what the HCMA means to you...

[Lisa Salberg]

Hi,
Every day here at the HCMA we hear great feed back from people who are very happy we are her to provide services to the HCM community. I am writting something up - and I wanted to take some quotes from people who have been impacted by the HCMA. I was hoping some of you can offer me some quick online statements of what the HCMA means to you or what the services we have provided have meant to you and your family.
Thanks for your input!
Lisa

[Cynaburst]

Without the HCMA, I would not have received the proper treatment for my HCM. On numerous occasions throughout the last decade the HCMA has provided valuable input and access to information which I would have never found on my own, and I am a researcher by trade.

Because of the HCMA, I was able to meet the top doctors in the field and ultimately, when it was time for me to have a septal myectomy, I knew exactly where to go and who to call. In fact, I told my local doctors it was time for my myectomy and then I self referred to the HCM experts who performed my surgery at a HCM specialty center -- and it only happened because of the HCMA.

[gfox42]

The HCMA's assistance was essential to me when my heart obstruction became severe. My cardiologist had told me that I needed a septal myectomy, but since he hadn't previously had a patient who needed one, he wasn't sure where to send me. A call to the HCMA gave me the necessary information as to who to call and what to say. Three weeks later I traveled to a specialty center and had the surgery. The HCMA office gave my wife a lot of useful information on how to help me recover from the surgery, and I got a lot of additional help from people on the HCMA's discussion board. When new issues come up with my HCM, I continue to get good advice from people on the HCMA discussion board. What a valuable resource!

[Paula&Dave]

When we first found the HCMA, we felt like we had won the lottery. The HCMA has been invaluable to us in our quest to understand this disease and obtain the best treatment available. The Annual Meeting provides unprecedented access to cardiologists specializing in HCM as well as an opportunity for patients and families to interact and obtain the latest research and medical information.

[Reenie]

The HCMA has been an invaluable tool for me and my family to help us understand HCM and its intricacies. When I found the HCMA nobody I knew had ever heard of HCM. One call to the office and I totally understood not only my husband's condition, but what it meant in the long term.

The HCMA staff has been accessible any time I had a question about anything from specialty centers to medications to interpreting echo reports on my three children. I'm not sure where my family would be without the HCMA.

[adpsmp]

HCMA:

H = Helpful!
C = Caring!
M = Meaningful!
A = Awesome!

The HCMA is a incredible resource in understanding HCM - it has provided me guidance in the diagnosis and management of this disease, and has brought great comfort to myself and my family. It has helped me LIVE with HCM.

A big thank you to Lisa, staff, and all of the forum moderators and contributors!

Andy P

[Largehearted]

The HCMA gave me the information I needed to become an active participant in my own care and treatment. I feel empowered to converse intelligently with the medical establishment! Forever grateful!

Leon

[ben's mom]

Your group gave us the names of 2 cardiologists here in Toronto for my son and husband. We got great treatment from these doctors that I would have been unable to find on my own. Thanks..

[Debbie]

The HCMA is my primary source of information on HCM. I learn what symptoms are common, I am not alone! My symptoms are not a figment of my imagination!

I get information here that I can't get anywhere else.

The HCMA has been invaluable to me. My knowledge of my disease is so much greater, thanks to the HCMA, and without it, I would be lost. I, unfortunately, feel that I know more about HCM than my cardiologist does.

Thanks, Lisa, and all the rest of you.

Debbie

[Pam Alexson]

The HCMA literally saved my life. I called Lisa in desperation one day in April of 2003 resigned only to seek how to get her book. I was in very bad shape medically, barely able to function, with very, very poor quality of life. Lisa's questions to me opened the conversation that resulted in my leaving a Top 10 Hospital where I was viewed as unique and not a candidate for intervention that presently existed.

Because of Lisa and her HCMA connections, within 2 weeks I was at a true HCM Center, seeing a true HCM Specialist Team and talking about my very possible candidacy for septal reduction. Five months later I was in surgery having a surgical septal myectomy, the third septal myectomy officially done at NEMC as a result of my HCM Clinic Evaluation.

HCMA means for me now, and meant then, more life for me, more life and living for me and my growing family. For me a true miracle!

Thanks HCMA!

Pam

[AnnetteP]

Lisa and the HCMA literally saved my life, also. Even though I was being treated for HCM and have an AICD, I was recently sent home from the hospital after a shot of diuretic and told it was "just some congestion". I called the HCMA because I did not know what to do and I knew something was very wrong. Lisa instructed me to go back to the hospital and not take no for an answer. I did. Two days later they tried to discharge me with the same diagnosis. I demanded an echo cardiogram and they finally capitulated. My worst fears were confirmed. I was in Class IV heart failure. I had a life saving myectomy and mitral valve replacement a few weeks later.

Being able to post questions to the HCMA message boards after my surgery was very helpful. I was able to find ways to help me sleep better and by sharing some of my experiences, hopefully, I was able to help others.

There is no way I can give enough thanks to Lisa, the HCMA, or those that financially or otherwise support this group.

Thank you all for the REAL life you have given me and my family!

Annette Puller

[tyreke28]

What does HCMA mean to me? Well if it were not for Lisa I do not...no, I know I would not be here to write this message. Lisa helped me find "my angel", Dr. Martin Maron at NEMC. The week before my myectomy in December of 2005 I was not able to walk 25 feet without feeling that the floor was my best friend. Now I can do things that I did not ever think that I could do like climbing a mountain in Yosemite National Park. HCMA has also become my family because I know that I can vent, complain, ask questions, or just read good news here that will change my day.

Thank you Lisa and everyone here on the boards for being my family.

;)