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What the HCMA means to me...


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  • What the HCMA means to me...

    [What the HCMA means to me...]

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

    Date: 08-21-02 19:49

    Well guys here we go. If you want added services, more information, greater access to medical experts, more support, more meetings, more laughs and more HCMA then I am asking you all for a little favor. We have just submitted several major grant proposals and I think it would be wonderful if those who will be evaluating our requests could see ..in your own words... what the HCMA means to you. So post away and tell us what the HCMA means to you and feel free to tell us what you would like to see in the future.

    Thank you!

    Lisa Salberg


    [Re: What the HCMA means to me...]

    Author: beth waxman-arteta (---.mvbms.com)

    Date: 08-21-02 21:33

    Dear Lisa ---

    It's been quite some time since we met.

    The HCMA to me, is a potentially life-saving and inspiring organization.

    I believe with all MY heart (non-HCM ) that if my precious friend had met you she might be alive today.

    She would have understood:

    Her condition was not a sentence for early death.

    Her condition could be well-managed, even if that took a bit of work to get meds right et al, and she could

    live a long and productive life and do most everything

    she wanted to do.

    She was at risk for sudden death and should have an ICD.

    There are a lot of other people out there like her who could

    understand what she was going through and could help her understand what was possible and that having something like an ICD in her was really no big deal. (That may have taken a lot of effort from many people!)

    That getting treatment from specialists in the disease was not only possible but really important.

    That she had many more options than she realized.

    What do I want from this organization? Absolutely nothing for me. But for others, I want to see public awareness of HCM to be at a level appropriate to a disease with an incidence rate of 1 in 500.

    So that people out there know,there is help to be had from all of you.

    Wishing you all the best,

    Beth Waxman-Arteta

    p.s. Hopefully will be in touch with you in a few months with some help for you to achieve your goals.


    [Re: What the HCMA means to me...]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-21-02 22:53

    To Whom It May Concern:

    I am very proud to moderate the HCMA's web site message board. I truly enjoy being able to provide the best answers I can; and direct people to the information they need to make very hard and important decisions.

    The Hypertrophic Cardiomyopathy Association is a unique organization that fulfills a vital role in the health care of anyone with Hypertrophic Cardiomyopathy.

    HCM is a unique disorder that has many complicated facets and it still not well understood by many in the health care community. Out-dated ideas and fallacies are still widely touted by general practitioners and cardiologists who do not have the means, ability, or usual need to educate themselves on the latest treatments for HCM. This knowledge gap is filled by the HCMA's educational efforts that range from patient to practitioner.

    Dr. Barry Maron and Lisa Salberg have written an excellent guide for patients with HCM and the HCMA has a special information packet that they send to doctors as well. Doctors who know of the HCMA will frequently call the organization _before_ they deliver the diagnosis to a new HCM patient so the HCMA can coordinate its support with the doctor.

    Members of the HCMA have access to the latest research on treatment and genetic testing as well as the ability to meet and develop deep bonds with others who share their experiences with HCM. The guidance and support that a group like this provides is unequaled in any personal or family counseling situation as most professionals do not specialize in chronic disease support. Family members may have a difficult time in providing support as they have their own fears and misconceptions about the disease as well.

    Some of the HCMA goals include national education and awareness programs to promote screening and diagnosis, particularly in varsity and professional athletes who are at grave risk from undiagnosed HCM and other related heart conditions.

    Increased funding would also allow for the HCMA to have a full-time counselor on hand to offer support to newly diagnosed patients, grief counseling, not to mention just helping people through tough times or tough decisions about treatments and surgeries.

    The HCMA is truly a labor of love, born out of grief for the loss of a loved one. Every member of the HCMA knows why we were all called together and we are saddened that Lori Flanagan is not here to raise her children. However, we know that her passing created this incredible organization that has saved lives, many times over, and it is that legacy that the HCMA is committed to.


    Sarah Beckley


    [Re: What the HCMA means to me...]

    Author: Amy Nierman (---.tnt2.seymour.in.da.uu.net)

    Date: 08-21-02 23:27

    I found this site a week ago after I got the results back from my 18 month old sons echo. I wasn't really concerned because the doctors said that it's difficult to read the echos of young children and he may not really have this.

    I personally had an echo almost a year ago with "something" that was genetic. I didn't think what they thought my son had and what I had were the same thing until 5 days ago when I asked to get a copy of the echo report for my son and myself. In those few minutes I looked at the reports, I felt panic.

    I found this site and have felt so at home. If it wasn't for the HCMA, I wouldn't be going to see a cardiologist for the first time. The HCMA helped me see that both my son and I need to see a cardiologist. We both have appointments plus my father to see if he's the genetic link. And Lisa helped me to find a doctor - even if we live in the middle of no where.

