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  • Just been diagnosed with HCM

    [Just been diagnosed with HCM]

    Author: Amanda (---.dsl.dytnoh.ameritech.net)

    Date: 07-22-02 18:12

    About two weeks ago i was diagnosed with HCM and a week later i found i am pregnant. i feel bad all the time and have lots of chest pains. i have air force doctors taking care of me and am being sent to cleveland for farther tests. i cannot do my job as a cashier because i become short of breath and dizzy. i am really scared but glad to know that there is people out the there with the same problem.

    sincerely,

    amanda

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    [Re: Just been diagnosed with HCM]

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

    Date: 07-22-02 19:51

    Amanda -

    Welcome to the HCMA...the club you really never wanted to join but are glad is here

    Just to let you know that pregnancy in HCM is well tolorated and you should have very few problems with your HCM due to your pregnancy - You will want to avoid an epidural at delievery. You can learn a great deal from the message board and if you need more information please call the HCMA office.

    Best wishes,

    Lisa

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    [Re: Just been diagnosed with HCM]

    Author: susan (---.174-71.vldsgacbds.dial.optilinkcomm.net)

    Date: 07-22-02 22:25

    hey amanda,

    i have 2 children myself, i also had 2 c-sections. i can tell you this much, i felt the best i have ever felt when i was pregnant, had wonderful blood volume. just be careful about what you do, the one thing that would make me pass out in a heartbeat was going to clothing stores, all the dye in the clothes. the smell would just make me fall to my knees. get away from those airforce doctors. get a regular obgyn and cardiologist. let them know whats wrong with you. had bad bad bad problems with military doctors. they get paid no matter what, just remember that.

    good luck

    susan

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    [Re: Just been diagnosed with HCM]

    Author: Amanda (---.dsl.dytnoh.ameritech.net)

    Date: 07-23-02 12:39

    why would i not want an epidural? i don't think i could go thru labor without one. i remember with my first child that is the only way i made it thru.

    amanda

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    [Re: Just been diagnosed with HCM]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-23-02 16:00

    Dear Amanda

    I can't answer that one, but I can say that some women here have mentioned that they had C-sections so that they didn't put that extra stress ontheir heart of going through labor.

    S

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    [Re: Just been diagnosed with HCM]

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

    Date: 07-23-02 16:11

    Epidurals are vasodilators, they will deplete your volume of fluid (blood) by opening your veins too much. You must avoid all vasodilators with HCM (viagra, nitro, and even alcohol)

    Epidurals have been linked to at least 2 deaths of HCM patients in the UK. Proper hydration is very important with HCM at all times (pregnant or not) so drink water!!! all the time!!!

    Talk to your doctors about other forms of pain management during delivery.

    Best wishes...by the way when are you due??

    Lisa

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    [Re: Just been diagnosed with HCM]

    Author: Jennifer (---.s239.tnt1.abrd.md.dialup.rcn.com)

    Date: 07-23-02 16:30

    Hi Amanda,

    I have one son (2 1/2) and am halfway through my second pregnancy. I was diagnosed with HOCM about 9 years ago and have gone through many emotions regarding having kids and my risks with delivery. I also feel wonderful being pregnant. Best I have ever felt in my life due to increased blood volume. With both preg. I have been followed by a team of periontologists and cardiologists in Delaware- I live in Md. Their recomendations for delivery are very simple. With Jacob and this one they want me to have a very good epidural. As long as I had plenty of IV fluids, epidurals were accepted for me. One reason they really pushed for an epidural ( and I never complained!) was because they did not want me in any pain and pushing was very off limits. So he was delivered with forceps and everything went fine. They said epidurals can lower my blood pressure but fluids offset that. I am being treated with meds. right now and seem to have little symptons. I have talked to other ladies with different symptons and their doctors only thought of C-section. So it just shows you that it really depends on your health and how the doctors and you want to proceed. Get lots of opinions and think ahead to holding that precious bundle of love. Good luck!

