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I'm Aware That I'm Rare: the phaware® podcast

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Kristine Setser - phaware® interview 406

Mar 7, 2023

PAH and CTEPH patient, Kristine Setser details her PAH diagnosis and her rare, life-saving thromboendarterectomy surgery which she believed to be was her only shot at life.

Hi, my name's Kristine Setser. I am living in Michigan. I am very connected to pulmonary hypertension, as well as a version of PH called CTEPH (Chronic thromboembolic pulmonary hypertension). I was diagnosed with pulmonary hypertension about three years ago. I was 39 years old and my life took a drastic change and turn. I've had to be nimble and try to be resilient and move forward with my life with PH. I'm very blessed to still being here today, thanks to some brilliant and amazing doctors. So my story's quite unique. I have always been quite athletic. I was working out about six days a week. It was progressively becoming harder for me to work out. I was getting this severe burning throughout my chest and throat. Well, it was Covid [lockdown], so I wasn't able to actually see a doctor. I talked to a pulmonologist. He said, "It's probably some onset asthma." He gave me inhalers, but nothing was working. It was progressively getting harder and harder for me to work out. As a woman, and I shouldn't say that, I guess as anyone that's a working parent, I just didn't have time to be sick in my mind. I blew it off and was hoping it was just going to go away one day.

I walked up my front steps and I completely blacked out. In your mind, you think, wow, this was not normal. It was only about 18 steps. Here I was someone that worked out for the past 20 years of her life for six days a week, and I can't even walk up steps. I immediately rushed myself to the urgent care and that's where the doctor told me, "Listen Kristine, something is seriously wrong with you. You have got to get to the emergency room like now." It was in the midst of Covid, so I had to be dropped off at the emergency room by myself. I was zipped into one of those rooms, like those poor Covid patients. They didn't know what was wrong with me. Every time a doctor or nurse entered the room, it looked like they had just landed on the moon because of the gear that they had on at that time. So it was quite devastating to get my diagnosis.

They came back a few hours later and said, "Kristine, you're very sick. You have blood clots in your lungs. You have right heart failure and you have a disease called pulmonary arterial hypertension." I think I was in shock. I think that I thought that they truly had the wrong girl. I'd never smoked a cigarette a day in my life. I've lived off lettuce for the past 20 years of my life. I was athletic and worked out, so that couldn't be me that they're speaking about. I was totally in shock. But it was me and my life completely changed from that day forward.

If I'm being honest, I was misdiagnosed. I think as a lot of individuals are with this disease, which makes it so tough on individuals with this disease to get the right diagnosis. I was being treated at my local cardiologist for pulmonary hypertension. Although they had found blood clots in my lungs, my cardiologist thought that that was a fluke, I would say. So he didn't particularly think that was the cause of it. They put me on those heavy, heavy oral treatments. I wasn't getting better. In fact, I was getting sicker and sicker by the day. They had given me about a year to live because those treatments weren't working. We finally decided that I need to go to U of M, University of Michigan, for a lung transplant.

I went to U of M and at that point is where we went through all the testing for a lung transplant. They explained to me the absolute horror of a lung transplant. You might live five to seven years, that's if I get lungs that'd even fit my chest and I'd be an immune suppressant. It was a pretty horrific day until the doctor said that there was a super rare surgery called a thromboendarterectomy, that a few surgeons in the US perform and they actually had one at U of M. So if I was a candidate for this surgery, I would be able to move forward with this surgery versus the lung transplant. This would give me a lot longer of a lifespan, because I have an eight-year-old son. Well, he was five at the time of diagnosis.

So I really, really, really wanted to see my son graduate high school, hopefully get married. Hopefully, I'll have grandbabies one day. So this was my best shot at a long life. They said the surgery was quite complicated and rare and dangerous, but in my mind, it was my only shot at life.

I did the testing and my body had probably, I think they said close to 15 or 20 blood clots. They were small and in the small vessels of my lungs. They definitely said I was a candidate for that surgery. So about three weeks later, I entered U of M Hospital to progress forward. Most people, they give you a huge explanation about the surgery, the risks that are involved. Essentially they have to put your body in hypothermia for 20 minute intervals. The reason for the hypothermia is due to the fact that they have to stop all blood flow. The surgeon's going to go in and try to remove any of the blood clots that he can manually reach within the branches of your lungs. I was put on ECMO for 20 minute time spans.

I was told the total time that they stopped my heart was about 130 minutes. Actually, I was told that that was almost like a record, at that time. But I know the surgeon was doing the best that he could to provide me with an opportunity for survival. Unfortunately, that surgery lasted 11 hours and I never woke up from the surgery at that point. I was having what they called seizure-like activity. My body was seizing out. They weren't sure if I had a stroke during the surgery or not.

