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

Announcement

Collapse
No announcement yet.

HCM and all you folks on this message board

Collapse

About the Author

Collapse

HCMA FORUM ARCHIVE Find out more about HCMA FORUM ARCHIVE
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • HCM and all you folks on this message board

    [HCM and all you folks on this message board]

    Author: AdamP (199.88.72.---)

    Date: 10-15-02 02:23

    Hello,

    My name is AdamP. I am 22 years old and I have HCM. My father and uncle have both received heart transplants approximately 10 years ago and both are still going strong, although my dad is now in dire need of a liver transplant due to contracting Hepatitis C during a transfusion many years prior to his heart transplant. Anyhow, I do not have a terrible case of HCM (not so far anyway) but my thoughts constantly wander back toward the knowledge that things can change in a heartbeat if proper precautions are not taken, and good information not properly adhered to. Reading all your posts have really helped me cope with some of the difficulties of living with this disease. Like I said, my case is not bad and hopefully it never will be, but my brother also suffers from this disease and I pray that he, and everyone else suffering from this disease, will find it within their abilities to keep their heads high and realize that life can, and should, go on in a healthy, productive manner. My Uncle Bob (a heart transplant recipient) is an extremely knowledgeable doctor and has posted messages here in the past to provide useful information to those who may not be so lucky to have received it in the past. His knowledge and compassion have helped me infinitely over the years and I hope it helps you all as much as it did for me. To all of you out there with this disease, stay strong and keep your spirits up. I am really glad I get the chance to read some of your messages and I appreciate everyone being so candid in sharing their experiences with this disease on this message board. If there are any other young people out there (or anyone else for that matter) with this disease that have questions or would like to talk to me about anything I would love to hear from you.

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

    [Re: HCM and all you folks on this message board]

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

    Date: 10-15-02 02:42

    Dear Adam,

    Thank you so much for reaching out to other young HCMers. I am 33 and I was diagnosed at 13. I know that I would have had a much better experience if I had been able to talk to someone outside my family with HCM anytime between my diagnosis and when I finally found the HCMA a few years ago, but especially in high school and college.

    You have a great attitude around your HCM and life in general. I got to meet your uncle a couple weeks ago and he spoke very highly of his nephews! (Don't worry, he just said you guys were doing great --no details!)

    I hope you don't mind if I mention here that Robert P is planning on being at our annual meeting next June and he also wrote a book about his experience with HCM that is, sadly, out of print ("Raising Lazarus").

    I'm keeping my fingers crossed for all of you. I hope your dad gets his liver.

    all the best,

    Sarah

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

    [Re: HCM and all you folks on this message board]

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

    Date: 10-15-02 08:47

    Adam - It is nice to meet you. I had spoken with your dad some years back and know your uncle Bob as well. I am glad you found the board and hope to see you here from time to time. Please give my best wishes to your dad and let him know he is in my thoughts and prayers.

    Sincerely,

    Lisa Salberg

    President

    HCMA

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

    [Re: HCM and all you folks on this message board]

    Author: Dolly (Andrew's mom) (---.pressenter.com)

    Date: 10-15-02 08:49

    Hi Adam,

    Thank you for sharing your story with us. I hope you continue to do well.

    I bought your uncles book ("Raising Lazarus") about 7 years ago, right after my son was diagnosed. I had gone to our local college library searching for any information I could find on IHSS (It was more commonly refered to IHSS back then) I heard about the book in a magazine article I found and ordered it from our local book store. It was the first book I read that gave me any "real" information and I was so glad to have found it.

    I wish your whole family the best and pray your dad gets his new liver.

    Dolly

    mom to 13 year old Andrew (HOCM)

    Myectomy in '96

    ICD implant in '99

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

    [Re: HCM and all you folks on this message board]

    Author: BobP (12.147.94.---)

    Date: 10-15-02 09:46

    Adam,

    This is from your Uncle BOB. It was great to read your message on the HCM message board. We are all indebted to Lisa Salberg for creating the HCMA and this incredible websight. You and Ben make me proud about the way you have handled your disease. My message to all HCM patients is to get the best treatment available. Don't be afraid of Implantable ICD,s and any other treatment that can keep you alive. ICD's are only indicated for patients with a family disease of sudden death or patients who have already had a syncopal ( passing out ) experience that has been felt to be due to Ventricular Arrythmias (electrical abnormalities that come from the lower pumping chambers of the heart) as opposed to passing out due to obstruction of blood flow out the aortic outflow tract. All patients should be well educated about their disease. I recommend Dr Barry Maron's and Lisa Salberg's recent book "Hypertrophic Cardiomyopathy for Patients, Their Families and Interested Physicians." You can Order it through HCMA. Be well all of you and to you Adam and Ben remember I love you. L'Chaim to your Dad Yisrael and all of you out there.

    Bob Pensack, MD

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

    [Re: HCM and all you folks on this message board]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-15-02 11:19

    Bob ... Thanks for your advice. Looking forward to reading the book everyone highly recommends! And thank you for your supportive, encouraging, kind words!

    Shalom!

    Erica Beth Stolzenberg

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

    [Re: HCM and all you folks on this message board]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-15-02 12:21

    Adam ... Shalom to you too! I hope you will post again soon. I enjoyed your entry!

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

    [Re: HCM and all you folks on this message board]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-16-02 22:12

    I can't help but wonder how many children with HCM are misdiagnosed each year with other ailments (ie. asthma b/c of their shortness of breath, depression b/c of their fatigue, anxiety-stress b/c of their heart palpitations at such a young age.)

    An update on dad ... he finally understands what his condition is (HOCM), he is less stressed, and I believe he is feeling better mentally because of all the knowledge and support he has received. His symptoms are worsening but his attitude has improved!

