Disclaimer: This transcript has not been edited for grammar, spelling, or punctuation.

[00:00:00] Nicole Wipp: Welcome to the smart planning. 101 podcast, episode 28. I'm Nicole Wipp. And I'm your host.

So today we're going to talk about early diagnosis. And helped me with that conversation. I asked Jessica Armstrong from the pH association to have this conversation because early diagnosis of pulmonary hypertension is particularly important. Now, back in 2011, Jessica was serving in Afghanistan when she suddenly became unable to breathe and she collapsed four months later, she was diagnosed with Chronic Thromboembolic Pulmonary Hypertension and told that unless you want underwent a dramatic 10-hour open-heart surgical procedure, she wouldn't live beyond the next five months. Today, Jessica serves as manager of the pulmonary hypertension associations, early diagnosis, campaign, and advocates for patients of pulmonary hypertension and other rare diseases.

Thank you so much for joining me today, Jessica.

Jessica Armstrong: So glad to be here, Nicole. Thank you so much.

Nicole Wipp: So you were serving our military in Afghanistan. And you became sick suddenly.

Jessica Armstrong: Yeah. Very so.

Nicole Wipp: To say the least. Yeah. To say the least. And so I, before we get into to the subject matter, I think it's important for the audience to know a little bit about your experience because. From our conversations. What I know is that your experience, we all have our own experiences and they're all unique, but in a lot of ways, they sort of overlap one another. So it's good to sort of talk about what happened. So tell us a little bit about what happened and how you came to your diagnosis.

Jessica Armstrong: Sure. So I was serving in Afghanistan and I guess about April timeframe, I started noticing that I was having progressive shortness of breath, which seems strange because I was at that point in my life, extremely physically fit. I'd been a runner. I'd played rugby, very competitively. I, you know, obviously I had gotten fit for the, for the, for the deployment as well.

And I was in tip-top shape and I suddenly found myself getting short of breath, walking just a few hundred feet and it progressed and progressed. And so I eventually went and saw some medical care there on my installation in Afghanistan. And. We thought it was air quality-related. And they gave me some asthma medications to treat my symptoms.

It continued to get worse and worse. Until I reached a point where I was actually on top of a mountain in a fairly dangerous place, and suddenly I wasn't able to breathe at all. And they, I had to actually remove my body armor. Which put, not just me with the others in my patrol unit at risk, because I was essentially a sitting duck and they, they carried me down off the mountain.

I lost consciousness. They took me back, but again, they weren't able to determine the source. And then in about in June, mid-June I came off of a patrol and we had just returned to base and I went back to my quarters and I collapsed. And I was unconscious on and off for about six hours. And when I finally came to, I was no longer able to stand.

So I called for help. I actually had to drag myself along the ground to call for help on my stomach. And they took me to the hospital and at that point they. Found blood clots. And then it took another four months beyond that for them to recognize that the clots had actually in my case, become chronic.

And in October of 2011, I was diagnosed with chronic thromboembolic pulmonary hypertension. And at that point I was, I was diagnosed as a class for a functional class, four patients. And told that I had at maximum another five months to live. So the doctors recommended that I go home and get my affairs in order and spend the time I had left with my family.

Fortunately one of the doctors on my team decided to do some additional research because pulmonary hypertension was not something that she was very knowledgeable about. And she discovered that for patients with blood clot-related PH. That there was a surgical procedure at that time, it was only being done in one place in the country.

And she got me a referral to that center. And on January 20th, 2012, I underwent a pulmonary thromboendarterectomy, which saved my life. And it's the reason that I'm here today.

Nicole Wipp: Wow. That's such a amazing story. And I listening to it, [00:05:00] I think I heard at least four points that you were clearly and major risk of losing your life at least. And I'm sure there were many more than that. Cause I know that you haven't really, you know, the story is always way more complicated than our basic story. Right. But, you know, I think just alone hearing you have five months to live. I mean, how old were you when that happened?

Jessica Armstrong: I was 29.

Nicole Wipp: So at 29 years of age, you're in the military, you're kicking butt. You're thinking that you're on top of the world. You're in shape. And then you're told you have five months to live. Now this comes at you from nowhere, right?

Jessica Armstrong: Right.

