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How has HCM changed your lifestyle/occupation?

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ljmosski I have been married to my husband for over 17 years. We have four beautifully handsome boys. I was diagnosed with HCM in 2007, then HOCM in 2009.
ljmosski
Junior Contributor
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    Wyoguy
    Shy Heart

  • Wyoguy
    replied
    Re: How has HCM changed your lifestyle/occupation?

    Although I don't have all the "facts" yet on my situation, reading these histories has given me more insight with my situation. I have had a murmur as long as I have taken physicals. I have played basketball since I could walk, right up into my 60's. I have been very active in other sports as well, in High School and since then. I was always known as the "healthiest" among my group of friends. I was diagnosed when I was 40, 25 years ago. I did not have symptoms, so finally my cardiologist (non-expert) allowed me to go back to full participation in sports. Now, 25 years later, I can still do most of the things I want to, but am beginning to recognize things that are symptoms that I did not recognize, or ignored. I might be lightheaded when exerting myself. I would have days that I had to "push" myself to get anything done. Occasionally I would have SOB for no reason. I became the person that only wanted to unwind in front of the TV after work. I take naps. I now mentally have "grey" days. The message that said they had to work up gradually to the exercise fits me as well. This forum has helped me recognize my symptoms. The last 2 1/2 months have been a roller coaster ride for me. A new cardiologist (some experience with HCM) ordered a different kind of stress echo than I had previously had. I went from having the "best" kind of HCM to one of the not-so-good ones. I got my ICD four weeks ago. Then the path through research and finally acceptance. I also have severe sleep apnea, diagnosed five years ago, which I am hoping is a cause of my HCM rather than heredity. Even though my research indicates that some people think it is "all" genetic, I am hoping for the sake of my kids that they are wrong. None of my kids have HCM at this point, and they have been tested. Nobody, to my knowledge, on either side of my family has this. I also have come to realize that I am fortunate to have coasted through most of my life without any problems. I have slowed down (I thought it was my age) in the last few years. I have given up some of my farm ground. Other than walking, I have had to mostly sit on my behind because I can't lift more than 10 pounds for six weeks after the ICD implant. Now I know I am out of shape! I am headed to Mayo's next week to see Dr Ommen. That will hopefully answer more of my questions. As for quitting activities, yes, the demanding ones I have. I have replaced them with others that are less strenuous. My daughter has led my wife and myself into Kayaking......no, not on white rivers....lakes and slow rivers. You can work as hard as you want, or just putt along. I walk a lot (always did), and have taken up RC airplanes. These things and the farm still keep me active, and I hope that will not change. I totally enjoy my new activities and still feel that I am being productive. This website has been a great help and comfort to me, so, I am thankful to you all. Best of luck to you,

    Leave a comment:

  • Hugh W
    Junior Contributor

  • Hugh W
    replied
    Re: How has HCM changed your lifestyle/occupation?

    Alex I don't know what to say as I played a ton of sports when I was your age and know how much of a passion that can be. There are activities that we can continue to do just not ones that require quick bursts. Getting in with a good medical team that knows HCM will be a source of advice on what you can do and should not. It does take time to make the mental adjustments and find new activities that can keep you busy, interested and perhaps competative in a different venue. When I was told no more back country hiking my doctor did suggest swimming, no more road biking she suggested stationary endurance. I train dogs for retriever tests so I get lots of walking in and the dogs are the competition side. There are alternatives and hopefully you can find something that peaks your interest. All the best.

    Leave a comment:

  • Alex Pate
    Pinkie

  • Alex Pate
    replied
    Re: How has HCM changed your lifestyle/occupation?

