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.

New diagnosis difficult to accept/adapt

Collapse

About the Author

Collapse

neverhart Diagnosed with HOCM: 2006. Septal Myectomy: 2/2008 Find out more about neverhart
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Re: New diagnosis difficult to accept/adapt

    You're exactly right. I just was diagnosed about three weeks and I haven't done an ounce of physical activity. I had to wear a holter monitor to rule out any arrymthia's. Thankfully nothing showed up so I will be able to resume physical activity. I know that I will not be able to run any 6 minute miles like I did back in the day, but I have a new sense of opportunity of getting in the best shape of my life. My goal for over the last few years was always gaining muscle mass, which I did. Now I will getting with a personal trainer to discuss my condition and to get a workout that will get me back in shape. It's a daily process.

    Benjamin
    Benjamin
    www.icando.spreadshirt.com

    Comment


    • #17
      Re: New diagnosis difficult to accept/adapt

      Originally posted by Benjamin View Post
      You're exactly right. I just was diagnosed about three weeks and I haven't done an ounce of physical activity. I had to wear a holter monitor to rule out any arrymthia's. Thankfully nothing showed up so I will be able to resume physical activity. I know that I will not be able to run any 6 minute miles like I did back in the day, but I have a new sense of opportunity of getting in the best shape of my life. My goal for over the last few years was always gaining muscle mass, which I did. Now I will getting with a personal trainer to discuss my condition and to get a workout that will get me back in shape. It's a daily process.

      Benjamin
      I'm from a place where HCM is totally new and not considered as something that can cause fatality unless you're pushing a car to the top of a hill or such.

      But then, once you get HCM, you yourself know that you can't push your body over the limit or things might go bad for you. However, as HCM is not of a main concern here, people wonder how come you are not exercising to your so-called potential limits. It's tough explaining to them. Even when I met with a workout trainer from a famous gym here, they can't figure out the seriousness of this thing we call HCM. It's really frustrating!

      So, Ben, if you and your trainer have a workout that could be useful to us all in maintaining not only our body shape but our health as well, please do share... It would very much be appreciated.

      Thank you...
      Last edited by kiddster; 11-09-2007, 01:39 PM.
      _______________________________________________

      In The Land of the Blind, The one-Eyed Man is the King

      Azhari aka Kiddster
      From Malaysia
      Diagnosed with HCM in 2006

      Comment


      • #18
        Re: New diagnosis difficult to accept/adapt

        Nathan,

        Actually there is a full range of issues and urgency to relieving the obstructive gradient for each individual patient. I think you will see that some do take on the world after myectomy. That said , there is necessity to take it on ever so slowly and gradually after surgery. The heart takes time to heal and will do its own unique spin on remodeling after surgery. You do not want to rush this process or influence it. ( especially as these areas are so uncharted). The triggers for progression of the disease are not all known. If the myectomy is in your future , use care after. This disease is not the same or anything like coronary vascular disease in which, post-operatively, progressive, AGGRESSIVE, cardiovascular rehab is most beneficial.

        HCM is a cellular based disease and can be influenced by many various factors( mostly not known) and we all need to be respectful of the full gammet of variations and alterations that can occur in this challenging disease as we look to living the best life we can.

        Pam
        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

        Comment


        • #19
          Some thanks and some history...

          These posts have been very helpful. Thanks so much. It is incredibly helpful to know that I am not alone. Even as unique as I think I am, I now see that I am not! And it is helpful.

          I have quite literally enjoyed extreme sport involvement for most of my life. I played four sports in High School and went on to play Division II College football (Linebacker). I wrestled competitively, and sought any intense competitive outlet I could find during college and after... ultimate frisbee, flag football, bicycle racing, basketball, etc. I continued to run distances and practice with High School football teams. I lifted weights. I cross country skied, Downhill skied, snow-shoed, rock climbed, mountaineered, kayaked, white water rafted, bicycled 50 miles a day routinely .... you name it, I was doing it and enjoying it. I love it. I love to sweat and push my body to it's limits. I love coordinating my efforts with others as part of a team and doing so competitively. It has evolved as a significant part of my life. My wife and kids are similar. Over the past several years I have noticed increasing chest pressure and shortness of breath. I just thought I had to work harder because I was getting out of shape or older. Lo and behold, I was getting worse with HCM!!!

          Now, this stuff that I love so much and is such a big part of my life has been yanked away. I am doing a lot better emotionally with this. However, there are many times that I yearn to do the things that I enjoy so much. My body no longer experiences the exhileration that it used to. It won't ever hoist an 80 pound back-pack up a 14,000 foot mountain? Will it ever get to compete in basketball, frisbee, touch football, or skiing again?

          I guess one hope I have for a post-myectomy situation would be that I would be allowed to eventually engage in low impact sporting activities and take my pulse up to140 or 150. I am trying to be content (with success) in waiting to see what develops and let this body of knowledge and research play itself out a little bit to see what is really a good idea post-myectomy as far as level of activity is concerned. I too have been seeing a therapist and it has been a help.

          Thanks again.... this input is encouraging and helpful

          Nathan

          Comment


          • #20
            Re: Some thanks and some history...

            Maybe if we get enough of us together we can form some kind of team - Even get jersey's or tee's made up (medtronic's sponor?). We can meet at the next HCMA National meeting. The obvious name could be Heartbreakers, but I'm sure there's other good names out there!
            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


            • #21
              Fun Idea

              Sounds like a fun idea. I know the Annual Meeting is May 30 - June 1, but do we know where it is yet?