Nicole Wipp: I can't even imagine. Well, I can actually, but everybody has their own story at 29. I'm older than you are. So how, how did you, how did you cope with that?

Jessica Armstrong: Not as well. In hindsight, as I wish I had, you know, I'd love to say, oh, I did wonderfully well, and I was one of those strong people who just said, I will persevere. I was scared out of my mind. It's really afraid. And you know, I went through. Sad times and hard times and scared times and angry times and every emotion in between that you can imagine.

And I was very, very fortunate because I have a very tight-knit, very supportive family. And I had a good network of friends that were behind me, and I was delivered into the care of the best medical experts in the country, in this particular field. So really I had a lot of factors working for me, but even with that, it was difficult.

It was quite a journey and you know, there were, there were some dark days in there. There were some real dark days. But I'm, I'm happy now that I get to take all of that experience, the good, the bad, and the ugly, and use it to educate others about the disease and to work, to raise awareness about this disease so that other folks don't have to experience what I do.

And also that, that feeling of isolation. All rare disease patients, I think, feel at diagnosis because most of the time, when you, when you get a diagnosis of something you've never heard of, and it's very rare and the chances that you've met, another patient are so slim. It makes you feel like you're alone in it.

And. I'm so grateful for, you know, for folks like you, Nicole, who bring us together to be a community of rare disease patients and for opportunities to talk about that and to support one another in whatever way we can.

Nicole Wipp: And that's really. One of the many reasons why early diagnosis is so important, right? Because one of the ways that we survive rare disease or any type of really devastating diagnosis, I would think, I mean, I would think even if you had some type of cancer that this, you may feel this same way that having a community and having support is one of the key players in getting better.

Jessica Armstrong: Absolutely. Absolutely. And you know, that's been so important to me. I was fortunate to become connected with the pulmonary hypertension association as a patient. And I can't describe to you in words, what it felt the first time I met someone else who'd been through what I'd been through and who knew what I'd felt and who'd experienced exactly what I felt.

It was so liberating. It was so encouraging. It's so important that we have the support networks in place and particularly in a community like the pH community, you know, survivability of the disease without treatment, it's such a slim window. The average is less than three years. And so it's important for us to support one another to connect another one, another with resources, and the community that the PHA has built through support group meetings and online has been an invaluable resource for me. And now when I have a bad day, I know that I have, you know, thousands of people that I can rely on.

Nicole Wipp: So that for pulmonary hypertension is one of the reasons why early diagnosis is so important as well. Right? Because you just said a very startling fact, I would think to anybody that was listening to this, that without diagnosis and proper treatment, you're looking at a probably three-year lifespan. After the, after onset of the disease, correct?

Jessica Armstrong: That's correct. Yeah. The, the studies show, the average untreated is 2.8 years. And, what's startling about that to me is that there are actually 12 FDA approved therapies for treatment of pulmonary hypertension patients. And so there's a lot of options and I, I know other patients and talk regularly with folks who've been living with this disease for more than 30 years.

So in the [00:10:00] eighties, people said, well, this is a death. It's not anymore, but if you don't get that correct diagnosis, if you don't get plugged into good resources and folks who are knowledgeable about managing these very specific, very challenging drugs then yeah, your chances go down. And so having a community is important. Getting that early diagnosis is important and getting the best possible care is important.

Nicole Wipp: But that's the struggle, isn't it? I think the struggle is getting the correct diagnosis, wouldn't you agree?

Jessica Armstrong: Absolutely. Absolutely.

Nicole Wipp: So what should people be looking out for?

Jessica Armstrong: Well with pulmonary hypertension the symptoms are really nondescript. The sort of we'll say the mascot of our early diagnosis campaign is the zebra. And the reason we've tied ourselves to the zebra is there's an old analogy that's used in medical schools talking about if you hear hoofbeats assume it's a horse, not a zebra. And what they mean by that is common symptoms, usually point to a common answer, but pulmonary hypertension, patients, and rare disease patients are not common answers. We are rare and exotic, and we're not what you would expect. And so we are the zebra that you don't expect to see when you first hear those hoofbeats.

Nicole Wipp: So the one thing that I do know about pulmonary hypertension is that a lot of the symptoms are very similar to the symptoms of my disease. Lymphangioleiomyomatosis so we're looking at what? Shortness of breath, general fatigue.