    I guess what's the hardest is the "what ifs". Living in a small community in Indiana my son will attend a Lutheran School. Because the school is small, everyone plays sports. Because this is Indiana, basketball is the craze. Although he is only 18 months, I already wonder if he'll be able to do the things his sister has been able to do - play t-ball, socceer, etc. And most of all I wonder if he'll be able to help his dad out on the dairy farm. For the first time the tears are coming. I've been so busy setting up appointments and updating the grandparents that I haven't had time to let it all sink in. I know that from reading the message boards there are a lot of great people out there that can help me get through any bad times and celebrate the good ones.

    So I would just like to say thank you for sharing your knowledge, expertise, humor, and love. Because that's what the HCMA means to me.


    [Re: What the HCMA means to me...]

    Author: Sue Harry (---.58.239.188.Dial1.Tampa1.Level3.net)

    Date: 08-22-02 00:16

    By the best stoke of luck I have had in a long time I found the HCMA site about a month ago while searching the internet for information about my condition. I was diagnosed about 12 years ago but have had few problems until recently. Because of a recent hospitalization my cardiologist discussed with me the need for possibly a myomectomy or alcohol ablation at a specialty heart center.

    I have been a nurse for over 30 years. However my background has not included a great deal of experience in cardiology. So when my Dr. briefly discussed my diagnosis and my options I began to search for some answers on my own. Throughout my career I have been involved with patient education in some specific areas and encouraged people to become involved in support groups. But not until now did I truly realize what an impact this has for someone facing a serious medical problem. The support and understanding of others going through the same thing means so much. To be able to share worries and concerns truly lifts a heavy burden and makes you not feel so alone.

    As so many have indicated in their messages to this board they have gone to fine physicians with good reputations. However there is so much about our particular cardiac condition that is unique it requires a specialist to really recognize what may be happening when someone presents with the variety of symptoms that we can have. It appears many fine "general" cardiologist have limited information on HCM or HOCM.

    The information I have found from the people who share their stories on this site has been invaluable. For the first time the data I was reading on copies of my latest ECHO reports meant something. As I progressed in my search to find a specialist the testimonies by others led me to further research and I now have an appointment scheduled in Cleveland next month. When some insurance issues came up Lisa Salberg spent a great deal of time talking with me and making suggestions on how I might best approach the problem. On a lighter note just as I was starting to try to find out more about hotels didn't someone send out a message with lots of info about area lodging in Cleveland.

    It is my hope that those organizations who may give grants to this HCMA site will see what a valuable service it provides in so many areas to patients and families.With the necessary support to allow this site to expand professional education for physicians and nurses might be included which would help bring more needed awareness to this cardiac condition.


    [Re: What the HCMA means to me...]

    Author: Glen (---.com)

    Date: 08-22-02 08:34

    Lisa, I have mentioned several times on several postings that I was diagnosed over 30 years ago at age 21. Back then there was no one, no group to turn or talk to, not even the doctors knew that much. I was convinced I would not live that long, my first year after diagnosis was **** with panic attacks. I thought I was all alone and basically was.

    When I discovered this site about 6 months ago I thought God I could have used this way back then. I see so many people who have just been diagnosed showing the same fear and uncertain future I did getting the suppoert and information from this site they need to help them over the initial shock of finding out they have heart disease for the rest of their lives and how to deal with it. Then get follow up support from you and all that post.

    It has also armed me with the necessary information I need to better question and understand the doctor when he talks about obstructed, gradient etc. On my last visit I think he was a little taken back by the intelligent questions I was asking because of the info I got from this site and all the people posting. I left him feeling better about my condition than I have in many years.

    Lisa/Sarah I don't believe you guys and your support staff know just how much good you guys have done.

    Thank You



    [Re: What the HCMA means to me...]

    Author: Donna Jesaitis (---.proxy.aol.com)

    Date: 08-22-02 10:54

    Dear Lisa and all,

    By an amazing stroke of luck, spurred by an incredible amount of frustration, feeling that his condition was worse and he wasn't getting the appropriate care, my brother Matt found the HCMA and Lisa Salberg on the internet.

    Matt was diagnosed with IHSS at age 15 and at age 20 he had a myotomy and myectomy. At the time, this appeared to be a miracle cure. He was on medication for a time and then for several years was off all meds. Approximately 10 years ago Matt was again symptomatic. He was living in Virginia at the time and for the past 5 years he has been in Florida. To make a long story short, Matt is now in end stage of this disease.

