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 to this Forum/mental part of this disease

Collapse

About the Author

Collapse

HCMA FORUM ARCHIVE Find out more about HCMA FORUM ARCHIVE
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • New to this Forum/mental part of this disease

    [New to this Forum/mental part of this disease]

    Author: Brian (---.merck.com)

    Date: 10-08-02 10:16

    Hello Everyone,

    My name is Brian and I am 32 yrs old and have known about my non obstructive HCM for about two years now. I am the first person in my family to be diagnosed with this disease but certainly not the first person in my family to have heart trouble. My father two years ago at the age of 59 had a heart transplant. He did not have HCM, he had caronary artery disease. (My father is now doing great and feels the best he has in his life) My grandfather at the age of 61 had bypass surgery but once again no HCM. There have been some great uncles who have dried at young ages (41 and 46) they were said to have died of heart attacks but my fear is they died of HCM. Now they were all heavy smokers, big time meat eaters and drinkers, which I am not but I am sure that contributed to there early demises.

    My question is how does everyone here deal with the mental part of this disease? Physically I feel fine, but I am afraid to run around the house with my 3 yr old , I am afraid of doing the things I have always loved to do like take walks with my wife, play non competitive basketball and football. My wife and I would like to have another child but I am afraid that I am going to pass on this HCM gene to another human being and it would tear me apart to find out if my one children would have this disease. My son has been tested and is fine right now but my cardioliogist said sometimes this does not show up until puberty. I am even afraid to talk about this at times with my wife.

    I would be interested in finding out if I am the only one who thinks about this. It seems like my heart problem is always on my mind. If I get the least little feeling I think its something wrong with my heart.

    Thank you and I am interested in communicating with all of you through this wonderfull forum

    Brian

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: New to this Forum/mental part of this disease]

    Author: betsy trawick (168.8.208.---)

    Date: 10-08-02 11:43

    Wow- my thoughts exactly! I do think about it all the time - my family probably has a rather lackadaisical attitude about the whole thing. Live your life to the fullest - know what your limitations are but we could all die this afternoon in a car accident. Even though my 20 year old son passed away this summer, I am grateful now that he lived life to the fullest and did not let this condition get in his way - unfortunately, he was not able to do those things he loved most - play sports, but we never and he never allowed his heart condition to play with his mind. I am ever so grateful! Also, how grateful I feel to have had him in my life, even though it was a short 20 years - I am a much more fulfilled and better person for having had him that long. Good luck with your HCM and your future family plans. Had I known about my HCM after the birth of my lst child, would I have not had subsequent pregnancies and births of Evan and Casey? Absolute blessings and given to me for reasons none of us can know. It certainly hasn't been an easy road, but alot learned along the way. And the medical community is amazing with discoveries every day - who knows, by the time you have another child, there could be a cure for HCM.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: New to this Forum/mental part of this disease]

    Author: Howard Mirchin (---.proxy.aol.com)

    Date: 10-08-02 12:22

    My thoughts exactly. I have been diagnosed with this disease for the last 16 years and steadily have seen my overall health detoriate, but the mental agony or paranoia of knowing if you will just drop dead acts like a constant reminder of this dreadful disease that can not be shared with anyone not inflicted. Over time what I consider as a normal day has been greatly diminished physically and mentally. I am scheduled to have a myectomy in November at the Cleveland Clinic to reduce my severe resting gradient > 90. I wish all of you well and look forward to returning to a new definition of normalcy, if at all possible.

    Howie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: New to this Forum/mental part of this disease]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-08-02 17:42

    We can not discount the "mental" factors with HCM... Face it like it or not we are members of a club we did not want to join and one that instead of benefits it has life threatening risks attached!

    So what can we do to get through our lives with this hanging over our heads...everyday...

    Well to be honest I do not think there is a magic answer..nor do I think that there is a one size fits all trick...

    I think it is individual, I think it must come from within and I think that if one wants to be negitive and angry about having HCM ...then nothing anyone can do will change it. However, if you choose to live and I mean LIVE you will understand that there are no sure bets in life and we must make the best of what we have. This does not take away the pain, sorrow and feelings that we were somehow short changed in the process.... but I remind you we each have our burdens to carry.... We could be a great deal worse off...yes it could be better too... but we are where we are and there is no changeing it...so the key is how to be happy.... how to live without fear and how to be a whole person.

    Some of you may find help in a mental health professional... and you should not feel of less of a person for seeking help, we all need help from time to time-- isnt that what we are doing here?

    Maybe there are issues of genetic guilt that you need to work out, maybe your angry at the dr that diagnosed you, may be your just mad at yourself for not being perfect....FYI no one is perfect...Your dr is doing his job and your parents created you and hoped you would be the "perfect" child and you created your child with the same hope...we can not do anything about genetics...

    talk to each other, find friends, find support and help each other. AND know this YOU are never alone here, we understand.

    Lisa Salberg

    President,

    HCMA

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: New to this Forum/mental part of this disease]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-09-02 00:19

    Dear Brian,

    I think we all go through what you are feeling. I have a couple of suggestions. First, please see a specialist and be evaluated for an ICD. If you have enough risk factors that warrant getting an ICD, you will rest easier knowing that you are very protected from a risk of sudden death. Also, by seeing a specialist, you will know that you and your family are getting the best treatment possible.

    Most people with HCM live a full life span! The sudden death aspect gets a lot of press, but statistically it is very, very small. However, you do need to know if you fall into a high risk category. You may never know about your relatives since HCM was not really well known until ten years ago. It has had many names and has many faces.

    The reality is that life is very fragile and we never know when or how we are going to go (many members of my family, including myself, have been near death on occaison). You just choose to live. If you let the "what ifs" rule your life, you won't have one. Someone famous once said something like: Why worry about beind dead since I'm not and when I am, I won't be able to worry about it? It is very hard to remember to carpe diem all the time, but we have to try.

    The HCMA can helpl you find a specialist. And think about coming to the annual meeting in June as I think you will find it very helpful. THere will be more info about it as it gets closer. June 4-6 I think. In NJ.

    Take care,

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: New to this Forum/mental part of this disease]

    Author: Brian (---.phnixv01.pa.comcast.net)

    Date: 10-09-02 10:05

    Thanks so much for all the wonderfull words of encouragement. I do totally believe in my Cardiologist, he is generally known as one of the better in the City of Philadelphia. He has treated my whole family and in fact kept my father alive for 11 years before he had his transplant. All the opinions my father got at that point were that he was terminal and had 6 months to live. That said I am always up for finding out more information and I am happy that I stumbled upon this web site. Can you tell me more about ICD?

    Thank you

    Brian

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: New to this Forum/mental part of this disease]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-09-02 12:25

    Dear Brian,

    Implantable cardioverter-defibrillators (ICDs) are devices that they install in your chest. The ICD tracks your heart rate and rhythm; it will electrically shock your heart back to normal if it gets out of line. The device is programmed to respond to anything outside certain parameters.

    The more of the following risk factors you have, the more likely you are to need an ICD: a history of fainting, heart attack, a septal wall thickness over 3cm, episodes of ventricular tachycardia, low blood pressure or incorrect blood pressure response to exercise, and a family history of sudden death (two family members or more, usually, unless one was very young--this varies a little). Most doctors agree that 3 or more factors is definitely a concern and would probably recommend an ICD.

    We hope to be adding more ICD info to the web site in the near future. In the meantime, ask away.

    S
    NOTE: This is a post from the previous forum message board.
Working...
X