Jessica Armstrong: Exactly. So shortness of breath difficulty on exertion, sort of the hallmark that I hear is difficulty climbing stairs. That's the one symptom that, that over and over and over again, I seem to hear more from PH patients than anybody else. Fainting spells can happen as the disease progresses. You may notice fluid weight gain and edema which is swelling in your, in your legs typically. And the shortness of breath sensation, you know, it's different. It's different from asthma, like a sensation where you have a tightness in your chest.

For me, pulmonary hypertension felt like no matter how deeply I breathed, my lungs weren't pulling anything in. It was like, the exercise of breathing was worthless for me. And that was because, you know, my lungs, the pulmonary artery that delivered the blood and oxygen to my heart was between my heart and lungs was blocked.

And so that sensation, it almost feels like you're drowning. And so. One thing that's really helpful within our community is to talk to our patients about you know if you've been on asthma treatments, if you've been on treatments for other respiratory diseases in the past, or you are currently, and those treatments aren't helping you, it's important that you let your doctor know.

You can take your inhaler around the clock, but if you're not an asthma patient, then it's not going to help. So that's one thing you can do, if you get an asthma diagnosis and you don't think that's the right thing, you can talk to your doctor about whether or not you've had a spirometry, which would look at those things.

You can have an echocardiogram. Which would indicate whether or not there was enlargement of the right side of your heart which is a sign that pulmonary hypertension exists in this progressing. And then, you know, of course, the hallmark of PH diagnosis is the right heart catheterization, which they actually directly measure the pressures inside the pulmonary artery.

Before you get to all of that. The first thing that we have to do as patients is really advocate for ourselves. And so what that means in practice is remember that you are a consumer in the healthcare arena. Make sure that you're being treated by healthcare professionals that make you feel as if you're being heard and not as if you're being dismissed, ask questions to clarify, and persist until you feel satisfied that you got the answer that that's right for you, that you understand the answer that you know what to do.

You know what next steps are, et cetera. You continue to push. If, if you don't think that you've gotten the right answer, it's completely reasonable for you to seek a second opinion. And that's ultimately what saved my life. I went outside of the hospital system where I was being treated and got a second opinion.

And that's how I got a correct diagnosis. And if I hadn't done that, I wouldn't be here today. So. We at PHA have actually created a resource that we call the patient self-advocacy toolkit and that resource is targeted specifically. Any undiagnosed patient who's seeking answers and it walks you through some of those things that I've just described as well as a whole bevy of other insights.

We've got pages where you can record your personal [00:15:00] health information and all sorts of things to help you get through the diagnosis process. And, but remember, That it really lies with you. It really rests with you to continue to push that envelope, to continue to ask questions, to continue to be your own best advocate, because, at the end of the day, there's no one who knows how you feel better than you.

Nicole Wipp: And I couldn't agree more and I've had a chance to look through that. Self-advocacy toolkit. I recommend it so highly, and we will have the links for people to be able to access that as well on our website because it is a great tool and is one that if you are not getting answers, I would also. Very much recommend you follow and go through because it's how you get yourself to a place of getting answers.

And that is not easy for us, right? I mean, it's very difficult when you have a medical doctor telling you something, then you don't necessarily agree with, but because you're not a medical doctor, you don't feel comfortable, challenging.

Jessica Armstrong: That's exactly right. That's exactly right. And it's you know, you just have to ask questions. I mean, if you went to get your car repaired and the mechanic told you something that didn't sound right, you'd ask more questions. You might even think about taking it to someone else. So for goodness sake, treat yourself just as well.

Nicole Wipp: Well, certainly, but it's not that easy, right? I mean, I think that what I see a lot, and I believe you would agree with us is that it's very difficult. A lot of times its one thing. If let's say you were doing this on behalf of your, one of your parents, or definitely for your child, it's we can be really ferocious for the people that we love, but when it comes to ourselves, it's really difficult to advocate, isn't it?