    This past spring Matt found the HCMA and he and I traveled to NJ for the annual HCMA conference. To say this was emotional is an understatement. My shy brother shared his story with strangers, we met Lisa Salberg, we were informed, we felt we finally had some answers and direction and most important, we met Dr. Barry Maron, who, after listening to Matt, urged him to visit his office in Minneapolis.

    Our trip to the Minneapolis Heart Institute was for July 26. In early July, Matt passed out at work (Reedy Creek Energy in Disney World) and was airlifted to Orlando Regional Medical Center. Matt had had a cardiac arrest but still no ICD!

    We, Matt, his 2 children and myself made the trip to the MHI and met Dr. Maron and Dr. Johnson. We finally have direction. They sent their prognosis and evaluation to Matt's NEW cardiologist (the 5th in 5 years) who acted immediately and implanted the ICD as his lifeline. Matt is now in the process of being accepted and evaluated for a heart transplant at Florida University Hospital in Gainesville. It is, so far, a long process, simply by the fact that Matt has to call and try to keep on top of things. Hopefully persistence is the key. In the meantime, Matt is back at work. All of his co-workers in Disney have taken a CPR class and the department has bought a portable defibrillator.

    Now, however, he is fighting with his insurance to pay for this trip to Dr. Maron. Be that as it may, Matt, my 39 year old brother, has hope for the first time in many years for a future.

    Whatever the outcome with his insurance, the trip, I feel, was worth Matt's life. All thanks to the Hypertrophic Cardiomyopathy Association, Lisa Salberg and Dr. Barry Maron.

    Thanks for listening....Donna


    [Re: What the HCMA means to me...]

    Author: Brian Cole (---.server.ntl.com)

    Date: 08-22-02 18:04

    WOW where do you start well i am in England and although there is a british web site,i do not like to say but the HCMA is so far advanced it is unbelievable.My HCM is minor,not like some of the members that have to struggle with not only life itself but looking for good ,sound and honest information that the HCMA provide

    If its for advice Lisa will reply EVERY time.Just a comforting word Sarah B is there EVERY time. HCMA provide help and support that no other organisation can provide.I am thousands of miles away like other members are yet when you read the message board you would think they were neighbours People write and apologise for not visitnig as often as they like.People thank members for help,advice and just for being there.Sorry but that is priceless.Keep the good work Lisa,Sarah and all who participate with HCMA



    [Re: What the HCMA means to me...]

    Author: Nancy Sarvis (---.access.naxs.com)

    Date: 08-22-02 23:15

    The HCMA is a wonderful storehouse of information for people who have HCM or for their families and friends. The cardiologists I've seen so far seem to have limited "Textbook Information" to treat us by. This information can be outdated. So much is being learned about HCM. But doctors that only see 1 or 2 patients a year don't always stay up to date on current information available.They don't accept the fact that chest pain or fatigue can be a symptom of HCM. BUT..on the message board of the HCMA I can respond to other people with this disease and see symptoms very similar to the ones I experience. This does so much to remove the isolation I feel on days when I'm battleing chest pain while others around me have a life.The HCMA has helped me decide on a specialist that can help me. Here is a place I can ask questions that only the person who has walked the road before me can answer. The HCMA works hard to meet the needs of the people it serves and we can be very needy people with no where to turn. I have lived with this disease a while but I still need to be able to ask questions because life in general can change and so can a person's heart. I'm very grateful for the HCMA. I'm even more grateful that it is there for people that are newly diagnosed or for those that have lost loved ones to this disease. Thank you all for your support.


    [Re: What the HCMA means to me...]

    Author: Dolly W (---.proxy.aol.com)

    Date: 08-23-02 11:49

    For several years I have been frustrated with this disease. I didn't understand it (still don't) and I know the medical "professionals" didn't understand it either. I've spent many hours/days of my time being poked and examined by those same individuals, only to be told to lose weight and that should solve my "problem". I've endured tests for things not even related to this illness (ie: lupus, neurology problems, etc.) I've felt like the freak side show at the circus.

    In the past year, I have educated myself about HCM, and took pride in the knowledge that I'd gained. However, since finding the HCMA, I realize that there is so much more going on with HCM than I thought I knew. I also discovered that I am NOT alone. It surprised me how many people are living with the same illness/symptoms as myself.

    Lisa and Sarah have shown me that there are more treatment options available other than those offered by my local cardiologists. They also drive home the importance of seeing a specialist (which we need more of) that knows how to deal with HCM and it's multiple symptoms.

    In the short time that I have been visiting the HCMA website, I've gained more than knowledge; I've gained an entire support group. This has been invaluable to me. Thanks so much to everyone involved. Keep up the great work!

