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Lisa Salberg Find out more about Lisa Salberg
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  • #46
    Re: Newly Diagnosed... start here!

    Thanks for the positive reinforcing comments. Its good to know that there is someplace to go and talk with someone who has had similar experiences when it comes to HCM. I know that most people don't understand HCM and unless you collapse and have to be rushed to the ER don't think its a serious health issue. I think that when you tell people that your scheduled surgery is 6 weeks away they sort of believe that your condition is not really a big deal. My surgery is scheduled with Dr. Smedira at the Cleveland Clinic. I understand he is one of the top cardiac surgeons in the US. I just wish the date would get here and I can concentrate on other things, seems like its constantly on my mind and hard to think about anything else.


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    • #47
      Re: Newly Diagnosed... start here!

      Was wondering if anyone else has symptoms such as severe pains in left arm, chest and shoulder, SOB after a meal due to their HCM. Seems like that is when it occurs most often. Just wondering. My local PCP and cardiologist both say only that my heart condition is unique. What's unique? First cardio doctor I saw said it was probably just acid reflux. I no longer see him.


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      • #48
        Re: Newly Diagnosed... start here!

        It is quite common with HCM , especially HCM with obstruction, to get symptoms after meals, chest pain palpitations, pounding , arrhythmias and more. This is caused by the redirection of blood flow to the gut fir digestion....leaving the stiff heart with a lower volume of blood To work with. Stiff hearts do not do well with low blood volumes whether after eating or if you are dehydrated.
        That being said.....It is important that every symptom not get automatically blamed on HCM. Chest pain with arm and shoulder pain can be indicative Acute Coronary syndrome. You should be tested and have that ruled out so you know when you feel the pains it is for sure your HCM.
        Are you seeing an HCM specialist? If your cardiologist thinks your heart is unique he probably is not seeing a lot of HCM patients. Getting a thorough eval at a Center of Excellence might be very helpful to you.
        Last edited by JillC; 09-17-2015, 02:10 AM.
        After years of symptoms:
        Officially Diagnosed HOCM 2006
        Myectomy 3/11/13 at non-COE
        Extended Myectomy 7/23/14
        At Mayo with Dr. Joseph Dearani

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        • #49
          Re: Newly Diagnosed... start here!

          Yes, Im seeing doctors at the Cleveland clinic for HCM now. Have been evaluated for number of symptoms. Was determined to be Apical HCM. Have a apical myectomy scheduled in October.


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          • #50
            Hello all,

            My name is Tony. I'm a husband, father to a beautiful 3 year old girl, and I'm 34 years old. A little over a month ago my daughter woke me up on a Sunday to watch cartoons. She is an early riser because my wife takes her to daycare in the mornings and it should be illegal for how early they get up in the morning. This day was suppose to be a special day or at least a day that I was going to try to make special as it was Valentine's day. I told my daughter I would get up, grabbed a glass of water, and was on my way back to get the cards and candy I had purchased for the two ladies in my life. As I was making my way back to my bedroom my heart started racing and I couldn't catch my breath. I've been in shape most of my life and even tried competing in a fitness event about 7 years ago so I figured whatever this was, I would fight it and eventually it would go away. After about 25 minutes I told my wife I was losing this battle and needed to be taken to the emergency room. I had gone into AFIB that morning and it took 14 hours to get me back to normal. Since I had this issue the heart doctor wanted to run more test. A couple weeks ago I ran a stress test and I pushed myself to about 185 BPM after 12+ minutes on an inclined treadmill. I started to feel dizzy afterwards and the doctor diagnosed me with HCM. I ran a stress echo a few days ago and here are my results.

            Left ventricular function is hyperdynamic (EF > 70). Calculated EF = 71.4%. · Trace tricuspid valve regurgitation is present. Estimated right ventricular systolic pressure from tricuspid regurgitation is normal (< 35). · At rest, there was no significant gradient. At peak stress, there is a mid cavitary gradient of 84mmHg. There is no gradient in the LVOT. · Normal stress echo with no significant echocardiographic evidence for myocardial ischemia.

