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  • Confused by diagnosis please help

    Hi everyone! My name is Mike, and I'm new to the forum. I'm 23 years old and have known that I have had HCM for 10 years now. I haven't gotten to talk to anyone else with this disease and so your info is invaluable. Please offer any answers that you can to questions that I pose. Thanks!
    I didn't think I had any symptoms until I was 18. In retrospect, I'm sure that I was having at least one. I trained very hard on my conditioning for basketball between the ages of 15-17, but despite my effort, I was only in "decent" shape compared to the rest of the team. When I was told that I had this disease at 13 years old, I didnt' want to believe it. So I didn't. I continued my active lifestyle paying no heed to the doctors warning that I might drop dead and that "by the age of 20 you will either be in a wheel chair or need a heart transplant". I thought I was fine until that age of 18, when after a long night of drinking and smoking pot I experienced the first of many terrifying epsidoes of tachycardia. While trying to sleep that night I felt my chest get all warm and my heart started racing about 160 bpm. My arms got all tingly and I was pretty scared, but at the time I was working in Yellowstone National Park and so there wasn't really anywhere that I could go. I eventually fell asleep. I didn't even consider that the episode might have been from my heart. Instead I blamed it on "weed that was laced with something" and continued on. I didn't have any problems for about another 8 months when after a night of drinking and a day full of stress (My father had just had a heart attack) I got my first REAL scare. On the drive home from visiting my father my chest started to feel uncomfortable. I lit a cigarette and tried to ignore it. It started feeling worse. I can't say how, exactly, that it felt bad, it just did. I pulled over and let my friend drive. Then it hit me. All of the sudden it felt like a bag of hot water popped in my chest and warmth spread throughout my chest and into my neck. My heart sped up rapidly, almost like it went from resting to sprinting. It got up over 200 bpm and I felt pretty sure that I was dying, lol. My hands wern't only tingling this time, but they gnarled up so that I couldn't move them well. At the emergency room they diagnosed me with panic attacks and dismissed me. Lol, I didn't complain, I liked that diagnosis a lot better than what deep down I really knew it was. I didn't have another attack for a while, but the next time I did they were there to stay. At twenty years old I started getting attacks about once every 2 weeks or so. They started really looking into at that point and found that, lo and behold, it was SVT's. I found a good doctor who immediately put me on Toprol and Co Enzyme Q 10 to improve my diastolic function. The Toprol worked and in the last 3 years I've had only 2 or 3 attacks or so. The doctor said that I had symmetrical HCM and that the wall thickness wasn't all that bad really, only 1 mm above high normal. My Diastolic function wasn't great, but he said he could improve that. After 6 months or so we got my diastolic function looking good and I felt ok and so he said I could do whatever I wanted again, anything. I went right back to exercising, but over the next year I noticed that my capacity for exercise was more limited than it used to be. I asked him about it, and he said that the symptoms can get worse without the disease getting worse. He examined me to find that nothing had changed and told me to work through it. So I did. He advised me also to get a cardiologist closer to my area to follow up with rather than traveling 1700 miles to see him every 6 months. If anything big came up he told me to go see him, but other than that, just follow up close to home with a local cardiologist. On my 22nd bday I went to my first appoinment with the new doctor and he ordered an echo, as I'm sure you're all familiar with. He said he'd read it later and get back to me. He called later that night long after business hours were done. I didn't like it already. He asked me what I was doing, and I told him I was going out to have some beers. He told me to lay down and don't do anything. Just walking for now, nothing else. No smoking, drinking, etc. Try to avoid stairs. I asked him why and he told me that he measured a resting gradient of 120 mm. I took a cardiac cath soon after at his request to further investigate it. After the proceedure he said that he had good news. The gradient could only be provoked to be 60 mm, they must have mismeasured. He said no more alcohol, no more sports, but I can walk and take it easy with the exercise. I went to see my main cardiologist and he gave me an echo and found that everytyhing was the same still, no gradient, same wall thickness. He told me to do whatever I wanted. The symptoms worsened over the next year and finally when I was 23, they were now so bad that going up stairs winded me and made my heart race. I can't drink alcohol anymore at all, and if I do, the next day I'm in bed all day. I don' t think a day goes by that I feel decent. In fact, I can't hold a job and I almost never leave the house now. I'm thinking of applying for disability. I called my doctor and asked him to make my bi-annual appointment sooner because I was feeling especially bad lately. He gave me an echo, same old routine, and this time found tha tI had a 120 mm gradient, just like the other doctor had found. He said it was systolic anterior motion and sent me to a heart surgeon, told me that the surgeon would deem what was necessary to correct it. The surgeon wanted his own measurements and sent me for an echo to find, surprise again, that this time I had no gradient. He said my thickening was severe though, and that was causing my symptoms. I went back to my doc who after more testing, concluded that diastolic dysfunction (mainly to the papillary muscle) was causing the SAM and thus the intermittent gradient. Therefore he concluded that if we treated my diastolic function, I should be fine. He also said that my wall measurements were still the same and only mild to moderate at most. Well, we treated my diastolic function and it's almost normal (not quite) but I still feel worse than I have ever felt. Whenever I eat my heart goes fast. It's gotten so bad that I make myself vomit if I overeat so that my heart will slow down. Living like this isn't living at all and I'm very frustrated. I made an appoinment with a doctor I saw on this website (Dr. Mark Sherrid) in hopes that maybe he will be able to shed some light on the subject. My doctor says that I'm able to work and do alot of things, just listen to my body and I'll know what I can and can't do. I told him if I listened to my body I would hardly ever sit up even. HAS ANYONE EXPERIENCED THESE SYMPTOMS? HAS ANYONE HAD A HUGE GRADIENT AT TIMES AND AT OTHER TIMES NONE WHATSOEVER? HAS ANYONE HAD THEIR SYMPTOMS WORSEN QUICKLY? At the rate things are going I wouldn't be surprised if I was in a wheelchair by this time next year. By nature I am an athlete and a traveler. I REFUSE TO LIVE LIKE THIS AS THIS IS NOT LIFE, IT ISN'T EVEN A CHEAP IMITATION THEREOF!. Someone please answer this. I know it's a long entry and I ramble, so I appreciate anyone who took the time to read it. Thank you everyone.

