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High Voltage!

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  • marche81
    replied
    Re: High Voltage!

    Wanted to let everyone know that my baby girl's lab results came back. Everything came back clear. The results were ordered by Dr. Towbin, so I trust the correct labs were ran. Now I know its time to go see the specialist about myself, because its a high possibility that Kylee's HCM is genetic, either through my husband or myself. We learned that my husband's aunt on his father's side has HCM. Dr. Towbin mentioned that sometimes mitochondrial disorders that affect only the heart can be possible, but she will more than likely live a long healthy life if this is the case. The same if it is indeed genetic. I will be making our trip to San Antonio in October to see the specialist for myself and my husband (stress test). Until then, I am happy to return back to a somewhat worry-free life again in regards to my baby..for the first time in 4 months...Thank you for all of your help and support! I'll keep everyone updated.

    Leave a comment:


  • Abbygirl2
    replied
    Re: High Voltage!

    Hi there,
    I too am considered to have mild HCM yet I am so symptomatic I have a hard time just doing mundane daily things.
    There are many days I barely move at all, most of the time when I move my heart races, I feel lightheaded weak etc. I am tired all the time, and get crazy weird beats, flutters etc.

    My enlargement is 1.6cm, my resting gradient is 16, which rises to 36 when induced (with Amyl nitrate). I am obstructed which may or may not have alot to do with my symptoms. I am confused as to why they can't diagnose you already. They diagnosed me based on EKG and Echo(non stressed).

    I am sorry to hear about your little one, but thank goodness they caught it early. Hopefully you and hubby can get checked out sooner rather than later and you can get some of your questions answered.
    Hope you are doing well.

    Pam

    Leave a comment:


  • angall
    replied
    Re: High Voltage!

    Hi Marchie
    I am so glad that your daughter was diagnosed early. Yes, please do keep us informed. Hopefully you will get definate answers, too. You must take care of yourself in order to take care of your daughter.

    Leave a comment:


  • marche81
    replied
    Re: High Voltage!

    Hi there Ronnie.

    Thanks for posting to my message. I prefer to see Dr. Feldman in San Antonio, because #1. Lisa referred me to him because he has/is showing alot of interest in HCM #2. Because he is the only Dr. out of 2 others that is even considering that I have HCM. The other 2 cardiologists have diagnosed me with completely nothing. I leave just knowing I have all of these heart problems, and no name for them.

    I actually recieved a letter from the San Antonio Dr. today that he sent to a Dr. that ruled out HCM for me (the Dr. that ruled it out is totally CLUELESS about HCM). I really like the Dr. and I plan to get down there as soon as we possibly can. I am on Atenelol that Dr. Feldman prescribed me for when I feel symptoms (I only have symptoms when I exercise mostly). Anyways, the letter says "EKG today revealed inferior T waves which could be consistent with HCM. She had an echocardiogram that showed chordal SAM, and she had an A greater than E wave but her heart rate was sinus tachycardia (140 bpm)..."She had a 1/6 systolic ejection murmur that did not go to her cartoid or axilla". "Based on the resting echocardiogram, a definitive diagnosis of HCM cannot be made at this time. I have asked the patient and her husband to return, both for exercise echocardiograms to determine if provakable gradients are present".
    I am not really sure about what all this means, but I think what he is trying to say is "She may have it, she may not have it, lets see what happens on a stress test." Anyways, my daughter Kylee is doing just fine. She is reaching all of her milestones, thriving, happy, learning to crawl. She is on Atenelol twice a day. The Atenelol has already helped her tremendously with the loudness of the murmur and the gradient (?). Anyways, I AM following closely with both of my daughters pediatric cardiologist (the one in Dallas, and the specialist in Houston we will see every 3-6 months), and she is top priority right now. We will definately be taking the trip to San Antonio in October to see Dr. Feldman for the stress tests, when my husband can get vacation time again from work. I'll let everyone know how it goes...the labs are supposed to be ran on my daughter sometime within the next couple of weeks to rule out any other diseases that can cause HCM in an infant. I will keep everyone updated.

    Leave a comment:


  • Ronnie
    replied
    Re: High Voltage!

