Explore "bloodclot" with insightful episodes like "53: How to Avoid Blood Clots During Holiday Travel", "Airey Bros. Radio / John Joseph / Ep 213 / Cro-Mags / NYC Hard Core / Bloodclot / Plant Power / PMA / Triathlon / Discipline / PMA Effect", "Airey Bros. Radio / John Joseph / Ep 213 / Cro-Mags / NYC Hard Core / Bloodclot / Plant Power / PMA / Triathlon / Discipline / PMA Effect", "John Joseph on discipline, PMA, and nurturing the spirit soul" and "Pulmonary Embolism" from podcasts like ""Sapio with Buck Joffrey", "Airey Bros.'s Radio", "Airey Bros. Radio", "Terrain Theory" and "PodcastDX"" and more!
Buck provides ways to prevent getting deep venous thrombosis during long flights and drives. Deep Venous thrombosis refers to clots in the deep veins of the legs that can break free and cause a life threatening emergency called pulmonary embolism which represents blood clots in the arteries of the lungs.
John Joseph McGowan is a musician, author, motivational speaker, and founder of John Joseph Discipline. He is the lead singer of Bloodclot, the former lead singer of Cro-Mags, a 13x Iron Man competitor, a discipline coach, and a proponent of PMA (positive mental attitude).
In this conversation with John we discuss:
You can learn more about John Joseph at johnjosephdiscipline.com or follow him on Instagram.
Learn about the Vedic Teachings.
Terrain Theory episodes are not to be taken as medical advice. You are your own primary healthcare provider.
If you have a Terrain Transformation story you would like to share, email us at ben@terraintheory.net.
Learn more at www.terraintheory.net
Music by Chris Merenda
This week our Co-Host and producer is the guest once again! The topic for this week is Pulmonary Embolism, which is a blood clot or thrombus in the lung.
A pulmonary embolism (PE) is a sudden blockage in a lung artery. It usually happens when a blood clot breaks loose and travels through the bloodstream to the lungs. PE is a serious condition that can cause:
PE can be life-threatening, especially if a clot is large, or if there are many clots.
The cause is usually a blood clot in the leg called a deep vein thrombosis that breaks loose and travels through the bloodstream to the lungs.
Anyone can get a pulmonary embolism (PE), but certain things can raise your risk of PE:
Half the people who have pulmonary embolism have no symptoms. If you do have symptoms, they can include shortness of breath, chest pain or coughing up blood. Symptoms of a blood clot include warmth, swelling, pain, tenderness and redness of the leg.
It can be difficult to diagnose PE. To make a diagnosis, your health care provider will:
If you have PE, you need medical treatment right away. The goal of treatment is to break up clots and help keep other clots from forming. Treatment options include medicines and procedures.
Medicines:
Procedures:
Preventing new blood clots can prevent PE. Prevention may include:
Open your mind and heart before you listen to this episode!
Look, we all know this is a hot topic and can be EXTREMELY devisive. Giving Danielle a platform to speak about what is happening to her, her process, and the harm that comes from complete dismissal is the right thing to do. Her story is real.
So as you listen, hear her. Don't put other viewpoints on her.
She shares how she went from a happy, healthy human to someone who has been hospitalized multiple times, and has permanant damage to her body. She shares the dismissal from doctor after doctor who were confused and unsure about what what happening to her - and how the possible tie to the Covid 19 Vaccine slowed getting answers.
Thank you for listening to her today. It is her hope, as it is mine, that sharing stories of reactions will result in more research - more science.
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Vaccine Injury Resources:
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https://react19.org/
Front Line Critical Care Alliance:
https://covid19criticalcare.com/
This week we are discussing Atrial fibrillation or A-fib. A-fib is an irregular and often very rapid heart rhythm (arrhythmia) that can lead to blood clots in the heart. A-fib increases the risk of stroke, heart failure and other heart-related complications.
