Please, let us not forget...

[lj]

Re: Please, let us not forget...

I have witnessed each of 2 siblings suffer and die and a third sibling have a massive thyroid storm and stroke and almost die; She got a heart transplant but was pretty lucky - listed and was called in 2 months. My mother died just last year of HCM as I watched her for a month slowly stop being able to speak, drink, and move. In her last month, she was brought to the emergency room the same day I found out that I will need a transplant one day and that I had HCM as well. My great sadness for their loss, even though I contended with survivor's guilt for a long time, now makes me appreciate life more and want to fight to see my son grow up.
Now, I get to witness my self go down the same road as the others before me as well as to discover the drugs were too strong for our presentation of HCM. I went into diastolic and systolic heart failure only 6 months after being prescribed 40 mg of a betablocker; Now, only a year and half after my diagnosis, I'm only taking 1.5 mg. of a betablocker because my blood pressure will crash and I'll be stuck on the couch. My eldest sister won't take any drugs after since learning what happened to me - she was just diagnosed last year through a genetic test. She is symptomatic but not experiencing loss of function.
Ironically, my mother once said in her middle age, maybe I fared better because I started on drugs later. My brother died as well at 34 years old from HF and pulmonary edema after taking 100 mg of a betablocker since he was 17 years old (diagnosed after a syncopy episode). My sisters took ace inhibitors. One doctor commented that we give betablockers to tame a strong heart but in your family, we are taming a heart that's already weak to begin with. It's unfortunate that it took five of us to go down the road of chronic heart failure to discover this, but not too late for my eldest sister, who always thought her symptoms was asthma, but never took drugs and so far has fared like my mother. I am hopeful for her. LJ

[delfam]

Re: Please let us remember that HCM...

Eve,

As I've been reading the thread, HCM is different for everyone. In May of 2010 I had to stop working because it was too much every day. I applied for Social Security Disability and finally got approved. I also have other things that factored into getting my disability. Not everyone understands the effects of HCM. My therapy she says your depression is improving and should think about working. Simple tasks around the house makes it worst if I bend down to clean and feel dizzy or doing something simple and sweating. So you are right.

Everyone is here to help in living "a normal life of HCM".

[Eileen2345]

Re: Please let us remember that HCM...

I'm not trying to drag this on, and this is my last post on this. After thinking about this, I wanted to address this...


From Gordon:

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.

Gordon's statement right here is one of the main reasons why I started this thread in the first place. In my opinion, this should never have been said. It is generalizing and misleading. And Cynthia agrees with Gordon.


I know that Gordon goes on to say:

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.

But, it's his beginning statements that make my point about the information provided on this webiste and HCM community forum.

It's the beginning statements that make the most impact.


It's the "most people with HCM live about as long as anyone else" and the "proper care" and "mostly without huge lifestyle changes" that are precisely my point. It's wrong to make those statements and it's wrong to generalize like this. These statements seem to be the norm on this site.

Oh, how I do not want my local cardiologist to see this, or my employer, I will lose my FMLA at work. I can lose my job over something like this. To me, statements like these are a disservice to many of us who have HCM.

This is so frustrating to someone like me. To have the source of my heart disease be a detriment to me.

[Eileen2345]

Re: Please let us remember that HCM...

Thank you Mary, Jen, LJ and Joe for sharing your stories.

Your stories help to bring to light what many of us deal with.

Thank you.

[Philipk02]

Re: Please let us remember that HCM...

Eileen,

I agree with you. Each person is different. Our journeys through this illness progress differently. After all, if it was common for everyone there would be allot more hospitals and doctors focusing in on this condition. Lisa Salberg has been amazing in pushing for programs and legislation tp encourage treatment and center development. I personally am very comfortable with CCF, but will be needing to be more local. It is a strain to travel there. I have been using ANGEL flight North EAST, and my church has been giving me checks to cover the guesthouse at the clinic. I am just not comfortable anymore asking for that assistance, plus the trip exhausts me. I can't ride a bike right now either, because i am short of breath. I also get chest pain after walking 7 blocks, but that has been an improvement. We all are different, and that is what people need to realize.

