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Just Diagnosed.

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marjen Find out more about marjen
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  • Danielaeh
    replied
    Re: Just Diagnosed.

    Good news!!!
    If you still feel worried you may ask for a second opinio in an other center/hospital.

    Leave a comment:


  • marjen
    replied
    Re: Just Diagnosed.

    No high blood pressure. It usually is on the high side of normal like 135/80 or 130/72. He actually says there is no thickening. I'm within the normal range. It is this subtle overflow issue that is keeping him from saying 100% I'd don't have HCM. THats what worries me right now. He said is isn't going to diagnose me with HCM, but still can't say for sure its not there. Something is causing the minor obstruction and overflow issue. He now thinks the fainting issue on the roller coaster was not directly related to my heart. I am glad all the tests look good, but would feel better if it was conclusive. THere is always going to be that lingering doubt.

    Leave a comment:


  • Reenie
    replied
    Re: Just Diagnosed.

    Do you have high blood pressure? Have you been an avid weight lifter/athlete? These things can cause the heart walls to get thicker too. Lots of things that can be going on. Please call LIsa and I'm sure that she'll have some directions for you to look in to figure out what is really going on.

    Reenie

    Leave a comment:


  • marjen
    replied
    Re: Just Diagnosed.

    Now I'm a little confused. I just talked to my dr. I finally got the nuclear stress test and echo cardiogram results back. He says that he now is fairly certain I do NOT have cardiomyopathy. THe echo showed NO thickening of the heart wall, it is at the upper end of normal. Last years showed a similar result, but he said this one actually looked a little better. My stress test was completely normal, my fitness level was excellent and my heart pumps vigoruously, which he said was excellent. The only thing he still sees is a very subtle narrowing of the path between the aorta and left ventricle and something about a small overflow? issue. He has me on beta blockers and wants to continue that and check on it on a yearly basis. He still recommends I stay away from lifting weights as that can thicken the heart wall, but does not feel I should any issues with my normal running although I may want to tone it down a bit.
    So while I am glad to hear all this I still feel a bit weary of the situation. Another doctor that he works with looked at the results and did not see anything that concerned him at all. Does this all make sense?

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Just Diagnosed.

    When faced with diagnosis of any chronic condition you concider the effect on those you love, often your children. This is a process that we have all been through or are in at some level. The issues may deal with how you will function in your family, work and play life, you may wonder if you will be there for your family or will the disease take you away, you think of finacial, social and other impacts this may have on your life. This is common and I believe this is healthy. Only after you have allowed yourself to look at these issues, as painful as they may be, you can get on with your life, understand its importance and take the best care of yourself possible.
    So what about betablockers...in short they give your heart a bit of a break from the force of the beats and helps your heart relax so that it fills better. I wouls estimate that 80% of those with HCM are on some form of a beta blocker.

    Best wishes,
    Lisa

    Leave a comment:


  • Reenie
    replied
    Re: Just Diagnosed.

    I completely understand your concern for your children and their lives. I have 3 kids myself. When my husband was diagnosed they were 4, 7, & 8. I have certainly been in your shoes. And my husband was about the same age as you, he was 35. That was 3 years ago and he continues to do well. The biggest plus is that so far all of my children have screened clear of HCM. I'll continue to have them screened anually, but that's wonderful news for the moment. Good luck and know that we're here for any questions or support you need.

    Reenie

    Leave a comment:


  • marjen
    replied
    Re: Just Diagnosed.

    I think I understand the reason behind the beta blockers. I don't feel any different on them yet which is good as I understand it can make you feel lethargic. Plus I think he gave me a low dose (25mg) so I'm hoping that is a good sign.
    Its great to have a resource like this, the wonders of the internet. Without it I'm sure it would be harder for all of us, as I'm sure few of us know people with the condition in our everyday lives. I'm slowly coming to grips with things. The hardest part (and maybe the biggest eye opener) is looking at my two young children. I guess one always feels they will be here forever and forgets about the little things. INstead of my usual weekend handyman projects I spent most of the weekend with them and I am going to try and do more of that.

    Leave a comment:


  • Reenie
    replied
    Re: Just Diagnosed.

    The reason to take beta blockers do help the condition is that your heart overworks itself every day. It pumps harder than most hearts do. If you allow the medicine to soften the beat, the heart isn't overworked as much on a daily basis. Therefore, it won't "wear out" as fast as it would with no meds. Does that make sense?

    Reenie

    Leave a comment:


  • Danielaeh
    replied
    Re: Just Diagnosed.

    Hi!

