Age of diagnosis ...

[Lisa Salberg]

Let us take a look to see how old you/your loved one was when they were diagnosed?
If more then one family member has HCM please pick one person to answer for.

[Sarah]

I was 13 and went to the pediatrician for a sore throat when he found a tiny murmur. He told my mom and she said "Welcome to the club." ha ha.

It wasn't called HCM then, it was still IHSS and then in college, it was familial HCM.

It was 1981.

S

[Tim Stewart]

Lynn was diagnosed at 31. She became very symptomatic two years prior when she was pregnant with our only child. She now can look back and remember being S.O.B. in her late teens.

[Dolly W]

I was also diagnosed in 1981 with IHSS, I was 17 at the time. I really didn't know much about it until 5 years ago when my symptoms significantly increased. Looking back I, too, can remember having symptoms as early as 12 years of age.

[Nancy Sarvis]

I was diagnosed in 1998 at the ripe young age of 38 years old. My first symptoms started when I was 17 years old. The first time I was told I had a "tiny" heart murmer I was 33. Even after EKG changes and a right sided heart cath I wasn't diagnosed. After about 5 more years I was told "That is the loudest heart murmer I"ve ever heard!" Finally an echo was done and THEN I was finally diagnosed.

[Sonja]

Bill was about 36 when he was diagnosed. Looking back he says that having HCM explained a lot about why he wasn't able to keep up with his peers (at school and early adulthood), was no good at team sports - at the time he thought that he wasn't fast enough or fit enough. Being diagnosed therefore answered a lot of questions.
Sonja

[mflanagn]

My daughter was diagnosed at 4 days old. My son was diagnosed at birth because of his sister's history. I thank god everyday for their early diagnosis. They have both had surgeries at early ages. I just think if they had not been diagnosed, how would a 3 year old tell me he was having heart trouble. That was the age my son had his first surgery. My daughter was 5.

[Reenie]

My husband was told he had a murmur at age 34. He had a sinus infection and the nurse said that sometimes when you are sick some sounds are magnified. 6 months later, around his birthday, he had a full physical. They heard the murmur again. The nurse practitioner said his EKG "looked funky" and ordered an echo. This was performed at a Japanese Self Defense Force hospital, (the equivalent of their Air Force), then the results were translated into English. Some of the terminology was odd by American standards. Maroon Type III comes to mind. Anyway, they sent him to Hawaii for confirmation of diagnosis. Looking back he said he always thought he didn't seem to have as much lung capacity as others his age who were in about the same shape.

[angeleyes]

i was diagnosed at age 21 but the air force doctors new a year to two years before. i had alot of symptons growing up but no one ever thought they were serious. have always had a heart murmur.
amanda

[mtlieb]

I was diagnosed with HCM at age 39, although i was found to have Mitral Valve Prolapse with Regurgitation two years ago at age 37. No other family members (two brothers, two sisters) have been diagnosed with it, although my father died from an unexplained cardiomyopathy in 1985. I suspect he had HCM. I had to get it from somewhere :shock:

[Reinhard]

It was around 1979 or 80. (around 29 years old).

I had gone to a cardiologist for a physical only because he was treating my father-in-law for heart failure. The cardiologist heard a murmer, performed an ekg and subsequently, when reviewing the ekg, asked me if I had ever suffered a heart attack.

Of course, I replied no. Final diagnosis......IHSS.

Reinhard

[amywill9]

I was diagnosed at age 5. My son was diagnosed at 4 months.

Amy

[Laura]

I was diagnosed at 25yo, after 3 family deaths. I had been told i had a heart murmur for years prior to being diagnosed. I fortunately hated PE in school, so i escaped it for almost the whole year in 9th grade till they realized i was not taking any of these classes. may have been a godsend. :lol:

[kenneth]

I was diagnosed at age 33, after many family members have died suddenly of cardic arrest.

[rgrin]

Officially diagnosed at age 53. Doctors did find a heart murmur in grade school but it went away. A resident at the Southwestern Medical Center noticed something when I visited the doctors office for a cold and the had the staff doctor check it out, and the rest is history.