Be kind to yourself and others, and most of all please hang in there and pray.

Phil

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.

[jenken]

Re: Please, let us not forget...

I am new to this site, only because of looking for the best treatment route for my son who has recently been found to have +DNA for HCM. I am going to stick my neck out here in an attempt to calm some fear of what seems to be a sticky spot. I have been a SSA disability adjudicator for 16 years. I would never use a forum site to gain medical information or training regarding a disease. I only came to this site to find support from others a similar issue. As a disability adjudicator we are well trained or well versed in the terms used in medical records by doctors which are comon...'doing well' 'stable' 'making great progress' 'normal' all of these types of terms are found in everyone's medical records even for patients that by a healthy person's comparisson is extremely sick. The problem is when a PCP becomes familiar with a patient they make notes in the record based on your level of normal and not in comparison to a healthy person. Make sense? The difficulty in getting disability approved especially if you are under the age of 50 is that we only have YOUR doctors records to go by. A "diagnosis" does not make you disabled for SSA, it is the ability to function and level of functioning that makes you disabled. Doctors are trained to be upbeat and look for positive improvments and sometimes are your worst enemy in your application for disability. Words like "mild" "moderate" "marked" and "extreme" are much easier to gage how someone is doing if the doctor uses them. Best case senerio is a detailed letter from a doctor stating "functioning" NOT "can't work" this is too vague. As a disability decision maker when looking at a case of someone with a long term chronic condition with minimal records(believe it or not the longer you see a doctor the less information they actually write in your chart) we often send very specific questions to the doctors to answer regarding function, unfortunately most (9 in 10) will not answer the questions for us. They will for an attorney but not for us.
To avoid rambling if you have specific questions I will be happy to answer them on an individual basis from the perspective of someone trying to obtain the best picture of a person's ability when all you have is sometimes no more than 'hen sketch' notes from a doctor. Some doctors are very poor at writing down in a chart what they say to their patients in converstaion. It is not possible for us to see each claimant we are working with, our State is currently working claims from three other States in the country due to back log. I can't speak for doctors but I would imagine the same for them, if on this site it is not to gain "medical knowledge" it would be for other reasons. Jen

[LindaSo]

Re: Please, let us not forget...

Wow Jen what an offer !! You will not be hearing from me, but I'm sure you will be hearing from a handful of others who have had great difficulty getting SSI when they truly are disabled.
Linda

[Moosedreams]

Re: Please, let us not forget...

Hmmm.

This has been an interesting thread. I've been through a %$#@!-storm in the last two years with HOCM but now I'm better, know my limitations, and am committed to living as "normal" of life as possible. I'm not ashamed of feeling normal or of telling other HCMers that they can live a normal life with certain limitations.

I know of few diseases where there isn't some risk of being worse off than others. I mean heck, people die of the flu but most don't. People have died of bee stings but most don't and so on. This site and the members sharing information, their experiences, and answers have been a godsend to me over the last couple of years. And yes they have noted the fickleness of HCM and many of the possible negative and ongoing negative issues that may be associated with having HCM but they've also told me I do have a good chance of living a normal life and that ideal, that hope, is what got me through it. I wanted to know that I could live a normal life, that there was a possibility of a normal life, and in fact that was the most common outcome for most people with HCM.

That is what kept me going and my glass half full when I ended up in the emergency room in Cleveland 3 months after my myectomy (and after a 7.5 hour drive) with a heart rate in the low 30's barely able to function. There is nothing more powerful than hope and while we on this site should and do tell the whole story I think we need to tell newbies that there is hope (and a good chance) of leading a normal life.

Toodle pip... Moosedreams

[mtlieb]

Re: Please, let us not forget...

Eve, if you are still reading this thread I just wanted to let you know that I have been in your shoes and understand exactly where you are coming from.

