the patients. It was kind of interesting, the dynamic being the patient and nurse. So being able to connect with people that probably have not had that type of connection before, like be able to serve both roles.

Awareness is so important because if you know what's going on, you can treat it. They know how to proceed. They know what avenues to go on. They know what they need to do to get you what you need in terms of treatment, testing, anything like that. I think early awareness really does give a person a leg up because you're not bouncing around from place to place to place, getting told you're lazy or you have asthma or you're making this up; it's all stress, or that kind of thing.

So it's crucial to be diagnosed early, if possible, because it promotes a better outcome. Being diagnosed early means you understand what's going on. Therefore, you know how to better protect yourself because you will educate yourself on the situation.

Make sure you own the disease. Don't let it own you. It lives with you, not you with it. So always fight. Always be educated. Always make sure you're doing everything in your own power to make sure you're promoting a better life for yourself. So that means take your medications as prescribed. Follow a healthy lifestyle the best you can. If that means you're not running marathons, then who cares? If it means you went for a walk around the block and that's a little bit further than you went the day before, that's awesome.

I would say in eight and a half years of having pulmonary hypertension, I've learned that you are way stronger than you ever give yourself credit for.

My name I Lauren Janzen, and I'm a aware that I'm rare.

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