Heart Failure Support Group
Heart failure is a condition that can result from any structural or functional cardiac disorder that impairs the ability of the heart to fill with or pump a sufficient amount of blood throughout the body. It is often undiagnosed due to a lack of a universally agreed definition and difficulties in diagnosis, particularly when the condition is considered "mild."
Hi everyone,
First post on this board. I hope you won't judge me, as my story is a little odd. I have not been diagnosed with CHF, and I don't think I have it, I just need some advice and some consoling, I guess. :)
I was 14 years old when I felt my heart beat irregularly for the first time. I thought I was dying. It was in complete dysrhythmia for maybe 5-10 seconds then went back to normal. However, I immediately (within days) noticed a decrease in my endurance level. If I worked out too much, my heart would beat strangely, so I would need to stop. I never said a word to my parents. I didn't say anything to anyone for five years, because I was afraid. I truly thought I was dying and there was nothing I could do. But I was just a kid.
Fast forward to when I was 20, I finally told my parents about it. My family doctor listened to my heart and said I was fine. "Lay off the caffeine." Still, my endurance did not improve. I kept telling my family and friends I didn't feel "right." I was told arrhythmias are normal, get over it, basically.
A year ago (I am now 30 years old), I finally decided enough is enough. For years, I have been told I'm a hypochondriac, a liar, "crazy," overreacting, "just out of shape" (I am 5'4" 135 lbs., I am not overweight or anything), et cetera. I asked my doctor for a referral to a cardiologist. He refused. I found a new doctor. He took me seriously. He ordered me a stress test and echocardiogram with contrast. My insurance denied everything but the echo, but they also denied the contrast, so I had an echo.
I never even met the cardiologist. He read my results, gave them back to my new doctor to explain to me. My doctor is not a cardiologist. He explained it the best he could. I have a few minor issues (mitral valve regurgitation, small left ventricle, etc), but nothing that should impede my exercise routine or cause major problems. Still, my endurance decreases.
Because of this relatively normal echo, I had to fight even harder to get people to listen to me. I found another cardiologist. He scheduled a GXT (a different insurance company, once again, denied a stress test/echo combination). My GXT test came back abnormal. I was told my O2 sats dropped significantly when exercising and my heart rate was way too high for that amount of exercise. My resting pulse is usually in the 80s, which I also find abnormal. He scheduled me another echo with contrast. This time, because of my abnormal GXT, my insurance approved it. My cardiologist suspects I may have a hole in my heart. That's his starting point, at least.
I had saline and air injected into an IV. If I have a hole, the bubbles of saline will show up in right ventricle as opposed to dissipating (is my understanding). When I was finished with the test, I said to the tech, "I know you're not a doctor, but I know what you're looking for. Did you see the bubbles in the wrong side of my heart or not?" She declined to answer, which I understand. But I have to wait until Monday, which feels like forever right now.
My question is, have any of you ever had this test done? Have you been diagnosed with a hole in your heart? (I know there's a medical term for it, but it's long. Ha). And lastly, has anyone ever had a similar situation, where you have CHF-like symptoms, but no one can figure it out? What was the outcome? I, personally, know I'm not insane, and that something is going on, but as of today, I still don't have an answer. It is so frustrating. If I hadn't pushed and pushed, I would still be at square one. I wish I would've been taken more seriously. One entire side of my family has heart issues. Atrial fib, mostly. But then they all want to say I'm just a hypochondriac and there's no way I could have a heart problem, I'm too young, too this, too that. It's just so, so frustrating to deal with.
Sorry, I just had to get this out. Thanks for listening!
First post on this board. I hope you won't judge me, as my story is a little odd. I have not been diagnosed with CHF, and I don't think I have it, I just need some advice and some consoling, I guess. :)
I was 14 years old when I felt my heart beat irregularly for the first time. I thought I was dying. It was in complete dysrhythmia for maybe 5-10 seconds then went back to normal. However, I immediately (within days) noticed a decrease in my endurance level. If I worked out too much, my heart would beat strangely, so I would need to stop. I never said a word to my parents. I didn't say anything to anyone for five years, because I was afraid. I truly thought I was dying and there was nothing I could do. But I was just a kid.
Fast forward to when I was 20, I finally told my parents about it. My family doctor listened to my heart and said I was fine. "Lay off the caffeine." Still, my endurance did not improve. I kept telling my family and friends I didn't feel "right." I was told arrhythmias are normal, get over it, basically.
A year ago (I am now 30 years old), I finally decided enough is enough. For years, I have been told I'm a hypochondriac, a liar, "crazy," overreacting, "just out of shape" (I am 5'4" 135 lbs., I am not overweight or anything), et cetera. I asked my doctor for a referral to a cardiologist. He refused. I found a new doctor. He took me seriously. He ordered me a stress test and echocardiogram with contrast. My insurance denied everything but the echo, but they also denied the contrast, so I had an echo.
