[New HeartCenterOnline Newsletter article on ablation....]

Author: Tom (12.43.64.---)

Date: 10-29-02 09:13

Just got my latest issue and there's a link to a Reuter's story on ablation:

<a href="http://www.heartcenteronline.com/myheartdr/home/research-detail.cfm?reutersid=3080&nl=4">Link to the story</a>

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

[Re: New HeartCenterOnline Newsletter article on ablation....]

Author: Tom (12.43.64.---)

Date: 10-29-02 09:14

Okay, the above was my attempt to get the link to post as a link. I'll just paste the URL and you can copy/paste it in your own browser's address bar:

http://www.heartcenteronline.com/myh...rsid=3080&nl=4

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

[Re: New HeartCenterOnline Newsletter article on ablation....]

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

Date: 10-29-02 11:27

Hi

I just want to point out to readers of the article that the doctor is quoted as saying that young patients in their 30s and 40s don't want major surgery and implies that this would be their preferred procedure.

However, most HCM specialist feel that anyone under 50 is not an ideal candidate for ablation.

Just reinforces that there is no one fix for everyone --we all need our own evaluations.

S

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

[Re: New HeartCenterOnline Newsletter article on ablation....]

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

Date: 10-30-02 08:51

Again the reminder...

Ablations or myectomies ONLY help a very few with HCM. Either procedure are not cures, and I can not help but feel the medias/journals spin on this is over blown.

Sorry...but this is taking away attention from research, treatments and options that will help so many more.

Hats off to all those helped by spetal reduction..we are very happy for you all!

Remember there are so many more of us that need more options...it would be nice to see more attention there.

Lisa

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

[Re: New HeartCenterOnline Newsletter article on ablation....]

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

Date: 10-30-02 19:29

On a personal note, I feel that the septal alcohol ablation should be given this fair attention! For people like my father, I think it is absolutely wonderful, positive and mentally comforting. The myectomy had 40 years of attention ... finally there is another form of treatment available to others that do not want to go through with the myectomy (provided they are a true ablation candidate) for whatever their reasons may be! Just out of curiosity ... how is this publicity taking away from other research options? Thanks, Erica

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

[Re: New HeartCenterOnline Newsletter article on ablation....]

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

Date: 11-02-02 08:07

On a personal note, I feel that the septal alcohol ablation should be given this fair attention! For people like my father, I think it is absolutely wonderful, positive and mentally comforting. The myectomy had 40 years of attention ... finally there is another form of treatment available to others that do not want to go through with the myectomy (provided they are a true ablation candidate) for whatever their reasons may be! Just out of curiosity ... how is this publicity taking away from other research options? Thanks, Erica

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

[Re: New HeartCenterOnline Newsletter article on ablation....]

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

Date: 11-02-02 08:50

Dear Erica,

Lots of press about a procedure is fine. No one at the HCMA is saying "don't get an ablation" --we are simply pointing out the ommissions in news articles. We would do the same (and do!) for any other inaccurate article about HCM and/or HCM issues.

The problem with most ablation articles is that they imply that anyone can "choose" an ablation if they want one --regardless of their appropriateness for any particular patient. While you just wrote "provided they are a true ablation candidate" --THIS is the statement/idea/concept that is lacking from most articles about ablation in the popular press. Most emphasize the first part of your statement: "treatment available...to others that do not want to go through with the myectomy" ---"do not want" being the operative phrase.

No one "wants" an ablation or a myectomy and what we see in more and more press is the idea that a patient should and would choose an ablation over a myectomy unless they were a complete idiot. This does everyone a disservice --the doctor who is trying to provide the best care, most appropriate and successful therapy and to the patient who is entitled to unbiased, accurate information as well as the best treatment appropriate for them.

Erica, myectomy and ablation both carry big risks. It isn't as though they are two kids and the younger brother is feeling left out. They are both big, bad procedures that need to be treated with respect and care.

Lisa's point was that "yes, this is all important, but there are other important issues too." EG, HCMers like me --I'm not a candidate for ablation or myectomy of any kind and I'm running out of options. I'm at a high risk for stroke and heart attack and developing end stage HCM because there are no other options for me. I have one more medication to try, but if it doesn't work --too bad for me."

You indicated in previous posts that you wish your dad would consider seeing a specialist instead of demanding an ablation without any consultation. Isn't this exactly what we are talking about here? THe fact that your dad is making decisions based on what reporters say instead of what the best doctor can tell him about what is best for him?

Sarah

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

[Re: New HeartCenterOnline Newsletter article on ablation....]

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

Date: 11-02-02 20:16

Oh well... :'(

All I can do is pray that his decisions work in his favor. He is suffering both physically and emotionally/mentally from his symptoms and it saddens my family to watch him deteriorate. We are all disheveled about the unknown. I pray for him, my family, and I pray for each and every one of you. Thanks for reading and responding. ~ Erica

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

[Re: New HeartCenterOnline Newsletter article on ablation....]

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

Date: 11-03-02 02:21

Dear Erica,

Does your dad have internet access? Can you get him on the message board to read the board for himself? There is not a single person on this board that doesn't understand what you and your family are going through. But your dad has to make this journey for himself and it would help him if he could be a part of the support here on his own, of his own volition.

take care,

Sarah

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

[Re: New HeartCenterOnline Newsletter article on ablation....]

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

Date: 11-03-02 09:22

Sarah ... thanks. He does have internet access and he reads the board weekly. He shares his concerns, and I post them. Now getting him to post for himself, well that's another story! I doubt I will see the day when his name appears! That's just how he is. : )

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

[Re: New HeartCenterOnline Newsletter article on ablation....]

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

Date: 11-03-02 16:35

Dear Erica's Dad - -

I am glad to hear that you have been here on the message board. I know this process is stressful, at times confusing and requires a great deal of family communication. I hope you have learned a great deal from the web site including what questions are important to know prior to a procedure and when to know when a procedure is right for you. Your daughter cares about you immensely, she has been true advocate on your behalf. In the weeks ahead you will make some decisions as to how to proceed with your healthcare. From what I understand you're headed to a center that is rather well skilled in alcohol septal ablation and I wish you great success should that be the option you choose. Should that option not be appropriate for you for some reason, I hope this message board has shown you there are other options available to you.

If there's anything we can do to be of assistance please do not hesitate to call on us. I ask you to remember one extremely important statistic in HCM community.... Most people with HCM live to or surpass the average age of mortality (73 years) in the United States.... This is a disease that is compatible with life!

Wishing you great success,

Lisa Salberg

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

[Re: New HeartCenterOnline Newsletter article on ablation....]

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

Date: 11-03-02 22:06

Lisa ... THANK YOU so much! You truly are an AMAZING woman! We are so grateful to you, your support, your hard work, and your dedication to those with HCM!

Dad ... Happy 58th Birthday! I had a wonderful evening with you, mom and Stephanie! I am so glad we were able to spend another Birthday together as a FAMILY! I love you! You are the BEST father in the whole wide world! For 29 years you have been my role model and my best friend (next to Mom, of course!) In one week from tomorrow we will be in the car on our way to the MUSC! I’ll be by your side the entire time and I pray that everything goes smoothly. And please remember, as Lisa mentioned, there are other options if this one doesn't work to your advantage! Just have faith and know that you are loved! XOXOXO ~ Love EB – your first-born and your biggest fan!