    No illusions - finding you have HCM changes your life.
    How it will change yours - it will be your decision - not only your doctros....
    I know that first things look
    and I know how hard it is but I also learned to see things differently and appreciate life.
    I hope you can find support and understand that with the new knowledge and understanding about your diagnosis - you have tha power to deal!

    Leave a comment:


  • Glen Beamish
    replied
    Re: Just Diagnosed.

    You sound like me over 30 years ago, I was diagnosed in my early 20s and was running 5 miles, 5 times a week. Natuarally I had to stop. I had panic attacks for the next year and finally decided enough was enough I couldn't live like that, best decision I ever made.
    Over time and working with your HCM doctor, you'll learn how severe your case is and there is a wide gap between severe and not so severe. You'll also learn what you can or cannot do.
    Eventually I got back to riding a bike and have for the past 15 years. I've done some mountain bike riding, but not now as I have a bad hip so I do mainly road work now. In the spring I participated in a 50 km ride, so you can see it doesn't necessarily have to be the end of the road for excercise.
    For the vast majority of us Beta Blockers work fine at softehing your heart beat which allows it to relax more and therefore not work as hard.
    Sudden death happens only to a very small % of HMCers
    You will have to work with your doc to evaluate what you would be capable of and also if your a candidate for an ICD.
    Also have your family members screened if they never have been, HCM is a genetic condition.
    Like Bert said you've had this all your life and have just found out now, so try to relax and treat this as a challenge to overcome and not as an affliction that will do you in.

    Leave a comment:


  • Sarah
    replied
    Re: Just Diagnosed.

    Welcome.

    One of the many reasons to see a specialist is to be evaluated for any risk of sudden death. There are known risk factors and guidelines, but everyone is a little bit different and you can't always make a cut and dried call on whether you need an ICD.

    But to answer your question, if you are at risk for SD, then it can happen at any time. You are much, much MORE likely to go if you are playing basketball or running than if you were sitting down, but people have had their ICD fire in their sleep (but rarely).

    Also, yes, beta-blockers can help!!! However, as with any drug, watch for side effects. If you get depressed, lethargic, or have more palpitations than before, then you should talk to your doctor about taking something else. And never quit suddenly or skip doses, it can make you worse.

    I also need to point out that, no matter where you go you are likely to be a part of the medical research database. Even my local PCP makes me sign a form saying my records can be used for medical studies (without any personal identification attached).

    The key is to find someone who you respect, trust, and can work with --who also knows HCM inside an out. The specialists are used to working with local doctors to coordinate your care so you don't have to fly somewhere every time you need to see the doctor.

    Personally, I went to the Mayo and they were incredible. I miss them still. I will never have any major medical work done anywhere else if I can help it. However, I know someone who had a bad time there. This is very rare, but it can happen. Doctors are human too. They aren't going to be perfefct every time or be able to meet everyone's needs always. People have different expectations about how their doctor should behave and say and do.

    So investigate specialists and find the one that works best for you (and the HCMA is here to help you with that). See the links page, check out the web sites, call them, ask about billing/insurance, ask about the process, ask anything.

    take care,

    s

    Leave a comment:


  • marjen
    replied
    Re: Just Diagnosed.

    Question though, do the Beta blockers and all this precaution help the condition? Is the only chance of sudden death when you are working your body hard, or can it happen at any time? Thats what confusing me right now.

    Leave a comment:


  • Reenie
    replied
    Re: Just Diagnosed.

    As far as taking meds for your heart go, the beta blockers are to soften the heart beat so that the muscle can relax more between beats. This allows the heart to fill more fully with blood. Just thought you might want to know the theory behind it, especially since you don't feel any arrhythmias.

    Reenie

    Leave a comment:


  • marjen
    replied
    Re: Just Diagnosed.

    Thanks for all the replys everyone. It is very overwelming at first. Today I just started on Beta Blockers. I am not a fan of any medications so taking something that controls my heart is scary to me. I am having a new echo done next week as well as a stress test. Hopefully this is something that has always been there and it isn't getting worse.
    Its so strange to me that if I didn't go on vacation and go on a roller coaster that for whatever reason caused me to pass out, I would be going about my life like I always had with no knowledge of the situation. Hopefully once all tests are back I can find some type of excercise program that the doctors will allow me to do.
    Again thanks you for the kind words.

    Leave a comment:


  • cynthiaG
    replied
    Re: Just Diagnosed.

    just had to comment here...
    I have the utmost respect for this Boston location. They covered all of the bases for me (had echo, stress test, MRI) and have always returned calls and have said on more than one occasion, to call them anytime with any questions or just to talk. I have always felt that I was their full focus at every office visit. My perception of them is one of high regard and respect .

    Leave a comment:

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