    Dolly W

    New Orleans, LA


    [Re: What the HCMA means to me...]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 08-24-02 11:54


    I believe the HCMA saved my life. As you are aware there are few doctors and centers which truely understand this disease. I live in a very large city and go to a heart hospital that was ranked as one of the top 50 in the United States. With all these credentials if it had not been for the HCMA I would have done what the doctors told me and not sought a second opinion. After reading this site, I decided I needed a second opinion by an expert. Guess what, those great local doctors missed something. I would have let them perform a procedure which is not optimal for me and could have caused me to have to have 2 procedures instead of one.

    The work done by Lisa Salberg is fantastic and her efforts are incredible. I urge any grant reviewers to see how great a job she has done with so few resources. I have seen that she co-wrote a book on HCM and the fact that she is invited by physician experts in the field to speak at conferences is a testimony to her effort and hard work. I am now going to the Cleveland Clinic for my health care and I have seen the HCMA listed on the Cleveland Clinic website. A better testimony than the top rated heart center I cannot think of.

    Gerald Salzman


    [Re: What the HCMA means to me...]

    Author: Mary Catania (---.proxy.aol.com)

    Date: 08-25-02 16:09

    Dear Lisa,

    The HCMA is a wonderful support group for me. I was diagnosed a year ago and discovered your site shortly after that. You strongly advised me to seek the care of an HCM specialist. I was so surprised that you spoke to me personally by phone and took so much of your time with me. I never expected that kind of personal attention. The packet I received upon joining was very informative. When I was considering having an ICD implanted, I turned to the message board for support in making that potentially life-saving decision. All my questions were answered quickly and honestly by many members. After the implantation I received useful advice regarding my discomfort at night. Whenever I read the message board I learn something new.

    To sum it up, the HCMA is a group of caring people who share their experience and knowledge of HCM. God bless!



    [Re: What the HCMA means to me...]

    Author: Amelia Haynes (---.proxy.aol.com)

    Date: 08-26-02 22:11

    First, let me say that I am a senior and according to the statistics, I have lived beyond the expected life span. But you have to be one to know that we as senior citizens still have a lot of living to do and the key word is to stay healthy. However, seemingly, this was not to be for me for about 5 years ago I began having SOB that was very hard to detect in the doctor's office. Doctors just could not be convinced that I was having a heart problem for at rest there were no symptoms except for the regurg of the mitral valve . Had some CHF and the doctors were willing to give me a bit of lasix but other than that I was shuttled from Cardiologist, to Gastro Specialist, to GP and back through the cycle again. This is not your heart the Card would say; this is your heart the GP would say, and on and on. Finally, I did have to rush to the ER with a total heart block and consequently a pacemaker was implanted. But the SOB was still a problem and with further testing/study I was told that I had Hypertrophic Cardiomyopathy but they would take care of it with medication. Uh huh I replied with my usual faith that the medical people will take care of me now that they know what it is they needed to treat. But they went through the gamit of meds and still I was short of breath. My son went to the Internet and found Lisa and the HCMA, she mailed brochures and info of her first HCMA meeting and we made plans to attend. There we began to get some insight into what HCM is all about; didn't understand it but found a lot of people with more problems than I had. During the coming year I researched medication which according to my research was for "end stage" and I could not believe that I was actually in "end stage." I talked to Lisa and she said that if I could be at the 2d annual meeting of the HCMA she would see that I talked with Dr. Maron and Dr. Lever. Of course we flew to NJ for the meeting. Now we had attended 2 of the yearly meeting and were beginning to learn more of the disease and what my options were. When time for the 3d annual meeting rolled around we made plans to attend but this time we would return through Cleveland and see Dr. Lever. An appointment was made and one of the first things Dr. Lever said was that he wanted that pacemaker checked. They did and they found that it was non-functioning! Why had the 3 cardiologists back at home not found it, they had reminded me of how old I was? A new pacemaker was implanted and I had a new lease on life for a while; but then the mitral valve finally completely deteriorated and I needed to have it replaced. An SOS call to Lisa and she tried to talk me through my concern and fear and to make me understand that I had to have valve replacement and/or a myectomy. She even hooked me up with another senior, older than I, who had undergone the same and was now well and active. She talked with Dr. Lever and between the two of them they threatened to "go to Texas and put me on a plane for Cleveland." That was a year ago and I did go to Cleveland, had the surgery and was able to go to Europe with my husband in the spring of this year, and we are dancing weekly. How is that for a story of my appreciation of the HCMA? Without the contacts and knowledge I have gained through a simple research on the Internet I think I would not be alive now. My thanks and sincere gratitude to the HCMA and all those who are working so fervently to spread the word.
    NOTE: This is a post from the previous forum message board.

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