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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My loving inspiring son.

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  • My loving inspiring son.

    [My loving inspiring son.]

    Author: Kathleen (---.proxy.aol.com)

    Date: 11-22-02 20:24

    On Tuesday November 12th our wonderful twenty year old son suddenly died while walking on the campus at his college. Patrick was diagnosed with HCM five years ago and was not a candidate for an ICD or for any kind of surgery because Patrick did not exhibit any "symptoms" of the disease. He was once on Verapamil but had an allergic skin reaction to it. Patrick was an inspiration to everyone with his fun loving personality. I was so sick and tired of hearing "nothings changed" every time Patrick had a cardiology visit that now I feel as if I had become complacent. I should have pushed it further and demanded to know why he was not a candidate when he experienced excruciating headaches. I will never hear the sound of my son's laughter again and it is breaking my heart. Now I wish that my son had lied about his symptoms so that maybe he might have had a chance to live longer with an ICD. His father has an ICD because of ventricular tachycardia, but for some reason Patrick was not a "candidate" for this device. The question is, when is someone a candidate for an ICD? I pray to God that there will be a cure for this disease in the near future. Our son was blossoming in his life and now my precious son is gone. I feel that everyone who is diagnosed with HCM should automatically receive an ICD implanted if they wish to. To heck with all the waiting and watching of the medical establishment, their procrastination is causing peoples lives to be needlessly lost. This is how I feel and nothing is going to dissuade me. I am not happy with the treatment my son received at the Dartmouth Hitchcock Medical Center. Maybe we are just not rich enough for this "non-profit" facility. Kathleen

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    [Re: My loving inspiring son.]

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

    Date: 11-23-02 02:29

    Dear Kathleen,

    I'm very, very sorry for the loss of your son. There are, sadly, many people on this board who have been through what you are experiencing. I'm sure some of them will post here and others may e-mail you directly.

    While I completely understand your feelings about putting ICDs in all of us, it really is not a good idea for several reasons. First, you do run the risk of complications, even death, just by having one installed (very low risk, but still there). Secondly, the majority of HCM patients do not have the risk factors (which I'll post below).

    The tragedy is that HCM is elusive. Even the best medical treatment in the world may not save you. I know of one young man (30s) was being seen by the Mayo Clinic. He didn't have any risk factors either, but he is gone now. While it seems that this would support your plan to "ICD" all of us, the reality is that there has to be a medical reason to put in an ICD. If you can't point to something and say "this warrants an ICD," then no doctor or insurance company anywhere is going to do it.

    We hope that someday we will discover the missing risk factor for these young boys and men that seem to slip through the cracks.

    These are the known risk factors for sudden death that warrant an ICD. Most doctors require you to have at least 2 factors for an ICD:

    Family history of early/sudden death with HCM.

    History of cardiac arrest

    History of arrthymia - VT or repeat NSVT

    Mass hypertrophy - septal measurement of 3.0 or greater

    Adverse blood pressure responce on stress test

    Fainting/passing out -repetitive - (careful to evaluate for obstruction)

    NOT RISK FACTORS AT THIS TIME:

    Obstruction

    On a side note, my brother attended Dartmouth in the late 90s. He has very symptomatic HCM and has been in atrial fibrillation for ten years. He still goes back to see his doctor at Dartmouth-Hitchcock Center as he hasn't found anyone he likes or trusts as much. This doesn't mean they are HCM experts, but they have seen it before. However, if you feel they ignored any of the risk factors, that is a horse of a different color.

    Please read as much of this message board as you have time for --many of the old posts may help you through this dark time.

    best wishes,

    Sarah

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    [Re: My loving inspiring son.]

    Author: Lori (---.client.insightBB.com)

    Date: 11-23-02 05:05

    Thank you for sharing your story. I have two teenagers one postive with HCM and one OK for now. It is hard to think about your loss. I am so sorry. I lost my older brother , friend, my buddy to HCM last Dec.

    Keep Fighting

    Lori

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    [Re: My loving inspiring son.]

