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  • Fatigue in hubby with HCM

    [Fatigue in hubby with HCM]

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

    Date: 05-25-02 20:22

    Hi!

    My husband was recently diagnosed with HCM. (Just last week - so, this is all so new to me! ) I was looking for some insight/opinions in regards to fatigue. He seems to have very little energy, and tires easily - he's good 'till around 4 in the afternoon, with little or no physical exertion. He is having a hard time believing this is because of the HCM, but I believe it is, because fatigue is a symptom. Can anyone relate?

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    [Re: Fatigue in hubby with HCM]

    Author: sarah beckley -moderator (---.dialup.mindspring.com)

    Date: 05-25-02 21:28

    Dear Karla

    It is very likely that his fatigue is due to HCM, especially if his heart is beating too fast or irregularly.

    I think almost everyone here will tell you that they tire easily --or did before they started taking medication or had surgery.

    take care,

    Sarah

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

    [Re: Fatigue in hubby with HCM]

    Author: TM (---.divernon.hansoninfosys.com)

    Date: 05-26-02 02:36

    Karla-

    I might add that, depending on how your husband feels, it could be related to emotional stress or depression. Dealing with the news of HCM can cause some probs in this area and I've had ups and downs over it myself. My theory is that it's either the condition, the meds or the emotional/psychological effects - or any combination of the three.

    I wish you the best. I think as you learn more about HCM and as he learns to live with it, things should improve.

    Good luck,

    TM

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    [Re: Fatigue in hubby with HCM]

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

    Date: 05-26-02 06:36

    Thanks for your input. This is all so new to us - as I stated earlier, he was just diagnosed last week, after the doctor admitted him to the hospital for his chest pains and his 'extraordinary' EKG. His HCM was discovered when they did a heart cath.

    He has had periods of mild depression; dysthmia over the years, and we (and th doctors, too) always chalked up his extreme fatigue as a symptom even though it didn't fit the profile of someone with dysthemia. (severe depression, yes, but not dysthemia) He has been trying to tell the doctors - and me - for years how physically drained he was feeling, which has seemed to have gotten worse in the past 3 years or so. How many of you out there have had spent weekends on the couch "feeling out of it"? (as he puts it)and not able to do much of anything? Or made plans to go someplace and have just fallen asleep instead? This has happened more times than I can count...it didn't matter if he was or meds or not - which made it even MORE puzzling.

    He has a hard time accepting that he feels this bad (the tiredness) from the HCM, but to me it makes perfect sense.

    Is extreme fatigue perhaps an indicator of the severity of his HCM? Or, is that indicitive of ALL HCM sufferers? Fatigue mentioned in HCM articles seems to only be referenced when patients do some type of physical exertion - and this is not the case with him.

    I am gathering as much info as I can and searching for a cardiologist who is familiar with the treatment of HCM.

    Thank you!

    Karla

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

    [Re: Fatigue in hubby with HCM]

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

    Date: 05-26-02 10:31

    Hi Karla................This sounds so familiar to me..........I was diognosed almost 2 years ago.........buit it wasent until about a month ago that i went to another heart doctor and actually was told what i have and how serious it can be...i was told nothing about HCM by my first heart doctor..........other than it was just a little pressure in my heart...no problem.

    The problem your husband experiences with tiredness is so familiar to me. How many time I make plans to go and do things with family and friends only to cancel due to extreme fatigue. My one love is Walking the Streets of Charleston S.C., and in the past 2 years it gets harder and harder...especially if it is hot outside. Some weekends I never leave my house......before I finally learned what I have and the symptoms...I just thought I was being lazy and worthless...and my family would get impatient with me. It helps me to get out early or lates when its cool.........when you live in the "DEEP" south..this is very important.especially when our HOT is combined with high humidity. Down here it is hard to breath when its is real hot and humid.

    For 2 years I told my original heart doc my chest always ached and felt like it was being pinched from the inside. He ignored it. Of course he ignored my husbands complaints of chest pain and he had a heart attack.

    But any way...I dont feel guilty any more when I just cant go another stepor Im just too tired............

    And I sure can understand the depression of trying to deal with H.C.M.....if it werent for the great people of this board....I would still be depressed and angry every day............I still have little spells...but I can deal with it. And now I talk to my family about how Im feeling instead of hiding it. I wish you and your husband the very best........................................Connie

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    [Re: Fatigue in hubby with HCM]

    Author: Chuck Morrell (---.proxy.aol.com)

    Date: 05-26-02 10:31

    In many cases I know of, HCM seems to cause CHF (Congestive Heart Failure )

    when a person grows older. This would of course make a person tired and weak and short of breath. There are many Meds for this condition. One is lasix, which gets rid of extra fluid in the body.

    Pleople must understand that an ICD can protect from sudden death caused by HCM.

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

    [Re: Fatigue in hubby with HCM]

    Author: sarah beckley -moderator (---.dsl.mindspring.com)

    Date: 05-26-02 12:25

    Hi Karla,

    The fatigue is very common in HCM. If your husband has been in atrial fibrillation (an irregular heart beat) that makes it even more hard to move. The first time I was in it, I sat on the couch the whole weekend feeling like a lead weight.

    Please get huby to an HCM when you can and get properly evaluated and treated --and know that most of us dont' need ICDs at all, but it is nice to know they are there.

    A lot of people go undiagnosed for a long time, just like your husband. This is a genetic disorder that he has had all his life.

    keep us posted,

    Sarah

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

    [Re: Fatigue in hubby with HCM]

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

    Date: 05-26-02 19:16

    Hi, All,

    THANK YOU so much for your input, info, wisdom and words of encouragement. It helps SO much to know that I/we are not alone in this more than you know. I am feeling a little more calm (the GIANT knot in my stomach has left!) as I learn more....knowledge is powerful isn't it?