During atrial fibrillation, the heart's upper chambers (the atria) beat chaotically and irregularly — out of sync with the lower chambers (the ventricles) of the heart. For many people, A-fib may have no symptoms. However, A-fib may cause a fast, pounding heartbeat (palpitations), shortness of breath or weakness. (Credits: https://mayocl.in/3USz4TH )
This week, I am joined by my dear friend Mary Catherine Tomlinson and her newly married daughter, Marlee Martin. Marlee shares how they believe a prescription for birth control ultimately led to massive blood clots in her leg, lungs, and heart in the fall of 2021. In this episode, Marlee and Mary Catherine share their journey with Marlee's health, the details of her life-saving surgery, and how their faith in Christ carried them through it all. After Marlee's horrendous experience with birth control, she and her mother strive to educate young women on its dangers.
Marlee Martin grew up in Birmingham and graduated from Briarwood Christian School in 2017. She then went on to college at Alabama University. After graduating from Alabama in 2021, Marlee started law school at The University of Alabama School of Law. Marlee married her husband, Jacob Martin on June 18, 2022.
When she was sixteen, Marlee had a cyst removed from her ovaries. Since then, she has been on and off of birth control in order to balance her hormones and prevent future cysts. Her doctor put her on Yaz, one of the strongest and most dangerous forms of birth control on the market. Fast forward to September of 2021, and Marlee started experiencing pain and swelling in her right calf. She eventually went to get an Ultra Sound done on her leg, but the ER doctors told her they could not find anything. Marlee continued to experience pain in her leg, and after the pain spread up her leg she massaged it out with a foam roller. After that, she experienced being severely out of breath and a dramatic increase in her heart rate. When her heart rate reached 190, Marlee called 911 and went to the hospital. Finally, the doctors performed tests and realized that she had clots in her lungs, heart, and leg. Marlee was eventually transferred to UAB, where Dr. Ahmed performed life-saving surgery on her.
After Marlee was transferred to UAB, it was quickly determined that she needed surgery immediately. The doctors removed 36 inches of blood clots (pictured above) just from Marlee's knee to hip, along with many others. During the surgery, Marlee's heart stopped. Her doctor called for the life-saving machines to be prepped. However, something prompted her doctor to continue removing the clots from her heart as quickly as possible. This decision turned out to save Marlee's life, and her heart started beating right after. Marlee and her family know that this was God, directing the surgeon's hands and sparing her life. After the surgery, countless doctors called Marlee the "miracle girl" because they had only performed autopsies on people with her severity of clots.
Throughout this entire journey, Marlee and her family depended completely on the Lord to sustain them and comfort them. Days before Marlee's surgery, she journaled out a prayer proclaiming her trust in and submission to the Lord's sovereignty and goodness. Mary Catherine shared that Marlee's surgery showed them how truly trustworthy God is. She shared that as a parent there is always so much she can do for her children. However, during Marlee's surgery, she could do nothing but depend on God to perform a miracle.
After Marlee's experience, she and her family believe that these clots were caused by her birth control, Yaz. A study that Marlee found said that women who are on that particular birth control are three times more likely to encounter blood clots. When Marlee was first prescribed birth control, the doctor did not share the risks or possible side effects of the medication. Now, both Marlee and Mary Catherine strive to educate young women on these forms of dangerous birth control.
One of the next books I’ll be releasing is called, The Friend at the End, which tells the story of the major stroke that I suffered in 2011. The first part of it culminates with a few major realizations I had when I understood that I very well might have been dying. Once I was released from the hospital, these understandings played a profound role in my personal growth.
Over the next few episodes, I am going to relate the events that led up to these realizations. Take your time, let the background story unfold and see if it stimulates any insights in your personal awareness. There’s a good chance that it will.
By way of to a quick overview, even though we all do our best to plan for the future, we all know that you can never really know what’s coming around the next corner. Usually, our lives are filled with a set of normal, everyday routines. But every once in a while, something hits you out of the blue and everything gets turned upside down. Suddenly, you find yourself living in a different world.
