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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  • JillC
    replied
    When I was in the hospital for Takot subo....Everyone kept asking me if I had had a loss etc etc. My trigger was 2 weeks of being on nebulizers and steroids for an asthma exacerbation. They now have gotten away from the title of " broken heart syndrome and call Takot subo " Stress Cardiomyopathy" ..... Not all HCM patients are candidates for myectomy.... butvI was and it has helped a lot. I am out of shape from being too tired to exercise, butvIm working on that.
    As far as Private Messages.... there should be a button next your sign in at the top of the page that says Messages, click on it and select send a new message..... address to JillC

    Leave a comment:


  • BustedHeart
    replied
    Hi Jill! Thanks so very much for your response!!! Still figuring out this website. How do I get to send a "private message" Heart cousins for sure! At my local hospital in Longmont all the docs and nurses would look at my chart and all said the same thing, "Has anyone told you how Bizarre you are?" Not very reassuring! Then they all started asking who died in my family! I've been under those kinds of stresses in my life but not as much now. Although all my closest friends tell me I have been really stressed. Was your Takot-subo brought on by extreme stress? Folk here were implying that the takot-subo would be over in 4 weeks but yours took 3-4 months?! Now that I know about hocm, I believe I have had symptoms for decades and made excuses, I'm tired today, I'm out of shape, it's just heartburn, etc etc
    It looks like you went through the myectomy? Are you much better now? Thanks so very much for responding!!!!!

    Leave a comment:


  • JillC
    replied
    Sora, welcome to the forum.... This forum can be a bit quiet. If you like a higher activity type of forum, Lisa Salberg has an HCMA Facebook group you can join.
    All of this can be a bit much at first.... but going to an HCM center of excellence, like Tufts, for evaluation and a treatment plan is THE very best thing you can do. After they give you a treatment plan, your local cardiologist can have an ongoing relationship with your Tufts Cardiologist and manage your condition at home.
    I feel like we must be " Heart Cousins" I am also 69 years old, I live in Denver and I also had an episode of Takot-subo Cardiomyopathy on top of my HCM with a decrease in heart function to 30%.... the combination of the two cardiomyopathies is pretty rare. The good thing about Takot subo is that it is reversible....I believe I got back to a normal EF after about 3-4 months. I'm not sure that an accurate HCM eval can take place if you still have the effects of Takot subo....so that would be a good question for docs at Tufts before you set up your initial evaluation. HCM is in general a very manageable condition....and you likely will return to the lifestyle you enjoy. The Takot subo is what sent you suddenly down the rabbit hole, the HCM is something you have probably had for years but showed up when you went through your current tests. Ask questions, learn about HCM, keep your healthy lifestyle and use HCMA as a resource and support. Feel free to send me a private message if you would like.
    Jill C.

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  • BustedHeart
    replied
    Hi all. Newly diagnosed here. My name is Sora and I am....was....an extremely healthy 69 year old widow. I have been diagnosed hypothyroid for the last 30 years but otherwise have always been extremely active and poster child healthy. In one of my many lives I was an organic farmer and have actively followed what came to be known as a heart healthy diet for easily 40 years. Up until last week I commonly walk 2-4 miles a day and was working in a health food store 20 hours a week of continual lifting and running around. Last week I went to a new hard core aerobics class. 10 minutes before end of class I got extremely tired but pushed through to the end. Afterwards, I collapsed in the lobby. I told everyone I was fine but was seriously not. My sister-in-law gave me a ride home and my vision started to white out. I thought I was dehydrated and tired with indigestion. I drank a lot of water and collapsed on the bed. Slept the whole day, got up really dizzy with chest pain and cold sweats but still clueless. Slept the whole night and didn't feel any better in the morning. Got an appointment with my GP for late in the afternoon. I thought my thyroid meds were off. My GP heard a murmur, totally new! and did an ekg and rushed me to the emergency room. In the 5 following days in the hospital they did an angiogram that showed my arteries to be totally clean and my blood pressure crazy low 75/60 The sonogram of my heart showed I had Tako subo cardiomyopathy along with the hypertrophic cardiomyopathy. They told me I was incredibly lucky to be alive. My heart was only functioning at 30% capacity. I have a wonderful cardiologist here in Colorado who admits this is out of his realm. He recommended several top facilities that were all far removed. I asked about Boston since my son lives there and the doc found Tufts that seems to be highly reputable. The doc has a colleague there and sent him all my test results and the two of them have planned a regimen. They put me on beta blockers for now and I improved enough to at least go home. They will monitor me and said surgery may still be necessary.
    Grappling with all this new info is beyond overwhelming. I am grateful to this group for its existence! Trying hard to not get lost in depression! Many thanks to you all for being here!

    Leave a comment:


  • Greg #504
    replied
    Thank you for the warm welcome, Jill.

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  • JillC
    replied
    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.

    Leave a comment:


  • Greg #504
    replied
    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

    Leave a comment:


  • JillC
    replied
    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.

    Leave a comment:


  • Riceman
    replied
    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

    Leave a comment:


  • JillC
    replied
    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.

    Leave a comment:


  • Roscoe
    replied
    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.


    Leave a comment:


  • JillC
    replied
    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.

    Leave a comment:


  • rrmdbeard
    replied
    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?

    Leave a comment:


  • JillC
    replied
    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.

    Leave a comment:


  • rrmdbeard
    replied
    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??

    Leave a comment:

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