    I was diagnosed May 26, 2009 at the end of my sophomore year in high school. It all started with a routine physical at school doctor said he heard a murmur. I have never had any symptoms. Before the doctor told me I couldn't play sports every again I was very athletic and enjoyed playing basketball (My hopes to make it to the NBA were shattered.. Lol) I also played baseball and tennis. After finding out it was very depressing and it still is.. although I couldn't play sports at school I would go play at the local rec center.. against my parents wishes. I also picked up playing coed slow pitch softball (against my parents wishes) I have since quit playing full court basketball games and playing softball. I still occasionally play half court pick up basketball games. Job wise.. I quit a job as a meter reader because I couldn't see walking 18 miles a day in any weather being very smart (snow was my concern). I recently found out my uncle (dads side) has HCM and he had to get a defib put inside his chest. I day dream about being able to play sports every single day and it really sucks I can't.. especially having a twin sister and older sister (who played sports all the way through college) not having any problems. Anyways sorry if I went off topic for this forum I'm new here. Hope you all have a great day and God Bless.

    Leave a comment:

  • Chuck
    Ventricle

  • Chuck
    replied
    Re: How has HCM changed your lifestyle/occupation?

    My symptoms are mild enough to go un-noticed....but my career completely evaporated in an instant with the HCM diagnosis. How long does it take to get over that? Well, its been 25 years, and I still haven't.
    Oh, I found another career, eventually. It pays the rent. But my life completely sucks compared to what it would have been, otherwise.

    OTOH--compared to most of the other humans--I have a roof over my head and a full belly. got nothing to complain about.
    perspective!

    Leave a comment:

  • rowland2010
    Atria

  • rowland2010
    replied
    Re: How has HCM changed your lifestyle/occupation?

    Mary
    I was very interested reading how HCM has affected you i'm glad you still have a great sense of perspective,you sound like your trying to live your life to the full,i was diagnosed in my mid forties and have always done manual labor jobs and driving ,now at 51 and having come thru a Myectomy life is difficult what with bouts of breathlessness and the usual HCM symptoms, as you get older it gets harder to change and i guess with the job situation in the US as difficult as Europe its even harder to change careers, i have found a lot of companys unwilling to give older people with health problems a chance and with the witch hunt against people on benefits raging in the UK i have gone back to manual labor against the advice of my Cardiologist,still its good to be paying my way and some days are better than others healthwise.

    Leave a comment:

  • Toogoofy317
    Member of 1000 Post Club!

  • Toogoofy317
    replied
    Re: How has HCM changed your lifestyle/occupation?

    Well,
    I was diagnosed with HCM at 21! Chest pains and fatigue were my first symptoms I was accused of taking cocaine that day in the ER but when they did the CT angiogram well the blaming stopped! My now ex-primary couldn't believe a 21 year-old woman could possibly have a heart problem which is why he became my ex. I've gone through many changes in my life I did lose the beginnings of a career that I thought I was born to do be an EMT.I saw a few locals that didn't know how to deal with my disease and one quack that wanted me as a guinea pig (wanted to do ASA on a nonobstructed person) when I declined I was told it was all in my head. That day I phoned the HCMA and Lisa Salberg saved my life! I ended up seeing Dr. M.Maron about a year into my diagnosis and I went from "it's all in your head" to "you have 4 of 6 risk factors for SCD). At this point I got my first AICD at 22 I went back on the Rig 3 days later! I was evaluated for a transplant in 2006 but my local center (another thread entirely) said it was all in my head too. Why won't doctors listen to other doctors!?!?!
    I listened for a few years when all of my locals said I couldn't do anything physical and it drove me bonkers (think I could be ADHD) my weight escalated and life got really bad. In 2007 I got my disability and with some of my back pay I got myself a motorcycle! My local guys almost went mental but Marty was happy for me and said as long as I act like an adult it should be fine! This got me back to living I start walking just a couple of minutes a day and lost around 45lbs my heart and body thanked me for that! I still had a lot of medical issues and more than a few stints in ICU but I kept pushing.
    In 2010 I felt pretty good and went to vocational rehab to see if there was a job I could do. Thankfully, they showed interest in me and sent me back to school (they paid). May 1013 I did something I never thought I would do I graduated with my B.S in Psychology! If there is one piece of advice I can give in this life is to keep pursuing and never give up. Can't or quit are simply not words in my vocabulary as I have gotten older I do listen to shouldn't a little more but I still go out and live my life!
    Yeah, I went and played B-ball for 30 min on Monday and couldn't crawl out of bed on Tuesday (insert lecture from Lisa here) but I had so much fun it was worth it!