Like most of us, I’ve had my fair share of these unexpected lightning bolts. But the one that hit me in 2011 wasn’t just about my world being turned upside down. It was about it actually coming to an end.
This story is a memoir of those ground shattering days, but it’s not what you might expect. While it does deal with death and impermanence, it’s not a dark or depressing story at all. In fact, you may find it to be quite the opposite.
There are a lot of layers to it as well. For one thing, it all began with a profound near-death experience. This is now quite a timely topic, but mine was a little different from most described in popular culture. It didn’t have a lot of cosmic bells and whistles to it. It was much more down to earth. Still, it was deeply metaphysical, and its impact on me continues to grow to this day.
I survived the ordeal literally by the skin of my teeth. A huge blood clot had been released into my system. By the time I got to the hospital, it was too late for me to be helped by any medical interventions, so my fate was entirely dependent on where the enormous clot finally landed. All anyone could do was wait, watch, and pray, so it was simply Russian Roulette, medical style.
For about thirty-six hours, I lingered in the twilight zone of a semi-coma, drifting precariously between life and death. Eventually, the clot came to rest in an ideal location, my life was spared, and suddenly, all was well.
I remained in intensive care for ten days, and my doctors and nurses kept telling me how close I had come to death and how much I had to be grateful for. After all, no human hand had anything to do with the merciful outcome I had received, and the chances of it happening had been less than one in a thousand.
As you can imagine, it was an extraordinary journey, but it all began in a most ordinary way. Saturday, May 28, 2011, was a normal day, much like any other. Nothing special. Just another day in the life.
Actually, on a happy note, it was the start of Memorial Day Weekend, which is always one of my favorite times of the year. In America, it marks the beginning of the beginning of summer, when everything slowly starts to slow down. Even the pursuit of happiness isn’t that much of a chore anymore.
I was 62 years old. More precisely, it was day 22,718 of my life. It began as a beautiful, sunny morning in late Spring. But by nightfall, I would be at death’s door, lying nearly comatose in an intensive care unit, with a kindly neurosurgeon telling my badly shaken wife to hold my hand and keep talking to me. “Just – just don’t let him slip away,” he cautioned her, somberly. “We might lose him tonight.” The outlook was bleak, and if it hadn’t been for an incredible stroke of luck, or the merciful Grace of God, or both, day 22,718 might very well have been my very last.
But let’s go back to that morning. You can relax, by the way. This is far from a sad story. It’s not even that intense.
For the most part, I was happy and healthy. And it had been a positive period for me financially as well, which was always welcomed because trying to make a living as a writer can be a daunting task, as every storyteller knows.
You work in a world of constant feast or famine, trying to navigate your way through a complicated network of interconnected challenges. To start with, you take a mixture of whatever knowledge, skill, and insight you can muster, and shape it into a framework that makes some kind of sense. After that, whether you’re inspired or nuts (often both), you try to turn it into a creative work of art. Weaving your magic carpet made out of words, you go through an endless round of rewrites and revisions. Then, after enduring this miniature version of infinity, complete with its ongoing ping-pong match between heaven and hell, with you as the ball, you finally try to get the thing off the ground.
Meanwhile, you have to constantly maintain your cash flow. It’s a little like a tight-rope act and your path is as narrow as a razor’s edge. While it’s often filled with tremendous high points of majestic inspiration, you’re always aware that you’re working without a net, and you can never lose your balance. It takes laser focus, and if you want to stay with it, you quickly learn two reliable tricks of the trade - you don’t look back and you never look down.
Luckily for me, about a year earlier, I had gotten involved with an innovative solar energy company as a side-job and had run into some financial sunshine. There were favorable government incentives in place and plenty of money was flowing. The outlook for the future was strong and a secure sense of optimism fueled the industry. I was in pretty good shape.
So, on this particular morning, with summer over the next horizon, I was ready to just let go and have a good time. According to the news, we were heading into a run of bright, sunny days and everything seemed lined up for a perfect holiday weekend.
