If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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Lisa Salberg Find out more about Lisa Salberg
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  • #76
    Thank you for the information and advice, Jill and gfox. I'm probably fretting over nothing, but it's a difficult thing to take my mind off of.

    I'll be sure to give the UMCC a call on Monday.

    Comment


    • #77
      My name is Sarah, I am 38 years old. I am a wife, a mom of five and a missionary in Tanzania. I was just diagnosed this week after fainting in my bathroom in the middle of the night. My mother has HCM and is headed to a transplant (she might be on here somewhere) so I have some understanding of HCM. My journey with look different from what I have seen with my mom but the diagnosis has still come as a complete shock. The doctor here has me on a calcium channel blocker and blood thinner. I will see him again in a month. I am trying to decide if I need to come back to the US for further testing, do we need to move our whole family back... Life-changing decisions. Well, trying to take my time and decide. Anyway, I know how much support my mom has gotten from this forum over the years and decided to join the community. Thanks so much.

      Comment


      • #78
        Hi Sarah,
        And welcome! Sorry you're having to cope with this.

        First things first: are you having arrhythmia (in particular, atrial fibrillation or atrial flutter)? Blood thinners make sense for people having those, but not for most others.

        Why don't you arrange for a consult with the HCMA office - email or phone to get it scheduled, and it could be done by phone or Skype. That would probably lead to more useful info than our giving you recommendations, as those would really require lots of information.

        This bulletin board isn't used as much as it used to be - there're a lot more people using the HCMA's Facebook page. You're welcome to use either, but you'd get a lot more response on FB.

        Gordon
        Myectomy on Feb. 5, 2007.

        Comment


        • #79
          Hi ,


          I am so happy I found a platform to know more about HCM.. Glad u guys help eachother.. My father was recently diagnosed with non obstructive HCM .. He has blood pressure from 15 years and has been taking medications for the same.. My queries are as follows

          1) The doctor said he does not have to worry about it and he can live a normal life without doing much excercise .. is it how it's supposed to be? Or shud he do something apart from regular checkups?


          2) I got myself checked too and the echo seemed normal ..The doctor said not to worry since echo is normal.. my question is can I keep excercising and live like nothing happened or should Ihave be worried ?

          3) I plan to get an echo done every year is that enough ?

          4) Does HCM develop all of a sudden which might go undetected?

          5 )I have checked with two doctors now one of them said I have borderline lvh but it might b frm excercise and not HCM since dey cud not find any scars suggestive of HCM.. should I b worried..?

          6) Finally how can I confirm that I don't have hcm


          I would be very pleased if you could answer this.. I wish I could have met your community in person but since I am in India I don't think thats possible..



          Thanks in advance

          Comment


          • #80
            Dear Nithan....Welcome I have traveled to India many times over the years and truly appreciate your country. There are several world reknown HCM specialists that have traveled from the USA to give training to Cardiologists and surgeons in India. However, it is sometimes hard to know if your own particular doctor is up to date on HCM whether you are in the USA or India. This is why we encourage people to educate themselves about the disease so they can advocate for themselves.
            There is a book for sale on this website that gives good basic information.Plus you can call, email or skype the HCMA office. A good simple phone app with info from experts is HCM Care. Here are a few answers to your questions:
            1) HCM is hereditary and can exist in people with no symptoms at all.....If you have no symptoms there is no need for treatment but regular screening is recommended in family members of someone diagnosed with HCM.Some forms of HCM will only show up on exercise.
            2) An echocardiogram is a good screening to find HCM. In those diagnosed by echocardiogram or with symptoms of palpitations, fainting, skipped beats a 3-7 day EKG or holter monitor is usually given to rule out ventricular arrhythmias
            3) There is no need to stop exercising with HCM, but certain types of extreme competitive sports, weight lifting and others are not recommended....this should be reviewed with your doctor.
            4) Left Ventricular Hypertrophy can be caused by high blood pressure or athleticism. A good HCM echocardiologist can tell the difference
            5) A family history of cardiac problems or early unexplained death is important for you to find out and give to your cardiologist
            Last of all .... you ask " Should I be worried ?" Worry causes distress, anxiety, high blood pressure and can make symptoms worse. Rather than worry, Educate yourself, find a knowledgeable doctor you can trust, and know that most people with HCM, when under proper care lead pretty normal lives.
            If you have no symptoms and you have been cleared by family history, EKG, and echocardiogram.....You can consider yourself free of HCM manifestations. However,.....it's quite possible symptoms will show up later. But you can't do anything about that except to focus on general good health, get screened regularly and notice if you develop any symptoms.
            What part of India do you live in ? There may be an HCM specialist in your area......Check with the HCMA.
            Last edited by JillC; 03-12-2018, 11:35 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


            • #81
              Hello, I have HCM and have been through two mitral valve replacement and myectomy surgeries. I am in class 111 heart failure. My HCM specialist said, I need a new heart, but not sick enough. My question is this I have recently started to have more shortness of breath, diarrhea, and sneezing, along with other normal HCM symptoms. Has anyone had these symptoms. I am not sure if I should contact my doctor. She said, if I had any changes but not sure if these are related. I am on a Lasix and was told the diarrhea could be from the lungs filling up and dumping to quickly into my system causing the diarrhea. The pressure in my chest is relieved by the sneezing for a short time. Any thoughts??

