Please, let us not forget...

[Eileen2345]

Recently, I've become somewhat disappointed with some of the information here on the HCMA website.

Please - let us not forget that HCM is different for mostly everyone.

Regarding my family, HCM does not fall into the catagory of a "normal lifespan" or a normal lifestyle.

My brother died suddenly at 34 yrs old from v-fib, he also had congestive heart failure. They wanted to put him on the transplant list.
As for myself, I am tired - exhausted every day, and I don't recover with just one night's sleep. I retain fluid every day. Simple tasks cause shortenss of breath every day. I have heart failure.
My brother and I have the more aggressive form of HCM.

For me there is not much that's normal about HCM.

In my perception, If a family member of someone with HCM read some of the comments made on this website, they would think that HCM is not that big of a deal.
Well - to me and my family - it is.

HCM is a chronic illness with no cure - HCM is a form of cardiomyopathy, which means a damaged heart muscle.

I don't want a family member of someone with HCM to think, after reading recent information here, that their family member with HCM should be like everyone else, with a normal lifestyle. Some can and some cannot.

Some people with HCM can travel by airplane for fun - I cannot.
Some people with HCM can bike ride - I cannot
Some people with HCM can work full-time - I cannot.
(I can work part-time.)

When I was married, if my husband at the time read the some of the comments here - He would have thought I was making more out of my heart condition. He would have said that I was faking my heart condition.
He would have seen the word "normal" and thought that's what I should be.

I sincerely request that there be a balance. Some HCMers are exhausted, and/or full of fluid - and some are not.
Some HCMers are disabled - some are not.

Thank you for letting me post this.

[Cynaburst]

Re: Please let us remember that HCM...

Eve - I am sorry you are not feeling supported on the website. You are of course right in pointing out that HCM is highly individual. Some people unfortunately have severe limiting symptoms while others don't. We certainly cannot generalize, and try to point out that each person has his or her own path to travel. While it is true that some people live a normal life span with HCM and have minimal symptoms, others are very debilitated. We try to help everyone, regardless of which category they fall into, find a way to feel better. But we don't want to harp on the negative. We need to encourage everyone to do whatever they need to so they can live a productive, happy life.

That thing that they have to do may be a medication change, a heart transplant, a myectomy, or whatever, but we don't want people to just throw in the towel and say, "well, that's it for me." There is almost always something else that can be tried, and the best bet is to visit a Center of Excellence where they have the expertise to deal with complex problems like yours.

That is what we are trying to get across. I am sorry if that message hasn't been what you have heard recently.

[Reenie]

Re: Please let us remember that HCM...

Eve, I know you struggle daily with your HCM. I know you do the best you can everyday and keep trying, but that your heart just won't let you do the things people with normal hearts can do. You're absolutely right that not everyone with HCM lives a normal, long life. I hope that when others read our posts they understand when we say "most" people with HCM live a normal lifespan without too big a burden from their hearts, but it's true that there are also those who, like you, have more symptoms and are more tired, have more fluid and heart failure, and various other symptoms.

We do our best to present a balanced view of HCM. Maybe we don't do a very good job at that, I'm not sure. However, like Cynaburst said, there are a lot of people who can benefit from the proper care and we encourage all to get the best care available to them. As you know from experience, those who have cardiologists who don't understand HCM often benefit from the expertise of the experts.

My hope for you is that your condition stabilizes and improves and that your health returns to you. May you continue to be an upbeat, positive influence to others in your life.

[mbcube]

Re: Please let us remember that HCM...

Eve - I too feel for you. One thing I try to convey is that HCM is very different for each of us. True, I do put a positive spin on thing - I'm a glass half full kind of person by nature. Your comments are spot on and needed to be said - thank you. The great thing about this forum is we all have a voice and collectively we share our perspective to help one another.
To play the Devils Advocate (another odd thing I do), any newly DX person who came home from the doctors office and googled HCM just sits slack-jawed staring at their screen reading some pretty scary stuff. A lot of what we do here is enlighten them that things may not be so dire, that its important to get the best possible care and to follow their doctors orders. I appreciate your comments, your valuable posts to others and will strive to be more balanced.