My wife and I lived in a condominium that faces an enormous park, on the edge of Philadelphia. Our daughter grew up with us there, but she was down the shore, celebrating the completion of her freshman year of college. The building has a large oval swimming pool at the edge of a beautiful, emerald-green forest. That morning, as I stood on our balcony and gazed out at the lush panorama of verdant trees swaying gently in the flowing breeze, I felt like I didn’t have a care in the world.
I went down to the pool and checked in. It was still fairly early and there was hardly anyone there. The woods, bathed in the splendor of nature, were a chirping bird land, echoing the cheerful songs of its winged residents, all singing in tune with the glorious weather report.
As the sweet fragrances of the forest filled my lungs, I sat down on a comfortable lounge chair, laid back, and took it all in. I was in the prime of my life, safe, contented, and secure. All was well and I was ready to enjoy the next stretch of whatever. What a perfect way to start the summer!
But these feelings of serenity didn’t last all that long. After just a few moments, something within me seemed to change. It was subtle, but I had the uneasy feeling that something wasn’t quite right. I soon realized that I felt a little queasy. I wasn’t downright sick or anything, just slightly nauseous.
My first thought was that it might be some kind of delayed indigestion or maybe even food poisoning. The night before, we had eaten dinner at a new falafel place in town. The sandwich was good, but there was a weird spice in it that I didn’t really like. Still, it wasn’t all that bad and I decided to finish it anyway. Then I capped it off with a big, ultra-sweet dessert.
I figured that my stomach distress was probably just a delayed reaction to the meal. “It’ll just go away by itself,” I thought, not too concerned. Worst case scenario, there was a men’s room nearby and I could always go in there and throw up if I had to. No big deal. I was sure I’d feel better soon.
But I didn’t, although it didn’t get much worse either. It was just kind of a steady, slightly sick feeling. Then something weird happened. As I was lying there, I noticed that there was a little more light than usual, coming from my left side, just outside of my peripheral vision. It was like someone had switched on a bright lamp over there.
I thought it might be the sun, so I turned to my left to see what it was. But there was nothing there, just the trees in the forest. Everything was normal. But the bright light was still on my upper left, just outside of my peripheral vision. I tried moving my head around, but no matter what I did, the light always stayed in the same position.
I decided to close my eyes and see what happened. Even with them closed, the light stayed on, and I quickly understood that it wasn’t coming from anywhere on the outside. I realized that the light was actually within me and it was deeply unsettling. Suddenly, my nervous system went on high alert and my thoughts quickened. Any idea that this was indigestion went right out the window.
I needed to calm myself down and make a serious assessment of what was happening to me. First of all, how bad was I actually feeling? I definitely didn’t feel well, but it wasn’t all that bad. It had gotten a little worse, but that was probably just from fear. The nausea was still only mild and wasn’t particularly troubling. But this light thing was a whole different story. It had come out of nowhere, I couldn’t tell where it was coming from, and it certainly didn’t seem to be going away. If anything, it had gotten a little brighter.
My next thought was that I’d better check my heart. We have a bad history of heart disease in my family. My father had dropped dead of a sudden heart attack at the age of 52. My uncle, his brother, had also died of heart disease in his mid-60s, and my brother needed bypass surgery in his mid-50s, which saved his life in the nick of time. I had recently had some problems of my own, but they were fairly minor. A few months earlier I had been diagnosed with mild Atrial Fibrillation, but I was asymptomatic and was on medication that seemed to be working fine.
I was pretty familiar with the standard symptoms of a heart attack and I ran through them quickly in my mind. My heart seemed to be beating normally. It wasn’t racing or missing beats. I had no pains in my chest or either arm. I wasn’t lightheaded or dizzy. I wasn’t sweaty and my breathing was fine. Even though I still had some mild nausea, it certainly didn’t seem like I was in the throes of a heart attack. No, I was pretty sure that my heart was okay.
What about a stroke? Although I didn’t know as much about it as I did with heart attack symptoms, I did know a few things because a serious stroke had marked the beginning of the end of my mother’s young life. So, I did a quick check.