    Hi Marche-

    Well, you've certainly had a Rough Time! I'm Sorry your Pregnancy was not very enjoyable! Is it Mandatory to travel to the University (6 hours away), for treatment? Is it possible for yoy to find a CAPABLE KNOWLEDGEABLE Doc closer to home? It's obvious by now, that it's our consensus that you have HCM- who cares if they classify it as Mild or not-the disease does progress, for many of us. What you need now is a Great Doc, who understands you & can begin treatment with some Meds, so you can function & enjoy your life! Perhaps a call to Lisa, for a Dr. recommendation, would help. Or how about the Peds Cardio, who can he suggest?
    How is your Baby doing? What is the treatment they propose, for the Baby?
    Good Luck

    Leave a comment:


  • Laoshur
    replied
    Re: High Voltage!

    Hi, Marche,

    There are probably people out there who can answer your question about the gradient better than I can. There are a couple of numbers that you could be referring to, I think. Ejection fraction is given as a %. 65% is high, but not very high. (My last ejection fraction was 79%) Gradients are usually measured in mm, as I understand it, and are either resting gradients or inducible gradients. Since, if I understand you correctly, you have not had a stress test, you cannot know if you have an inducible gradient. So, if your resting gradient is 65, that is high, I think. My resting gradient is very low, maybe 3 or so, but my gradient goes quite high with stress (I can't give you a number because the doctor and tech argued about the number so I am not sure what it was). So, it is not clear to me which they are referring to. Do you know?

    Your symptoms during pregnancy do not sound mild to me. Nor do they sound like simple problems that doctors would normally dismiss as typical of pregnancy.

    Please see a specialist even if it is hard to travel with a six month old! I look back on the time when my daughter was that age and how I found that I could barely carry her as she grew and realize that what I was experiencing was HCM but did not know it.

    Rhoda

    Leave a comment:


  • marche81
    replied
    Re: High Voltage!

    Hi Rhoda!

    Thanks for the info. My gradient was 65%, which I was told was nothing worrisome..is this the gradient you are referring to? I have mitral valve regurgitation, also, that I forgot to mention. When I was pregnant with Kylee, I had HORRIBLE heart problems, which sent me to the ER once, and the cardiologist a couple of times. However, I was told it was because of the "extra workload on the heart from the extra blood during pregnancy" and that I also had "left ventricular hypertrophy". At one point while I was pregnant for a couple weeks, I couldnt stand up without seeing black spots and feeling dizzy, I would almost pass out from walking a couple feet ahead of me, and I could feel EVERY beat my heart made..and it even seemed like my heart would skip a beat, and it was off rhythm (like bumbum...bum bum bum...bum...bum) It followed no patter. They placed me on a monitor that I used when I felt the palpitations, and the results were abnormal, however, again, they came to the conclusion it was due to the pregnancy. It was all really strange, and I felt horrible those few weeks.

    Leave a comment:


  • Laoshur
    replied
    Re: High Voltage!

    Hi! I also have a septal measurement of only 1.3, but I also have a pretty high inducible gradient, involvement of both the mitral and aortic valves, lots of rhythm problems, and am getting a pacemaker and possibly an ICD next month. I have also been told I might need an ablation or myectomy because of the gradient and valve problems. So don't let the small septal size trick you or the doctors into thinking that your problem is mild. It may be, but it may not be.

    I am very concerned for my sister in the same way. Her docs told her hers was mild, but I think her symptoms indicate otherwise, but as a result I have not been able to get her to a specialist.

    My experience would say that small septal thickening is not necessarily associated with mild HCM.

    So, please see a specialist!

    Rhoda

    Leave a comment:


  • Burton Borrok
    replied
    Re: High Voltage!

    Hi Marche,
    Further to my PM, you’ll find quite a few of us with ‘heart attacks’ based on the ECK/EKG results, but ‘it ain’t necessarily so’. If you read Jim’s (mtlieb) previous postings you’ll see that every time he went to the ER and they did an EKG they informed him that he had a heart attack, and he had to tell them – No, it is because of my HCM that you’re getting that reading.

    I myself was told that I had a heart attack, but I don’t know yet if it was the (undiagnosed at that time) HCM, or that I actually did have what is called a silent heart attack. Frankly I don’t much care which way it was. That has to have occurred over ten years ago, and I’m here now – and that cardiologist has long since retired anyway.

    Please keep us posted with upcoming events – and/or just to talk to somebody who cares.
    Burt

    Leave a comment:


  • Reenie
    replied
    Re: High Voltage!

    Just for the record, all that you posted points to HCM. You are certainly not the only "heart attack on paper" that I know. My husband, among many others, also falsely looks like he had a heart attack.

