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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  • newbie

    [newbie]

    Author: Adam Penner (---.wp.shawcable.net)

    Date: 06-25-02 20:52

    Hello,

    I just came from my doctor 4 hours ago, tells me I've got something called Hypertrophic Cardiomyopathy. I had no clue, so I did a google search and up came this site. I'm confused (and angry)...and in need of information.

    I'm a pilot, and I have a medical every 12 months. Dr tells me "you've got a murmor"...so he send me a heart specialist. At the heart specialist, I do a chest Xray, EKG, and a Echo (ultrasound) test. A week later he called me in and tells me about Hypertrophic Cardiomyopathy. I'm stunned. I'm 28 years old, about 20 pounds overweight, don't smoke or drink. Nobody in my family has this or heard of it.

    I have no problems like that are indicated in this site. I can walk 2 miles without trouble, have no pain in the chest, and only feel pain in my heart when a doctor tells me to stop flying. My Blood Pressue was 120/80.

    He wants me to take PMS - Metoprolol twice a day and check back in a month. This is also a shocker as I've never taken _ANY_ medication in my life.

    Because of all of this my medical is taken away from me so I can't make a living flying , the wording in the aviation doctors manual is exactly:

    "Obstructive hypertrophic cardiomyopathy poses a significant risk for sudden incapacitation and generally disqualifies an applicant from flying regardless of whether there has been surgical treatment. Applicants with minor asymmetric hypertrophy will be considered individually based on the degree of outflow obstruction and the nature of any arrhythmias."

    So the questions is this. What now? Is there sombody I should see? I've got the time to do it. I need somebody in the know.

    Adam

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

    [Re: newbie]

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

    Date: 06-25-02 22:35

    Dear Adam

    Welcome to the club you never wanted to join. I'm truly sorry that HCM has grounded you. You are not alone; a lot of HCM patients discover the condition without any warning whatsoever.

    However, HCM IS genetic. It can "hide" in a generation or it can be a new mutation (super rare), but since HCM has been misunderstoond for so long, many older people with "heart trouble" were not diagnosed accurately.

    Your parents and siblings should all be screened as a precaution. If you have children, they should be screened as well. There are threads on the board about this, too.

    To begin with, please call the HCMA office so you can talk to Lisa (the president) and she can help line you up with an HCM specialist. 973-983-7429.

    The doctor is correct in giving you a beta-blocker (metoprolol) as they are the first line defense, so to speak, for HCM. It will take some of the strain off of your heart from the hypertrophy and help it work better.

    Since they grounded you, I'm assuming that you didn't have a "minor, asymetrical" hypertrophy, but do you know this for sure? The numbers that you need to know are your septal wall measurement and if you are obstructed --does the hypertrophy prevent the mitral valve from closing properly. Everyone's HCM varies, even within families. The outflow gradient is the pressure of the blood leaving the heart (is that right, LIsa?) and is a gage of how well the heart is pumping.

    The aviation rules are probably based on the previous assumption (that has now been found to be false) that a lot of HCM patients just pop off without any warning. While this _can_ happen, it is only about 1% or so of the HCM population per year. An HCM specialist can review your tests and your family history to see if you have too many of the sudden death risk factors. IF you do, then there is a device (ICD) that they can implant in your chest that can reverse any arrhythmias immediately. Those risk factors include ventricular tachycardia, low blood pressure response to exercise, septal wall measurements of 3+, family history of sudden death and a history of fainting. Once again, all of these factors are considered on an individual basis. there are few hard and fast rules about HCM.

    Please make use of the HCMA and this board and know that it may feel like the end of the world, it is not. I don't know if you will be able to make a case for being able to fly again, but there is usually a reason for everything --even when it seems impossible that there could be. I'm 33 and I had a mini-stroke at 31 and had to change careers myself, so I know a little of how you feel.

    big hug

    Sarah

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

    [Re: newbie]

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

    Date: 06-26-02 08:19

    Dear Adam,

    I am sorry to hear that your diagnosis is not compatible with your occupation. I know many people will try to console you but words are not going to be very comforting for awhile. My “real job” is human resource management, so I am acutely aware that some ones occupation can sometimes appear to define them as a person. I can tell you this is not the case, you are more than Adam the pilot.