    Author: beth (---.nyc.rr.com)

    Date: 11-23-02 08:52

    Dear Kathleen -

    I'm terribly sorry for your loss.

    I had a similar experience ( a friend not a child which I'm more than certain is the hardest loss of all) and

    I think you should know that the HCMA and Lisa were enormously helpful (as was this website) in helping me to understand the complexities of this disease. It also gave me some answers to questions and provided insights into everything that was said about my friend's condition and her prior medical records. You might want to consider making an appointment to speak with them when you're ready. Just getting my facts straight seemed to be of some help to me.

    While I continue to miss my friend and feel the pain of that loss and will endlessly, if I quiet my mind I can hear her thoughts and her laughter with me. I hope that you too will continue to hear your son's thoughts and laughter with you each and every day despite the tragic loss of his presence in this world with you.

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

    [Re: My loving inspiring son.]

    Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

    Date: 11-23-02 10:45

    Dear Kathleen and family, I am so sorry to read of this horrible ordeal you all have been through. There is just nothing else I can say to help you with the loss of your precious Patrick. Please know that we are all thinking of you and the difficult days ahead. I hear what you are saying about possibly having become complacent, but, as a parent, you certainly did the very best you could with the information you had. It is such a complex disease and baffles even the experts. That thought doesn't take away my anger and anguish at your loss of Patrick, so I can only guess at what you must be feeling. You describe Patrick as being loving and inspiring, you take the credit for having raised him to be such a wonderful person. Please continue to post and let us know how you all are doing, a big hug, Linda

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

    [Re: My loving inspiring son.]

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

    Date: 11-24-02 14:23

    Kathleen,

    Words will never be enough to take away your pain, but know that we are all sorry for your loss. I share your wishes for a cure, but understand the limitations we face. I too wish for better ways to detirmine who is at risk so we may avoid needless deaths in the future.

    Now your heart is breaking, as is ours. I hope that very soon you will find some peace and I hope someday very soon we are able to say that those lost to HCM in the past have provided the future with the information needed to ensure life. My sister was also lost..I have attempted to do something with the pain, anger and energy her death created...it is called the HCMA. Many who have lost loved ones have joined us in our battle. Many of them are here on the message board and many are too upset to even post there thoughts as the pain is just too much, but know they are there and that they do care.

    We are here for you and your family. We understand. We will be here for you to vent to, cry to and when your ready to laugh with.

    Thank you for sharing your son with us, he sounds like a wonderful young man.

    God Bless Patrick

    Sincerely,

    Lisa Salberg

    President

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

    [Re: My loving inspiring son.]

    Author: maura mendoza (---.proxy.aol.com)

    Date: 11-25-02 04:47

    Kathleen,

    Please know that you and your family are in my thoughts and prayers. I lost my oldest son Travis ( 14yrs old ) to undetected hcm on August 22nd. I realize that there are no words to ease your pain, That your grief is overwhelming and that the loss of Patrick is deep. i am here for you if you ever need to vent or need someone to listen. God Bless you and your's ~ Maura Mendoza

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

    [Re: My loving inspiring son.]

    Author: betsy trawick (---.atl.client2.attbi.com)

    Date: 11-25-02 19:50

    Dear Kathleen, I can certainly identify with all your feelings as I lost my 20 year old college son on July 4th. He was out for a jog and feeling absolutely wonderful when he passed. It is a very difficult thing we are forced to deal with and I like you, became complacent with doctors saying, no change, etc. - I have the condition myself and feel no different than I felt 15 years ago(when diagnosed) but realize that I could go any day, any time - it is a mystifying condition and for many there is no "cure" or even temporary fix. My younger son has the condition as well and underwent a myectormy last Dec. - did great with that - but myself and Evan (my 20 year old) were "not candidates for either a myectomy or a pacemaker. My thoughts and prayers are with you and your family as you go through this difficult time - please contact me if I can offer any comfort. God bless you and our sons will always live on in the lives of the many they touched.
    NOTE: This is a post from the previous forum message board.

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