[Eileen2345]

Re: Please let us remember that HCM...

Thank you Reenie and Cynthia for your replies.

My main point about this is: With the recent deaths of beloved ones with HCM, the word "normal" has been used often here. And, I understand it is to calm the fears and questions of others.

That said - and I mean this with respect - You cannot and should not use the term "Normal" when referring to HCM.
It is mis-leading and a disservice to all of us who have HCM.

If a local cardiologist comes to this site for information, he/she is going to read "normal" and be mislead.

If someone who has worsening symptoms is applying for disability and Social Security reads the information here and sees the word "normal" - they for sure will not approve them.

I do believe this website generalizes HCM.

I do not see where this site gives detailed information about the different stages of HCM, and the possible and debilitating progression of HCM.

And I'm not saying we should just 'throw in the towel' - I understand there has to be encouragement, I'm not opposed to that - I'm opposed to using the word "normal."
Treatment options vary - I get that - I've been there - I'm still there - but not everyone can go to a center of excellence all the time for their care.


When Lisa, the president of the HCMA says most people with HCM live a nomal lifespan and/or a normal type of lifestyle - that is mis-leading to the public.
Again, you don't know who is reading this site for information; family members, local cardiologists, local doctors, Social Security investigators, and employers, to name a few.

[Frosty]

Re: Please let us remember that HCM...

I find it very hard to believe that you really think doctors are getting their HCM education by reading the postings of lay people or that Social Security is basing their approval or disapproval of disability benefits based on an internet forum.

I am sure that is not what you intended to say but that is exactly what I am reading...

If a local cardiologist comes to this site for information, he/she is going to read "normal" and be mislead.

If someone who has worsening symptoms is applying for disability and Social Security reads the information here and sees the word "normal" - they for sure will not approve them.

[Eileen2345]

Re: Please let us remember that HCM...

Frosty, how do you know for sure they're not?


"Finding it hard to believe" and knowing for sure are two completely different things.

[Midge Rollins]

Re: Please let us remember that HCM...

Eve, I know as one of the moderators I try to remain upbeat so as not to scare any of our newbies. They have so much information to go through out there and to figure out their own lives with HCM that there is no reason to say "this is a horrible disease and may kill you". In my own family it has manifested itself in very different ways. My father and I went the heart failure route, I moved onto transplant stage. I was diagnosed very early (back in the stone age) I was blessed to have Mayo in my backyard and they to this day our my crutch. My daughter, who unfortunately has been diagnosed is very asymptomatic and other than a small dose of medicine and an ICD is very active and works out daily. I could never have done that so we are each different and each one of us needs to find out the path our disease will take. I cannot tell anyone how this disease will behave in them and I would never attempt to do that. I can be here to help with any questions and try to remain upbeat and let them know it may be a new kind of normal for them but life it will be. I like Marc, look at my glass half full and that is how I will always be when it comes to my own health.

[Eileen2345]

Re: Please let us remember that HCM...

Midge, I understand what you're saying. Believe it or not, I too try to stay as upbeat as possible. And to give credit where it's due - Lisa is the one who told me to contact CCF. My local cardiologist said there's nothing they can do for me.

My biggest problem with all of this is: The word "normal."

For instance; diabetes is not normal. Some people who have diabetes have lost one of their legs, they go into comas, they have neuropathy and some with diabetes are fine. If The American Diabetes Association's website said, the lifespan and lifestyle for most people with diabetes is normal. That would be wrong and misleading.
The same goes for here.

Go to the American Diabetes Association's website and other websites for chronic illnesses. They are very clear about the facts of these diseases.

I have to go to work now, I will check back here later. Thank you.

[Midge Rollins]

Re: Please let us remember that HCM...

I kind of meant to say. It is a small percentage <than 4 that follow my route, so no case is the same. This does go for most chronic diseases. Not everyone loses limbs from diabetes but it does happen. Right now my husband is battling pancreatic cancer and his odds of surviving this are not near as great as mine were surviving HCM.