Jessica Armstrong: Oh, absolutely. It's so true. It's so true. I was talking with another patient just yesterday and we were marveling about the ways that we adapted our lifestyles while we were at our sickest. And before we were being correctly treated I could describe this whole scenario for you, the way I used to shower and it involved, you know, crawling in and out of the bathroom, on my hands and knees and showering on my knees because the steam would cause me to pass out and I lived alone and I was willing to adapt my lifestyle that way, rather than to go back to the doctor and say, I don't think this is right. And that's on me. But you know, Nicole, you make a fantastic point. We are very good at caring for the people around us and for the people that we love. And if I had seen a loved one of mine living the way that I was living before my diagnosis, I would have clubbed them over the head if that's what it took, to get them to the hospital, to ask more questions. But I didn't do that for myself. And that's really the lesson here is that we can dismiss our own symptoms. We can blame. Ourselves for our symptoms. I heard an interesting statistic recently. I was at a meeting of heart disease patients and one of the medical speakers shared that women are statistically more likely to wait until they lose five more pounds to see the doctor, no matter the severity symptoms, but you know what,

Nicole Wipp: That's interesting.

Jessica Armstrong: It's not the five pounds. If you're having really severe medical symptoms, the five pounds can wait, get yourself to the doctor, and know that it's not your fault that you're sick.

Nicole Wipp: But that's a sort of interesting because you, you talk about the five pounds. So, you know, our weight is often blamed on things. And this is so funny because I was just at a doctor's office the other day, because, you know, with as rare disease survivor, I feel like even though I'm quite healthy compared to many of the people that have my disease. I still have an endless route of doctor's appointments. Right. That's one of the things that you get.

And I'm at the doctor's and he was, we were talking about something that was going on with me and he made the comment. So just along with that five-pound thing, he made the comment to me. Well, you're not that overweight. So I guess I can't blame it on that. And I started laughing because. I well, within a healthy BMI, I'm on the mid to low end of a healthy BMI for somebody my age and my height.

And. You know, so that is not my issue. My weight is never my issue, but I also know that if I was somebody that did have an extra 10, 20 pounds on me, that that would have been the answer to that. It would have been, my weight would have been the problem. Right. And very often weight does. Multitudes of problems.

So, I mean, it's not like those two things don't have a tie, but that is sort of funny that that that's one of the things that everybody sort of looks too. And then one of the other things that you and I have discussed in the past that people always look to our mood disorders, like anxiety and depression.

[00:20:00] Jessica Armstrong: Oh, you're absolutely right. I mean, I've spoken a lot about asthma because 85% of our patients are misdiagnosed with asthma. But we did this study. It's been going on, it's still ongoing for about the year, last year and a half. And in that time we've collected responses from more than 1400 newly diagnosed patients.

And one of the things that we've been tracking is the misdiagnoses that they get along the way. And what. Absolutely staggering for me. Was that a quarter? 25% of our newly diagnosed patients report that they were told that they had some sort of mental health issue rather than a physical health issue.

And so they were told that they had mania. They were told that they had depression. They were told that they had bipolar disorder.

Nicole Wipp: Is mania a real diagnosis.

Jessica Armstrong: No, it's, it's not a real medical diagnosis. They were told that they had anxiety. I mean, these poor women or I'm sorry, these are patients, many of whom were in heart failure were being told to go home and get a grip on their emotions.

Nicole Wipp: And you said women for a reason though, even though, even though a pulmonary hypertension. People of all gender, both genders, and all ages and races. Right? You said women in this topic for a reason. And what was that reason?

Jessica Armstrong: The reason is, I've been talking with patients recently, who've shared with me some examples of how they personally experienced this. And it just so happens that the patients that I've heard really the most staggering and, and startling stories from happen to be our female patients. And you know, that is in line with research that talks about the fact that women's reporting of their symptoms is often not taken as seriously. But one patient shared that she was sent to group therapy.

Another patient was told that when her symptoms. Started up. She was to pop a Xanax. I mean, it's just amazing, but these conversations that I've had with, with a handful of women recently just, just bowled me over and it's, it's been. It's been interesting for me because, you know, I, I was put around the time of my diagnosis before I was successfully diagnosed. I was accused of malingering of prolonging, a simple blood clot of probably being irritable because maybe my boyfriend had broken up with me or maybe it was menstruation-related. I mean, the things that I heard and I thought it was just me, but no, It really wasn't. And so that's something, you know, don't let one convince you that it's all in your head. If you know that something's wrong, seek a second opinion, continue to ask questions. And then I want to touch back on the, on the weight issue just briefly, because it is so important. So. The main reason that I came to work for the PHA is because of a family tragedy that occurred not quite two years after my surgery.