[Dee]

My son Dylan was diagnosed at 6 weeks of age. We went in for his 6 week checkup and the doctor heard a very loud murmer. He had an echo then the next day and was diagnosed with HCM.

[mtlieb]

Seems like a common theme with some of us older folks is that looking back we can remember having symptoms at a very young age, but weren't diagnosed until relatively late. I'd always known i had a slight murmur, but i was 19 at the time so what did i care? You're still indestructable at 19 right? Well, i'm 40 now and not quite so indestructable as i'd like :?

When i think of all these years i've been working outdoors doing fieldwork for a living i almost have to cringe a little bit. LOL. I'm a strong guy and a good digger, but so many times times during the day, especially if it was hot, i'd be digging and my heart would start pounding so fast and furious i could feel it in my head, my eardrums would throb, my head would be ringing, and i'd literally be gasping for air at times. I'd just tell myself 'you wimp, you've let yourself get out of shape', i'd take a break till the dizziness went away and i caught my breath again, then go right back to work. I honestly thought this was perfectly normal :shock:

At any rate, i guess what i'm trying to say is now that the lightbulb has finally been lit, SO many things now make sense to me. Even as a young man, i could never ever keep up with my buddies who were in the same or even worse shape, and i never understood why. For me, being diagnosed with HCM is a huge relief. I can finally stop kicking myself after 20 years for not being able to do all the things my buddies could. I've always felt bad about that. Hey, i'm not a wimp after all :D

Thanks everybody,

Jim

[Lisa Salberg]

Jim,
I think most of us have felt like the "whimp" from time to time..other have been told the problem was all in thier "head"...
But no we are not whimps and the problem is about 12 inches lower then the head...we have heart disease..and YES we know "we look just fine" but heck when was the last time these people looked into our chests?
:) so lets just sit back and know that we have HCM and we can do our best to take care of ourselves 8-)
Lisa

[Scott Mac.]

My son is 16 weeks old and was diagnosed a few days ago. :(

[kathyn2]

I was just diagnosed in the year 2000. I was 51 years old. But I, too, suffered from exhaustion from the slightest exertion thru my junior high and high school years. I never had much stamina. I also suffered chest pain upon exertion and went several times to cardiologists trying to find out what was wrong with my heart. I had a couple of echos etc. But I was always told there wasn't much wrong. One time I was diagnosed with mitral valve prolapse. Another time I was told that there were 'alot of women' that had this 'syndrome' that I had with a fast heart rate and chest pain and that the pain was caused by muscles in my chest.

In the early 1990s a heart murmur was finally detected but I still was not diagnosed with HOCM. They said I had an ejection murmur and that it wasn't dangerous and not to worry about it. Finally in the year 2000 I was having alot of symptoms and had an echo and the murmur was huge and loud etc. Thats when I had a very enlarged septum etc and was diagnosed with moderate to severe hocm. All those years without treatment! Sheesh. I am still looking for help at this time.

[paix]

I was diagnosed in 1988 at age 20. I'm amazed that the local Dr. got the diagnosis on the first try. Unfortunately, he wasn't very helpful after that. He said: "You have IHSS, don't do competitive sports or lift weights and have a nice life." It wasn't until after my myectomy in 2001 that I realized how symptomatic I was and that it had probably all started around age 12. I agree that it is a relief to know I have a serious condition and am not just a whimp :?

Elizabeth

[SheliRenee]

When my son was two days old, I was told that his ventricles were hypertrophied. When he was six weeks old his cardiologist informed me that he had HOCM. The arrythmia didn't develop until he was five months old. I am so thankful that we know. I consider this knowledge as a gift. Although I worry about Keanu's condition constantly, I am thrilled that we know about it and can deal with it accordingly.

[AmyJ]

Diagnosed at age 16 after Mothers stroke. Syptomatic at age 18 (in college). Pacer at age 20, Alcohol Ablation at age 24, ICD at age 30 (last week!!).

[Karen P]

My husband was 16 when he was diagnosed. He became truly symptomatic by age 29 when the first pacer was implanted. Looking back, like most of you, he had trouble pushing things; lawn mower, broom. Our daughter was diagnosed in 2002 at age 19.