[Toogoofy317]

Re: Please let us remember that HCM...

I know for sure my doctors down here in Florida read this website! When I was in the ED on the 26th the PA said he looked up the info on here when his cousin died. Some states aren't as far along as others in care of HCM and this is coming from someone who has gone through it for 10 years.

I feel alot like Eileen. My disease progressed rapidly when I was 21 my EF was 85% in 2005 it had dropped to the low 50's 30% was in a 4 month period resulting in a drop everything and fly to Boston to make sure I was Ok. Despite NEMC telling me it was time for transplant the hospital in Florida told me I was perfectly fine. I couldn't move to Boston so that very well could have been a death sentence for me.
I saw my primary this week and I've not been feeling the best and so I literally got the pull yourself up by the bootstraps speech people with HCM live normal lives and it's not that bad. It took 10 years to get my local docs to believe that HCM could progress and it wasn't in my head. After my speech I can't help but wonder maybe she did happen to wander across this site after I brought up the Breedlove incident.
And I can definitely assure you I don't focus on the bad I'm too busy too. I just wish it would get back to like it used to where "everyone was different" was stated frequently.

I just hate generalizations. My two cents.

Mary

[gfox42]

Re: Please let us remember that HCM...

Here's what I see as the problem. Well, the problems.

1. Yes, everyone is different.

2. That said, it's true that most people with HCM do live about as long as anyone else, and mostly without huge lifestyle changes.

3. So when someone comes to this site for the first time, usually kind of freaked out by their diagnosis, what do they need to hear? There's no single answer, but many of them need to hear that, with proper care they will probably live a long time and not have big limitations. They also need to hear two caveats to that. One is that "with proper care" is crucial. The second is that there are no guarantees: even with that proper care, some people with HCM have very substantial symptoms that are not easily treated, and some of them do have big changes in their lifestyles -- and worst of all, we can't necessarily predict who those people are going to be.

4. Finally, people who have major symptoms and limitations are a very important part of this community. They need support, but they also need to not be seen as though they're somehow marginal.

So if anyone can think of how to say all that in one breath -- and sound convincing -- I'd really appreciate hearing it. I think it's inevitable that many threads will tend to be of one sort or the other -- either about really serious problems someone is facing, or about how a diagnosis need not be regarded as the word of doom. That may make it seem at times as though things are slanted either toward the overly cheery or the overly gloomy -- but I sort of think that's going to be inevitable in something like a discussion board.

Gordon

[Cynaburst]

Re: Please let us remember that HCM...

I agree with Gordon's very good explanation. We are all here to support each other, and while it is hard to be all things for all people, we try to do our best to help everyone no matter what their situation.

[j1plante]

Re: Please, let us not forget...

Eve - You brought up a very good point that a husband or family reading this site might think his wife with hcm is exaggerating about her symptoms since they will read a lot of positive things and probably tend to focus only on the good. Thank you! I feel supported just knowing I'm not the only one this happens to.

On the other hand, people's optimism on this site gets me through each day without otherwise being paralyzed with fright - as I tend to get when I'm reminded about how hcm can progress and what may lay ahead for me with my, not 1, but 2 found gene mutations.

You're absolutely right - I know doctors who told me that they read this site!

For everyone else - Keep up with the positive comments. I don't even care if it's all lies (j/k, I know it's not lies), I eat them up and they make me feel like I'll live old enough until my girls won't need me anymore b/c if I focus on what my future with hcm could really be like I'll be too caught up in worry to enjoy my time here with them.

Jen

[Eileen2345]

Re: Please let us remember that HCM...

Ok, not only am I exhausted from HCM, but also from this thread.

My intent was to give some insight on what was being posted on this community forum.
I wanted to offer some constructive criticism, if you will, on what people might perseve as accurate information from what was posted on certain threads.

I'm not going to debate this any longer.

You all can say what you want. I'll probably continue to visit once in a while.

But, please allow me to say this; I sure do not want my local cardiologist, or my family, or my employer, to get their information about HCM from this website - and especially not from this HCM forum.

I'm sorry if that sounds unkind -- it's true.