I got up and moved around a little. I stood on one leg and then the other. My balance was fine. I checked for numbness and had none anywhere. I moved my facial muscles all around, making different expressions, and everything was normal. So were both arms and legs, hands, and feet. I checked my ability to think. I knew the day, month, and year. I counted to twenty forwards, then backward. Then I cataloged every solar deal I was working on and knew the details of each one down to the penny. My mind was sharp.
Next, I checked my ability to talk. I quietly spoke some random words out loud and then recited the first half of the Gettysburg Address. No problem. No slurred speech or anything like that. I finally ruled out a stroke. All in all, everything seemed okay. If it wasn’t for that damned light…
Dr. Kelly Diehl talks about bloat in dogs (also known as gastric dilatation and volvulus) with Dr. Elizabeth Rozanski, an associate professor at the Cummings School of Veterinary Medicine at Tufts University. Rozanski discusses the physiology of bloat, factors affecting prognosis, and prevention. She also covers her Foundation-funded research, which studied how bloat affected blood clotting and heart function.
Daniel Griffin updates the clinical situation with COVID-19 patients, followed by analysis of the remedesivir clinical trial results, and answers listener questions.
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Guest: Daniel Griffin
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Wayne Beall is a CTEPH (Chronic thromboembolic pulmonary hypertension) patient from Idaho. Wayne’s work and "wondering" took him through many Western states, where he learned the love of skiing, but soon symptoms kept him off mountains. Misdiagnosis is common with pulmonary hypertension and because of that, Wayne got a lot worse before he found a proper PH team. Wayne discusses his multi-year journey that led to a proper diagnosis.
My name is Wayne Beall. I'm from Boise, Idaho.
I'm a local pulmonary hypertension support group leader, co-leader, and participate in online pulmonary hypertension groups. I was diagnosed in January 2005. After over five years of misdiagnosis, my shortness of breath was continuing to get worse, and I felt something was wrong. It caused my CTEPH (Chronic thromboembolic pulmonary hypertension) to progress to an irreversible status, along with extremely high pulmonary hypertension pressures. I had surgery in June 2005 at the University of California, San Diego, which improved my quality of life and longevity.
Oral medication has improved my pulmonary hypertension pressures, allowing me more physical activity, but still requires supplemental oxygen 24/7. Those that are newly diagnosed I recommend participate in online groups, find a local pulmonary hypertension support group and talk to them but, most of all, ask lots of questions to become more educated. When I first was diagnosed I was relieved to hear it was not cancer. That was the worst disease I knew of at that time. Now, I know that's not true. Although there is no cure for pulmonary hypertension, and there is for most cancers, there is medication and surgery for CTEPH that will allow a better quality and longer life.
I have found another important part of living longer is to eat well, healthy food in good portions, sleep as much, and when, as needed. Things don't have to be done today, and find things that you enjoy doing, like hobbies, reading, I ride my ATV, meditate, walk, enjoy life, and choose to have, and live, a positive life. It took over five years for me to be diagnosed correctly. Many, many doctors, I can't even remember how many pulmonologists and cardiologists. Each one would do a bunch of tests, including some right heart catheterizations, and they would each say, "I don't know what's wrong with you. I don't know how to help you," so I went to another doctor, at least six or eight pulmonologists, and cardiologists, so 12 to 16 total different ones, and I was diagnosed, actually, by accident.
One of the last pulmonologists that I had decided he wanted to do a CT scan, and I'd never had one done before. I'd had several right heart catheterizations, and every one of them the doctor that was doing it would say, “there's something wrong with our equipment. Your pressures cannot be that high. I don't know what's wrong with you.”
This one decided to do a CT scan, and that's when they find the clots. At that point, that was the end of 2004, but they would not let me leave the hospital because of the clots, so I was literally in the hospital for three days doing nothing, just monitoring me. On the third night that I was there a cardiologist came in that I had never seen before, never talked to before, didn't even know who he was. He was very young at the time. He just walked in my room late at night, looked at my chart, and then said, "I know what's wrong with you and I know how to fix it."