Amy, I hope you are healing well. My daughter had her ICD implanted a few months ago. Take it easy!

[AmyJ]

Thank you Karen! Today is the first day without a pain pill...so far!! :D

[pickaback]

Diagnosed at age 2, back in the 1960s. Was symptomatic age 10 when I had surgery. I have been told I will likely need surgery again.

[dughr]

I was diagnosed at 17 in 1982, but then told they could not confirm it (IHSS). It came back up again in April of 2002 when I was in for an appendectomy. Now I am 38 and have severe symptoms.

[sheryl]

I was 45 yrs old. I was seen about 2 yrs before by a FNP & she heard a murmur, had a echo but only slightly abnormal results. Was seen at same office by a PA approx 6 to 8 months ago. The PA said the murmur was much louder than described on my previous exam, another echo that showed HCM. Referral to cardiologist after that. My husband of 27 yrs always picked at me about walking so slow. I always felt like a 'wimp' too & like a goodyear blimp without enough air to keep moving. It is almost a relief to find out that I have a medical condition for feeling so lousy & lethargic. Sheryl :o

[TammyC]

Hi
This may sound like a silly question but everyone keeps talking about SOB! What does this stand for? :idea:

[Lisa Salberg]

SOB = short of breath :cry:

[TammyC]

Thanks Lisa

[tammy59]

I WAS 35 WHEN DIAGNOISED BUT AT 26 WHEN I WAS PREGNANT WITH MY SON I HAD A MURMUR BUT IT WAS NEVER FOLLOWED UP. AND WITH MOST OF WHAT I HAVE READ IN THIS FORUM I COULD GO BACK TO WHEN I WAS A TEENAGER AND I HAD SYMPTONS AT 15 OR 16. GETTING WINDED BEFORE ANYONE ELSE,MORE TIRED DOING THE SAME AS OTHER KIDS. IN MY FAMILY NO ONE HAS BEEN DIAGNOISED WITH HCM ALTHOUGH WE SUSPECT MY GRANDMOTHER MAY HAVE HAD IT.

[Jay Doolittle]

:wink: Greetings from a new kid on the block. Diagnosed at 71, I have always been extremely active. During a 22 year career in the Air Force, I was a combat controller parachutist for three years, a member of Special
Forces for four years and flew as an aircrew member the rest of the time.
This duty was physically demanding and I underwent examinations and
stress evaluations periodically with never a hint of anything amiss. Two
years ago I had a blackout episode after quickly climbing two flights of stairs. My regular provider, an internist prescribed an Echo after which I
was informed that I had a slight mitral murmur and not to wory about it. A year later history repeated itself and I blacked out again under the same circumstances. After another Echo, I was referred to a cardiologist
who, after all the definitive tests and examinations diagnosed HCM and
started me on Atenolol three months ago. It really sneaked up on me! I
knew my mother had what she said was an "enlarged" heart but she lived to 86 and that was not attributed to her death. I must have received it
from her but I never had a clue. I am learning more every day and am resolved to enjoy the best possiblel quality of life with HCM. How uplifting
it is to find that a group like this exists to share experiences, information
and hope. Glad to meet you!

[Jay Doolittle]

:wink: Greetings from a new kid on the block. Diagnosed at 71, I have always been extremely active. During a 22 year career in the Air Force, I was a combat controller parachutist for three years, a member of Special
Forces for four years and flew as an aircrew member the rest of the time.
This duty was physically demanding and I underwent examinations and
stress evaluations periodically with never a hint of anything amiss. Two
years ago I had a blackout episode after quickly climbing two flights of stairs. My regular provider, an internist prescribed an Echo after which I
was informed that I had a slight mitral murmur and not to wory about it. A year later history repeated itself and I blacked out again under the same circumstances. After another Echo, I was referred to a cardiologist
who, after all the definitive tests and examinations diagnosed HCM and
started me on Atenolol three months ago. It really sneaked up on me! I
knew my mother had what she said was an "enlarged" heart but she lived to 86 and that was not attributed to her death. I must have received it
from her but I never had a clue. I am learning more every day and am resolved to enjoy the best possiblel quality of life with HCM. How uplifting
it is to find that a group like this exists to share experiences, information
and hope. Glad to meet you!