    Mike
    I\'m a 23 year old male who enjoyed an active lifestyle. I no longer have that luxury, but I am dedicated to finding a way to get it back. Feel free to contact me for any reason.

  • #2
    Re: Confused by diagnosis please help

    Hey Mike,

    Sounds like a lot of hard things to deal with. You are in the right place to find people who can give you their input. I have had similar experiences in that I too was diagnosed fairly young but went on to just deny it ever existed until the day finally came that I couldn't deny it anymore. I have had basically a very similar experience and have found the best way to get hold of this and start correcting the problem so life can be what it should be for people like us who were, and still desire to be very active, is to find an HOCM specialist. There is nothing better than finding a doc who knows this disease. Not all cardiologists can give us the kind of care we need, but a HOCM specialist can. Good luck and I bet you will have lots of good advice here.

    Doug
    NEMC's (Boston) First Myectomy 7-22-2003

    Comment


    • #3
      Re: Confused by diagnosis please help

      Mike, your post sounds similar to many on this board. I'm glad you're going to see Dr Sherrid. I understand he's a great doctor. Please read through this site. Not just the forums. There is a lot of information here. Also, when you have time, read through the posts. Even the archived ones. You'll find many stories that sound a lot like yours. You might be able to see how others have dealt with the same frustrations as you. Good luck, welcome, and keep us posted.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

      Comment


      • #4
        Re: Confused by diagnosis please help

        Dear Mike,

        I'm very glad you found us. While we generally prefer that people give Lisa a call and talk to her so she can help them find a dcotor that suits you, I'm glad you are seeing Dr. S. I've met him a few times and he is excellent and a good guy.

        Here is the deal ---you've been ignoring your body and your symptoms for so long that it took your heart A LOT to get your attention. Now that is has your attention, you are getting it addressed. With proper treatment, diet, medical care, and a commitment to not drinking or smoking it is highly likely that you will be able to do more again ---I can't tell you how much or when or anything but this is not the end of the world for you.

        The problem with HCM is that it is different in everyone. Even my mom and I don't have exactly the same experience with it or even me and my brother.

        However, there are lots of people that have episodes from large meals. They try and eat smaller meals more often. I eat about every 3 hours, usually a muffin or fruit or salad or something snacky for half of those and a small meal like fish or chicken with veggies/rice/etc for the other half. And breakfast of course, 2 eggs, 2 chicken sausage and toast or a muffin. This is an idealized menu (it left out milkshakes and girl scout cookies and bacon, for example) but it is just to give you an idea.

        Also avoid very cold drinks. Don't take any decongestants or anything with epheda, epinephrine, or ephidrine in it. No alcohol. No drugs. NO CAFFIENE. Reduce your dark chocolate intake. Milk chocolate is fine. The more you reduce the stimulants in your diet, the less tachycardia you will have. It will also help your medication work, too.

        Mike, do not freak out about how bad it is right now. It doesn't mean that it will always be this way or that it will get worse. The HCM is kicking and screaming right now to get taken care of like a hungry baby. It is more than likely that, once you get it fed and tucked it and understand your triggers, you are going to feel a million times better.

        I'm not up on gradients, but I do know that they go up and down and you are probably not alone. Dr. S. can explain that better than I can.

        When do you see Dr. Sherrid?

        Listen, I have to go to the unemployment office now, but I'll write more later. The bottom line is that you are taking the best step towards a better life by seeing a specialist and things will sort themselves out after that.

