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

Announcement

Collapse
No announcement yet.

How has HCM changed your lifestyle/occupation?

Collapse

About the Author

Collapse

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. Find out more about ljmosski
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • How has HCM changed your lifestyle/occupation?

    I'm curious to see how having HCM has affected how you live your life, either with or without having had a myectomy/ablation. Have you had to limit your activities such as family outings, what you do on outings, what you participate in? Have you decreased your involvement in things you would have normally done before? Have you had issues with your occupation? If so, how did you handle them? For those who are post-myectomy, have you had any further issues? Do you still continue to have good days/bad days? Have you had to change your occupation?

    I know I'm asking a lot of questions. I live in an area that is not well versed in HCM. I would really like to know whether what is going on with me is normal for HCM or if it's something else. I have had several discussions with my family doctor and my cardiologist. Now I'd like to hear from people who know it firsthand.

    Thank you for your time.
    .....~Lisa J~......
    Married to Michael since 1995
    Four boys..18, 14, 5, & 3
    (Youngest is gene positive)
    Diagnosed in 2003 with HCM
    Obstructive HCM in 2009
    Septal myectomy Jan 24, 2012

  • #2
    Re: How has HCM changed your lifestyle/occupation?

    Interesting question - I think the answers may be enlightening. From my perspective HCM is very unique to each of us, which is why medication, exercise, symptoms vary so much its hard to say if there is any uniformity in it, but it may show us how we've all adapted to it.
    I'll work backwards in your questions - No same occupation, but its very stressful and I can see it changing in the future, perhaps to a more passive role rather than active. Yes, good day and bad days, but I can see the pattern - If I'm off my med schedule, have an 14hr stressful work day, do too many chores on the weekend, I pay for it. Its hard to adapt (and its been a few years)!
    I think I'm 85% better post myectomy, but some days its 100% and others (rare) it feels like 50%. How do I handle issues at work? I drink. Just kidding. I've mentally tried to not invest so much personal effort in the outcome of situations. I plan ahead, I do what I can, and I try not to overextend myself (I'm a giver, what can I say?!). I know I limit my activities more that pre-op. not much, but I now think "can I do that? Will I pay for it tomorrow?" the adjustments are subtle (limit coffee, drinking, epicurian delights), but nothing overt or major. I have to say - for the most part, I don't think I have HCM, until I visit this board. Its a good reminder that I'm blessed and lucky. Anything I can do for others to make their lives better, I'm all for it.
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

    Comment


    • #3
      Re: How has HCM changed your lifestyle/occupation?

      I am 35 years old and have an 8 year old son. I was diagnosed this past March, starting having chest pain in Nov of 2012. My mom had HCM and had went thru 3 open heart surgeries and two bouts of endocarditis and my dad a heart attack in his 40's so I went to doctor pretty quick with the chest pain. My only symptoms are High blood pressure, tachycardia, a lot of chest pain and dizziness quite often with position changes. Also most days I just feel like not getting off the couch. My HCM specialist is in the middle of trying to find the right medication to control the tachycardia and high blood pressure. My job has not been affected because I am a part time home health nurse and have a lot of flexibility with my job. I only have so many patients I have to see in a week so if I am feeling bad that day I can just reschedule them the next day. At home it is a different story. I feel like my son is the one that suffers the most. I don't feel like taking him to the park anymore or to clean the house as thorough as I use to, stuff like that. I know if I do I will be a permanent fixture on the couch the next day with absolutely no energy. I am a single mom so I don't have a husband around to help out. I feel like getting my job done for the day and supper on the table is about all I can handle most of the time.

      Comment


      • #4
        Re: How has HCM changed your lifestyle/occupation?