[Reenie]

Jay, it's nice to meet you. You will find a lot of good information here as well as a lot of support. Welcome.

Reenie

[TammyC]

This site is the greatest. :lol:

[Lisa Salberg]

Jay,
Welcome! Boy it sounds like you have some wonderful stories to share! I can not wait to hear them!
By the way... THANK YOU for service our country!!! BIG HUGS!!!
If you have any questions just let us know!

Best wishes,
Lisa Salberg
Pres.
HCMA

[Danielaeh]

I know by experience how important is to know and learn...
My husband was diagnosed at birth.
My son was diagnosed at the age of 4 months.
His grandparent was diagnosed at the age of 60 years old
3 generations... of the Fanilial HOCM type.
Each generation it becomes more severe.
Tha grandfather has no symptoms and no obstruction.
The son has mild symptoms and last year a minimal obstraction was noticed.
The grandson has severe HOCM .
We did screen (including blood test) to all the family. no other members have hcm/hocm.
The mutation causing hocm in our family is called: MYBPC - myosin binding protein C.

[Ralph]

Hi,

I was diagnosed at age 31 and had remembered symptom in my early teen years. At age 10 I had eye surgery and the pre surgery PE showed a "heart murmer" During my 20's I was treated by my family doctor with trangulizers. Finally when I was 31 in 1971 the "new" echo ekg was available and I was diagnosed. I am 63 now and have been very active most of my life, but have had to slow down quite abit the last few years. I am still seaching for the right medical people. In May I am seeing a doctor Lisa recommended, so maybe help is on the way. :)

Ralph

[Danielaeh]

Hi !

Finding a good doctor with experience treating HCM/HOCM is very important.
Also to find a doctor that understands you and is ready to tell you all the options you have so he trusts you as a colleague .

[Shelley]

Diagnosed at 25, in 1999...no symptoms, but my mother died suddenly so my sister and I both got tested. I was the only positive. I only knew of this condition as IHSS, and my Grandfather had it, Mother, Uncle, and a couple of Aunts as well.

[tgf4th]

I was diagnosed at 46 while I was in the hospital suffering from CAD. My doctor had noticed a heart murmur before but didn't associate it with HOCM. When they were prepping me for a mitral valve replacement one of the team members recognized the enlargement in the echo. Luckily no valve replacement (yet) and just a couple angioplastys.

[Angeleyes22]

i was diagnosed at 21 when i started having a lot of symptons but the military knew the year before and did not tell me.
amanda

[SummerbutterflyS]

I was diognoised at age 32. I had been going to a gym and walking on the stairstep machine. I kept having tightness in my chest and SOB, so my doctor sent me to a cardioligist who ordered an echo after finding a murmur. I was then diognoised with HOCM and put on several different medications, but have always been sympomatic.

I was never able to keep up with my peers after I went through purverity. I always was over weight so I contributed it to that.

When I was diognoised they said I had a very loud murmur. Every time I went to the hospital the doctor would have the nurse listen to my heart because I had such a obvious murmur. I am now told that I do not have an obstruction, and they can hardly ever hear a murmur. Which really puzzles me due to the fact that I had such an obvious one before.

When I first found out I was told that it is heritory and I had my boys tested, non of them were diognoise with HCM. I was not informed of how serious it is and that all of my family members should be tested. It was not until I found this site that I realized that my extented family need to be test. I sent all of my brothers, sisters and my parents information on the disease. So far I don't think any of them had any testing done but at least I did my job. In the mean time I have been having my boys tested regularly. So far my oldest (19) and youngest (12)have not tested positive, but my 14 year old did this spring, the doctor still don't want to diognoise him as having it. Actually last year the doctor said both boys had signs of it, but this spring he said the 12 year old didn't have any signs.

I ask the doctor for a copy of the echo so I could send it to Dr. Lever so he could check it out. That way I will know for sure. When I went to pick up the tape they wanted $35.00 for one tape with both boys echo on it. I was so disappointed. I don't have that kind of money. They said if Dr. Lever contacted them and requested it I wouldn't have to pay for it. How stupid.