    I do not have great news on the pilot front as far as FAA regs go, I am getting conformation on this and I will post it as soon as I get it but here is my understanding:

    You cannot fly a commercial plane, however you may be able to be the co-pilot.

    In my opinion it is not worth a legal battle, as I know of a very prominent case, it was heard in Minneapolis about 2 years ago, where a federal court judge held up the FAA’s right to block HCM patients from being the pilot of a commercial plane. This block is regardless of post surgery –or even ICD implant.

    I know you have about a million questions and you are most likely very angry now, and will be for a while. If you want to talk about it I will be happy to speak to you. I will be in NYC all day today but will be available in the HCMA office for a short time tonight, I will leave 7pm-7:30pm EST open for you if you wish to call 973-983-7429. If this is not convenient call for an appointment and we will set you up ASAP.

    You may benefit from a review of your situation from a specialist in the field to confirm your diagnosis. This is not something I recommend to everyone, but because your occupation is so greatly effected I think it is warranted.

    Adam, please know your NOT alone in all of this and the fact you do not currently have symptoms should not be viewed as any indication your not affected by HCM.

    Best wishes,

    Lisa Salberg

    President

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

    [Re: newbie]

    Author: john jordan (---.public.svc.webtv.net)

    Date: 06-26-02 15:57

    hi adam, u sure have been handed a lot to deal with in this short period of time. i found out 2 1/2 years ago about HCM. i did not know much about it but knew i was not up to par. my stress test this past april was not good. cath in may show obstruction. im scheduled for double bypass, one or two valve replacement and myectomy on july 16th at cleveland clinic. im 56 and was stunned when they told me this minutes after the catherization. i hope ur further medical consultation will be of help to you. good luck, john

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

    [Re: newbie]

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

    Date: 06-26-02 21:50

    John - how are you doing? I know you must be getting ready for your procedure and that takes a great deal out of you - stress - just what you need ...right! you should read the joke under the name "sometimes you have to laugh" I think you may find it "extra" funny...given your line of work

    Best wishes to all.

    Lisa

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

    [Re: newbie]

    Author: Schrece Davillier (---.proxy.aol.com)

    Date: 06-27-02 15:41

    Dear Adam,

    I'm sorry to hear about your diagnosis. And how it has effect your career. Do everything you can to learn about HCM and take care of yourself. I believe you still have a great life ahead you . Don't give up.Stay in contact with Lisa Salberg, I believe she can help you and give you great information and advise. Sarah gave you some great information. My sister past a year ago.(sudden death) I know this is hard for you to swallow and its not easy to adjust but you can do it.

    Try and keep your spirits up , take care of yourself and let me know in the future how you are doing.

    Best regards,

    Schrece

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

    [Re: newbie]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-27-02 17:51

    Adam -

    I hope you can see from the postings about that many people care about what your going through and you are not alone in all of this.

    I also hope you have seen this is an unpredictable condition that can "strike without warning", therefore it is important to get yourself evaluated by doctors who really understand the condition.

    All the Best,

    Lisa

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

    [Re: newbie]

    Author: Martha (---.eonet.net)

    Date: 06-27-02 18:54

    Adam,

    Almost a month ago I wrote a similiar letter to the message board. My age is different, I'm older. I'm not a pilot, but the impact on my brand new job has been

    devastating. I do not have high blood pressure, blocked arteries, high cholesterol....etc. I take some medicine for heartburn and allergies and I DON"T LIKE knowing I'll have to take medicine forever!!! I REALLY don't like thinking I might have passed this on to my kids, either. In fact, in one of my latest "down"

    moments, I thought I'd just give up and go get a handicap sticker on my car!

    You are not alone. Lisa and these people really care about helping you cope with all the new information..... medical terms, medicines, diagnosis'.

    I had never heard of HCM, my parents both lived long healthy lives, or what I assumed was healthy until I started reading more about HCM. I believe my mom must have had it and possibly some of her siblings. Who knows......but for you right now, just know these are people are here to help you cope, air your frustrations and give you the most current information available on doctors and treatment anywhere in the country. Hang in there! Like Sarah said, Welcome to the club you never wanted to join! Since I had to join also, I'm glad I found this website.