    Jennifer

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    [Re: Just been diagnosed with HCM]

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

    Date: 07-24-02 05:02

    Amanda and Jennifer -

    I too had great doctors and in a top rate hopspital (this is before I started the HCMA and know what I do now).They also suggested the epidural with plenty of IV fluids -- 4 bags going at the same time and two people squeezing the bags so they would emty as fast as possible directly before the epidural. Within minutes of the epidural my blood pressure crashes..the last # I remember hearing was 70/30, then I was OUT COLD! They did the C section within a few minutes and took my daughter as fast as they could, then they were ready to work on me. I came around a little while later and it took 3 days for my blood pressure to get back to a point where I could walk around the room. I spent the first day in CCU then begged to be moved (my sister had died 4 weeks earlier in CCU so I wanted OUT!). So I beg you all to be very careful here I almost lost my life while giving my daughter hers, and that is the last thing any mom wants to do.

    Best to all!

    Lisa

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

    [Re: Just been diagnosed with HCM]

    Author: Amanda (---.dsl.dytnoh.ameritech.net)

    Date: 07-24-02 06:01

    i am not due til march 17th but they are worried that i will have problems the second and third trimester. because after my first kid i had post partum pre eclampsia and they are afraid that will happen with this one. and also they just found this problem. i am being sent to cleveland to another cardio doctor in a couple of weeks.

    amanda

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    [Re: Just been diagnosed with HCM]

    Author: Amanda (---.dsl.dytnoh.ameritech.net)

    Date: 07-24-02 06:03

    which medicine are you on while your pregnant? they have me on lopresso twice a day.

    amanda

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    [Re: Just been diagnosed with HCM]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 07-24-02 07:44

    Amanda,

    Please be sure the AF docs know all your medical history. Where are you? Wright-Patt? Anyway, I know military docs get a hard rap and lots of people don't like them, but as with anything else, it's all in who you've seen and the quality of care you've received. My husband has HCM and was diagnosed by AF docs. They were really good to him. Actually, it was a physicians assistant who first caught the problem and ordered the tests. I am not saying you don't need to see specialists too. I strongly recommend you see a specialist too. But just to let you know that all military docs aren't quacks. If you are at Wright-Patt, they have a great hospital. In fact, that is where my husband's defibrillator was placed. Feel free to write me if you want.

    Reenie

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    [Re: Just been diagnosed with HCM]

    Author: Amanda (---.dsl.dytnoh.ameritech.net)

    Date: 07-24-02 08:16

    i am at wright patt. the doctors here are sending me to cleveland to see specialists that is the only reason i am going. AF doctors have taken care of me for years now but just recently found this problem because recently started having problems.

    amanda

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    [Re: Just been diagnosed with HCM]

    Author: Lynn S. (---.dsl.dytnoh.ameritech.net)

    Date: 07-24-02 09:36

    Hi Amanda!

    I was just diagnosed with HOCM in April 2002 and wanted to let you know that I just returned a month ago from my first visit to Cleveland - I saw Dr. Harry Lever and was extremely impressed. Additionally, I thought you might find it interesting/comforting to know that we are practically neighbors - I live in Miamisburg right by the Dayton Mall! Just thought you might like to know that there is someone nearby who understands what you are going through.

    All the best,

    Lynn

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    [Re: Just been diagnosed with HCM]

    Author: Jennifer (---.s78.tnt1.abrd.md.dialup.rcn.com)

    Date: 07-24-02 16:34

    Hi Lisa,

    I just about fell over when I read your birth story. How very scary for everyone involved! If my experience had even come close, I would not be having this 2nd child. I cannot imagine the feelings you were going through. I will pass your story on to my docs and see what they say. Thanks a lot!!

    Jennifer

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    [Re: Just been diagnosed with HCM]

    Author: Amanda (---.dsl.dytnoh.ameritech.net)

    Date: 07-25-02 06:23

    i am actually seeing harry lever myself, that is the doctor they refered me too. it is good to know that there is someone close to me that understands what i am going thru.

    amanda

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    [Re: Just been diagnosed with HCM]

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

    Date: 07-25-02 21:38

    Hi all!

    Re my meds I was on Corgard and Dilantin (seizure meds) oh for those of you who may not know I also had a stroke in 1990 after endocarditis (post dental work).

    Re my fear at the birth of my daughter, funny thing..there was none. Even though I was crashing and everyone around me was "very focused!" I was really calm. Maybe I was in denial myself but I thought nothing bad can happen Lori wont let it! and I was right. Even Adam was really calm and the nurse said to him "are you OK , you seem so calm" he told the nurse "you dont know my wife, she will be fine, she had been though so much this is nothing".