In November of 2013, my 29-year-old cousin. Passed away in her sleep of undiagnosed chronic thromboembolic, pulmonary hypertension. She had the same disease I did, and I never knew, and our parents never talked about it and we just never knew. And when Christina went to the doctor, she had a lot of fluid accumulation because she was in heart failure and the doctor said, you need to lose 30-40 pounds because you've put on all this weight recently. And he gave her some medication that actually accelerated her heart rate and thereby accelerated her death. And so instead of, you know, treating her weight as the problem, I wish that they had viewed it as a symptom because in her case it might've made a difference and she might still be with us. So that's why I really advocate for continuing to ask questions. If it doesn't feel right to you, if it came on suddenly, please, please ask because it might save your life.

Nicole Wipp: And that's one of the biggest problems I believe in the rare disease community. Is that regardless of the journey that you have to diagnosis and for some people like you and even myself, even though it took me over a year to get a diagnosis, that's sort of short, I think, in the rare disease space.

The fact of the matter is there's a lot of things that can disempower us along the way. Right?

Jessica Armstrong: Absolutely.

Nicole Wipp: And it's a very tough battle to fight when you are also sick. And when you're being told, well, like, well, like in my case, I, you know, I kept being told, well, you just have anxiety. And [00:25:00] I intellectually knew that that wasn't the problem, but I couldn't fight the fight for whatever reason.

And it just discouraged me to go to the doctor and ultimately led to my, having an emergency situation. But I, you know, and, and this is my story, you, your story, similar kind of thing, all these people, similar kind of thing. And so instead of like your cousin, maybe she didn't feel that she had enough power within herself to fight the fight about I'm actually second, this, you need to look more into this. And that led to her death.

Jessica Armstrong: I think in her case, knowing her, I think that probably what happened to this, she was ashamed of the weight gain. It did come on very suddenly. She'd always been a very fit active girl and, and she was young. And to suddenly have this, this 30-pound weight gain was traumatic for her.

And so when the doctor brought it up, she was too ashamed to say, yeah, but this happened really suddenly. I'm not sure that there's not something causing it. You know, the kinds of things that might've led to, to a more nuanced discussion of that particular issue. And, you know, the thing about pointing to mental health reasons for physical symptoms is that.

The patients at some point can begin to believe it. They can begin to believe maybe it is in my head. Maybe there is something wrong with me. Maybe I am unstable. Maybe I am imagining these symptoms. And what's hard is that that leads to a couple of things. A because mental health is still such a stigmatized issue in our society.

It often decentivizes patients from reporting their symptoms because they don't want to look. You know, now that someone believes that they are imagining things, they don't want to make it worse by saying, well, I've imagined something. And they don't want to add fuel to the fire by continuing that perception or adding to that perception.

And so it can be very, very harmful and very, very detrimental to a patient survival. And. That's why, you know, it is so important for us to advocate for ourselves, but also to have a good network of family and friends around us that we can talk with and say, you know, this is what they're saying, but I don't think that's the case.

I spoke with a woman recently who had shared that she was referred to group therapy and given all sorts of medications to control her anxiety and what they were calling bipolar disorder that was contributing to her perceived symptoms. And She said she was really having a hard time with it. And she happened to talk to a family member, a removed family member at a family event, and shared what she'd been through.

And the family member works in the medical profession and said, you know what, with your history, you really ought to look into pulmonary hypertension because it could be that's what's causing. And lo and behold, that was it. And it was the family member who said, I know that you are not bipolar. I know that you do not have anxiety issues. I know you, and I think it's something else. And here's the question you should ask.

Nicole Wipp: That is a great point. And that leads me to, I recently did an interview with Dr. Lisa Larkin and she's a women's health specialist. And one of the things that she suggested that people do, if you can't get answers or you feel like you're not getting anywhere is to take someone that knows you well, or a family member or a spouse with you to the appointment, because they're going to be able to give context where you may not, they also are going to be able to advocate where you may not. And they're going to be able to say so, like, let's say like I multiple times told my, my medical doctor, my primary care physician. I don't think that my problem is anxiety.

