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  • a question about working

    [a question about working]

    Author: susan (---.176-186.vldsgacbds.dial.optilinkcomm.net)

    Date: 07-02-02 15:16

    hi everyone

    i noticed that alot of people here are still working with hcm. after i had my second child i was told i could never work again do to the damage to my heart. my gradient was 50 at rest and within a half minuet of a debutamaine echo it went to 88 percent. needless to say i was a great canidate for the ablation which i had.

    i tried drug therapy first, i just got immune to the drugs, had a pacemaker implaneted, didn't work and had the albation. i felt like i was out of prison for a month. then i was put back on drug therapy. i still have all the symptoms, dizziness, passing out when standing to fast, irregular rythms, skipped beats, tacacardia, but no more heart mumer.

    i am one out of four children and the only one to be diaganosed with hcm, my father had hcm and we think his father did also. my father didn't know exactly what it was he had, his doctor told us after he died at age 43 that my father had ihss and it was heriditary.

    i applied for disability 5 years ago and was approved, the second to be approved in the state of georgia. i miss working terribly, its hard sitting at home. i know that it is a job raising 2 children but i miss getting out in the real world. here i am 36 years old and can't work. i really hate it. i can't even walk a quater of a mile and i feel like i am dying.

    i did change my eating habits and that does make me feel better, the major thing is no caffine!!!!! caffine in heavy doeses makes me have palpatations. it wasn't hard to quite.

    anyway i just wanted to say keep up the good work and may you all be able to work till retirement. i am envious

    susan

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    [Re: a question about working]

    Author: Lisa Salberg (208.47.172.---)

    Date: 07-02-02 16:43

    Susan,

    I am concerned over your current quality of life, with the information you have provided it sounds as if you should not be having such severe problems. I hope you will consider going to an HCM specialist that is nationally recognized for an evaluation as I can not help but think there is more that can be done to improve your quality of life. Please feel free to call the office and we can discuss this further.

    Best wishes,

    Lisa Salberg

    HCMA

    973-983-7429

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

    [Re: a question about working]

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

    Date: 07-02-02 18:09

    Hi Susan,

    I know how you feel about not being able to work. I get so tired of sitting home with nothing to do. I am only 40. I also have two children at home, but they are old enough to pretty much take care of themselves. I never worked long enough to get social security, but instead get SSI. Last month mine and my sons SSI and my medicate was taken from us because my husband makes $2200 a month and I get $235 in child support. My husband had to move out so I could get our SSI and my medicate back. There is no way we can make it on my husbands income so he move in with his niece . I would give anything to be able to go to work. I am not able to see the specialist in NYC because I have medicate and they don't take medicate. So even though the doctor says I no longer have an obstruciton I am still very symptomic. The doctor increased my Toprol XL to 150 mg instead of 100 which helped some but I still have almost as many syptoms. I also take 240 mg of Cardizem. The doctor I am seeing said there is nothing else that can be done.

    I also found out last month that both of my youngest boys have mild HCM. The youngest is scheduled to see the doctor again next month, but so far they don't have to take medication. The youngest has a heart murmur and had some problems with chest pains when he ran for a while. The other one has problems when it gets hot, he gets really light headed and sick to his stomach so that he has to go lay down, but doctor didn't seem to feel that was anything to worry about.

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

    [Re: a question about working]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 07-02-02 19:07

    Dear Dora

    In response to your other son having problems when it is hot out---I have had the same problem my whole life. No doctor has ever been able to give me any reason why I overheat so quickly, but I do. Dizziness, nausea, and headache are symptoms of heat stroke. It may not be heart related, but it is something to talk to your son about so that he takes precautions. If not treated, you can die from heat exhaustion. I always wear a hat, bring a bottle of water and stay in the shade as much as possible. You should make sure that if your son is playing in sports that he have a lot of water and take breaks and his coaches know to let him cool off periodically --and make him cool off if they see any signs of overheating.