My oldest son has a baby on the way, due in September, the mother has had a level II ultrasound done and is scheduled to have another one done at the end of June.

[shirleymahoney]

i was diagnosed at 45, but had problems as a baby of fainting the first five years of my life, dr. said it could be my heart, but got better, always short of breath, but still ran track, but as an adult age 20 til now no waycould i run across my yard. i also had a bad heart murmur, family history and palpitations my family dr. sent me for a stress test and echo, My cardiologist said i'm well in advanced stages, i'm on 200mg of toprol, getting ready to go on calcium channel blockers, you know it seems my toprol isn't working like it was because i'm feeling my heart pounding from time to time. i just wish my dr. would tell me more, he's very vauge, about answering my questions

Thanks for listening to me
Shirley

[scottdg]

Like many have said I was diagnosed at a very young age with a murmur. I was then told as I got older that I had outgrown the murmur. It wasn't until I was 24 Years old that I was diagnosed with unobstructed AHCM after I went into afib. I was okay for a while with very few symptoms once I found a medication that worked for me (100mg Toprol). Then in 2001 I went into afib two more times that summer and I had to be cardioverted (sp?) the second time (The good thing is the medical assistant that was drawing my blood while I was on Coumadin will be my wife in October. :D). I have felt great ever since the cardioversion until recently. The last two months have been a struggle and I feel like I am starting over...

[Danielaeh]

Hi and Welcome!!!

Keep hoping! Every Start is a new hope!
You need it for next October!! :D
Wish you will feel better soon!

[jerrysprincess]

:D HI, I was diagnosed at age 26, while pregnant with my 2nd child. I had symtoms when in grammer school. My mother was diagnosed in her fifties and my Aunt in her forties. So far no children in the family have been diagnosed.

[Reenie]

Hi. Welcome to the HCMA.

Reenie

[dror]

My name is Dror Eytan, I am an Israeli guy 45 years old working in the travel industry, and living in Tel-Aviv.
I grew up in a small village in the center of Israel, normal childhood, 2 healthy parents, 2 healthy brothers and a healthy sister. No sudden death in the family and no records of HCM in the family.
As a child and a teen, I had normal life, even though; I had some difficulties in sports activities, which was related at the time for me being on the chubbier side.
At the age of 18 I was diagnosed with GBS Guillain-Barré Syndrome, I was hospitalized for a few months and was fully recovered.
At the age of 20 I joined the Israeli Army, and I served my 3 years duty as a tank crew man, a gunner.
During my military service I had a few incidents of blackouts, and I was sent for an evaluation. I went through ECG ECHO and finally I was diagnosed with NON OBSTRUCTIVE CARDIOMYOPTHY.
I finished my 3 years service, without medications and started my civilian life without any symptoms or complications.
Two and a half years ago, I started to feel that something was wrong. Chest pain, even in rest, tiredness and arrhythmia. I went through a period of denial, and finally after two bad years I decided I should see a doctor. My quality of life deteriorated badly.
Most cardiologists in Israel are not familiar with HCM, and some of them didn’t really believed me when I was telling them about my symptoms. There was a point that I felt like I was going out of my mind.
Finally a week ago I found this professor Rozenman, who is a cardiologist , and after he has reviewed my medical history he diagnosed me as HCM patient. He referred me to your site and I SAW THE LIGHT AT THE END OF THE TUNNEL.
I am not alone out there, I am not crazy and it's true what I have been feeling in the last years. I started medications, which aren’t so efficient yet, but I certainly expect better times.
This is my story, I am sure some of you went through similar responds from their doctors, but the bottom line, never lose hope, keep reading and you might find the one that will understand and eventually HELP.
I apologize for my English which is not my mother tongue, but I do hope that you will be able to understand me.
Dror EYTAN. Tel-Aviv, ISRAEL.

