I was "The Patient" exhibit at a cardiology symposium this weekend, sponsored by SoutheastHealth. Believe me, I know what a gift my heartbeat is. Listening to the various speakers, I learned that I should always have been considered at HIGH risk for heart disease. Are you? You are, if genetics and one other risk factor affect you. I honestly did not know that I was HIGH risk. Check with your doctor today.
The most common risk factors are family history, diabetes (type 1 or 2, and this is a huge risk factor), high blood pressure, being overweight (don't kid yourself on this one), bad lipid profile (I was not in this group at all, as my blood profile has always been good to excellent), irregular heart rhythm, age, smoking (right up there with diabetes), sedentary lifestyle. If you have two or more of the risk factors, think "heart" when you have undiagnosed problems. My condition took six or seven years to diagnose, and it is no exaggeration to say that I nearly died. Even the attendees at the symposium agreed on that point.
It was NOT the numerous heart tests over the last several years that saved my life. I had every possible test, some more than once, and "passed" them all. It was my persistence in continuing to seek help. I almost waited too long that last night, though. For the record (again), my only symptom for years was a gripping, choking sensation in my throat--no pain or pressure in my chest. In the last few days prior to surgery, I also developed a searing pain on the entire left side of my face, and I was slightly nauseous (just enough that I didn't want to eat). I had NO OTHER symptoms, other than fatigue and feeling out of breath. My lipid profile was very good. My blood pressure and blood sugar were both well-controlled. I have never smoked. I was not what most would call really fat, though I weighed too much.
Yet, I nearly died due to 100, 90, 80, and TWO 60 percent blockages. I thought that I had four blockages, but due to the research done for my introduction at the symposium, I learned that I had FIVE blockages (addressed by four bypasses plus a moved collateral). FIVE serious blockages and four bypasses!
One of the cardiologist speakers, after a brief review of my history, said that the DEFAULT assumption (when there is more than one risk factor involved) should have been to assume that my problem was cardiac related. I was sent back to my general practioner more than once, after passing numerous cardiac tests. The beat that was missed, however, was that I should have been sent BACK to the cardiologist after all of the other tests also failed to provide a diagnosis. Instead, I was told that I was having esophageal spasms, nothing serious because my esophagus and stomach showed no damage (of course, they also showed no evidence to support that diagnosis). So that diagnosis was a dead end, and could have been a death sentence.
Just in case you or someone you love is trusting the results of a Thallium stress test (or any stress test), let me add this important fact: The stress test gives false negatives up to 15 percent of the time. Among the patients missed are THE MOST SERIOUS CASES, "LIKE LIZ," as the cardiologist went on to say. The reason is that the stress test looks for variations. In cases of serious blockage all around the heart, those variations are not present, and the test fails to find the problem. The patient is sent back to the general practioner with a "pass" grade on the stress test. I know this is a frightening fact, but I want you to know, because you might be the one who has to advocate for yourself or someone you love.
So, as I celebrate a birthday tomorrow that almost was NOT, I urge YOU to count your risk factors. Please give your family the gift of YOU for another year! Don't be in denial all the way to an autopsy. If you think it's your heart, say that the moment you walk into the doctor's office or the ER. I think part of the reason I am still here is to spread the word!
Update: I'm fine now, but the cardiologist warned me that my symptoms might be different the next time--and they were. In the year following my heart surgery, I had several heart issues, including another heart attack. I still have never had chest pain or pressure. My primary symptoms now seem to be nauseau and slight sweating (dewy, not wet, just dewy). I also have had upper gastric pain above the belly button. Gas pain usually occurs lower in the abdomen, but please take any gastric pain seriously.
My own October surprise--now I'm a CABBAGE!
Alive and grateful for it!
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Liz and we're all happy that you are here today.....what an incredible story and something we all need to be aware of and let others know. It seems like more women are not diagnosed, is that true? If so it's up to us to expect and TELL them what we think (know) it possibly could be.
Yes, Anna, women are more difficult to diagnose. We present differently, and that's why we are missed.
A nurse even told me about one woman who had excruciating pain in her left little finger. She came to the ER because she had been up all night and wanted something to help her sleep. She was having a heart attack.
The nurses on the cardiac ward said that they had heard of the choking symptom, but it was always in women, as was the face pain I experienced.