    Mary

    Leave a comment:

  • Peggy Malott
    Junior Contributor

  • Peggy Malott
    replied
    Re: How has HCM changed your lifestyle/occupation?

    Dear Nor35, You've survived the "polar Vortex" along with the rest of us, and that's something! For me, the last few years I was dealing with the HCM, climbing stairs or hills was unbearable, and I was extremely short of breath. I wondered if this was as good as it would get for me. I'm a nurse, and I do home visits for babies and their families; I feared collapsing on someone's stairs, carrying those baby scales with me. Unfortunately I didn't have a cardiologist who was on top of things. I'm very grateful that my son found this website, and I called Cleveland Clinic, and was surprised at how I could do this myself, and didn't need another doctor paving the way. I gathered as much info on my local tests, and sent them to CCF. It wasn't until I met Dr. Lever, that I heard the term "obstructed", that was a year ago, and I had the myectomy in Mar. '13. 6 gm of septum removed by Dr.Smedira. Recovery was tough for me, and I developed atrial fib. post op. I don't remember exactly when the turning point post op came for me, but I was miraculously (at least that's how I'd describe it), able to walk, and generally do things that I couldn't do for years. Going to cardiac rehab helped a lot. Post op, I lost some weight (I needed to), unfortunately I've gained some back, and have to work to lose it. I'm on Toprol 100 mg twice a day. Keep us informed.

    Leave a comment:

  • Beejay
    Contributor

  • Beejay
    replied
    Re: How has HCM changed your lifestyle/occupation?

    Hey Nor35, you're my neighbor! I live in Mundelein. Are you going to Northwestern? I see Dr Choudhury there. You're the 1st person I've seen on here from the area, would love to hear from you.


    Beejay

    Leave a comment:

  • JillC
    Member of 1000 Post Club!

  • JillC
    replied
    Re: How has HCM changed your lifestyle/occupation?

    Glad everything went well! ......I dunno about the snowblower though......keep letting the girls do it even though you do have an ICD!

    Leave a comment:

  • NOR35
    Contributor-in-Training

  • NOR35
    replied
    Re: How has HCM changed your lifestyle/occupation?

    Hi JillC,

    The cardiologist who read the stress test did advise me to take it easy and I did. We had almost a foot of snow and my daughters quickly learned how to use the snowblower. LOL.

    I had the ICD implanted on the 7th as scheduled. Everything went well except they noticed some swelling around one of the leads so I was given a steroid to take for 3 days. I go back to the device clinic tomorrow for a check up.

    Leave a comment:

  • JillC
    Member of 1000 Post Club!

  • JillC
    replied
    Re: How has HCM changed your lifestyle/occupation?

    Nor35 - This would not be the time to push your activity......wait until you get your ICD. If you went into v-tach during the stress test, then physical stress is a trigger for you. Did they send you home with a defib vest until you get your ICD? Please take it easy, surprised they let you go home after the v-tach unless you have a defib vest.....call 911 at any sign of faintness.
    JillC
    Member of 1000 Post Club!
    Last edited by JillC; 01-04-2014, 11:25 PM.

    Leave a comment:

  • NOR35
    Contributor-in-Training

  • NOR35
    replied
    Re: How has HCM changed your lifestyle/occupation?