            This is all new to me and I've been doing my best over the past couple days to research these words and numbers. The doctor has me on 25 MG of Metoprolol Tartrate daily since the AFIB and I don't know if it is the medication or myself but life has been different. I'm currently on no physical activity and I've yet to see the cardiologist after my latest stress echo. I came across this community when I was researching how to exercise with HCM.

            I've read some incredible and courageous stories from these forums and youtube. I am sure I will learn a lot about this recent diagnosis from others and this community.

            Some additional information I've found out from the doctors is that I have an enlarged heart and an abnormal EKG; however my EKG has been consistent for 10 years so they say it is normal to "me".

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            • #51
              Hi Tony,
              I can feel your distress.... And the worst part of any new diagnoses is the " not knowing " It is going to be very important for your own peace of mind, and to make sure you are getting the most up to date information on care and treatment, to 1) educate yourself on HCM ....You may want to order the book written by Dr. Marin and Lisa Salberg 2) If at all possible get evaluated at a HCM COE....Center of Excellence. Many cardiologists know the basics, but not the nuances of HCM.... At the COEs they see the usual and the unusual cases of HCM and your evaluation will be very thorough and very meaningful.
              RE Metoprolol. Beta Blockers are the first line drug for HCM to reduce the force of cardiac contraction....However, they are not the ONLY drug. Beta blockers can have the side effects of fatigue and/ or depression. I myself cannot tolerate them and I have been on Verapamil, a calcium channel blocker for over 10 years with good management. If you are having side effects that don't resolve in a month or 2 on a medication, your cardiologist should have some other medications you can try. Also, your continuing evaluation should include a 7 day to 30 day Holter monitor.... To look for any ventricular arrhythmias and possibly a cardiac MRI to define your condition further and look for scarring, which can generate arrhythmias.
              Bring your questions in writing to your cardiology appointment so you don't forget anything. He/she should be able to answer all your questions and make you more at ease with your condition, if he has a good amount of HCM experience behind him. Keep us posted.
              Last edited by JillC; 03-28-2016, 11:47 AM.
              After years of symptoms:
              Officially Diagnosed HOCM 2006
              Myectomy 3/11/13 at non-COE
              Extended Myectomy 7/23/14
              At Mayo with Dr. Joseph Dearani

              Comment


              • #52
                Originally posted by JillC View Post
                Hi Tony,
                I can feel your distress.... And the worst part of any new diagnoses is the " not knowing " It is going to be very important for your own peace of mind, and to make sure you are getting the most up to date information on care and treatment, to 1) educate yourself on HCM ....You may want to order the book written by Dr. Marin and Lisa Salberg 2) If at all possible get evaluated at a HCM COE....Center of Excellence. Many cardiologists know the basics, but not the nuances of HCM.... At the COEs they see the usual and the unusual cases of HCM and your evaluation will be very thorough and very meaningful.
                RE Metoprolol. Beta Blockers are the first line drug for HCM to reduce the force of cardiac contraction....However, they are not the ONLY drug. Beta blockers can have the side effects of fatigue and/ or depression. I myself cannot tolerate them and I have been on Verapamil, a calcium channel blocker for over 10 years with good management. If you are having side effects that don't resolve in a month or 2 on a medication, your cardiologist should have some other medications you can try. Also, your continuing evaluation should include a 7 day to 30 day Holter monitor.... To look for any ventricular arrhythmias and possibly a cardiac MRI to define your condition further and look for scarring, which can generate arrhythmias.
                Bring your questions in writing to your cardiology appointment so you don't forget anything. He/she should be able to answer all your questions and make you more at ease with your condition, if he has a good amount of HCM experience behind him. Keep us posted.