I go, "How the hell could you possibility know what's wrong with me? You haven't done any tests. You haven't talked to me. All you did was read my chart, and you think you know what's wrong with me?" He goes, "When I was an intern for Cardiology at the University of California San Diego I had break time with another intern who was a pulmonologist studying pulmonary hypertension. We sat and talked about symptoms for different diseases, and he told me about CTEPH and the symptoms, and you have those symptoms, and you need to go to a pulmonary hypertension specialist in Seattle, or Salt Lake City, have that discussion with them, then go to San Diego to have surgery."
I was so astounded I couldn't speak. I had no idea what he was talking about, first of all, and second of all, after all of this time of doctors saying, "I don't know what's wrong with you but I know there's something wrong," said, "This is what's wrong you, and this is how to fix it." It was totally amazing to me. The problem, though, was I couldn't imagine a doctor, either pulmonologist or cardiologist, not knowing what was wrong with me. It just astounded me that there were medical people out there that couldn't figure it out for that long a period of time, and I kept getting worse that whole time.
It was kind of like, "Do I need to move to a bigger city? Do I need to find a specialist that knows something that I don't know anything about? How am I going to solve this, because it's getting worse?” As soon as he said that, though, I knew. I resonated with the fact that he knew what he was talking about. He knew what was wrong with me, and he knew that that solution would fix me, or at least sort of.
I had the surgery in June 2005. Because I was so long misdiagnosed the clots continued to go through my heart into my lungs. Fortunately, the clots did not go into my brain to give me a aneurysm or stroke, and they went into my heart which, technically, is not better but, I guess, kind of it is better. The point being, they continued to build up and go deeper, which when they originally in San Diego were trying to figure out whether they could help me or not, whether I was a candidate for surgery or not, they told me beforehand that they knew they were not going be able to get all the clots out, that I would never be able to breathe, and probably run or do any extensive physical activity without running out of breath, so I may be on oxygen for the rest of my life.
At that point, I knew it because they told me when I got there, "We think that you have maybe three months to live if you don't have this surgery," so I was pretty much ready to do the surgery that day. Fortunately, they were able to get enough clots out, and with the oral medication for pulmonary hypertension, I was able to now say that, technically, I don't have pulmonary hypertension anymore. It's ranging between 34 and 37 in my pressure. It was 125 before surgery. That in itself is evidence that it's beneficial, but prior to surgery I have been on supplemental oxygen 24/7, especially with any kind of physical activity or exertion. It's because the residual clots that are still there.
What I've learned through this experience is that anyone who even has a possible inkling that they might have blood clots, whether in your lungs or not, have a pulmonary hypertension specialist check for you immediately. The longer you wait the more likely you are to have long-term issues and less mobility, a shorter life, and it's important. Just do it. The important thing is to follow the symptoms that every one of us have, even with just regular pulmonary hypertension, but they have to be aware, the doctors, and nurses, and any medical people, have to be aware, initially, that that is a symptom, exactly the same idea or path that my cardiologist took when he was an intern down in San Diego. You don't have to learn about, and study about, the disease, but know the symptoms, and then direct to the proper specialist to help resolve the issue. Know the symptoms, that's the key.
Pulmonary hypertension is a progressive disease and it could kill you, but if you get help get some kind of medical attention for that issue, once you are sure that you have pulmonary hypertension with a right heart catheterization, and it is validated by a doctor with the pressures, make sure you get a copy of that test results and the doctors notes, and immediately go to a pulmonary hypertension specialist, because the sooner you start getting it resolved, the longer life you will have, the better quality of life you'll have, and the more you'll be able to do physically throughout your lifetime. Don't wait.
My name is Wayne Beall, and I'm Aware That I'm Rare.
Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instagram, youtube & linkedin @phaware #phaware #CTEPH
Wayne Beall is a CTEPH (Chronic thromboembolic pulmonary hypertension) patient from Idaho. Wayne’s work and "wondering" took him through many Western states, where he learned the love of skiing, but soon symptoms kept him off mountains. Misdiagnosis is common with pulmonary hypertension and because of that, Wayne got a lot worse before he found a proper PH team. Wayne discusses his multi-year journey that led to a proper diagnosis.
Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instagram, youtube & linkedin @phaware #phaware #CTEPH
CTEPH patient Arlene Shuler shares her pulmonary hypertension diagnosis story which started as breathlessness in 2005. Arlene is a dancer and awareness ambassador, who speaks to patients, medical professionals as well as staff of pharmaceutical companies to educate people about CTEPH and PH.
Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware #CTEPH
My name is Arlene Shuler and I'm from Harlem, New York.
My connection to CTEPH, via pulmonary hypertension was back in May of 2012 when I had a severe problem with my breathing. The doctors were like, “Something's going on," and I had to be immediately hospitalized and they did a d-dimer blood test and it determined that I had blood clots in my system and because of my symptoms they said I had blood clots in my lungs. I had the surgery to remove the blood clots in October 2013. They worked out very well. I'm doing most of the activities that I normally used to do, which is dance and I love to dance. I'm not getting as winded when I come off the dance floor anymore. I don't have to take any type of lung medications like everyone else is taking.
My journey stemmed from 2005. It was initially missed, I'm not going to say misdiagnosed, but it was diagnosed as asthma. I went on an inhaler for 28 days and then miraculously everything went well. Then in 2010, I started having some severe breathing problems and I knew I wasn't overweight. I was like, "What's going on with my body?" Then it started to escalate, and in 2012 I was going for a stress test. At the stress test appointment in Manhattan they immediately saw something was wrong with me, I don't how I physically looked and they were like, "No, we're taking you to the emergency room." It was at that time when they took the blood test, a d-dimer test and they said, "You have blood clots in your lungs."
I take life differently from other people. I'm more of a positive person so if something was wrong with me, which it was, I just try to let the doctors feel more comfortable with telling me what was going on and as their comfortability became relaxed then they were able to say, "Okay, this is what's going on. This is what we think you should do." My pulmonologist, she was so great with educating me and the staff at the hospital was great at educating me. Everything was basically on point.
Awareness is so important to me because just like asthma or any other type of respiratory infection, it's always, "I have problems breathing, I can't breathe," so that language is so ordinary, it's so sameness that we are trying to enlighten others to say, "Okay, we can be same but we don't have to reinvent the wheel but what other language can we use?" With Bayer with the CTEPH program it's basically being as a patient trying to educate the hospital staff and the nurses of course and then the hospital staff in Bayer itself, the staff with Bayer , to try to educate them on different ways of how we can get the information out to the public and to the medical profession.
My doctors back home and my doctors in Boston, because I had my operation in Massachusetts General Hospital in Boston, they call me and have me speak and ask me, can I speak to potential patients about the operation and about my personal experiences so that's one outlet for me to advocate for it. Then coming to the Bayer CTEPH meetings, that's another way and speaking with guys like you.
People will be surprised to know that I don't look like what I've been through. My illness is an invisible situation to most and it's not until we had the Bayer film, I should say last year and I told people, "Okay, this is what happened last year in November. Look at this video." They call and say, "Oh my gosh, I didn't know it was that severe, I didn't know you was going through all of this that you're telling us." Now they can actually personalize it if you will, and hear what I had to say. They are just calling me left and right, it's like, "Wow."
I don't want anyone to feel sorry for me because it's not that type of situation because I let them know I'm still here, I can still make a difference. I can still be a positive powerful impact to others.
Thank you for wanting to interview me. Thank you for being a part of phaware because it's situations such as this that's going to educate not only patients but the other community of patients as far as the PH, pulmonary hypertension and other CTEPH patients as well.
My name is Arlene Shuler and I'm aware that I'm rare.