        I am 58 and was diagnosed this last April and it has affected my lifestyle a lot. I am symptomatic and have turned into a recluse. I work fulltime as a nurse at a very busy outpatient surgery center, it is exhausting and all I can do is work, walk my 2 dogs when I get home and I am in bed by 8pm, by Friday night I cant hardly function, I don't go out when people go out after work, I have such dizziness I cant drive long distances to see my older grandkids and I just had a new granddaughter that lives an hour away and I need to get better to get back on the highway to see my grandbabies. I did not do anything all summer, no swimming, no festivals, shut everyone off. It is kinda hard to enjoy a night out or activities when you have constant chest pain, SOB, palpitations and dizziness, so I just go home. I do exercise on the weekends and keep up my house chores and outside yard work, as I am by myself, I do it in shifts, mow the front yard on day and the back yard the next, I have learned sorta how to manage life. I do want more than to just manage like I am, I am a totally different person than I was before this happened. I will be having some tests at Mayo this coming Monday and then seeing Dr. Ommen, so I am hoping to get some answers and get put on some different meds. I am trying to stay positive and live life the best I can for now, but I don't like the person I have become.

        Comment


        • #5
          Re: How has HCM changed your lifestyle/occupation?

          Thank you for your responses! I thought it might help all of us to see how other people have dealt with having HCM and maybe feel as if they aren't alone. Yes Marc, you are right that HCM is different for everyone which is why sometimes we may feel that no one understands us or can relate to how we feel or what we are going through. I'm hoping to have more people respond so we can get different stories to relate to. I figured with 191 views there may have been more responses! Please feel free to leave your comments for those who are lurking!

          Marc-when you say that you "pay for it" if you overdo, can you be more specific? I'm very happy to see that you feel like you don't have HCM unless you come on here. I hope to feel that way someday too.

          Tisha-do you find that being a home health nurse has helped you to continue working in that occupation, given that it is flexible and you are symptomatic? I hope your specialist is able to find a medication that will work for you. Feeling the way you do is not easy when you have to be everything to your child.

          Movielover-I am so sorry you have ended up where you are now. I think most of us can relate to that. I hope your testing and visit go well and they can provide you with answers and alleviate some of what you are feeling now. It's just not living when you can't see the people you love.

          Please keep the responses coming in even if yours is or isn't different from anyone else's! That's what I'm hoping to achieve!
          .....~Lisa J~......
          Married to Michael since 1995
          Four boys..18, 14, 5, & 3
          (Youngest is gene positive)
          Diagnosed in 2003 with HCM
          Obstructive HCM in 2009
          Septal myectomy Jan 24, 2012

          Comment


          • #6
            Re: How has HCM changed your lifestyle/occupation?

            Movielover - Dr. O is great and its not uncommon to fiddle with the meds to find the right "cocktail" to make you feel better. Hoping this is the case. Let us know!
            When I overdo - I am just incredible weak. The "stay in your jammies till 3 pm" kind of weak. I also think my ADD acts up and I get a bit forgetful and disorientated. So between the two, I can be a zombie. I usually regain normalcy late in the day, but by then I'm behind schedule.
            Marc
            Diagnosed @ 48
            Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
            Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
            AICD - Valentines Day '08, Spark Plug replaced 11/14
            After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
            Quietly going insane . . .

            Comment


            • #7
              Re: How has HCM changed your lifestyle/occupation?

              Because of HCM, lost my job and my ability to do the exercising lifestyle I always enjoyed.
              Asymptomatic, plugged into an ICD, never gone off, started exercising hard again, found a new career.
              I have 4 kids ranging 9 to 14. None have been diagnosed with HCM but again I was not diagnosed until age 40.

              Comment


              • #8
                Re: How has HCM changed your lifestyle/occupation?

                To be honest, it really hasn't changed my life at all- except I am much more aware for my children. I was diagnosed five years ago (I think). I have no real symptoms to speak of (sometimes going up hills when walking is difficult, as is running up stairs, that's pretty much it). I haven't had severe symptoms like others have. I do have an ICD due to family history and it has saved my life when I had v-fib a year after I got the ICD. I have not had any v-fib since, but have had runs of v-tach. I still work out on average, six days a week. Am active with my family, work full time as a special education teacher (though I am not allowed to do restraints on students anymore. That's not a huge deal only because I did not like restraining kids before my diagnosis). Really, my life is exactly the same as it was prior to diagnosis. My exercising has changed a bit so it's not quite as intense and I don't run- I do jog though and do lots of aerobics.