I have anxiety. Certainly, I'm an attorney, I'm a mother. I have a law firm you know, duh, don't we all, but that I know the difference between a major anxiety and what I'm experiencing, and I don't believe that's what it is, but he couldn't hear me, but let's say I would have taken my husband with me and my husband said no, this is not like she's not experiencing more anxiety than she did last year or the year before. If anything, it's less. If he would have said that the conversation probably would have gone differently because now here's another person backing you up and really being able to give context where you may not become believable, especially I think this is really important if you have a diagnosis of some mental illness or mental [00:30:00] health condition, and then you're starting to fight it. Cause then that, of course, what happens is it makes us look crazier. Even though the issue is not that we're getting crazier. It's that they're making us crazy. It's like so maybe if you had somebody that could like, like, just like that lady of her family member would have come and said, no, this is not her. This is not her problem. Even if that would have been that maybe that then becomes more believable and more of a directed conversation.

Jessica Armstrong: Absolutely. You're so right. You're so right. And it can be challenging with family because those who love us best, they don't want to see us hurting. They don't want to see us ill. And oftentimes they'll go through a sort of denial of their own where they'll say, oh gosh, you can't have this diagnosis. You can't have these symptoms. You can't be at the end of your life and they'll refuse to accept it. And patients often feel unsupported when their family members are working through those emotions.

And so it's important to sit down and have honest conversations to really communicate how you're feeling and what your needs are. And some of the resources in the patient's health advocacy toolkit are targeted to help patients do exactly that. But my first. Word of advice in this particular area would be, you know, not to give up and not to get frustrated and to realize that just as scary and as emotional as this is for you, the people that love for love, you are also going through a scary emotional time. And we're not always good at compartmentalizing our feelings to support others because we're here.

Nicole Wipp: Definitely I, and I think that I've noticed that among the LAM community as well, there's a lot of frustration. There's a lot of support among family, but then there's also a lot of frustration with family and other loved ones. And part of that of course, stems from both pulmonary hypertension and lamb and other, a lot of rare diseases are actually invisible illnesses. Right?

Jessica Armstrong: Absolutely.

Nicole Wipp: So you, through the whole time, except for maybe at your sickest looked perfectly fine.

Jessica Armstrong: Yeah, nobody could tell that I was sick. I, in fact, you know, even I for, at the beginning of my symptoms, especially chastise myself, oh, you'd need to go to the gym more. You need to move more. You need to exercise more, which was outrageous. I was getting a crazy amount of exercise. I was deployed and going on long trolls every day. I mean, it made absolutely no sense whatsoever. You know, as easy as it was for me to think those things about myself, imagine someone else who wasn't in my body wasn't feeling things that I was feeling how easy it was for them.

And I looked fine. I looked normal. I, you know, I could talk, I wasn't unable to, to cope with the day-to-day, for the most part. Other than the fact that I suddenly started sleeping an absurd amount of time, but you know, that was it. And so, yeah, Nicole you've, you've really hit the nail on the head.

Invisible illnesses make that particularly hard and. There's like, there's a growing dialogue about that. Folks are talking about invisible illnesses, more in the context of handicapped and disabled parking designations. I don't know if it's just that the media is paying more attention or if it's happening more, but I've been reading about patients of all sorts of invisible illnesses who are approached by what they call parking lot vigilantes, you know, you have absolutely no business parking in this space and we've actually had developed resources for our community. It's a little card that they can hand out and say, actually, I do have a reason to park in this space.

I have pulmonary hypertension and you know, maybe this moment can become a learning moment for you so that you learn about this rare disease that impacts so many people. But it's uncomfortable. It's very uncomfortable when it happens to you.

Nicole Wipp: So, these are such great tips about early diagnosis and awareness and, and really, I think the lesson I'm taking from this conversation, and I hope everybody else does, is that the, one of the biggest keys to diagnosis, is self-advocacy would you agree?