In fact, I've been on both sides of the equation now... the critically ill patient whose family and friends were led to believe that my disease wasn't nearly as serious as it actually was... and on the flipside I've been the HCM'er who is doing very well now and is leading a perfectly normal life for the most part. I'm sure others here have experienced a bit of both as well, but I can tell you that it absolutely sucks to be on the symptomatic side of things and not have it taken seriously.

When I was first diagnosed, my brother and his wife were friends with a woman who has HCM and she led them to believe that it is 'no big deal'. She told them that all she needed was an ICD to prevent sudden cardiac death and other than that she is just like everyone else. Needless to say she didn't have obstruction, or heart failure, or an ejection fraction of 30% like I did for so many years. But because she told them what she did, everyone in my family thought I was some kind of faker or something.

Dealing with a disease like HCM is hard enough but having your own family, friends and even doctors not take you seriously just makes it so much harder.

Jim

[kirbyj]

Re: Please, let us not forget...

Some people with HCM can lead an almost normal life and live for as long as an average person. Some cannot. That is the rub. If you are feeling great all is well. If you aren't it isn't. How we feel colors how we think, and vice versa, in my opinion.

I remember when I was young and in grammar school and my asthma (not misdiagnosed)would flare up I would try to hide it from my playmates. I hated being different and never sought special treatment even though my performance in sports could be severely impacted. Then around fifty years old I find out I have HCM and again I carry on pretty normally and hide my SOB and angina from all around me at the biotech company I worked for. Nothing hurt as much as when I had to quickly walk long distances from one meeting room to another at huge hotels. Sometimes panic could set in as I got lost and had to backtrack. Then just a year and a half ago things got so much worse and I got a myectomy, thanks to the information I learned here from the HCMA. But I still consider myself normal as I do lead a relatively normal life. I can't run or play competitive sports for hours even after the myectomy, but I can play with my grandchildren and take long slow walks with my wife of forty six years. That is normal for me. There are plenty of worse things I could have. I feel blessed to have what I do have. In my work of representing biotech cancer medicines I saw many people who suffered greatly from cancer. I also learned a lot from the great oncology nurses that you need to stay positive each day. Today is a great day, you are alive. Enjoy it.

What is normal anyway? But there is no reason we can't expect to lead peaceful, fulfilling lives. I have found a lot of peace looking at the spiritual side of things. It wasn't easy to do but for me it has been well with it. I am beginning to sound quite odd. Is that normal?

[mbcube]

Re: Please, let us not forget...

Kirbyj, Odd? I think not. I bet 95% of us who had surgery came out of it a bit more spiritual. Heck, I cried at McDonald commercials for the first 3 months post op! We all walked many paths with our HCM and coming here sharing our experiences - good or bad, has allowed each of us to walk in others shoes if only for a few minutes.

[JudyA]

Re: Please, let us not forget...

I have also been reading this thread with interest.

First, I would like to comment on that word normal. I kinda agree that it is used too much here, and many places in our society. We all want to be"normal" - to fit in. I also have ties to several people that are dealing with issues on the Autism Spectrum. I would like to suggest this as an analogy to our problem here.

There are many - hundreds, thousands, and more, ways of being diagnosed on the "Autism Spectrum. And in one of the more defined groups of autistic individuals, in those suffering from Asperger's syndrome, many people are facing terminology issues like we are here. Those with Asperger's syndrome have been referred to as "High Functioning Autism", "little professors" and other terms. Some of those who have aspergers refer to themselves as aspies.

As with HCM there are many, many, different levels of being affected with their condition. One expert has said, " If you've seen one Asperger's, you've seen ONE Aspergers!" This is said in contrast to the common statement, " If you have seen one, you have seen them all". And all parents of an autistic child would love for their child to be "normal"

To anyone who works with autism in any way, the current theories about it being an organic neurological disease is most prevalent, and the way people are often labelled is that you are either on the autism spectrum( not functioning in a normal way neurologically), or you are "Neurotypical".

If we are discussing autism in my house, we are usually talking about autism and it's comparison to how others function on a daily basis. and we use the word neurotypical behavior vs autistic behavior, frequently and easily. It is much more accurate that NORMAL.