Women also often present with abdominal pain, especially those with diabetes type 2. The abdominal pain can be above the navel, not the same as the gas pains which are often in the belly and below the navel. I did make a trip to ER with abdominal pain almost a year before my bypass surgery; and it was really horrible, frightening pain that lasted for about an hour. It is possible that I had a heart attack that night, but I sat in the ER for quite some time before being seen, and the pain was long gone before I was examined. I had chewed two full strength aspirin before leaving home. Because I was only two weeks post gallbladder removal, the ER doctor believed the pain was due to passing a left-behind gall stone. Nobody really thought I needed to be admitted for observation, so I was sent home. Looking back on that, I will freely admit that it occurred to me that it was my heart. That's why I chewed the aspirin when I could barely stand up, but I did not tell the ER that I thought it was my heart. I've learned that you MUST tell them immediately it is your heart. That gets you examined immediately.
Liz- my husband had a similar but not as serious situation 14 years ago. He was experiencing some strange feelings. Once I took him to the ER after giving him an aspirin but they found nothing. After 4 months of Thalium Stress tests (negative results) as well as trips to the gastroenterologist, I had him insist on an angiogram. His Cardiologist was reluctant to do something invasive but he agreed and my husband had 2 stents put in because he had 99% blockage. Yes.... we have to take charge of our own health.
Kathy~I'm so glad that your husband's condition was caught in time! You and your husband did a very critical thing, and that is insisting on additional tests BASED ON HOW HE WAS FEELING. "Listen to your own body" just has to be a clarion call for all of us. Congratulations on having had the persistence to do that.
Thank you fro sharing this. .
and, it seems obvious what the lesson here is. .
Fernando~Doctors are trained to listen to the patient, but it's a skill they sometimes fail to use long enough.
Liz, just came over from Kathy's post-glad to hear you came out the other side well and healthy so you could be the exhibit. Doctors are fallible-we have to be our own advocates and know our bodies. Thank you for sharing.
Liz, diabetes is such a pernicious disease requiring vigilant steps to keep it's bodily effects at bay. So glad that you persisted with this path and are able to share your insights with uall of us. Thanks Again!
Liz, very interesting information. I was not aware of much of it.
Kevin~You are welcome! Genetics is another huge factor.
Kathy~I am so glad that you learned from my post! That is certainly my intent.
Liz: This coming Thursday I go in to the hospital for a cardiac catheterization. I have been having extreme shortness of breath for several years, and finally changed cardiologists and went to a new one last week.
He did a new EKG, and an extended Echocardiogram... and didn't like what he saw. In choosing him I saw that he had five years experience at the Cleveland Clinic, which really helped my confidence in him. He said the "echo" showed extensive blockage of my aortic valve... it neither opens or closes properly... and diagnosed it as severe aortic valve stenosis.
That was last week. The cardiac cath is this week. We shall see. This has been going on since I was hospitalized for eight days around Christmas of 2008... when they (different doc, different hospital) decided to treat it with medication only.
Liz-What a sobering realization that all the tests for heart problems didn't show a problem that could have killed you. I have a friend whose husband had a problem and tests didn't reveal a problem but she knew something wasn't right and persisted. He ended up having blockages and there is something called widow maker which he had. I am glad you persisted and that you are OK.
Karen Anne~You will be in my prayers all week. Many cardiologists are now doing a radial access cath, so you might research that option. Also, there are even some institutions and doctors who now do some valve replacements via artery access, which does not involve cutting open the sternum. I hope that is an option for you, because the recovery time is so much less than when the sternum is opened.
A very important factor in my recovery is the fact that I had a "beating heart" operation. That means that I did not go on a bypass machine. Beating heart procedure patients are less likely to need blood transfusions, recover more quickly, and are less likely to suffer depression.
My theory is that surgery early is better than surgery late, so go ahead and get it done! By that, I mean that it is better to get the surgery while you still have stamina, rather than after you have gone downhill physically. The reason so many people who know me were absolutely stunned by my heart disease is that I am known as a high energy person who works hard and works long hours. I nearly died, however, and that is not hyperbole. When I rattled off my blockage percentages at that cardiological symposium recently, there was an audible gasp in the room. Those experienced people knew that they were listening to someone who danced with death and lived to talk about it. I say that to reassure you that you also can come back, now that you have a diagnosis and a cardiologist who is seriously reevaluating your condition.
Anytime you want to talk, just pick up the phone and call me. Your battle is half over, because the emotional run-up and getting the diagnosis are real challenges. Now, get it fixed and start recovering physically. You can do it! I am so happy for you, because now you have a chance to live the rest of your life!
Sharon~Thank you very much! Yes, I am familiar with the Widow Maker. That was one of my worst blockages.
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