        Keep posting your questions and concerns here. THere are a bunch of us here who have been in your shoes. You are not alone and we all understand all that you feel about this. However, you will be ok and we will be here for you.

        hang in there,

        S

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        • #5
          Re: Confused by diagnosis please help

          by the way, please don't think that we are all ignoring your medical details. I tend to take anything a non-HCM specialist says with a grain of salt.

          We can help you read your echo report and other things, but I would recommend seeing what Dr. S's echo shows since some echos are better than others.

          S

          Comment


          • #6
            Re: Confused by diagnosis please help

            Hi Mike,

            Welcome to the forum. I'm sure Lisa will be along to give you her expert advice shortly. And don't worry about the length of your post, you should see some of the novels i've written here

            I tend to agree with Doug, in that you should see a specialist, get a decent echo done, and find out once and for all what your measurements really are. My cardiologist out in Montana performed two seperate echos on me, and both times he told me my gradient was very low (13mm) and shouldn't be causing me the symptoms i was having. It wasn't until i saw a specialist that i found out that my gradient was actually 100mm at rest. Since your gradient is a measurement of pressure within the heart i do believe it can fluctuate some from echo to echo depending on the circumstances. I had just eaten before my last echo so my gradient was probably elevated some by that.

            I've been a heavy drinker up until recently, and have smoked just about anything you could dry and roll up in paper or stuff in a pipe. It's hard to give all that stuff up, but there are many good reasons besides HCM to stick with it, so i'm trying my best. Large meals are a killer for me as well. Now i try to eat smaller meals but more of them throughout the day. I've been working outdoors for a dozen years now and i too am having a hard time giving up some of the physical things i like to do. In time i hope to get much of that back.

            As far as the disability issue, if you can get temporary disability to help get you through this tough period, that's great. Do whatever you have to do to get well and on with your life. My only advice would be... don't get too comfortable on it and start thinking you can never work again. You will get better. I think sometimes, especially with HCM, we need a reason to get out of bed every morning no matter how much it just plain sucks.

            I've done some work up in Yellowstone Park. It's beautiful up there isn't it? Especially this time of year when the wildlife is so abundant. Saw a lot of grizzlies, and got my first peek at the re-introduced wolves two years ago. What a sight

            Hang in there.

            Jim
            "Some days you're the dog... some days you're the hydrant."

            Comment


            • #7
              Re: Confused by diagnosis please help

              Hi Mike,

              You are in good hands with Dr. Sherrid. He will be able to answer all your questions. Dr. Sherrid is very knowledgeable on this disease process. My husband sees him and actually likes him! Roy doesn't like too many doctors! lol

              Let us know how it goes.

              Karen

              Comment


              • #8
                Re: Confused by diagnosis please help

                HI
                I HAVE HAD HCM FOR QUITE A PERIOD OF TIME NOW. ATLEAST 10 YRS BUT I FEEL NOW I HAVE HAD IT EVEN LONGER. HERES THE FUNNY PART, I HAVE BEEN COMPLAINING FOR YRS THAT AFTER I EAT I FEEL LIKE SOMEONE IS SITTING ON MY CHEST. THEY SAY ITS HEARTBURN LOL
                IM NO DOCTOR BUT I KNOW WHAT HEARTBURN IS. AND IT DOES NOT MATTER WHETHER IT IS A BIG MEAL OR SMALL MEAL. I PUT OFF EATING TO WORK BECAUSE I GET SO UNCOMFORTABLE.

                Comment


                • #9
                  Re: Confused by diagnosis please help

                  T

                  Have different types of foods created fewer symptoms? Some people report that a low carb or dairy-free diet helped them a lot. Anything like that?

                  S

                  Comment


                  • #10
                    Re: Confused by diagnosis please help

                    Mike,
                    Welcome to the HCMA. You are doing a good job of finding answers. You have sought out a specialist, you have found us and you will hopefully get a treatment plan that helps you LIVE a better quality of life than that which you have now.

                    Your comments are very "normal" for someone with HCM...the symptoms, the misdiagnosis, the feelings...the one thing that has me confused is the off and on again gradient??? that is strange to have such a high number than nothing??? Dr. Sherrid wil shed some light on this matter I am sure.

                    I can say this much...Life with HCM can be good... stay on top of your treatment and I think you will see improvement soon.
                    Be well.
                    Lisa
                    Knowledge is power ... Stay informed!
                    YOU can make a difference - all you have to do is try!

                    Dx age 12 current age 46 and counting!
                    lost: 5 family members to HCM (SCD, Stroke, CHF)
                    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                    Therapy - ICD (implanted 97, 01, 04 and 11, medication
                    Currently not obstructed
                    Complications - unnecessary pacemaker and stroke (unrelated to each other)

                    Comment

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