    An update on me ... because of this message board and each and every one of you ... I have gained a better understanding of HCM; I no longer fear this condition; I am not angry; I no longer want to know why. Instead I want to figure out 'how.' I want to assist you and the HCMA. I want to help spread the word on hypertrophic cardiomyopathy. I want to help reduce the number of sudden deaths in athletes. I want to help by promoting the importance of early detection ... I would like to see mandatory (pre-participation) cardiovascular screenings for young athletes (just to name a few of my wishes!)

    Please do not hesitate to contact me personally if you have any suggestions!

    I welcome your input! ~ Erica : )

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

    [Re: HCM and all you folks on this message board]

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

    Date: 10-16-02 22:37

    Dear Erica,

    Please call Lisa and let her know you want to help. She always has projects for volunteers to take on or can tell you where your help will be most helpful.

    For example, I had been a member for a year or so and I called Lisa and said "you need me to moderate the message board!" and she said yes. Now I'm writing the newsletter and other things too. (I'm a writer by trade.)

    take care --glad to hear your dad is feeling better emotionally.

    S

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

    [Re: HCM and all you folks on this message board]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-16-02 22:59

    Sara ... thanks. Check your hotmail account!

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

    [Re: HCM and all you folks on this message board]

    Author: karen (---.dyn.optonline.net)

    Date: 10-17-02 06:42

    Hi Adam,

    I haven't been on the message board lately. I'm trying to catch up when I came across your story which sounded slightly familiar to me. Could your Uncle Bob be the same Robert Pensack, the author of Raising Lazarus?

    I read Raising Lazarus several times. I can see it on the book shelf from here! That book gave me tremendous insight into HCM. Also, my husband spent a great deal of time at NIH and some of the doctors mentioned were familiar to us. I loved the book!!

    I have often thought of your Uncle Bob and your family. Thanks for the update. How is Max? Uncle Bob, if you are reading this.......thank you very much.

    Adam, thanks for being there for our younger generation. This mutated gene has made its way into the DNA of 2 our children and it's comforting to know that you are there if they need to speak to a peer.

    Take care,

    Karen

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

    [Re: HCM and all you folks on this message board]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-17-02 07:47

    I remember reading a post that the book, Raising Lazarus, is out of print. Good news ... there are used copies still available for purchase! : )

    http://search.barnesandnoble.com/Oop...t=1&WID=184367

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

    [Re: HCM and all you folks on this message board]

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

    Date: 10-17-02 11:28

    I spoke to Bob at the HCM Summit -- He would love so have his book reprinted, yet the publishers do not see the value in it for them.

    Lets all do Bob a favor - he has given us a wonder gift in his book so the least we can do is send emails/lettes to the publisher and ask for reprints!!

    Hey Bob post the name and address of the contact person and we will push for a reprint!!

    Best to all!

    Lisa

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

    [Re: HCM and all you folks on this message board]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-17-02 11:33

    I ordered my copy this morning through Barnes and Noble! Inform me with the information. I would be glad to request a reprint! ~ Erica

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

    [Re: HCM and all you folks on this message board]

    Author: karen (---.dyn.optonline.net)

    Date: 10-17-02 17:25

    I would love to see Raising Lazarus in print again. I learned alot from that book! I will gladly send an email to the publisher requesting a reprint, just post the address. Karen

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

    [Re: HCM and all you folks on this message board]

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

    Date: 10-17-02 18:24

    I spoke to Bob earlier he is looking up the address and contact information and will post it.

    Lisa

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

    [Re: HCM and all you folks on this message board]

    Author: Amy N. (---.tnt3.seymour.in.da.uu.net)

    Date: 10-17-02 23:47

    I was at the bookstore yesterday and was wishing for such a book. Wishes do come true!!! Thanks for sharing the info.

    Amy N.

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

    [Re: HCM and all you folks on this message board]

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

    Date: 10-18-02 01:00

    Hey all,

    I read this book too, and yes it is a great book, but I would suggest that you NOT let your teens or kids read it as some very horrible things happened to Dr. Pensack and I still get the willies just thinking about it.He doesn't pull any punches and this is not a book for the faint of heart (sorry for the bad pun).

    I will be writing to ask for it to be put back in print.

    Sarah

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

    [Re: HCM and all you folks on this message board]

    Author: Terri (---.dsl.chcgil.ameritech.net)

    Date: 10-18-02 09:35

    Hi Sara---

    Thanks for that comment about the suitability for kids and teens reading the book. I'm still struggling with just how much information my precocious 12-year-old can handle when dealing with her disease. It's hard sometimes as an adult to deal with everything you come across---on the message board and elsewhere. Though I find comfort reading the posts, it also can be frightening. (And this comes from a person who believes knowlege is power.) I've been fully aware of my daughter's condition for 12 years, she's just come to understand it gradually over the last few years. Any by the way, who do you write for. I ask because I'm an editor in Chicago.

    Terri

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

    [Re: HCM and all you folks on this message board]

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

    Date: 10-18-02 10:23

    Dear Terri,

    Actually, I'm looking for a job. I've been freelancing since March when I was laid off from "Dancing USA" magazine. I might get an offer from "Crafts'n Things" magazine next week, but you never know.

    Who do _you_ write for? Feel free to e-mail me directly at [email protected].

    Have a good weekend,

    Sarah

    PS Dr. Pensack has some very strong ideas about what kids should and should not know about HCM. You may want to e-mail him, too.
    NOTE: This is a post from the previous forum message board.

Today's Birthdays

Collapse

There are no members with birthdays today.

Working...
X