Jessica Armstrong: Absolutely. Absolutely. And that's why we felt that the toolkit was such an important thing to develop. In fact, the chair and the founder of our campaign is Dr. Lynette brown at Intermountain Healthcare in Utah. And she is she's the one who wrote on the findings of the reveal registry, which is the largest and most recent patient registry on pulmonary arterial hypertension. And this toolkit was her baby because she said, you know, I don't know how to get patients to my [00:35:00] door if they don't talk to me if they don't ask questions. If they don't advocate, and this is coming from a top expert in the field. So she's saying, gosh, I wish I knew how to get more patients to my door. Then you can rest assured that others in the field are having the same problem and that your primary care physician may have frustrations with not knowing how you really feel and not understanding. And so it's a, it's a two-sided coin. We have to communicate so that we can help them serve us better.

Nicole Wipp: Right. Exactly. Because at the end of the day, we can blame our doctors. All we want for not getting us answers, but very often part of that is, are not articulating the situation, well enough for them to be able to get us there. And so I think that that's so crucial because a lot of patients really do not understand that they don't understand. They think you can just dump it on the doctor and expect some magic answer. But that is definitely not the way our medical system works.

Jessica Armstrong: No, not at all, especially with the short time that most of us have in doctor's appointments nowadays. I think the national average is under seven minutes, which is just appalling. But that's it. I mean, we, and I'll give you a tip actually, that I picked up from some of the medical professionals in the PHA community. So often patients go to the doctor and they think I have to speak "doctor". So they try to use medical terminology and to really communicate in the level that they think the doctor would talk about the disease or the symptoms in, and actually, a better approach is to keep it as simple and straightforward and as plain English as you possibly can. Because that makes sure that there's not going to be any misunderstanding that you won't inadvertently misuse the term or be misunderstood. Keep it basic. Keep it simple. Think about how you're feeling and describe it in whatever way you can.

Nicole Wipp: That's a great tip. And I think it is important because we, we do, I think when people get intimidated and you feel like you've got to appear smarter than you might actually be. And at the end of the day, a doctor doesn't expect you to have a medical degree, nor do they want you to think that you do. And you know, you just have to remember your person and that's why you're going to them. Right. And it's for their knowledge. And so, right. I think that's great. Like, cause it's definitely a common thing, humans, you know, that's human behavior. We want to all, we don't like to look dumb.

Jessica Armstrong:  No, and it's not looking dumb. It's just communicating clearly. So I find the best rule of thumb when you're trying to explain. And I used to use this when I was a teacher, you know, Tell my students explain it to me. Like I'm a five-year-old. If you can do that, then you really understand it and I'll really understand it. And that's okay.

Nicole Wipp: That's right. So tell us how people can learn more about pulmonary hypertension and how they can find out more about the PH association, how they can contact you, whatever it is that you think that they need to know, how can they get more information?

Jessica Armstrong: Well, the first place I would send them is to the PHA website. And that is phassociation.org. The early diagnosis campaign. You can find more information about that at sometimes it's ph.org. I'm also on Twitter and my Twitter handle for the campaign. @JessaPHa and PH association is also on Twitter.

We encourage you to connect with us and we do answer questions. You'll find us on Facebook too. We want to make sure that wherever you want to meet us, we're there to open the door. But you know, I'm happy to take questions. If you want to email me earlydiagnosisofphassociation.org, you can also do that. I'm here to help. That's what we do.

Nicole Wipp: That is so great, Jessica. And we are very appreciative of it because the whole beginning of this conversation was that one of the keys to successful diagnosis recovery. Getting through it is having a good community around you. Right. And that's what you're there for. And other associations associated with a rare disease. Get yourself connected because it's going to make all the difference to the quality of your life later.

Jessica Armstrong: Absolutely.

Nicole Wipp: And all of these links will be in the show notes for this episode. So if you didn't get a chance to write those down, just visit the website, get on the show notes and you'll be able to access any information that Jessica shared with us as well as the patient guide because it is such a great resource.

Thank you so much for joining us.

Jessica Armstrong: Thank you, Nicole.

[00:40:00] Nicole Wipp: Thank you for joining me on today's episode of the smart planning 101 podcast. To read today's show notes. Access the resources discussed in this episode, or to reach my guest, please visit smartplanning101.com/28. That's smartplanning101.com/28.

Thanks for listening.