    I was diagnosed with HCM in 2007 after my PCP noticed a murmur, sent me to a cardiologist, who sent me for an MRI. Around 2007 I often began becoming lightheaded depending on certain lighting conditions. I now believe the lightheadedness was always caused by HCM although holter monitors and EKGs never detected any arrhythmias. However, I have passed out three times since March 2012, the most recent time this past November 21st. Based on having HCM and passing out I am scheduled for an ICD next Tuesday, January 7th. Today, while taking an echo stress I had an episode of ventricular tachycardia and the stress test was cut short.

    My primary exercise is walking which I enjoy. I now fear walking more than 1/2 mile without the ICD and look forward to having it. But I have no problems doing ordinary household tasks. I do get occasional moderate heart pain. I was laid off from my job in May 2012 but this had nothing to do with HCM. I have other health conditions so I don't know if I could work more than part time due to all of the doctoring involved.

    Leave a comment:

  • Cynaburst
    Senior Member

  • Cynaburst
    replied
    Re: How has HCM changed your lifestyle/occupation?

    I am also a Los Angeles resident and a patient of Dr. Steve Ommen at Mayo and Robert Siegel here in L.A. I had a myectomy at Mayo about 7.5 years ago. At the time, I was around 40 and felt like I was 80 on some days. I couldn't do stairs, hills, and sometimes walking across the house carrying my 3 year old was enough to do me in.

    I resisted surgery for some time, but finally I had enough and flew to Mayo for an evaluation knowing that surgery was the likely end point. I can't tell you the difference it made for me. I am like a different person. I don't know how often you see Dr. Siegel but you should ask him what I am like now vs. what I was like in 2002 or 2003. He has been treating me for going on 12 years now, and I can tell you that the difference is staggering. Just before the holidays I wrote Dr. Siegel a note because meeting with another HCM patient new to L.A. made me remember how different things are for me now and I wanted him to know how thankful I am to him and the other docs for the way I feel now. What a difference!

    I am also happy to share my experiences with you and your husband directly. Feel free to email me at [email protected] and we can set up a time to talk.

    Happy Holidays and best of luck to you as you make this difficult decision.

    Cynthia

    Leave a comment:

  • JillC
    Member of 1000 Post Club!

  • JillC
    replied
    Re: How has HCM changed your lifestyle/occupation?

    In 2005 when I was first diagnosed...I was just glad to find out what was wrong as I had symptoms for years that felt like I was having a heart attack...but nothing ever showed on EKG or nuc med tests. I am very strong, don't give in to my symptoms much (I'm a nurse with a German heritage LOL). back then, I was on very little medication to control my symptoms, and had no limits on my activity. Gradually over the last 8 years, it took more medication to control my symptoms...I got tired much more easily, could walk on flat surfaces as long as I didn't try to talk also. I maxed out on meds and had a myectomy this year. I was hoping for the wow factor...I am so much better!.....In some ways I am and in many ways I am not. However, I do want to point out, what many have said on this site #1 Each case of HCM/HOCM is so different #2 Go to a center of excellence for your opinions. My myectomy was not done at a COE. And though I truly feel my surgeon did a good job...he knew all the right stuff to look for besides the obvious septal buldge....It still at this point leaves a question in my mind Did I get all the relief I could've from the surgery? Go to Mayo, get your opinion, you'll know in your heart what to do. Any open heart surgery is hard on the system, but the success rate with myectomy, done at a center of excellence is very high. Best of Luck in your decision!

    Leave a comment:


  • Ad
    replied
    Re: How has HCM changed your lifestyle/occupation?

    It changes your life. In my case, not in any apparent dramatic way (loose job, disability, relationship issues or whatever) but in many more subtle ways. Like others note, you start to adjust (downwards), you count your good days and shrug off your bad days. My wife calls bad days "empty battery" and that's just how it feels. Surprisingly enough, even bad and long episodes of AFIB didn't throw me off course. It's only now, nine months past myectomy, that I "appreciate" going to the gym. Adjusting upwards will take learning, time and experience.

    Leave a comment:

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