by Carolyn Thomas ♥ @HeartSisters
As I’ve repeatedly insisted, my Heart Sisters blog readers are the smartest, kindest, sharpest and best-looking readers out there in the blogosphere. . . Today starts a series of Dear Carolyn posts starring my readers, each of whom has contacted me over the years to share, in her own words, the unique story of how she became a heart patient. Most of these, as you’ll discover if you keep up with this series, involve an “aha!” moment, or a plot twist that I didn’t see coming, or a lesson that just strikes me as downright useful for other women to know. And if you too have a personal heart story you think needs to be shared with the world (or at least the part of our world reading Heart Sisters each week), please share yours by contacting me here.
Today’s tale focuses on one of my favourite themes in women’s heart health: it’s possible to have both acid reflux (or any other chronic condition) AND a heart condition all at the same time. It’s from Debbie Orth, who lives near Cleveland, Ohio. (That’s Debbie in olive green at the centre of the photo above, having fun on a family cruise while celebrating her parents’ 50th wedding anniversary, just seven months post-heart attack!)
“I do not remember how I came across this website, other than it must have been after I suffered a heart attack at the age of 48.
“I had a 100% blockage of my LAD.* (Carolyn’s note: see glossary at the end for translations of some medical terms in this letter). I had symptoms prior to my heart attack which were diagnosed as acid reflux after having an endoscopy and colonoscopy. Five weeks after that diagnosis, I unlocked my front door and called 911. The paramedics and hospital saved my life by initiating the STEMI protocol. Had I not called 911 when I did, I would not be here today. It was also determined that I was probably having mild heart attacks leading up to the massive one I had.
“Interestingly, I did have acid reflux and as it turned out, heart issues, too. But I do feel the first physician should have explored more.
“The symptoms I had were not classic, but the day before I had the heart attack, I felt like crap. I started feeling something was terribly wrong. Again, they were not classic symptoms. Pressure in my sternum and a little tingling in my hand. What set off the alarm for me was my color. It was ashen, and I remember saying out loud to myself, “I’m in trouble.” The next morning was when I had the heart attack.
“That was back on December 5, 2014. That day I made a commitment to myself, family and friends that I would do everything I could not to let it happen again. I had my last cigarette that day, started cardio exercise five days a week once I was cleared by cardiac rehabilitation, and I eat healthier now. I am a big walker/hiker, and try to take a couple of 5 -6 mile hikes every week.
“I have gone through many ups and downs, doctors’ appointments, testing, therapy with a counselor, and finally I now feel like the ground I am on is a little firmer. I will never forget what happened. Forever changed and grateful to be alive.
“I follow Heart Sisters and share your posts with friends, hoping we can keep women better informed on heart disease. Far too many women lose their lives to heart disease when there are so many treatments available.
“I want to thank you for the wonderful information and resources you provide on the Heart Sisters blog. Wishing you all the best,”
Q: Do you too live with more than one serious condition that sometimes makes it hard to figure out which one’s acting up?
- Dear Carolyn: “Breaking up is hard to do”
- Dear Carolyn: “Did I have a ‘real’ heart attack?”
- Dear Carolyn: “My husband’s heart attack was treated differently than mine”
- Dear Carolyn: “I’m having the time of my life!”
- Dear Carolyn: “I was never one to complain. . .
- Dear Carolyn: “People can change for the better”
NOTE FROM CAROLYN: I wrote more about doctor-patient communication in my book A Woman’s Guide to Living with Heart Disease, (Johns Hopkins University Press, 2017). You can save 20% off the book’s cover price if you order it directly from Johns Hopkins University Press (use their code HTWN). Or ask for it at your local library, your favourite independent bookshop, or order it online (paperback, hardcover or e-book) at Amazon.
*Glossary of terms in this post:
- LAD: left anterior descending coronary artery, one of the largest of the arteries supplying blood to the heart muscle
- STEMI: ST elevation myocardial infarction, the most serious kind of heart attack, caused by a prolonged period of blocked blood supply to the heart muscle
- acid reflux: the backward flow of stomach acid into your esophagus (the tube that connects the throat and stomach) causing a feeling of burning in your chest (also called heartburn)
- endoscopy: a procedure used to visually examine your upper digestive system with a tiny camera on the end of a long, flexible tube
- colonoscopy: a test that allows doctors to look at the inner lining of your large intestine
- sternum: a long, narrow, flat bone at the front centre of your chest (also called the breastbone)
- For lots more patient-friendly, jargon-free translations of confusing terms, please visit my Heart Sisters glossary
15 thoughts on “Dear Carolyn: “I had both acid reflux and a heart attack at the same time!””
After my heart💜attack & stent in December 2014 at age 60, I was diagnosed with coronary artery disease. I also have a form of GERD that causes me to have burping episodes (they can wake me up at night) and apparently inflames my esophagus.