    After reading your posts (and again, THANK YOU for responding) I am beginning to piece together the puzzle. It is obvious that we begin our search for a specialist, and I will definitely make that call to HCMA to assist us in this.

    God Bless all of you - and I will keep you posted. Look for me often - I'm sure I'll have more questions and 'updates' and hopefully I can share our experiences to help someone, too!

    Thank you again!

    Karla

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

    [Re: Fatigue in hubby with HCM]

    Author: lisa (208.47.172.---)

    Date: 05-28-02 14:52

    To the wives/significant others,

    A friend sent me this email, I share it with you. This is a reminder to men and woman alike as to what it means to be together.

    "When I created the heavens and the earth, I spoke them into being. When I

    created man, I formed him and breathed life into his nostrils. But you,

    woman, I fashioned after I breathed the breath of life into man because your

    nostrils are too delicate. I allowed a deep sleep to come over him so I

    could patiently and perfectly fashion you. Man was put to sleep so that he

    could not interfere with the creativity. From one bone, I fashioned you. I

    chose the bone that protects man's life. I chose the rib, which protects his

    heart and lungs and supports him, as you are meant to do. Around this one

    bone, I shaped you...I modeled you. I created you perfectly and beautifully.

    Your characteristics are as the rib, strong yet delicate and fragile. You

    provide protection for the most delicate organ in man, his heart. His heart

    is the center of his being; his lungs hold the breath of life. The ribcage

    will allow itself to be broken before it will allow damage to the heart.

    Support man as the rib cage supports the body. You were not taken from his

    feet, to be under him, nor were you taken from his head, to be above him.

    You were taken from his side, to stand beside him and be held close to his

    side. You are my perfect angel...You are my beautiful little girl. You have

    grown to be a splendid woman of

    excellence, and my eyes fill when I see the virtues in your heart. Your

    eyes...don't change them. Your lips...how lovely when they part in prayer.

    Your nose...so perfect in form. Your hands so gentle to touch. I've caressed

    your face in your deepest sleep. I've held

    your heart close to mine. Of all that lives and breathes, you are most like

    me. Adam walked with me in the cool of the day, yet he was lonely. He could

    not see me or touch me. He could only feel me. So everything I wanted Adam

    to share and experience with me, I fashioned in you; my holiness, my

    strength, my purity, my love, my protection

    and support. You are special because you are an extension of me. Man

    represents my image, woman my emotions. Together, you represent the totality

    of God. So man...treat women well. Love her; respect her, for she is

    fragile. In hurting her, you hurt me. What you do to her,

    you do to me. In crushing her, you only damage your own heart, the heart of

    your Father, and the heart of her Father. Woman, support man. In humility,

    show him the power of emotion I have given you. In gentle quietness, show

    your strength. In love, show him that you are the

    rib that protects his inner self. Did you not know that WOMAN you are

    special in God's eyes? Now we really know!

    Send this to ten of thewonderful women you know - to bless their day!"

    This concludes the email... I think we all think of the heart.... a little differently then it was ment for this ...and therefore it means even more.

    best wishes,

    Lisa Salberg

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

    [Re: Fatigue in hubby with HCM]

    Author: Eduardo (---.mia.bellsouth.net)

    Date: 05-29-02 22:27

    Hello Karla;

    I was diagnose about ten years ago in the US Air Force.

    My first symtom happen out of the blue about 2 years ago I lost my breath and felt very weak.

    The local doctors up my medication and it continue. I finally asked them what could be done I they refer me to the following:

    National Institude of Health

    Bethesha Maryland

    This institude has SPECIALIST on the HCM condition, due to the different types of symptoms not many Doctors or Cardialogist are really up on it.

    One thing your husband has definately to do is NOT GIVE UP all the people on this site will tell you we have our real down times

    and I speak from expirience.

    Continue seen a cardilogist regularly that knows your husband symptoms and changes, this is specially important.

    Good luck and dont loose hope anybody,

    Ed

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

    [Re: Fatigue in hubby with HCM]

    Author: sarah beckley -moderator (---.dsl.mindspring.com)

    Date: 05-30-02 14:04

    Dear Ed,

    The HCMA does not recommend the NIH as they are a research

    center not a treatment center, further significant questions have been

    rasied regarding some members of the HCM staff. Please see the Wall St. Journal June 12, 1996 for details.

    you can call the HCMA at 973-983-7429 to get names of HCM specialists.

    Take care,

    Sarah

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

    [Re: Fatigue in hubby with HCM]

    Author: Tom Scott (204.156.24.---)

    Date: 06-05-02 09:12

    I have been dx with HCM for 30 yrs, one of the early ones but with little severe symptoms. My worst symtoms have been ongoing fatigue and chest pain (which seem largel reduced by calcium channel blockers).

    No doctor believes me when I attribute my fatigue to HCM (it took years before it was recognized that people can have severe chest pain). My family history is also reft with pituitary tumors which can have an effect on fatigue. I take anti depressants which have sometimes helped and I ought to get myself to an endocronologist but my research shows little effective treatment for this. Good luck

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

    [Re: Fatigue in hubby with HCM]

    Author: lisa (208.47.172.---)

    Date: 06-05-02 11:14

    Is this the Tom Scott from MD??? if so how have you been, it has been a while since we spoke!

    I am glad to see you here on the board! How is your family?

    Lisa Salberg

    President

    HCMA
    NOTE: This is a post from the previous forum message board.

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