              Comment


              • #82
                Hello RR....I am sorry to hear you are having such difficulties. I see you live in Arizona? Where is your HCM specialist? Is he/ she affiliated with an HCM center of excellence? If you have a concern when you are dealing with heart failure you should go directly to your Cardiologist. Being fluid overloaded can cause many symptoms .... but I can't really address your question specifically. It is good practice when in heart failure and requiring lasix to weigh yourself daily and keep a record....this information can help your MD adjust your medications and keep the fluid overload under control.
                Only around 3-5% of HCM patients go on to unmanageable heart failure .... It is important to be managed by an HCM expert, if not directly, then at least as an advisor to your local cardiologist. The Mayo Clinic in Arizona has some very good HCM specialists.
                I also suggest that you call the HCMA office and set up an appt. to talk to Lisa Salberg. She has been through a failing HCM heart and a heart transplant and knows a lot of information that could be helpful to you as well as helping you evaluate your current issues and treatments.
                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


                • #83
                  Thank you so much. I am managed by Dr. Wilansky at Mayo. I just didn't want to bug her if my symptoms are not related. Also, do you have Lisa Salberg's number and where is she located?

                  Comment


                  • #84
                    Hypertrophic Cardiomyopathy Association
                    HCMA office:18 East Main St. Suite 202, Denville, NJ 07834
                    Phone: 973-983-7429
                    Fax: 973-983-7870
                    Email: [email protected]

                    There is also an HCMA Facebook group that Lisa moderates and there is also a Mayo HCM support group on Facebook if you are a Facebook user.
                    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


                    • #85
                      Hello all,

                      I was diagnosed with AHCM a few months back, and thought it was about time I did a bit more research, which lead me to this organization.

                      When I was approximately 32 years old I was stationed in Montana with the Air Force. Sometime in late winter or early spring I started having some significant breathing problems and my left arm started to feel like it was numb as if it was going to sleep from laying on it for too long. I also had labored breathing. My doctor diagnosed me with asthma. Tests were run, although I canít recall which, to ensure I was not having heart attack. I believe I also had some stress tests taken to ensure my heart was healthy. Anyways, nothing else was identified. Over the next several years I would occasionally complain about my left arm going numb, but it was either ignored or my asthma was blamed.

                      I would often times mention that I was tired much more often than I thought I should be. So, approximately 6 years ago I conducted my first sleep study for sleep apnea. I was told the results showed I did not have sleep apnea.

                      Last summer my doctor scheduled me for another sleep study. When I woke the next morning, the tech said that it was important for me to see my doctor ASAP, due to my EKG. Over the next couple of months, I had several tests, which resulted me being diagnosed with AHCM and mild sleep apnea.

                      My cardiologist stated that in the past 11 years as a cardiologist, he has only seen a few AHCP, but I donít know if that means anything significant. How is it in comparison to the more standard HCM? Are there different risk factors, etc?

                      Iím on different medications to help with the AHCM and asthma, I use my CPAP for the sleep apnea.

                      As with all of you, I have good days and bad. Iíve had more bad days recently, so Iím scheduling time to see my cardiologist again; Iím going to ask to see a specialist as well. In preparation, I wanted to ask if numbing in the left arm is typical. I have discomfort breathing at times, like Iím sure everyone does, but I donít read anything about the left arm feeling like itís getting less circulation than the right.

                      Any feedback would be appreciated.


                      Comment


                      • #86
                        Hello Roscoe,
                        My name is Jill, it is a common story among people with HCM to have been diagnosed with many things like asthma before their diagnosis of HCM was discovered. You are right to do research and educate yourself about your condition so you can advocate and get the best care for yourself. You are young and can have a productive enjoyable life with proper medical care. My first recommendation would be a full evaluation at an HCM Center of Excellence. There aren't any in Washington but their is one in Oregon......You can search for names on the first page of this HCMA website. You might also benefit by making a phone appt with Lisa In the HCMA office to discuss your case.
                        By AHCM.....I'm assuming you mean Apical HCM? This is not rare, but of course is much more well known in a Center of Excellence ( COE) that sees hundreds of HCM patients rather than a local Cardiologist who has not ever seen a case.
                        Even among COEs there is a recognized Center that has the most expertise in Apical HCM and that is Mayo Clinic Rochester MN. If you can get there for an evaluation or get your echos and records sent there for an opinion....They can act as a consult to your local cardiologist for the rest of your life. Choosing the highest standard of care can help you live your best life.....even if it means traveling across country.
                        As far as your left arm pain.....HCM can have weird quirks and nuances that aren't always easily explained.....I have increased wheezing when I lay on my left side....no explanation. The pain might even be due to a shoulder or thoracic outlet issue that is locally pinching blood supply and nerves and has nothing to do with your heart. Or it could be angina....a type of heart pain that can localize in the chest arm or back.
                        There is an HCMA Facebook Group and Mayo Clinic has a Facebook group for HCM patients.....where you may be able to meet some people with similar circumstances to talk with.
                        Last edited by JillC; 03-25-2018, 12:55 PM.
                        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