:D

[Linda]

Dror, Welcome to the site. Your English is excellent. I'm glad you finally seem to be in touch with someone who can help you and understand your condition. Read through other postings, ask questions and offer your experiences. You will find our members to be very helpful and informative. Feel free to contact Lisa in the HCMA office. She can send you some information and may be able to help you with some issues. I wonder if your cardiologist has visited our HCMA Booth at one of the cardilology conference that Lisa and I have attended. I'm very pleased to learn that you came to us through your cardiologist. Linda

[Reenie]

I just wanted to welcome you to the HCMA. You have found a place where everyone will understand what you are going through. I hope to see you on here often.

Reenie

[SharonBates]

Hello Dror,
Welcome to the site. You will find lots of answers here and I am happy you found us!

Hello Jerrysprincess,
Welcome to our site, too. I hope you get answers to the many questions that can pop up with HCM. Good luck to you and your family. Give a squeeze to your little one's for me!

Sharon

[cbrown]

My 12 year old son was recently diagnosed with HCM. He had strep and ear infection when the doctor noticed a murmur. I was told he no longer can play competative sports or lift weights. He is on a beta blocker. He will visit Boston Children's Hospital at the end of the month. I am not sure what else to expect. I want to know what can he do! After his diagnosis I went for tests and I also have it. I have been ill for a long time with no cause. Now I have the answer. But I am not on any medication yet. I go for further testing next week. I am not sure what I can and can't do?

[roxann]

My husband was diagnosed at age 30. He had gone to the doctor for stomach trouble and they heard a murmur--ordered an echo and he was diagnosed. He had symptoms earlier--but didn't recognize them as a problem--He thought he was just out of shape. He had competed in swimming since the time he was about 7 or 8 years old until about the age of 16--then moved on to intense physical labor jobs. It wasn't until after he settled down to be computer technician that this was found out. It's quite amazing that he made it as far as he did. Once he was diagnosed, they put him on beta-blockers--and then, unfortunately it was really pretty much downhill all the way for him. But--everyone is different. His cardiologist said that he did have the extreme end of the disease. I have two boys--I hold my breath--so far they are ok.
Roxann

[Reenie]

cbrown,

Hello. The competitive sports should be avoided for you and for your son. You should give Lisa a call at 973-983-7429 and she will help you with getting in touch with doctors who are best suited for both of you. You should know that while HCM isn't to be taken lightly, most people who have it live long full lives. For the time being try steering your son to other activities that he can do that aren't physical in nature - theater, horseback riding, etc. Take your time to learn about HCM and what it means. Don't try to understand it all at once. It's a very complicated and personal disease. Also, it's variable even within families. The course of your HCM isn't necessarily the course for your son. I hope to hear more from you soon.

Reenie

[Danielaeh]

To Roxxan,

I am happy to hear the boys are O.k.
I hope your husband will find new ways to enjoy life, other than sports.

[Lisa Salberg]

Welcome to all our newcomers!
I hope the site has helped you to bettter understand HCM and also to know you are not alone in your fight.
Be well,
Lisa

[roxann]

Thanks, Danieleah--

Unfortunately, my husband passed away in April after his myectomy. He had a pulmonary embolus. I continue to keep my hopes up for my sons, though.
I hope you and yours are doing well,
Roxann

[Danielaeh]

Dear Roxxan,

I am so soory I didn't understand better.
Please accpet it is my bad English and not insesivity.
My apology to you.
With respect.

[roxann]

Danielaeh--Not a problem--there was no way you could have known.

Take care of your little one--and you :)

Roxann

[dennis]

Hi everyone, I was diagnosed officially at age 16, unofficially much younger when the family doctor told my mom I had a heart murmer. I,ve worked very hard for 30 something years in the automotive bussiness. But in oct of 2001 I decided that it was time to slow down. I left my job to rest and look for some expert help. One thing lead to another and i recieved an ICD and Mitrel valve replacement on April 3rd 2003 at NEMC in Boston.I would say that i,m doing very well now as long as I behave myself.I,m still looking forward to cooler weather and less humidty
seeya Dennis`

[Elizabeth]

I was diagnosed in February, 2003 at the age of 52! Kept complaining to my big city cardiologist about the symtoms and the growing acuteness over the last 2 years. He said I must really be out of shape...get some exercise!!! I have a horse ranch I manage alone...no exercise?
After starting to have black outs just my country doctor tested and diagnosed and sent me to a specialist with his suspicions. It explained so much of my life and not being able to do what everyone else did.