I never even met the cardiologist. He read my results, gave them back to my new doctor to explain to me. My doctor is not a cardiologist. He explained it the best he could. I have a few minor issues (mitral valve regurgitation, small left ventricle, etc), but nothing that should impede my exercise routine or cause major problems. Still, my endurance decreases.
Because of this relatively normal echo, I had to fight even harder to get people to listen to me. I found another cardiologist. He scheduled a GXT (a different insurance company, once again, denied a stress test/echo combination). My GXT test came back abnormal. I was told my O2 sats dropped significantly when exercising and my heart rate was way too high for that amount of exercise. My resting pulse is usually in the 80s, which I also find abnormal. He scheduled me another echo with contrast. This time, because of my abnormal GXT, my insurance approved it. My cardiologist suspects I may have a hole in my heart. That's his starting point, at least.
I had saline and air injected into an IV. If I have a hole, the bubbles of saline will show up in right ventricle as opposed to dissipating (is my understanding). When I was finished with the test, I said to the tech, "I know you're not a doctor, but I know what you're looking for. Did you see the bubbles in the wrong side of my heart or not?" She declined to answer, which I understand. But I have to wait until Monday, which feels like forever right now.
My question is, have any of you ever had this test done? Have you been diagnosed with a hole in your heart? (I know there's a medical term for it, but it's long. Ha). And lastly, has anyone ever had a similar situation, where you have CHF-like symptoms, but no one can figure it out? What was the outcome? I, personally, know I'm not insane, and that something is going on, but as of today, I still don't have an answer. It is so frustrating. If I hadn't pushed and pushed, I would still be at square one. I wish I would've been taken more seriously. One entire side of my family has heart issues. Atrial fib, mostly. But then they all want to say I'm just a hypochondriac and there's no way I could have a heart problem, I'm too young, too this, too that. It's just so, so frustrating to deal with.
Sorry, I just had to get this out. Thanks for listening!
Your description sounds to me very much like an electrical problem. I know many many people who have issues with their electrical system only and they went through pretty much the scenario you described. The problem is those issues tend to be intermittent and difficult to pin down without something like a Holter Monitor to record your heart for a month.
By the way, an echo isn't going to show an electrical issue, strictly plumbing. Good luck and hang in
I got the results of the bubble study back. The bubbles did pass to the opposite side of my heart, which means there's a "hole," somewhere. The problem is, I was given so much new information at the cardiologist's office, that it was a whirlwind and I don't remember exactly what he said. He said something about a "Patent foramen ovale" which I know is a congenital heart defect. However, he made me repeat the bubble study that day, as he was present, and kinda mumbled "Mmhm" and scheduled me for a Transesophageal Echo. From what I understood, he's looking for a shunt, but I don't understand why he can't see this on the regular echo and why I have to have a tube stuck down my throat. I am absolutely terrified of that. I know I will get doped up for it, but the anticipation is making me crazy.
I did ask my cardiologist if it could possibly be an electrical issue, because honestly, that's what I have been thinking all along. He said "no, it's definitely mechanical" but I don't know, there's an electrophysiologist in the office, it never hurts to have another person look at me, I guess. My first cardiologist didn't discover any of this, nor did he diagnose the mitral valve prolapse I now seem to have.
I trust in my cardiologist. He's been doing this a long time and is on the board of the hospital. I had to wait six months just to see him for a consult. I don't want to offend him, but my TEE is in two weeks, and I am thinking about making an appointment just to get some clarification on what he saw on the second bubble study echo and what he expects to see on the TEE, and how the defect would be treated. I was so caught up on what they were looking for, I didn't even think to ask how they might go about fixing it.
Anyway, I'll keep you posted, because I've never been down this road before and it sounds like you may have some good advice with this topic. :) Thanks for the help!
Mitral valve prolapse is pretty common as we age and it's just a case of degree whether they do anything about it.
May I suggest you keep a journal and document any questions as they arise so each time you see a doctor you can ask and won't get side tracked and forget. Also document what episodes happen, what the conditions were and everything you can again so you don't rely on memory. It could help pinpoint things.
Good luck and keep us apprised.
I commend you on your persistent insistence that something isn't right. I endured a month of breathless misery before my doctor stopped dismissing the dx I arrived at long enough to get me a chest x-ray that proved I guessed right that I'd CHF despite being only 35 years old and far too young to possibly have heart failure! You don't need to be a doctor to know when something in your body doesn't feel right. It's your job to see a doctor when you don't feel right. It's the doctor's job to find out where & what's not right and put all efforts into making it right. There's nothing more frustrating than trying to get through to people who know better than you. If they weren't so smart you wouldn't have to keep pestering them so much. Keep on with your pestering self, you're getting closer to making things right ; )