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

    [Re: newbie]

    Author: Adam Penner (---.wp.shawcable.net)

    Date: 06-27-02 20:12

    You really take this situation personaly. Thanks...I'm amazed. The last few days are bizzare...really a nightmare situation. I live near Winnipeg MB, Canada. I'm part owner of a flight school: http://www.harvsair.com

    I'm dealing with a Dr. Smith in Winnipeg...he seems to know what he is talking about. He also told me not to play Hockey, Football, ect...walking, swimming, biking where fine, just don't push it to the max. Does this jive? What other limits should I consider? He told me nothing about that this was genetic. I have a 18 month old with another due in October 2002. It turns out my grandfather died of something related to his heart...still trying to find details about this...all I know is that he died when he was in his mid 60s.

    Do you have recommendations for experts on this condition in Minnesota? Or Canada for that matter? I was thinking of talking to the Mayo Clinic.

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

    [Re: newbie]

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

    Date: 06-27-02 21:21

    Dear Adam

    There are several US clinics that have HCM specialists and I think there is someone in Toronto, too. Please call Lisa at 973-983-7429 to talk to her about who to see. You will note that the names mentioned most often on the board are Dr. Maron of the Minneapolis Heart Center (the HCMA's medical advisor) and Dr. Lever of the Cleveland Clinic. However, there are other very qualified people as well.

    As for your exercise, yes, hold off on anything super strenous. Other things to avoid: Heavy meals, decongestants, alcohol, caffiene, cigarettes, dark chocolate (caffiene), grapefruit juce (interacts with beta-blockers), anything with ephedra, ephedrine, epinephrine in it (ie over the counter cold and cough medications or diet supplements). In short: no stimulants.

    take care and let us know how you are doing. We all know how hard this is.

    Sarah

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

    [Re: newbie]

    Author: DEBBIE L (---.proxy.aol.com)

    Date: 06-28-02 21:05

    I cannot say I know how you feel. I do not have HCM(yet, I am waiting on info about being tested for it). But my father was 38 years old, in the Air Force for 20 years and was chief of air traffic control at the base we were stationed at when he went up for his physical for flight statis and was told he had a heart murmur. My father was grounded from flights and was diagnosis with IHSS which is now called HCM. Because of his condition limiting him in his line of work, he retired a year later. MY father has gone on to live a very productive life and has been back in the FAA for the last 17 years. You have a wonderful advantage here because you have the ability to learn as much as possible about this condition and to also know that it is herditary. We did not learn of this until 2 months ago when my father was hospitalized. Amazing how doctors let something like "sudden death" in family members to escape them everytime they say my father. I wish you all the best and I am a very firm believer that some things come into our lives for a reason.

    Debbie L

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

    [Re: newbie]

    Author: susan (---.177-226.vldsgacbds.dial.optilinkcomm.net)

    Date: 06-30-02 00:16

    adam,

    i was 18 years old when i was diganosed with hcm, way back then called ihss. my father had just had a major heartattach, sudden death, we didn't even know he had ihss until after he died and his doctor told us and said it was heriditary. i had just applied to the airforce talked to the recuiter and was ready to go in, i wanted to be a pilot so bad, the airforce would not take me after they found out i had hcm, i was devestated. my father had been in the airforce 21 years and i was going to follow in his footsteps. i am 36 now and i have learned alot about hcm over the years. take it easy on your exercising, don't get dehydrated, drink pleanty of fluids when you get sick or are outside sweating. dehydration cause you heart to work harder.

    my father had a stomach virus, can you belive it a stomach virus and got dehydrated, was driving down the road and pulled over and died. he was 43 years old and hcm was still a mystery back then. he was on 30 mg of inderal a day. it still amazes me what doctors will keep from family memebers and patients when they have no idea whats going on.

    with all the technology we have today, so many new things have developed on how to treat people with hcm. there is no cure but hopefully one day there will be. i pray for it all the time. there is some relief from it, once you talk to a specialist he or she will give you an idea of what you can do. hopefully you will still be able to continue flying, will pray for you that this will happen.

    your in my prayers

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

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