I am one of the posters here, who may not have much common ground with others, but I still love to read all of the posts, and learn a lot.

I don't have a strong family history of HCM except for my mother and that is purely speculative. I don't have an ICD. I went the less travelled path of having an ASA instead of the myectomy- mostly out of panic and wanting a quick solution-and I was away from home. I do not have a cardiologist that can work well with a COE, because I don't have a local cardiologist at all, and have been managing my HCM with the help of my PCP. Do I "belong" here- of course- We all do!! I consider myself fairly stable, but recently I realized that I could be just one case of pneumonia away from serious complications (as in Cynthia's case). It has made me rethink how I am being managed and will probably make some changes soon.

Many of the treatments we have been prescribed, are done to increase our quality of life, not to guarantee a certain number of years added to our lifespan. Many of us that were diagnosed later in life are having many more quality of life issues, than are the younger generations. I think that with us being within the first 60 years of serious treatment for HCM we are still in a kind of Limbo. The very practice of the HCM specialty is growing and learning. And we as a uniting force on the internet are also still feeling our way. And Lisa and her staff and the moderators are doing a wonderful job.!!

So there really need not be any finger pointing as to who uses the word normal, and/or long normal life. I do not personally thing I will live an extremely long life- I am 59 now, fairly symptomatic at times, and I am ok with that. What I think we need to do is develop some new terms that will be more accurate! And I think that in another 10 - to 15 years, a "long normal life" might be a reasonable prediction. Until then...........

What word(s)should we use to describe:

1. Someone without HCM

2. living symptom free

3. Having many daily challenges related to HCM

4. Anything to replace the controversial words "lead a long normal life"

5 any ideas on how to catagorize those with early detection and treatment, versus those who find out later in life with many complications?

If you are still reading this epic length post, thanks- and feel free to add to the list of things we need to better describe ourselves.

JudyA

[Lisa Salberg]

Re: Please, let us not forget...

It is 10pm.. i am just in from evaluating a potential new HCM program.. and tired as can be.. but wanted to chime in before my head hits the pillow.
1. we are all on a journey together... yet the paths are varied - some bumpy, some smooth, some with forks in the road... some on paths less traveled.
2. this board is what YOU... the community make it... good ... bad... middle.... and we at the HCMA with the help of moderators help guide the conversation...
3. On Christmas.. yes Christmas.. i received and email (the first complaint in many many months) stating the board was to negative... and this thread seems to be leaning toward the board is too positive.... need to think on that one a while....
Perhaps a new layout.. with "I have HCM and am doing GREAT".... and "my HCM is out of control"... would give people areas to read the slant they seek?????

Input please.. and good night,
Lisa

[Srmartinson]

Re: Please, let us not forget...

Here are my thoughts: When I initially joined this forum group, I was in acute pain (hense receiving 26 in appropriate shocks while totally alert) and was frustrated at the responses that I received via the messages. I felt that the members didn't understand me and were not fully supportive. But this was my mistake.

I find it interesting that the message board tends to alienate people but I do think, as in my case, they may come back with a more open perspective.

I would never wish anyone to go through what I have gone through nor what I am currently feeling and dealing with but I know that the members of this group do make an effort to inform and be supportive from all sides. For that I am grateful.

Stephanie ("We each have a story").

[Eileen2345]

Re: Please, let us not forget...

Thank you everyone for posting and for sharing your stories! Wow! There has been a great response to this thread.

--------------

When you visit other chronic illness websites like the American Diabetes Association, the American Heart Association and the Arthritis Foundation - they say things like:
(paraphrasing)

"By contacting us, you have made the first step to living a healthier, happier, and longer life.

"Our mission is to help build healthier lives..."

"Our mission is to improve lives through leadership in..."

--------------

They never use words or phrases like: "healthy", "normal", "live a long time",
"no big limitations", "normal lifespan."
It's irresponsible to do so.


They say, "healthier" which means you can get support to be healthier.
They say, "a longer life" - not a long life.


They don't generalize - They let patients know there is hope and there is help out there - they don't give false hope and misinformation.