CTEPH patient Arlene Shuler shares her pulmonary hypertension diagnosis story which started as breathlessness in 2005. Arlene is a dancer and awareness ambassador, who speaks to patients, medical professionals as well as staff of pharmaceutical companies to educate people about CTEPH and PH.
Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware #CTEPH
CTEPH patient Margaret Owens shares her pulmonary hypertension diagnosis story and how he life changed after she received a V/Q Scan and surgery to cure her rare form of PH.
Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware #CTEPH
My name is Margaret Owens from Richmond Virginia. In 2011, I was on my way to work and I got in my car and I only could take a few steps without getting short winded. I moved a little while further and I said oh wait a minute. I got so I could count to 40 before I had to stop and rest.
I went to the emergency room and they told me I was having a heart attack. I spent the weekend there. Then they did a cardiac cath and that led me to know that I had pulmonary hypertension. In 2012, they found the clots by doing a V/Q scan and then they sent me to California to have surgery. Three days later, I felt like a new person far as walking and breathing. I could actually breathe.
To go up a bunch of steps was impossible, to go up an incline was impossible for two whole years. It took away so much out of my life. I said to my siblings, I said, "If I have to live like this I can't do it." I can't do it because I'm an outgoing person and I did a lot of volunteer work. I just wanted to go out and do what I did best. Pulmonary hypertension and I did not get along doing that. Just anger at first. I was angry.
I said what's going on. I talked to the Lord about it and then I said okay wait a minute. I was getting depressed, I was downtrodden, it was just awful. It was a terrible experience and I don't want to wish that on anyone. Anything I can do to help somebody else, that's what I want to do.
The day that I woke up they got me up, walked me around, I could do the six minute walk. After I did the six minute walk I start doing the twelve minute walk and after that I was going up and down the steps. I stayed in California about three to four weeks. When I got home I could actually go upstairs and go to my bedroom and it felt so good, felt really good.
I joined a support group and I listened to everybody's story. Of course, everybody's was different from mine. It's about 23 people in my group, I'm the only one that had the type that I had, the CTEPH. Everybody else had a different type. I thought it was just such a rare thing for everybody to be having different things. Some of us on the same medication. Medication was so expensive. Then we got the medication. Started taking it and doing better.
When I first got this thing, I said what is this? When I went into the hospital my doctor said to me, "You have pulmonary hypertension." I said, "What is that? Is that something a pill I can take and it'll just go away?" He said, "Oh no." I said, "You got to be kidding me." Of course I got a second opinion and when I got my second opinion they had told me, said, "You going to see a man with a bow tie and he knows what he's doing." I saw a man with a bow tie and he told me and I believed everything he said because he was so sincere and he had so much empathy.
When I listened to him and he told me that he was going to send my records to California for them to review to see if I was a good candidate, and he said, "Would you be willing to go?" I said, "Can I go tomorrow?" That's how bad I felt.
During the course of my work time they was doing some construction there and they had built this wall. They had all the nurses pictures, all the doctors pictures, because I work at the hospital. They had all the doctors pictures and different clinics on the wall. That would be my excuse. Every morning I would stop and read everybody's name that would give me my break in order to get in from my car to my job. I knew everybody. When I met them in the hallway I said “Oh, you are out there on the sign!” I just made a joke out of it for a long time but I was really depressed, really was depressed during that time. I feel so much better now. Even before I left California I felt so good. I felt so good.
The message needs to get out because people don't know. The V/Q scan really picked it up for me because I had had all the other tests and they couldn't see why, but the V/Q scan really picked it up for me. Plus, people need to be aware because you feel so much better. How you going to walk around? You can't live like that. You cannot live with pulmonary hypertension if you an active person. If you just want to lay around and do nothing, then you okay, but if you want to get out and do some things, you need somebody to help you. You need your medication, you need the doctors, and you need the surgeons like I had. It's important.
My name is Margaret Owens and I am aware that I am rare.
CTEPH patient Margaret Owens shares her pulmonary hypertension diagnosis story and how he life changed after she received a V/Q Scan and surgery to cure her rare form of PH.
Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware #CTEPH
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