I rarely get the typical acid reflux “heartburn”. I have been to the ER several times, admitted only once, to be told I had an “esophageal event” or I was dehydrated. So, in my way I have learned to recognize that “all around (full circumference of) my chest” pain as the GERD/esophagus & wait it out after I check my blood pressure.
It’s scary but I can’t run to the hospital every time I get that kind of chest pain with no arm or jaw pain. Acid reducer ranitidine meds help sometimes but I am still scared that one day it will be a heart event! My Cardiologist, PCP, Gastroenterologist all say I should go to ER every time & don’t seem to have other solutions. It’s frustrating. Have you heard of/do other Heart Sisters have esophagus problems like this?
Since I’m here, I will add that my cardiologist had me do a home sleep study because of the heart attack & the (very uncomfortable) test revealed mild sleep apnea, not moderate or severe. My cardiologist says the test is what it is, regardless of my burping problem, chronic insomnia, & mouth breathing (due to deviated septum), and thinks I should start CPAP. I do not want a CPAP life & said I would prefer to wait & retest at some point. Honestly, I think everyone I know who has had a sleep study for any reason has been told to start CPAP & that makes me suspect the “industry”. So I take my Brilinta, aspirin, Lisinopril, Carvidelol, & Crestor and hope for the best. I’m wondering if my Heart Sisters are using CPAP & due to what kind of results & if they stuck with it?
Lastly, thank you SO MUCH for sharing, your posts, website, blog, book, and community. I love y’all. I also wish I could live in Victoria or BC Canada for the rest of my life instead of Texas! Although I am thankful for the Austin Heart Hospital, a group of dedicated & caring heart professionals!
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Hello Priscilla – you are sharing a perfect example of the kind of dilemma facing people who live with more than one chronic condition: the need to figure out which condition to blame for each serious symptom! I do this all the time because I live with refractory angina caused by coronary microvascular disease. Each twinge makes me ask myself: is this MVD? Or is this another freakin’ heart attack??!!?
Over the years, I’ve learned not to go into a screaming panic every time I have symptoms that feel an awful lot like my 2008 heart attack did. Like you, I have learned how to wait, and observe, and assess what’s going on, and see what helps (or not!) You have figured out a way to somehow manage this, too.
I agree – frankly, our doctors are being unrealistic when telling women who have been repeatedly sent home from the ER to keep going to the ER, but that IS of course the prudent thing to advise anybody with a history of heart disease – just in case!
But here’s something to keep in mind that some people aren’t aware of: if you do have another cardiac event, you may not actually have exactly the same symptoms you have experienced before (e.g. maybe no arm or jaw pain!) You didn’t mention nitroglycerin on your meds list. I’m not a physician, but I can mention here that many people use their nitro as the first option to see if it addresses cardiac chest pain. Nitro is your friend, as I like to say…
Re your sleep apnea question: you are the only one who can decide on whether you’d like to consider a CPAP machine. What I do know is that emerging research suggests that there is a significantly high rate of CPAP dropouts (people who start, but for a number of reasons, quit). I suspect that it’s only when symptoms become truly unbearable and affect your quality of life (as chronic insomnia can do, not to mention that sleep breathing disorders put you at higher risk for further cardiac problems) that CPAP suddenly looks more attractive and people will decide to stick with it. I’ve heard from a number of my readers that their quality of life improved dramatically once they got past the considerable CPAP adjustment period at the beginning – because for the first time in years, their sleep breathing issues were addressed!
How odd that I should find this tonight. I just did a home sleep study myself last night due to suspected sleep apnea. Priscilla addressed the same concerns I have about the frequency that cpap machines are being prescribed nowadays. My husband has severe apnea and uses one, and so do many other family members on both sides, including my brother, who is my only sibling.
My dad had some kind of sleep issue where he just fell asleep all the time (once while standing up washing dishes, holding a dish in his hand, but he did not drop it!). We just figured it was because he worked 7 days a week all the time we were growing up. My brother’s sleep study revealed other things going on than just the apnea, and now I’m wondering if maybe I have something more than just that too. I’m really tired all the time and fall asleep in chairs like Dad did.
My husband maintains that the cpap does help him. He and I have both been diagnosed with a-fib, and there is a connection between that and sleep apnea. I so understand the dilemma of whether or not to go to the ER with an ongoing issue. His was fairly frequent for awhile and now he rarely has symptoms. My a-fib is much less severe, necessitating only one ER visit.
He doesn’t mind his cpap machine, but he is also very easygoing by nature. I, on the other hand, REALLY don’t want to use one. Part of the reason for that was touched on in your book, Carolyn — I’m sooo tired of being a patient, and now they are trying to take away my sleeping comfort too? Enough is enough!