                What has changed is the awareness for my children. I was always aware prior to my diagnosis that my kids could possibly get HCM one day because of my mom's HCM and my grandpa's HCM. After my diagnosis, we had both boys gene tested and both tested positive for the HCM gene in our family. It was more devastating than being diagnosed with HCM myself. Now I realize that knowing my boys' gene status is such a blessing. They are closely monitored, we are encouraging them both towards more safe HCM activities so they don't fall in love with a competitive sport only to have to quit it one day when they are diagnosed. My oldest (age 11) has no diagnosis, but his septal measurement is on the high end of normal, but has remained that measurement for a couple of years now. He has a cardiac care plan at school just to be safe. We would not be doing these things had we not known their gene status. So, I guess HCM has changed my life in that I am more proactive with my children's health because I know about my HCM, and their gene status.

                Life is good. HCM doesn't prevent me from doing much of anything at all. My mom had HCM as I was growing up- she had a myectomy when I was in 5th grade and nine years ago she had a heart transplant due to her HCM. My path, so far, has been completely different than hers. That's what makes HCM so very tricky- everyone's case is different.

                Comment


                • #9
                  Re: How has HCM changed your lifestyle/occupation?

                  Interesting topic and great information on reading impacts that are quite different for individuals.

                  I am one year into being diagnosed with HOCM on what my cardiologist describes as a mild to moderate level. The findings on my 61st birthday as well as the side effects from the drug therapy set me back mentally for a few months and I debated retiring early. I have a high pace – high pressure job that I love and made a decision to go through one change at a time so I am still working. At this time I believe it will take at least another year to settle all the medical issues down to a point that I can make an informed decision on lifestyle choices for retirement.
                  The latest change in condition occurred in September with going into continuous afib and I am now on Xarelto and have adjusted to the skin itch / morning nosebleeds.

                  In terms of activities I was quite active in non-group activities with solo cross country hiking, snow shoeing, hunting remote areas. I also was known for pushing my way through difficult physical activities. I have had to make adjustments and continue to make more in all areas. Some things I just do slower and others I have had to stop. I used to run up 4 to 7 flights of stairs now at times walking 2 flights I have to stop to catch my breath. I know when I have a physically strenuous day that I will be beat for the next day or two. I also find that I nap more than I used to. Also now with the afib I think adjusting to living with this will be on-going challenge.

                  Both our son and daughter have been tested through echo / MRI and do not show signs of HCM at this time. However my son does notice a soreness in his chest which was one of my long term symptoms.

                  In speaking with my cardiologist at the last visit she commented on the information level that I had and that few people coming into her with HCM had this level of research. This site as well as speaking with Lisa is a huge resource of information which has helped considerably.

                  All the best to all for great Christmas season and happy New Year.
                  Last edited by Hugh W; 02-15-2014, 11:11 AM. Reason: typo
                  Hugh

                  Comment


                  • #10
                    Re: How has HCM changed your lifestyle/occupation?

