Sep 27, 2022
CTEPH patient, Karri Reynolds spent years bouncing from specialist to specialist due to her failing health. She details how self-advocating led and a desperate facebook post led to her being diagnosed at age 40 (by a pediatric cardiologist)!
My name is Karri Reynolds. I'm 46 years old. I received a
diagnosis of pulmonary hypertension when I was 40 years old, so
about six years ago. I had a lot of misdiagnoses in the process. I
found in my situation, that the importance of self-advocacy was
huge. I learned how to become vocal about what I needed, or I
believe the diagnosis would've taken longer. I kept Googling my
symptoms and it kept coming back that I had heart failure.
I did not have insurance at the time. To be honest with you, I was working a temp job, because I had been let go from my other job that I had at the time, due to absences, tardiness. I worked at a large hospital, so I had to park far away and walk the hospital. I lived in the Midwest, in the summertime. I could not breathe. If I left 10 minutes earlier, I would still wind up walking into my office two, three minutes late. Yes, I had several warnings and notifications about being tardy, being late, or missing work due to being sick. I was very cautious about going to a doctor, because I thought, it's very humid out this time of year in this area, so maybe that's my problem.
I lived in a third story apartment that was stairs, no elevator. There were a lot of times I was pulling into my driveway at home and I was sitting in front of my building. I was just looking at the door. I was just trying to mentally prepare myself to go into the building and walk those stairs. That was especially hard, as well. I got into work on Monday and I wasn't there but two hours and I went up to the lady who was going to hire me for a full time job and I said, “I'm sorry, but I have messaged my doctor and I'm going to have to go in and see him because I'm not feeling well.”
I remember driving across town to get to the doctor's office. He took x-rays and he said, “It looks like pneumonia.” I've had this general practitioner for quite a while at this point. I said, “Listen, I am telling you, this does not feel anything like an infection of any kind.” He said, “Well, I think it will be best if we sent you up and got you an MRI today.” So they had me wait out in the lobby while they were calling around. When I went up to the hospital, I told the lady at the desk, “I'm sorry, but I'm going to need a wheelchair or something to get back there. I can't even walk.”
I'm 40. I don't look disabled in any kind of way. I remember her looking at me a little strange. She did get transport for me. I remember them telling me I had to lay down to go into the MRI. I told them, “I don't know if I can lay down at all.” I did the very best I could. I remember just sitting there just wanting to sleep so bad. All of a sudden, I see people running. I saw some other people coming down another hallway. They were all running. I thought, “What's going on?” I'm looking around and I'm hearing the overhead say code whatever. They were running at me, because I had Pulmonary Embolisms on both sides of my lungs.
I ended up spending about six or seven days in the ICU. I remember doctors saying, “You don't know how lucky you are.” I don't think I understood at the time. They said, “You could have had this, from a long journey.” I had just gone on a cruise and stuff, but we were very active on the cruise. What they were telling me caused these blood clots did not make sense to me. I hadn't really done any very long trips or anything. They said, “Well, that's the stuff that causes them.” Then the conversation would end.
Before I ever even had the Pulmonary Embolism, I was nearly intubated twice. I spent my 40th birthday in ICU. The very first time I went to the hospital, (at the time they were telling me that I had severe asthma). I said, “Well, I'm 40. I've never had asthma before. I guess I don't understand how I can wake up and have asthma.” “Oh yeah, it can happen,” they said very dismissively. They set me up with an allergist. I even had an episode at his office where they were going to call the ambulance and have the ambulance come and get me and take me to the hospital.
The doctor did a whole bunch of tests. I had blood work that was like $2,000 worth of testing. I was not insured. They all knew that I wasn't insured. The doctor came back to diagnosis of lightning asthma. I said, “What is lightning asthma?” He sent me all this information on it. He said basically, I live in the Midwest, especially during these humid months, what can happen is, the air gets thick like soup and had something to do with electrical charge that happens in the atmosphere. I remember thinking, okay, well this is a medical doctor, he's told me I have lightning asthma. I even made a post on my social media saying, I guess I've got lightning asthma, which means every time that there's a change in the atmospheric pressure, right before a storm, it will cause me to have a severe asthma attack, to the point that I'm almost intubated.