And in all honesty, while I’m glad it helps him, I resent his machine. They need to do a study of sleep patterns of spouses of people with cpaps because it interrupts MY sleep all the time. I wake up freezing when he blows cold air in my face. The machine has a light that bothers me. It’s also totally killed snuggling at night. Who wants to snuggle with Darth Vader?
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I know this is NOT funny but I did laugh out loud at that last sentence, Meghan. I’m thinking that sleep disorders are a bigger culprit than most of us imagine. Have you read my interview with eye/ear/nose/throat physician Dr. Steven Park? He’s a goldmine of fascinating facts about sleep breathing disorders.
Ironically, it seems that your own sleep is being impacted by what is helping your hubby sleep! That is just not fair, but it’s also not uncommon.
The key here is what we know about overall “compliance” in life (I HATE that term, by the way). For example, we tend to continue willingly and reliably with any prescribed treatments when we understand the rationale for the treatment, when we believe that the treatment will in fact help us, when we are convinced that initial adjustment difficulties will eventually pass, etc.
It sounds like you are not quite there yet – and for very valid reasons.
Meanwhile, hang in there…
Carolyn, I don’t mind at all that you laughed at my comment about Darth Vader. The very first time dh was fitted for a mask in the med supply office and turned on his brand new cpap machine, he sounded EXACTLY like Darth Vader — and we both realized it at the same second and just cracked up laughing.
That afternoon while he was at work, I placed a sign on his pillow that said “The Dark Side is over here!” and one on my side that said “Meghan sleeps here and the Force is with her!” He laughed when he saw it — we tease each other all the time. I don’t know where I’d be without my overactive sense of humor to ease the hard transitions of life!
And now it’s been over two years and I guess we’re both used to it. But I still find it frustrating on a cold winter night when I wake up freezing.
As for that hated “compliance” term, I will add that, for whatever reason, I find I almost always initially resist or procrastinate doing what my doctors want me to do, like taking a blood thinner or doing the sleep test, but I generally come around after awhile and decide to at least try things.
My cardiologist is pretty gentle but persuasive in her logic at convincing me about things, and my husband’s input helps too. I still don’t want a cpap machine but now the home test is making me more and more curious as to what sleep problems I might actually be having and if the machine might really make me feel better.
I won’t find out the results until my follow-up appointment in August. We’ll see!
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I’m so glad I found this site.
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Glad you found it, too, Linda!
I am curious to know that in your case Carolyn, when you were misdiagnosed with your heart attack, if you ever reported the doctor to the Hospital Administration, Risk Management or write a formal complaint to the state medical board?
I feel that if more women stood up to doctors who are undertreating or misdiagnosing, they may take women a lot more seriously. It is time to ask as many questions as need be and never feel intimidated by arrogance.
I have spent years working for directors of cancer research and neonatal medicine at UNC Hospitals. One thing I have learned is that treating patients is more an ‘art than a science’. You are your best advocate and the more you demand answers the more they will take you seriously.
I am off to Emory University in Atlanta, GA this week. I was referred to a Dr. Puja Mehta who is a cardiologist and specializes in women’s heart disease and microvascular disease. She has written an abstract about ‘Managing Angina Pain’, which is included in a medical book I am reading, “Chest Pain With Normal Coronary Arteries:. It is a good book but a bit hard for the lay person to comprehend. She mentions the drug ‘ranolazine’. Does anyone take this drug for angina and does it help?
I tried to get my cardiologist here to read this excellent book as he knows nothing about cardiac MVD in women. He told me he couldn’t find the book in the Duke library. I told him to try Amazon. That’s how pathetic this doctor is. His nurse (who never met me) told me that they don’t believe I have cardiac MVD, because I don’t get migraine headaches. In all my research, I never encountered the connection between migraine headaches and cardiac MVD. Another nurse told me in front of my husband, that she never heard of Cardiac Syndrome X. This Duke doctor would not even authorize a handicap placard for me because he didn’t believe I had shortness of breath while walking distances or inclines to my car. So, hold doctors accountable and don’t allow them to mistreat you. If they do, than move on but not before you put in writing the reasons why.
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Hello Lois – no, I didn’t report that ER physician to my hospital. Many people have asked me that question. I’d like to think I would complain now if this same scenario were playing out today, but the truth is that I was very ill at the time, with very serious cardiac symptoms. I could barely function, never mind file an official complaint! Also, a huge part of the problem was my own “treatment-seeking delay behaviour” (because a man with the letters M.D. after his name had told me ‘it’s not your heart’). I was simply too embarrassed to go back to the ER despite increasingly horrific symptoms. Had I done so immediately, I believe my outcome would have been far better, misdiagnosed or not. On some level, I knew I could hardly complain about that doc while admitting that I had repeatedly refused to return for help after that first trip to the ER.
