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Daisy Find out more about Daisy
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  • Laura
    replied
    Re: end stages

    Hi Daisy

    I was diagnosed in 1987 26 yo. i had very few symptoms until 2 1/2 years ago. In these last few years i have been from the east to west coast in downward spiral searching for help. One of the most helpful things for me is oxygen. I don't know if anyone else has tried this with the chest pain but it does help me. I do almost nothing compared to 3 years ago. I have to say the worst is i can hardly drive, can you imagine, there in my drive is my beautiful "78 CAMARO... My husband really wants to take her out for a spin..............
    My mother aunt uncle & brother did not have any of my symptoms.
    When i got this bad i thought i was crazy, as the heart Dr here, to this day states that my pain is not from HCM. luckily i have a good PC. He has always been willing to send me where i want/need to go and has helped with all the pain i am having.
    I have had,tried & am on different meds,yuck. I have an AICD & I need a new atrial lead. If you need one do it.
    Having non obstruction is the really hard part since there really is nothing other than meds and implants.
    Daisy,I hope this finds you well and fighting.
    If we don't fight no one will hear us!!!!!!!!

    God Bless
    Laura

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  • mjesaitis
    replied
    Re: end stages

    Tommy,

    To clarify what I meant by doing things I probably should or should not have been doing...

    In 1983 when I had my myectomy and due to mine and my doctor's ignorance on HCM, I thought that I was cured! I felt great! So I went off all my heart medications after my recovery. I also continued to drink too much alcohol, smoke too many "funny" cigarettes as well as trying other non-prescription meds (coke being the stupidest), playing competitive sports, weight lifting, etc. I guess being the first in the whole family diagnosed didn't help either. We didn't know it was hereditary until probably 10 years later when the next relative was diagnosed. This was also around the time that my symptoms began returning.

    So I shouldn't have done many things but even if I had a good heart, I shouldn't have done them either. Kids... they can be so dumb. I'm lucky to be here today and God willing will be around for a lot longer.

    P.S. I still overdo things such as bending over or lifting at times, but my family is helping me get over this by doing things for me. It's hard because I have always lived alone and done all my own work around the house, on the cars too.

    Matt

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  • Linda
    replied
    Re: end stages

    Dolly, Dobutrex or Dobutamine, is used to strengthen the contraction of the heart muscle, specifically the weakened ventricles in failure. It will strengthen the contraction, thus increasing the amount of cardiac output or blood flow without increasing the heart rate. This is important to the failing heart because an increased heart rate will increase the need for oxygen to the heart muscle beyond that of a slower rate. The harder and faster the heart muscle pumps, the more oxygen it needs to support it. So increasing only the force of the pump is most efficient. It can only be given by IV and one of the advantages is that it has a very short half-life. That means its effects only last a few minutes, another advantage if a person should have a reaction to it. It is not to be confused with Dopamine, which will be used in a more acute situation, due to it's additional effects. Hope this helps. Linda

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  • Lisa Salberg
    replied
    Re: end stages

    I can not get that link to work...
    Lisa

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  • bryan
    replied
    Re: end stages

    Hmm that link worked earlier. Im probably doing something wrong!

    Leave a comment:


  • Dolly W
    replied
    Re: What About Dobutrex Treatments?

    I was told that sometimes in end stage HCM, dobutrex infusions are used to help the heart beat more efficiently. Lisa, have you heard of this? Can you explain?

    Thanks.

    Leave a comment:


  • Tommy Mac
    replied
    Re: end stages

    Originally posted by mjesaitis
    There were a lot of things I probably should have or shouldn't have been doing, but because of my lack of knowledge on the disease, I didn't know better.
    What are some of those things? Sure, some of them may be obvious but maybe you'll have some input for those of us still trying to do the right thing.

    Thanks so much and good luck to you...

    Leave a comment:


  • Midge Rollins
    replied
    Re: end stages

    Lisa, thanks for the information. I was wondering what percent of us get to my stage and now I know. Thank God it is not a higher percentage.

    Leave a comment:


  • Lisa Salberg
    replied
    Re: end stages

    1) Is end stage inevitable for every HCMer?
    Answer: NO it is in fact rare and only happens in about 10% of cases.

    2) Does this stage apply to both obstructive and non-obstructive HCM?
    Answer: Yes it appears so.

    3) What kind of medications are used for "end stage" or "burn out" condition?
    Answer: Funny thing is that the drugs are the drugs we avoid in HCM - Ace, diruetics, and other drugs that help the heart beat harder.

    4) What are the indications, just the symptom of SOB or change in EF?
    Answer: The EF drops as the walls thin - SOB and fatigue are big symptoms fluid retention it a big one too.

    5) For non-obstructive people seems like options are very few to nothing since A.abl or myectomy is not applicable. What are the course of actions as the condition progresses?
    Answer: Medication changes, pacemakers and ICD's in some rare cases transplant (about 2-3% of cases are transplanted)

    Hope this helps.
    Lisa

    Leave a comment:


  • kthanki
    replied
    Re: end stages

    I would like to open this topic again...
    Some clarification will be helpful please for new questions:

    1) Is end stage inevitable for every HCMer?

    2) Does this stage apply to both obstructive and non-obstructive HCM?

    3) What kind of medications are used for "end stage" or "burn out" condition?

    4) What are the indications, just the symptom of SOB or change in EF?

    5) For non-obstructive people seems like options are very few to nothing since A.abl or myectomy is not applicable. What are the course of actions as the condition progresses?

    Info please..???

    Leave a comment:


  • Sarah
    replied
    Re: end stages

    Hi,

    No. EF is a number that you will find on an echo report.

    * Blood pressure is the force of blood against the walls of the artery.

    * Systolic pressure is the highest pressure in an artery when your heart is pumping blood to your body.
    * Diastolic pressure is the lowest pressure in an artery when your heart is at rest.
    * Blood pressure measurement is made up of both the systolic and the diastolic pressure. It is normally written like this: 120/80, with the systolic number first.

    Your bp is measuring the pressure in your artery where as the EF is measuring the percentage of blood leaving the ventricle.

    S

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  • pickaback
    replied
    Re: end stages

    Is EF the same as the lower number on a blood pressure reading? Thanks again.
    pickaback

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  • Karen P
    replied
    Re: end stages

    EF stands for ejection fraction - which is the measurement of the amount of blood ejected from the heart into the body in a single beat. I believe the norm is anything above 50/55............please someone correct if I am wrong.

    Leave a comment:


  • pickaback
    replied
    Re: end stages

    What does EF stand for?

    Leave a comment:


  • Lisa Salberg
    replied
    Re: end stages

    For most people it is very gradual. I do know of a few people who did turn rather quickly (several months to one year). End stage is a really BAD name and I would like to change the name as it is misleading. Some docs call it "burnt out" - not to thrilled with that one either but I think it is a little better.
    "End Stage" can last for 10-15 even 20 years in some people. So please do not hear the word and think...OK I give up!
    Transplant is an option and there are also many many meds now available that can be of great help.
    My dad is in "End Stage" and honesly 2 years ago it was not looking good. BUT here we are 2 years later and he is doing very well. In fact his EF went up nearly 20 points after managing his meds better.

    Be well,
    Lisa

    Leave a comment:

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