                        • #87
                          Hi All,
                          Wow, this is a very informative website. I'm glad I found it. I was recently diagnosed with HCM with Obstruction and I'm a little frightened of what is to come. I visited my doctor (cardiologist) 10 years ago with the complaint of getting out of breath too easily. After passing a stress test my complaint was attributed to an office job, being overweight and de-conditioned from lack of exercise. A few years later, probably around 2012, I visited the same doctor with the same complaint and again passed a stress test. After retiring 9 months ago, I hit the gym pretty heavily and lost 30 pounds, however it seemed odd that my exercise tolerance and ability was not increasing, in fact, it was getting worse. Again, I visited the same doctor and this time we were able to make the diagnosis of HCM with obstruction. So, I'm currently on 120 mg of diltiazem once a day and we are still evaluating and adjusting medicines. Anyhow, very happy to be here in hopes of learning more about what to expect and relieve some of my anxiety. I'm happy to share my story as we go and also learning from those who have more experience in this disease. Best regards....Riceman

                          Comment


                          • #88
                            Dear Riceman,
                            Welcome to the forum, It is not uncommon for people to be misdiagnosed for years before their HCM diagnosis. The key is that a regular stress test will not necessarily give any indication of HCM. Neither will an EKG. It is an echocardiogram that is used for diagnosis and the echocardiogram needs to have a portion done with a valsalva maneuver. If you look on the home page of this site....there is a directory for HCM Centers of Excellence. There are a couple on the east coast and it will be well worth your while to get a full evaluation at a Center of Excellence. They will set you up with the latest information and expertise......and frankly probably could have diagnosed you decades ago. With a 1 in 500 incidence of HCM , your local cardiologist may not have a lot of experience with HCM. Other resources for information are calling the HCMA office and joining the HCMA Facebook group. Many people like the increased activity of the Facebook group ..... this forum is a bit quieter since the Facebook group started. There is also a short, comprehensive book on HCM for sale on this site. Knowledge is power, so find out and understand as much as you can about your condition.
                            Last edited by JillC; 08-28-2018, 12:49 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


                            • #89
                              Hello all, my name is Greg. I am 47 years old and last Wednesday the 22nd of August suffered a stroke while on duty. I currently serve as a sergeant at a municipal police department. I suffered left side paralysis for a short period of time but most of those symptoms have resolved. During my work up in the hospital, I was diagnosed with HCM. To this point, I have never had any fainting spells or the like when exercising. I have been active my entire life. I served four years in the United States Marine Corps and often ran much more than I would have liked, LOL. I continued through life being active, weight training, biking, roller blading, never with any issues. I am passionate about SCUBA diving and in my off time, teach students how to dive. Never an issue. I recall a couple weeks ago having some type of arrhythmia that subsided after about 20 minutes after cutting the lawn. I didn't think much of it. I have had times of sweating profusely without labor, shortness of breath after a flight or two of stairs in full uniform, or a foot chase. I have never given much thought to it, other than "this is how I'm supposed to feel as I get older." My father has a terrible cardiac history to include a triple BP and pacemaker/defibrillator but never any mention of HCM through at least 13 hospitalizations following cardiac events.

                              I was released from the hospital last night on 3 new medications and will do a heart event monitor for 30 days. I have had regular echo, stress echo, cardiac MRI, TEE to this point. The cardiologist said he will likely have me do another MRI to get an accurate measurement of my septum in hopes to accurately determine whether I need a defibrillator or not. He briefly brought up a myectomy just for educational purposes I believe, not saying I needed one. For the life of me, i can't remember him saying anything about my ejection fraction after my stress echo. Probably side effect from the stroke. The TEE was negative for clotting and they suspect my stroke was brought on by AFIB from the HCM.

                              I hope to gain as much knowledge here as possible and live a long, productive life! I have a gorgeous wife and equally beautiful 11 year old daughter, not to mention the rest of my family to be here for. I am so grateful I have found this site and can read and educate myself from your experiences and be certain there is such a thing as a "normal life" after being diagnosed. I have already consulted my daughter's physician to have her checked as well as my sister and my two nephews. Knowledge is power and power is prevention! I look forward to getting to know many of you. Best regards, Greg

                              Comment


                              • #90
                                Welcome Greg, What a shock, to have a stroke and then find out that you have HCM. One of those instances where something we would never wish for, a stroke, leads you to a diagnosis ..... which could save your life. HCM has become a very manageable condition over the last decade....when in the hands of a knowledgeable health care team. That is why you will find over and over in this forum , on the HCMA Facebook group and over the phone talking to HCMA patient advocates: If not already there, please consider a thorough evaluation at an HCM Center of Excellence. I see you live in Ohio..... and Cleveland Clinic is a COE.
                                It sounds like you have a very positive, pro-active attitude and that can make all the difference in managing your HCM..
                                Blessings to you and your family.
                                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

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