Had a septal myectomy May 2003.

[swub]

Hi everyone,
I was diagnosed at age 56 after our family physicians discovered a murmer. I had a myectomy at Mayo a few months later and also received a pacemaker. I discovered this site at work a few months ago but was not able to register until now because I just got a PC at home.
Dr. Danielson advised me to have my children tested for HCM. At the time their Echocardiagrams were negative. Since I didn't have any symptoms until I was in my fifties, I'm wondering if my sons should be retested and when?
I had been told that this was a rather rare condition, so I was happy to see all the information that is available on your message board.
Elizabeth Ann

[Reenie]

How old are your children? It's generally thought that they should be tested every 12-18 months through the teen years or early 20's, then every 5 years thereafter if they are still negative.

Reenie

[swub]

They are 31 and 26. They were first tested in 1996.
Elizabeth Ann

[Reenie]

They should be tested every 5 years. Also, if they have any children, they should be tested too. Rarely HCM can be transmitted through someone who carries the gene but doesn't express the disease.

Reenie

[Cappy]

4 months ago...at age 34

[swub]

Hi Reenie,
Thank you for your prompt reply. I recently saw my cardiologist and told him about this website and your suggestion of retesting them every five years. My husband was impressed because without your reply, the subject might not have been addressed and we would have thought that once was enough. Also found recent query about genetic testing interesting. This was also something that I had wondered about.
Elizabeth Ann

[Reenie]

I'm glad that we could help. We'll gladly answer any other questions you may have. I do hope that your doctor will come here to read our site. The more medical professionals we can help learn more about HCM the better!

Reenie

[murrayfan33]

I was 28 when I found out. I was having chest pains just before my wedding,and my family Dr. found it from am E.K.G. That was in 1992!

[behrang]

I was diagnosed at age 56, after 2years of having near-cyncope episodes. Several different ECG, Echo, and 2 angio test in different clinincs all missed it. Currently I am under care in Mayo Clinic, Dr. Tajik, and may go under surgery. Behrang

[Lisa Salberg]

Welcome to the site!
I am glad to hear you are at the Mayo - they are very good!
I hope you find the site helpful. If you need anything feel free to call the office.
Lisa

[mikey2xs]

Let us take a look to see how old you/your loved one was when they were diagnosed?
If more then one family member has HCM please pick one person to answer for.
Lisa - I was 33 when I was diagnosed with HCM :) my name is Michelangelo

[baw578]

I was diagnosed at 5. Undiagnosed at 12. Rediagnosed at 17 during a 5 year followup. But I get VocRehab money for college.

[Queen Bee]

Hello everyone.
I was diagnosed at birth. When I was born in Hagerstown, Md, the doctors noticed a severe murmur. They flew me to Johns Hopkins University Medical center where they officially diagnosed me. Thay also did extensive testing on my immediate family- they were all negative and have stayed that way. -Queen Bee

[Lisa Salberg]

How old are you now (or... ball park range).
Many parents come here and LOVE to hear stories of babies born with HCM that are "all grown up and doing fine".
Thank you,
Lisa

[Bettie]

I wasn't diagnosed with hypertrophic obstructive cardiomyopathy until I was 64 , but I've always been told that I had a heart murmmur. I had a stress test and echo when I was 50, and at that time they told me that I had mitral valve prolapse. Then when I was 64 and went in for some minor surgery and had an ekg it showed up that I had hypertrophic cardiomyopathy. Also at that time my gynecologist remarked that I had a very loud heart murmmer and also another doctor made this comment so I was sent to the cardiologist and had an echo and he made the diagnosis. The only symptom that I seem to have is that I am very tired most of the day. My blood pressure stays around 120/70 so I don't need to take medicine. He said that if I show signs of shortness of breath or passing out I should call him. I have only had a couple of times when I thought I might be going to pass out , but I didn't. I'm still able to do all the work around the house and I also play the flute and haven't had any breath problems with that so I have been very fortunate. My brother was 60 when he died and the doctor's said that it was due to an arrythmia so I'm wondering if he had the same thing that I do.