                Thank you for the information Jill. I had an MRI a few weeks ago and a stress echo a couple weeks ago, but I've yet to see the doctor since these test. I have a 7+ day monitor scheduled for April 4th and will probably have a follow up appointment with the doctor after they can review the monitor. Now that I think about it, it will probably be awhile before I see the doctor again. I do feel fatigued a lot on my medication and sometimes it can be annoying. I don't believe I've had any serious depression from my diagnosis or medication and I've tried looking at the positives. A while back I was laying in the hospital not knowing my condition and if I would even see my daughter grow up. Now that I know a majority of my condition I can see others have lived long lives and in exchange I have only had to give up a little like not playing basketball or small changes I've had to make in my life. In the long run I can't be depressed at that but instead see it as a second chance that life can be taken away in the blink of an eye.

                I noticed there's a children's HCM center of excellence in Cincinnati, Ohio. I was thinking since HCM is genetic I should take my daughter there since I am only a couple hours away. This may be a silly question but do they see adult HCM patients and the hospital itself is a children's hospital? I will have to do more research.

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                • #53
                  You might call the Pediatric HCM group at Cincinnati and ask where they send the children when they become adults....They probably have recommendations. Do you live in Cincinnati? If it were me and I lived anywhere near Ohio I would go to Cleveland Clinic.....I believe they see children there also being a premier heart hospital.....
                  Your attitude will take you a long way while navigating the ups and downs of HCM. And you are right, the majority of people live a very good life despite HCM....stay positive, stay educated, ask questions....Life is a school....HCM is just happens to be a required course for some of us.
                  After years of symptoms:
                  Officially Diagnosed HOCM 2006
                  Myectomy 3/11/13 at non-COE
                  Extended Myectomy 7/23/14
                  At Mayo with Dr. Joseph Dearani

                  Comment


                  • #54
                    I was scheduled for an eye operation, since I'm now 65, the surgeon requested a physical. At the physical my GP found a murmur & scheduled an echo-cardiogram. Those results - resulted in my being referred to a Cardiologist.. After waiting 30-days - I met with the Cardiologist today. He has ordered a second echo-cardiogram to "see" for himself what's going on. Since I am otherwise "healthy" this diagnosis has hit me hard. The more I'm reading though - the more hopeful I am that it can be managed over time...
                    Last edited by HHmstead; 06-03-2016, 11:13 PM.
                    C. Hoge

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                    • #55
                      Thanks to Lisa, et al for making this forum a reality. I was diagnosed with AFIB after a life insurance physical (I felt like I was going to die and my GP said I was just stressed out). After a year of monkeying around with my GP and a Cardiologist they referred me to Mayo to meet with an EP. I went up to a battery of tests the day before a cardiac ablation and the TEE uncovered HCM. My ablation on April 6th was successful (Fingers crossed) and I've been on Amiodarone for the last 60+ days. Unfortunately not all of my systems were AFIB and I still tire after about 6 hours of moderate exertion.
                      On a positive note our boys both had clear echos and that helped to reduce my stress.

                      I meet with the HCM unit next week for 3 days of testing and consultation fun. Fingers crossed. Ive spent the 2 years worrying and doctoring to "fix my heart"
                      Last edited by Hadleyro; 06-20-2016, 09:43 PM.

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                      • #56
                        I live in Denver and got introduced to the expertise at Mayo Clinic by members on this forum. The HCM team at Mayo is tops, I feel they saved my life after a botched situation from another institution. Be sure to have all your questions written down when you go in.... The more answers you get from your team, the less stressed you will be. Mayo also has an online HCM group which can be accessed.....I'm not sure how to access it yet but I will find out and let you know.
                        best of luck to you
                        After years of symptoms:
                        Officially Diagnosed HOCM 2006
                        Myectomy 3/11/13 at non-COE
                        Extended Myectomy 7/23/14
                        At Mayo with Dr. Joseph Dearani

                        Comment


                        • #57
                          Just received a diagnosis this morning. It certainly wasn't news I wanted to hear, but it explains a lot about my crazy health symptoms the past several months. Now I'll have to tell our grown kids, so they can be tested too!
                          Looking forward (sort of) to digging in and learning about this and meeting all of you!