    I do hope that things get better for you.

    take care

    Sarah

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

    [Re: a question about working]

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

    Date: 07-02-02 22:27

    Hello,

    I have not been able to work since November 99. I was an elementary school teacher for 15 years. I truly loved my job. It got to the point where I was graying out and so short of breath. I went on disability. Social Security and Long term Insurance were very easy for me to acquire. Now I am truly thinking about trying to go back to my calling. I am only taking Coreg and it has really changed my symptoms. All the other drugs were a nightmare. Norpace and Altenol were the two worst. Thought I was going to die. It felt like I was having major heart attacks. Cardiziem made me like a zombie. Metroprolol, (sorry for the spellings I am not looking them up) was OK, but severe pain in the chest continued.

    Coreg slows my heart down without much side effects. I do not know how long this will continue, but the pass six months, I feel better than I have in four years.

    Both Social Security and Long Term will give me a trial period. Now I have to reapply all over again since I lost my tenure. I am not a candidate for any medical procedure due to my thickness is on my left wall.

    I have learned to live with this condition, now I am considering learning how to teach again.

    Wish me luck.

    Laura

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

    [Re: a question about working]

    Author: susan (---.46.OVG.vol.com)

    Date: 07-02-02 22:47

    hi lisa

    in response to your message, i have a specialist in south carolonia, Dr. wiliam spencer III. i am going to be seeing him on the 8th for all the yearly testing. such fun. he told me the last time i talked to him that in some people with hcm the symptoms do not go away after the ablation. we are going to see if i am a candidate for the ablation again. i was told i might have to have it again after five years. from what i understood even though the semptum was cleared out the other muscels in your heart thicken also and this can cause you to have all the symtoms anyway. the muscles in the rest of my heart are thickened, the atenol works pretty good, if i don't take it on schedule i start getting chest pain and short of breath. the rest i just deal with. i have been dealing with it for so long. zoloft helps a lot with the stress, i mean it helps alot. if only there was no stress in life, wouldn't that be a hoot. any way i am hoping for good news this month.

    thank you

    susan

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

    [Re: a question about working]

    Author: Mary (---.wi.rr.com)

    Date: 07-03-02 10:52

    I haven't been able to work since January 98, but was just last month approved for disability (!). I have to say that I love being home. I know that many think it's more worthwhile to get away from the kids and have an outside job, but I've found so much more satisfaction being able to mother them than anything else I could do. The time with them is so short, and they grow so fast, that to me it's a precious gift. This is not to demean those on the list who really want to work outside the home--it's just to say that for me working as a mom is enough. I've also found that I feel healthier in the short time since I was approved for disability--the stress is gone, gone, gone! That in itself is worth a million dollars!

    Mary

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

    [Re: a question about working]

    Author: Shannon Santagate (---.galileo.com)

    Date: 07-05-02 18:17

    Hi Susan.

    I was reading all the messages here and I got all excited when I saw that you were to see Dr. Spencer on the 8th! I had the ablation done by him this past April and I can't tell you what a difference it has made in my life. I can do so much that I thought I would never be able to do again!

    The main reason I am writing, though, is to tell you that there is still hope even though it didn't work for you the first time. My brother had the ablation once and it was not successful. When he had it a second time it was VERY successful! He was Dr. Spencer's 34th patient the first time. He is a different person now (and so am I)-- more energy, a better outlook on life, etc. I am so glad that you are seeing Dr. Spencer. When I go for my follow-up appointment at the end of this month I will have a hard time not giving him a great big 'ol bear hug!!

    I wish you all the best (and you will get it with Dr. Spencer.)

    Shannon Santagate

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

    [Re: a question about working]

    Author: susan (---.177.OVG.vol.com)

    Date: 07-05-02 21:18

    hi shannon,

    thanks so much, i was one of the first 30 dr. spencer did also, and yes he gave me hope that i might be able to have it again, i am so glad you brother is doing better. i know what you mean about the bear hugs. dr.spencer and donna are wonderful. i keep in touch with donna on a regular basis, not just the once a year thing, email her alot. i will have to make sure i tell him i have had contact with you, the love to hear about us hcm patients talking.

    keep in touch

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

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