              Comment


              • #22
                Re: New diagnosis difficult to accept/adapt

                The annual meeting is in Morristown, New Jersey every year which is about 45 minutes outside of New York City and an easy drive from the Newark airport.
                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


                • #23
                  Re: New diagnosis difficult to accept/adapt

                  Hi Nathan:

                  I enjoyed playing competitives sports (soccer and hockey) until HCM started to affect my health. I had my myectomy on May 16, 2007 and since then my life has changed. I now curl and golf with no symptoms to date. Some of my golf buddies ask if I have two hearts.

                  Nathan, life is too short and with your skill and desire there are other avenues that you could assist others to reach their potential and that is by coaching. Nathan, what I learned during my recovery is that we should take one day at a time and enjoy that day and the friends and family around us.

                  Norman

                  Comment


                  • #24
                    Re: New diagnosis difficult to accept/adapt

                    This post is actually scaring me. I'm new to the sight (and the disease for that matter). I was diagnosed in the spring with HCM after some fluttering. I wish I would have never went to the ER. Like a lot of others, my life is centered around activity, It's Who I Am. I was training for an Ironman when I found out and had to stop training intensively, but I continue to ride my road bike and my mountain bike. My heart rate still gets above 170 on the mountain bike when I have to climb a hill. Should I be concerned?
                    I don't fell like I'm getting any straight answers from my physicians. I went to Minneapolis to see an HCM specialist and he really just confirmed the diagnosis. An ICD is an option, but they keep telling me it's up to me. Do I need one? Are the risks of having one implanted worth it? I trust all the doctors I've seen and I think they have my best interest in mind. I just think they are in a position in today's society that they have to cover their butts so much that they have to limit their advice.
                    I still plan on completeing an Ironman, yet at a different pace than I once dreamed about. I can't imagine giving this part of my life up. The people that I've met through training have become my best friends (and they're positive people to be around emotionally and spiritually). It's 65 degrees out today in Omaha. What would I do if I didn't go ride?
                    BUT, I have a wife and three children.
                    Last edited by BKELLY; 11-19-2007, 04:19 PM.

                    Comment


                    • #25
                      Re: New diagnosis difficult to accept/adapt

                      It is hard for me to believe that you consulted a specialist who did not advise that you stop participating in Ironman contests. Most HCM patients are told not to raise their HR over 120.

                      Did the specialist do some testing to see if an ICD is recommended? Have you done a stress test? Worn a holter? What is your family history and have you fainted before? All of these are factors that need to be considered in deciding whether you are at high risk of sudden death.

                      If you are not inclined to quit the competitive sports, an ICD might be the way to go so that you would have some protection for your family.

                      Just some thoughts...
                      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


                      • #26
                        Re: New diagnosis difficult to accept/adapt

                        Every doctor has said to limit my exercise, but no one has given me any guidance on heart rate. My cardiologist and the specialist both said it's up to me to get the ICD. My septum is 2.4, I've never fainted and my holter was normal. I guess I'm borderline for an ICD. Has anyone had any complications from their ICD?

                        Comment


                        • #27
                          Re: New diagnosis difficult to accept/adapt

                          Some people have had complications from their ICD. On the other hand, some people have had their lives saved from their ICD. It comes down to what you can personally live with in the way of risk.

                          You don't say anything about your family history. My own family history includes 2 sudden deaths. I remember when my uncle died. I was a little girl who had to be with my cousins when they were told that they were left without a dad. My grandfather died before I was born. You can imagine that both of these events weighed on me when I decided to get my device, as I was also a borderline case, at least for awhile. AFter further testing, I was found to have v tach on holter, so I decided I would feel better with the device. Now, although I know there are risks, I feel much more safe with device than without it. I don't want my son to grow up without a mom.
                          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


                          • #28
                            Re: New diagnosis difficult to accept/adapt

                            BKelly - Welcome. If you haven't yet called the HCMA office and had a one on one chat - specific to you and your situation, I would urge you to do so. You are still very new to this whole HCM and all it means, not just to you, but family and friends also. There is so much to learn, so much to get used to. Meanwhile, your docs are learning a lot about you too, what your treatment and limitations should be. It's important to know you are safe and will be there for your wife and little ones.

                            I'm glad you have such great support with your friends, I'm sure they will continue to stand beside you for the long haul, even if your directions alter a bit. Best wishes - Linda

                            Comment


                            • #29
                              Re: New diagnosis difficult to accept/adapt

                              BKelly - welcome to the club - the club you never wanted to join. Yep, it sucks.

                              I'm amazed that your doctors haven't given you better guidance on what is/are appropriate activities for your situation. I agree with the above post, call the office and talk with Lisa. I was pretty much convinced I was going to drop dead - Lisa convinced me otherwise and connected me to the experts at CCF.

                              Don't the doctors get paid big bucks to give you definitive advice? That is my expectation. I ran a marathon 2 years before being diagnosed - now, nothing. I gave up all of that activity for my wife and kids. And . . . I'm still trying to find the right balance.

                              You have to make the best decisions for you and your family. Hope it goes well.

                              Andy P

                              Comment


                              • #30
                                Re: New diagnosis difficult to accept/adapt

                                We all must live our lives... however we need to be here to LIVE our lives... Please call me I think it would be helpful to discuss a few things.
                                Lisa
                                Knowledge is power ... Stay informed!
                                YOU can make a difference - all you have to do is try!

                                Dx age 12 current age 46 and counting!
                                lost: 5 family members to HCM (SCD, Stroke, CHF)
                                Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                                Therapy - ICD (implanted 97, 01, 04 and 11, medication
                                Currently not obstructed
                                Complications - unnecessary pacemaker and stroke (unrelated to each other)

                                Comment

                                Today's Birthdays

                                Collapse

                                Working...
                                X