                    It's amazing when you are sometimes searching for answers...someone puts the right question out there that really impacts you! My husband has been dealing with hcom for quite some time now. Didn't always know it as this, think they called it "ash" a long time ago. Currently he has undergone a few ablations with Dr. Natale at Scripps in San Diego, met Dr. Ommens and had a consult at the Mayo/Rochester facility and follows up with Dr. Siegal in LA and local cardiologists too. Our daughter has been "cleared" so far, and we take our 14 yr old son in for annual check ups...so far so good. He has tried every medication. He has had cardioversions. He has become prone to chf. And on top of it all he has learned he has apnea. A month ago he retired, at 57. The comments in every link posted could be comments from my husband. He has always been such an incredibly active person, always pushing our family out the door for adventures and now he is beat. We are on the cusp of committing to head to Mayo for the Myectomy. I think what is keeping us on the verge is wondering how life will be different after? It's not great now, but its such a big surgery and you can't help but wonder how your life will be after. Do individuals after a myectomy feel 'healed?" Do they come home after recovery stating- "man I'm so glad I did that! I feel so much better!" Does your life improve whereby you can get back to activities like walking and biking and feel refreshed vs thinking how am I going to make it back home? Any one of you, or your family members know just how emotionally and spiritually draining life can be when either you or a loved one is dealing with hcm/hocm. It really impacts a life and a family. I wonder how life is impacted after having a myectomy. Someone stated that they feel 85%, some days 50% some days 100%. So I wonder, do you feel that undergoing the myectomy was worth it? Do you have regained energy, or clearer thinking or drive to break out of the "reclusive type" habits to re-join life? I read thru these threads from time to time and I see the pattern of hcm'rs comments of energy depletion, similar procedures/surgeries, medications, worries and concerns for their families regarding hereditary...however the most common pattern I see is how Strong, Determined and Brave you all are. There are days after my husband has been up all night and cannot sleep where he would shower, do everything to dress and drive to work. I would just be baffled. Or the day after getting out of the hospital returning to work to head up a meeting. Or taking our son to a football game, parking and walking and climbing up steps dizzy and out of breath just to give our son the experience of watching a college game together. My husband is my hero. All of you are so strong.

                    Comment


                    • #11
                      Re: How has HCM changed your lifestyle/occupation?

                      Thank you for your kind words. As another Angelino, you know how hard it is to get good HCM care in LA is and it looks like you've been the same route as I and others. As to myectomy, its no picnic. BUT, I'd do it in a heart beat again. The surgery is soon forgotten. The first week or two at home you question yourself "WHY DID I DO THIS?!?!". As the days & weeks go on in recovery, you and your hubby will see a huge improvements (generally). There are no guarantees in anything, but if you are obstructed, and can benefit by removing it, delaying it only puts more stress on the heart. You'll see many here post their reactions to surgery - I'd take a gander its way more positive than negative.
                      Your always welcome to PM with any questions too.
                      Marc
                      Diagnosed @ 48
                      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                      AICD - Valentines Day '08, Spark Plug replaced 11/14
                      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                      Quietly going insane . . .

                      Comment


                      • #12
                        Re: How has HCM changed your lifestyle/occupation?

                        I was dx'd with HCM with latent provocable obstruction in 2005. EKG's are always clean so it was difficult to diagnose. I am at no greater risk of sudden death than any other mid-50's guy and my only risk is that of discomfort (SOB and massive jaw pain) and disability. Meds such as Disopyramide and Atenolol have kept life and comfort near normal until the last few months.

                        Five years ago I would have dreaded the idea of waking up with broken ribs and tubes sticking out of me in all places. Now I am wishing for it and in fact in two weeks from this very moment I should be waking up from my Myectomy at Cleveland.

                        Today I had to board a cargo vessel at our local seaport and the four flights of stairs were slow and uncomfortable but did not hurt, so I am having a good HCM day. Most days, two flights of stairs would leave me gasping and in pain. Never mind trying to carry a package up stairs. I have to time my meds and meals just right in order to exert myself even moderately, so it is starting to interfere with work. But I am lucky that I work for a non-profit ministry and folks are sympathetic and supportive. In fact they are over-protective to the point that if co-workers see me lift something they freak out and think that I am going to keel over.

                        So yeah, I will deal with short term discomfort and disability and trade it for getting some of my life back, I hope. But I feel fortunate that my flavor of HCM is operable.
                        Last edited by angusjcampbell; 12-26-2013, 04:41 PM.
                        Angus Campbell
                        Golden Isles Region, Southeast Georgia, USA

                        Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
                        Myectomy Jan 9th 2014 at Cleveland Clinic
                        Drs Lever and Smedira

                        Comment


                        • #13
                          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.
                          \"Hope is disappointment postponed\"

                          Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                          Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                          Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                          Meds (current) sotalol, dabigatran, furosemide.

                          Comment


                          • #14
                            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!
                            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


                            • #15
                              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
                              Daughter of Father with HCM
                              Diagnosed with HCM 1999.
                              Full term pregnancy - Son born 11/01
                              ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                              Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                              Comment

                              Working...
                              X