This made a little bit of sense, because a lot of times I was having more difficulty breathing when I would go outside and it was humid out. The more humid it was, the harder it was for me to breathe. Typically, on weekends when I would go home, on Friday, I'd get home and I'd stay in my apartment till I had to leave on Monday morning, because I just had no energy. I slept all the time. So many people have told me this, “What's the common denominator?” Well, it's me. I've talked to pulmonologists. I've talked to doctors. I've talked to asthma people and just on down the line. I've lived a pretty active lifestyle prior to getting some of the symptoms of having pulmonary hypertension. I enjoyed being active. It was almost like lecturing myself. You don't like sitting around like this, so what are you going to do to get up and get more active? What can you do?
I just remember how deflated I would feel. My body just would not do it. I was trying all sorts of different things at that point, because like I said, the common denominator was me in every one of these scenarios. Every one of these doctors I went to, they looked at me and they thought I was overweight. They thought that I needed to diet and exercise. They claimed I had too sedentary type of lifestyle is what led to my problem. During this time, I'm just gaining more and more weight and I'm gaining it fast. I'm tried to take the stairs as much as possible and I just could not manage getting up those stairs very well. It was worse somehow. It's not better. What I always missed was that there was a gut feeling that I had that things just didn't add up.
When I would see that there was no treatment that they were giving me that was improving my daily quality of life. It would never take me very long to say, “That's not it.” I had a few providers get very short with me. When I say short, I pick up on people's attitudes and demeanor when they're talking. It was easy to sense, this is what I'm telling you to do. I even have one doctor write it on a sticky note for me. The immediate reaction that I got from all these doctors is I wasn't doing my part. But I was the one that was watching what I was eating and drinking. I was the one spending three hours in a park to even try to walk a hundred yards. Every time I would leave their office, I would leave feeling like, it's me. It made me very, very depressed.
All the physical results that came from me trying was more weight, more fluid, and increased inability to physically do anything. After I was released from the hospital with my pulmonary embolisms, even though they're telling me those clots are gone, there was something wrong that I cannot breathe any better than before I got diagnosed with the clots. This pulmonologist, he was very, almost arrogant in a way. I said, “I've done some research. I'm looking at the possibility of this being CTEPH (Chronic Thromboembolic Pulmonary Hypertension). A doctor had mentioned that to me in the hospital. He told me I needed to follow up with my pulmonologist to get the rest of the test, to get the diagnosis, but so far it's checking every box. He seemed like he couldn't wait to cut me off in what I was saying. He said, “Listen, I'm not going tell you that you have pulmonary hypertension. I'm not going to tell you don't. I am going to say that you need to take your Warfarin, your blood thinner, like you've been prescribed to do. If you had done that, you wouldn't have concerns of reoccurring embolism.” He said, “There's nothing preventing you from getting healthier. You need to get some weight off,” and just matter-of-factly left it at that. He added, “We'll recheck this in six months.”
When he said six months, I pictured my head living another six months, just like I spent the last six months. I thought, how can I possibly continue living like this? Again, I leave the doctor's office deflated. I ended up making a social media post. It was Facebook. I was just absolutely at my wits end. I didn’t know what to do. I really have no idea what I can even possibly do anymore. What they're telling me to do, I've already known that I've done it. I had a high school friend and she responded to this and she said, “Karri, I work at a children's hospital, I am a case manager and I work for a doctor who does pulmonary hypertension and heart failure with children. Do you want me to talk to him about this?” I said, “Will you please?”
It was maybe a week or two later, she contacted me on the social media. The doctor had sent the articles that he wanted me to review about the information that I had provided. It was all information on CTEPH and Pulmonary Hypertension. I read through a lot of that and I got back her. I said, “This is me, but I can't get the doctor to test me for another six months. He's pursuing this other blood thinner that is not going to work for my condition, according to these articles.”
I was even more upset at that point because I was actually taking a medication that will not respond to what I have, which means my prognosis of getting more blood clots was actually higher. I asked her, “Where do I go? What do I do? Can you refer me to anyone. What can be done?” She said, “He will see you on this day and time.” It was within a week.
Of course, this is kind of a funny story, because I went there and it was at a 5:00 PM appointment and it was in the children's hospital. They had the tiny little children's exam table and stuff that I couldn't even sit on. It was all built for children. The doctor came in and he looked at me and he had two inters with him. He said, “Kerri, I reviewed the tests that you had done at this facility,” (because there was an adult hospital attached to the children's hospital). He said, “You have CTEPH, and you are dying.” He dialed a phone number on his phone right there in front of me. He spoke to someone on the other end, “You know the patient I was talking to you about the other day? Well, I've got her here in my office and I think you need to see her.” This was a doctor that had a waiting list of three to four months to even get an appointment into, who said, “Yeah, send her by Thursday morning.”