    After hearing the nurse tell me this I laughed and thought to myself...I guess I have given him some advendures in medicine! -

    I spoke to Dr. Lever today and he is very happy to be seeing so many HCM patients! He even told me they will be getting more help in his dept soon!

    Best to all...and by the way I WANT BABY PICTURES!!!!

    Lisa

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

    [Re: Just been diagnosed with HCM]

    Author: Cynthia Waldman (---.dsl.lsan03.pacbell.net)

    Date: 07-26-02 15:23

    I just thought I would add my 2 cents here too. I am 37 and 8 1/2 months ago gave birth to a son. I also have HCM. I had an epidural, but my Dr.'s were very very careful about my blood pressure. I was induced at 39 weeks, and I did push (by then my OB made sure the epi had worn off, and let me just say it was not fun!) Anyway, it was fine during the delivery. However, I will say that I passed out in the bathroom about 3 hours or so after I had given birth and my blood pressure was in the toilet...like 50 over 30 or something. Needless to say, I wasn't allowed out of bed for the next 12 hours or so.

    I was followed during my pregnancy by a OB and a perinatologist. My cardiologist was also actively involved, and I was on a heart monitor both during and for the 24 hours after delivery.

    I was not on meds during my pg because I had never been on them before, and I asked to remain off of them until after birth. I was fine without them heart wise, although I must admit that I was much more out of breath when pg, and now that I am on only 12.5 mg. of Atenolol daily, I am really not out of breath. (My blood pressure is still really low which is why I don't take more.)

    Anyway, just be careful and know what needs to be watched. I don't think that you should automatically avoid an epi just because of HCM.

    I would attach a pic of my son if I knew how to, but I don't think I can on this board.

    Cheers,

    Cynthia

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    [Re: Just been diagnosed with HCM]

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

    Date: 07-28-02 13:05

    Cynthia,

    At this time there is not a way to attach pictues - hoping to fix that in the future.

    RE epidurals there was a presentation at the American Heart Association in 2001 that stated that epidurals should be avioded in those with HCM. This was an Italian study and it was clear those who recieved epi had more problems and even death in 2 cases.

    BE CAREFUL LADIES!

    TALK TO YOUR doctors, There is a great lack of knowedge in the cardiology community regarding HCM so imagine it is far less common for an OB to see HCM, they do not understand the disease well enough in most cases to know all the potential problems. This does not mean in any way that those with HCM should not have children - just be prepared and help educate the doctors.

    Best Wishes,

    Lisa

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

    [Re: Just been diagnosed with HCM]

    Author: Cynthia Waldman (---.dsl.lsan03.pacbell.net)

    Date: 07-29-02 13:53

    O.K., so I have a question. If you aren't supposed to have an epi when you give birth, what do they recommend as an alternative? Before I delivered I researched the alternatives, and a spinal block didn't seem to be any better than an epi in preventing blood pressure dives. Therefore, the only alternative that I could think of was a general and a c-section, and I didn't want that. For that reason, I decided a carefully monitored epi would be ok for me. I met with the anesthesiologist ahead of time, he spoke to my cardiologist, and so when it came time to my delivery (which was induced, by the way, to avoid potential problems), I felt comfortable that everyone knew what they were doing.

    It seemed much worse for my heart, as well as my well being, to deliver without any pain killer, and I really wanted to have a vaginal birth.

    By the way, I delivered at Cedars-Sinai, a major medical center and teaching hospital, not some backwoods health clinic.

    I really believe that everyone knew what they were doing, and therefore I went ahead with the epi, fully aware that there could be potential complications, but confident that I had done all I could to prevent them.

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

    [Re: Just been diagnosed with HCM]

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

    Date: 07-29-02 20:17

    Cynthia,

    You in fact did do some good homework and you have outlined your options. That is the most important thing. You made informed decisions with your medical team. There is not a 100% safe way to have a baby --HCM or NOT-- You have to make careful informed choices all the way around.

    Some people with HCM have more problems with hymodynamic issues while others are more sensitive to rythm issues. This factor may play a role in who responds in what manner to different drug (birth related or otherwise).

    I too wanted a vaginal delivery...however my heart didnt! I had some minor arrythmia's as I was going into labor...the docs called the shots and a C section was ordered....then the lovely story above unfolded.

    I think one of the biggest lessons I learned at the birth of my daughter was... you may not get everything the way you want...but sometimes the outcome is just as sweet!

    Best Wishes for a wonderful delivery!

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