I finally woke up eight days later after the surgery. I remember hearing Dr. Half say, "Kristine, you had the surgery, but your brain activity stopped." Because of the lack of oxygen to my brain because of the surgery, I had a major brain injury. When I did wake up from this surgery, most people leave the hospital around day ten. When I woke up eight days later from that coma, I was intubated, had a feeding tube, and I was told I couldn't walk, talk. I couldn't even lift my head. I couldn't even speak two words. Most of that was due to the brain injury.

My mouth wasn't working. It wasn't functioning with my brain activity. I had to relearn everything. That was in the midst of Covid. I wasn't even allowed one visitor. Here I am, imagine being woken up eight days after surgery, not being able to walk or talk, having no idea what's happening with your body and not he's seeing one loved one. It was quite difficult on me. It was definitely a time for massive prayer. I'm a huge Christian. I'm not sure if listeners are as well, but that's what truly got me through. My only visitor was the Lord, and I was in the ICU for about 41 days.

I don't know if it's fortunately or unfortunately for me, I was on really, really heavy, they called them tranquilizers. You figure my chest had just been cut open, they're trying to keep me as comfortable as possible. I was hallucinating a lot and I guess that's quite common for this surgery. In fact, they make you watch a video on it prior to going into surgery. A lot of people hallucinate. A lot of people are aware of their surroundings. I was coming in and out of hallucinations. I remember hearing the doctor, I remember my nurse holding my hand and we both sobbed together. I think partially because I was the youngest patient she had, probably in a long time, in that situation. But I do remember hallucinating and thinking my son was there daily. I know this might sound crazy to some people, but even though till this day, I know that that's not true. Obviously I wasn't allowed any visitors, let alone my son. I do think that it was the Lord putting my son in front of my eyes to help me fight, because there were several days I wanted give up. I didn't want to do this anymore. It was very hard. I wanted to quit a lot. It was hard on me and not seeing one family member. I truly think that the Lord put my son in front of me, even though I sound like a nut job saying this. I do think that helped me fight.

I wasn't going to not see my son another day. I was going to try to lift my head up. I was going to try to stand. I was going to try to do those things. As hard as they were, I was going to do it and I was doing it for him. They finally moved me to a rehab facility in Chelsea, Michigan. It was terrific. I was allowed one visitor a day, so not my son unfortunately, but I was able to see my husband, my identical twin sister. Those days were tremendous. Honestly, the rehab part, the physical part, I'm used to being physical. The learning to walk again, that was the easy part. The working your brain and trying to get your brain to function again, that was the hard part for me. Don't take this the wrong way, but I have an MBA from Michigan State University. I have a degree in biology and chemistry. I'm not a dummy. When they asked me to draw a clock, I couldn't even draw a clock. I went from 12 to six and then physically my brain stopped working. I think I put 17, 18, 19 on there. I could not draw a clock if my life depended on it.

I couldn't do the days of the month. So that was the most difficult part. If I'm being honest, I felt stupid. I felt like a dummy. I felt like how am I ever going to give back to where I was? But here's the interesting part. Three years later, I thought my MBA was the greatest achievement and I thought climbing that corporate ladder [was important]. I'd led a hotel acquisition team for science, engineering and technology. I thought those things were accomplishments until you're faced with this predicament. I swear when I could draw that clock all the way or when I took 10 steps all by myself, those were my biggest accomplishments. It sounds silly, but you can take all my other accolades.

I'm a fighter, I'm a survivor, and I did those things and that's where I'm at today is to share this story, to keep fighting. Hard stuff's going to happen, and today I am thriving. I go to the gym. I'm still on disability because sometimes my mouth doesn't work or my hands, but I do what I can and I appreciate every day. I will always have CTEPH. That's not something that goes away, but my PH is significantly down. The right side of my heart is not as enlarged. It's slightly enlarged.

I should go on to say in addition to that surgery, the thromboendarterectomy, because my PH was still quite severe after that surgery, I went on and had eight more surgeries of the balloon pulmonary angioplasty. They went in through my groin eight different times and tried to remove the blood clots that way, so that was extremely helpful as well.

I tell everyone, get a second opinion. I wouldn't be here today if my doctor wasn't humble enough to know that this is a super rare type of disease and he was okay with sending me to the experts at U of M. He was okay with not knowing that he didn't know what my next step would be and I'm so appreciative for that. The second thing I would say is yes, 100% if you had the option, do this surgery.

My story's unique. Most people wake up, their home in 10 days. Yes, it's painful, you've got your chest cut open, I've got wires now in my chest. But I've got a cool scar and I tell people all the time, scars are awesome. My prognosis of life 1000% different than when I first got diagnosed. I'm hopeful to continue on to survive and thrive and share this disease with the world. It needs more recognition. I think that it needs more specialists out there and more help. I know the medication is ridiculously expensive for some, I just feel like it needs to be recognized more.

My name's Kristine Setser and I am aware that I'm rare.

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