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                          • #58
                            Welcome, Amy! When you get a chance, please go to the "Hello! My name is . . ." forum and introduce yourself.

                            Gordon
                            Myectomy on Feb. 5, 2007.

                            Comment


                            • #59
                              Originally posted by David Hendrix View Post
                              Re: Newly Diagnosed... start here!

                              Hello my name is David. My Son Nicholai was diagnosed with HCM. He is only 3 and a half months old now. Our pediatrician caught this when he was about 1 and a half months old. She set us up with a cardiologist who on the first appointment said that he did have it and that he was going to start him on a low dose medicine to see if it would help. Thankfully we went to our appt. today and the medicine is indeed helping and has bumped up his dose to what it should be. I have been reading non stop and most things i've read says that most cases go unknown until the worst happens or its caught once kids start doing sports. My Girlfriend and I are very lucky to have caught this at such a young age. I was wondering if any other parents have caught it so young and how did you help your kids grow and teach them? this my not be the spot to ask that but i will do it here and find a better thread maybe to help that question.
                              I was diagnosed at 2 and my son had a nonHCM related open heart surgery at age 2. While my diagnosis was decades ago, I do remember growing up and wanted to be treated as normally as possible. I was the "sick kid", not allowed to do so many things. Classmates and adults treated me so much differently after I had OHS at 10. My son had no restrictions longterm after sugery. We made sure we had play dates lined up for him afterwards when he was able to play normally, keeping his life as normal as possible.

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                              • #60
                                Hello my name is Yvonne and I am really happy to have found you all. I am now 62 years young and I was diagnosed with Apical Hypertrophy in 2006. I have had no symptoms but it was discovered when I turned 50 I had a routine ECG done and it came back very strange. I was referred to a cardiologist in Ottawa, Ontario and it was diagnosed with an MRI. I have seen the cardiologist every year or two since and had routine ECHOs. A few months ago I had another cardiac MRI and it showed that it was worse. I still have no symptoms (except when I think about it I can almost create chest pain with worrying) - how she explained it is that she did a comparison with the MRI I had in 2007 and rather than muscle in the apex of my heart I have fibre and it has gone from 8.67% to 15.8 %. The basal wall thickness is 12-14 mm. My ECGS always show that it looks like I am having an acute myocardial infarction. (I carry one with me in case of emergency). She now wants to put me on beta blockers. - Bisoprolal 2.5 mg once a day. I had a 24 hour holter monitor done and am just waiting to hear back from the results of that - she said she wanted to know if I had any arrhythmias at the moment to make sure she was prescribing the proper dosage.
                                I have tried to ignore this whole thing up until now. I have been a patient at the heart institute since 2007 for genetic testing and I don't have any markers that are identifiable. I have no family history of people suddenly dying. I have also lived a full and active life, hangliding, paragliding and bungy jumping and taxing my heart to the fullest. Which makes me wonder how I survived if I have had this since birth. My children have all been tested and are clear.
                                I am trying to plan my next steps,
                                1. Learning as much as I can about this, I have a copy of my complete file.
                                2. I read on here about a chart consult at the Mayo Clinic - I will look into that.
                                3. Get another opinion from a HCM specialist - maybe in Toronto? I will actually go anywhere.

                                I would appreciate hearing anything from anyone. I am feeling confused and worried, but I am not sure how worried I should be. Some questions I have are:
                                If this has progressed to nearly double in 9 years, how quickly does it progress? or is this a natural progression. How much is seriously bad? When does it get to cause problems and what kind of problems.
                                Does this mean 15.8 % of my heart is fibrous - or what does that mean? Fibre replaced muscle?
                                Can it be reversed? and what control over this do I have? I am healthy otherwise.
                                Any input is appreciated.
                                Thank you very much. (I hope I am posting this in the right place)

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