I went in. This was a cardiac surgeon at that point. He said “We can do this kind of surgery. These are the tests that we've got to get done.” I said, “OK, so where do I go to get those done, because my pulmonologist, they're not going to do it. I don't know where else to go.” He said, “Oh no, you're working with, we call him the Right Heart Wizard, because he's the best right heart specialist in this entire area. He doesn't even take a lot of new patients, but you're going to be seeing him, you're going to be working with him. He's going to get to every test you need. In fact, I'm going to send you over there right now.”
He had me walk like two doors down and Dr. Ronald Zolty comes in and he said, “We're going to get this pulmonary angiogram done. You're going to get a right heart catheterization done. These are all outpatient procedures. It's going to take a couple months of getting you scheduled for these, but as you get scheduled for them, we'll get the test results. Then we're going to get you to a surgery in California. This is going to be a process that's going to take at least six months.” It ended up taking almost a year. He said, “Without any treatment, you will not live past the year.” It was a very long, complicated process, because not everybody's approved for surgery.
I went through the process. I got approved for surgery. It was a waiting game to get all the test results sent in and everything reviewed. There was only one place that I could go to and get this done and that was at the University of San Diego. During all of this time, I was still struggling to try and keep working so I could keep insurance. The advocacy part never ends. I will say a lot of the doctors, and I certainly understand, they have a lot of patients. They have very tight schedules. They don't have a lot of extra time. Especially with a lot of regulations with insurance and everything else, they're having to not spend a lot of time looking into things. I can name at least six doctors I had, that I wasn't arguing with, but I was pushing a little bit harder. I just didn’t think that that was the thing. They all said, “Well okay, we'll talk about it next time you come in. We'll see how it's going,” as they're walking me to the door.
If I would've allowed that and if I would've accepted that, then I would be dead. There's no doubt in my mind. I don't think there is a magical phrase that you can say to make anyone understand. My condition is rare. Even when I was finally diagnosed, I had a lot of people telling me, “Yes, it is a two to three year diagnosis process for this disease.” Had I not made a Facebook post, I would be dead. That's quite literally what would've happened. I saw the top people, professionals in my area. I had no indication that I had heart trouble. I had no indication that I needed to see a surgeon or a right heart doctor at all.
The best thing I can say is, you have to follow your gut. I went home with every one of these doctors with their opinions and their suggestions and recommendations and I felt so terrible. My quality of life was that of a very old, very limited person. I didn't go anywhere. I didn't do anything and I was 40 years old. I know the effort I took and for not to see any improvement in any of the efforts I was putting forward, that did not add up. It's the same as somebody telling you two and two equals five and you know that it does not. The only other piece of advice I can tell you is, you go to another doctor and you keep going to another doctor until you find one that will listen to you, because I will tell you, Dr. Zolty, my cardiologist, I drive two hours one way to see him. That's because this man saved my life and he took the right steps.
There is no one medication for things and I know that everybody believes that a lot of conditions are cookie cutter treatment, whereas if a patient has this condition, you treat them with this. That's very true in some instances, but not every medication that works for every other person is going to work for you. Even when the doctor's not liking what you're saying and then you're picking up on any of that stuff, find another doctor. If they don't know the answer, you ask them where you need to go. I was so frustrated at that point. I didn't care if I had to see 10 doctors. I didn't care if I was in a waiting room of a children's hospital, I was going to keep seeing a new face until somebody could tell me, what was wrong with me.
It's easy to tell when doctors are asking questions, “Does this happen, do you notice this?” That was the very first thing I noticed about Dr. Zolty. There's an easy way to tell if you have a doctor who's going to look for any possibility for you, compared to a doctor that has a lot of clout or maybe a lot of recognition in the community. There were just too many appointments where, looking back, hindsight's 2020, I knew the doctor was reaching for something, like lightning asthma? It affects less than 2% of the population. What I do have is rare. Everything did not line up. I didn't reject everything they said right away. I tried, I was on breathing treatments every two hours. I haven't had a breathing treatment in the last couple years, because they did nothing but increased my heart rate somewhat.
Doctors will never see that some of their advice or recommendations could actually cause more harm, but if you're not experiencing any improvement, the answer is to find a new doctor. I don't care if I had weekly appointments, I would drive two and a half hours to my doctor, because the quality of life he was able to provide for me compared to the quality of life I had for the whole year and a half, two years before that was so much better.
My name is Karri Reynolds and I'm aware that I'm rare.
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