In my experience, many doctors are not as informed about MVD as they should be. Your doc’s unlikely to order that book, so save your breath. There have been a number of studies that do link migraine with all forms of women’s cardiovascular disease – here’s a sample from the BMJ with a 20-year follow up that cites a number of previous studies too. But this does NOT mean, of course, that you don’t have MVD just because you don’t have migraines. Personally, I have never experienced a migraine (and I have MVD) but that’s just a personal anecdotal report, not science! Best of luck to you…
I have had both acid reflux and Coronary Artery Disease for at least 12 years now. So far, I have been able to tell the difference, even after 12 stents! If I have the slightest hint of chest pressure, I take a Tums. If I burp in 5 minutes, I’m OK. If it continues and I don’t burp, I take nitro. So goes my idyllic existence.
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Oh, Pauline. I laughed right out loud at your ‘idyllic existence’! You’ve got it down to a science by now…
So glad everything worked out well for Debbie! I have had 2 blockages in my LAD, one 90% and one 99%, and have two stents, luckily avoiding a heart attack both times.
Ever since learning about acid reflux and heart symptoms, I become very scared when I do have acid reflux, which is not a lot — but if it’s severe, I worry that it’s my heart. The last time I did cardiac rehab, after the second stent, I had a lot of little minor chest pains and ended up having to stop doing rehab several times while my doctor evaluated the symptoms. I wore a nitro patch for awhile. Finally my cardiologist told me to take famotidine (generic for Pepcid) every single day (I had been using this on an occasional basis), and the little pains totally stopped. I had told her that taking nitro helped when I felt the pains, and she told me that nitro can also help with stomach issues — never heard that before, wondering how true that is, but somehow she figured out that I should take the famotidine, which really helped so it must be true. This was last winter — I don’t have those little chest pains anymore. (I no longer take the acid reducer every day now, only when I know something may give me heartburn.) This is just another example of how the whole body works together and one thing influences another, I guess.
Thank you, Carolyn, for telling these stories — I love hearing other people’s real, honest stories. So good to know we are not alone on this journey of heart disease!
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Thanks Meaghan! You are so right – everything in the human body can influence everything else in the body. I’m glad you mentioned acid reflux meds. Recent studies have warned heart patients NOT to take the acid reflux drugs called proton-pump inhibitors (like Prilosec, Nexium and Prevacid) that have been shown to increase risk of heart attack in moderate/high-risk patients. Your famotidine/Pepcid is a different drug (H2) and no cardiac issues have been observed.
I have heard that, oddly, nitro taken for angina can also simultaneously affect symptoms of acid reflux in some cases (specifically symptoms of esophageal spasm) so that might be why you felt some relief with nitro, although I’m guessing that nitro wouldn’t generally be prescribed for acid reflux.
Thank you for all the work you put into this blog. I was diagnosed with Prinzmetal’s Angina several years ago after seeking a second opinion from a well-respected female cardiologist at a women’s health center in NYC after a male cardiologist diagnosed me with anxiety in about 5 minutes. I have a history of anorexia and depression, which no doubt biased this hasty diagnosis. But this cardiologist took the time to look beyond my mental health history and inquire about my co-occuring conditions of migraines and Raynaud’s, which helped her make the correct diagnosis.
At the beginning of the year, I went to my local ER for chest pain. Everything checked out, but they urged me to get a stress test. I saw this Dr. and I was wheezing at the time (I also have asthma), so she directed me to my pulmonologist. She continues to insist that the issue is with my lungs. Over the course of the last six months, I’ve began to experience symptoms that I feel could possibly be heart failure – the most recent being pitting edema in my legs which is evident after a day of sitting at work. The last time, my legs were so swollen that my physical therapist (who I see once a week on a regular basis) was literally freaking out. It was she who mentioned heart failure and when I looked it up – all the symptoms now add up. My experience with doctors is that if they don’t see it when you’re in the office – it didn’t happen, i.e. the pitting edema.
Have you – or any other of your readers had a similar problem and how did you handle it?
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Hi Gerri – yours is an interesting case (a complex medical history of anorexia, depression, asthma and now heart disease). I’m not a physician, but I can tell you that many overlapping symptoms can be common in more than one condition. The key is to spot the symptoms that don’t ‘belong’ with the fast and easy diagnosis (as your first cardiologist demonstrated). The question to ask your pulmonologist: are pitting edema and swollen legs typical symptoms of asthma? And seek a second opinion if symptoms continue or get worse.
Yes, I’ve experienced something similar when my heart attack was misdiagnosed in the E.R. as acid reflux – despite textbook symptoms. Even I knew that pain down your left arm is NOT a sign of simple heartburn. But shortly after I asked, “But Doc, what about this pain in my arm?”, the E.R. nurse told me to stop asking questions of the doc. (“He’s a very good doctor and he does not like to be questioned!”)