    Reenie

    Leave a comment:


  • marche81
    replied
    Re: High Voltage!

    LOL. Dr. Feldman is actually one of the best adult cardiologists that I have personally gone and seen so far, but I really think that in a University setting, I can see where he cannot give me a formal diagnosis when other doctors in the practice will not agree with him. Either way, the problem is that they said my septum was a 1.3 cm..which is very mild for an HCM'er. I had turbulent bloodflow, but he said the other doctors were arguing with him that it was probably due to me being nervous, which I really was at the time of the echo. The Dr. wants me to go back for a stress test on the treadmill, but he is approx. 5 hours away from me..so we will try to get there before the end of the year is over. Hard to travel with a 6 month old! However, I think he is still standing by his diagnosis, but just cant formally give me the diagnosis until the other doctors at the University agree on it. Our pediatrician actually discovered my daughter's heart murmur, and sent us to a pediatric cardiologist, who confirmed she had HCM. Well, when an infant has HCM, it is VERY rare, at least from what everyone has told me. The pediatric cardiologist in Dallas feels that my daughter has a metabolic disorder causing the disease, while MY cardiologist says "no way, YOU have HCM, and you were just a rare case that your daughter got it as an infant." So, as you can see, emotions are running pretty high over here, but hopefully, it will all be settled soon. Thanks for posting to my message

    Leave a comment:


  • swinand
    replied
    Re: High Voltage!

    Sounds like your doctor is a heart attack. The things you relate in your post that are found on the echo, enlarged septum, left ventricular hypertrophy, murmur, are all symptoms of HCM. A biopsy would confirm conclusively, but the road map is there. So what next?, wait and see? How did they diagnose your daughter if they can't diagnose you? Let us know how you make out.

    Leave a comment:


  • marche81
    replied
    Re: High Voltage!

    Hi there! My Dr. in San Antonio is still trying to figure out if I have HCM or not (we are trying to figure it out because my 6 month old daughter has it and we aren't sure why at this point), but I can tell you that my ECG shows that Ive had a heart attack..and Im only 23 years old..lol. He won't give me a formal diagnosis because the other doctors at the University he works at do not agree with his HCM diagnosis, however, I do have a murmur, a thicker than normal septum, left ventricular hypertrophy, and what I call "my heart attack on a piece of paper". (ECG). Either way, he still thinks its "very mild HCM", and he diagnosed me partly due to the abnormal ECG along with the somewhat abnormal echo. So, it looks like I am not the only one with the "heart attack on a piece of paper"....

    Leave a comment:


  • Tigger1
    replied
    Re: High Voltage!

    Hi Bryan...My mother had what they called years ago IHSS. But not once did her doctors ever suggest that her children be tested. They just treated her with drugs. At age 38 I had problems, shortness of breath, chest pain, racing heart beat. My PCP said I was just out of shape. I knew I wasn't. I went to my mothers Dr. and had some test done. But they told me nothing looked real bad. At age 49, it hit me hard. I was placed in the hospital for 4 days and had tons of tests done on me. It was determined that I had HCM. They put me on Toprol and a baby aspirin each day. they then discussed putting in a pacemaker.

    I then contacted the Cleveland Clinic and had all my test results sent there. They determined surgury was the cure for me. Well it's been 2 1/2 weeks since my septal myectomy. Now i'm sitting home doing my exercises and getting better every day.

    Do not stop with one Drs. opinion. Keep going till you are satisfied.

    Welcome to HCMA.

    Pat Ekardt
    (Tigger1)

    Leave a comment:


  • Abbygirl2
    replied
    Re: High Voltage!

    Oddly, when I was 19 I went to the ER with chest pains and racing heart, the Dr did an EKG and just said "Ahh there must be something wrong with the machine, she's too young for that." I had several EKG's after that and everything was normal." To this day have no idea what he saw on that EKG that day.
    The Dr that sent me to my first cardiologist 6 yrs ago said the same thing(that the machine was probably acting up), yet thank goodness she decided to send those results off anyway.

    My mom's EKG always reads that she has had a heart attack(which she hasn't-as far as we know), nor does she have HCM, she did however have Rheumatic fever as a child.
    EKG's are way too confusing for me, I can just imagine the terror in the poor tech's heart when they read some of our EKG's.
    Pam

    Leave a comment:

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