[Reenie]

Bettie, please call Lisa and get in with a specialist. Your history should be evaluated so that you know your risk for sudden death. If you are a candidate they can implant an implanted cardiodefibrillator to prevent sudden death.

Risk factors:
1. Family members dying from sudden cardiac death.
2. Personal history of ventricular tachycardia/fibrillation.
3. Personal history of fainting.
4. Personal history of blood pressure falling instead of rising during stress test.
5. Septal measurement of 3+ cm.

Reenie

[Benny]

Let's see, it was last year and I was age 35. I just wanted a prescription for allergies. Next thing you know, I'm seeing a cardiologist to find out what that murmur was. Now I know what it was. Oh well, what can you do?

[Reenie]

Hi Benny. Welcome. Many of us went to the doctor for something totally unrelated to "heart problems" when diagnosed. My husband had gone to the doctor for a routine physical and was sent for testing because of a murmur. Read through our site and you will learn a lot. I don't mean to just read the message board, either, although it's great. Let us know if you have any questions or concerns.

Reenie

[Burton Borrok]

As a child I was told that I had a slight murmur. I was also told that I had an "athletic heart." In High School I was the fastest kid for the 60 yard dash, but could not do 90 yards. Didn't have too much trouble in the Army, but I learned how to dodge the really strenuous activities by then. In 1985 I had my first of four heart cath's and that's when I really started my noticeable, chronic SOB. Things have degenerated slowly since (and I picked up other conditions.) Lately I've taken to using power carts in the supermarkets because of SOB, chest pains, etc. I was in the hospital twice in December. Passed a chemical stress test in November, flunked another in mid December (two arteries) but the angiogram showed everything was fine. Again in hospital at the end of the year for SOB, chest pains, high blood pressure, etc. They didn't want to admit me, but didn't want to send me home either. They finally decided on in-hospital rehab. More tests were run, and finally, at the age of 71, I was diagnosed with HCM. There have been considerable changes to my meds since Jan 3rd when I was discharged, and my new cardiologist is following me on a weekly basis. To tell the truth, I don't know if I'm upset by the diagnoses or relieved. I guess both. I'm upset to think I may have passed this on to my progeny and relieved to finally have the condition identified and addressed. (I’m still hoping for a better tomorrow.)

[Reenie]

Welcome, Burton. I'm glad you now know what the problem is with your heart. At least now you know what to tackle. It sounds like you're on a path to figuring out what HCM is and how to deal with it. You might want to call Lisa Salberg at 973-983-7429. She has been dealing with HCM for years and knows all sorts of doctors who are experts at this disease. Please post if you have any questions, comments, or concerns that we can address for you.

Reenie

[blimpie1226]

I turned 36 years old last month and was diagnosed with HOCM last week. I have been "going to school" the last several days trying to educate myself as to what I am up against. I go in next month for several "risk stratification" tests. After that, I guess things will be much clearer regarding my long-term prognosis. This site has been very helpful to me already. Thanks to everyone for being so upbeat about some very serious issues!

Mark in Lexington

[Reenie]

What type of risk stratification tests are they going to do? I'm not sure how much your doctor knows about HCM, but many who don't know a lot about it try to do EP studies (electrophysiology studies) on HCM patients to see how high-risk the patient is for sudden cardiac death. It's been proven that these studies aren't very effective in patients with HCM. I suggest you call Lisa, her # is at the bottom of this page, and she will help you with getting in contact with a specialist. There are lots of cardiologists in the world. The gross majority of them know little about HCM. Just remember that.

Reenie

[BJ]

When I was 6 I had a kidney condition (Nephrosis) at the time my doctor told my parents I had a heart condition?? as to the nature unknown (ASD was mentioned) a murmur was present, and a normal childhood followed. At after graduating from vet school I had a cardiologist examine me (1987) and he suggested ventricular hypertrophy after an echo and not to worry, and this has been the case until Nov 2003 (45yrs) when I had an episode of dizziness. Since then and a very thorough work up DX was HCM very low risk after stratification. My Hypertrophy is only just at 1.5cm, but I seem to be having trouble settling into my medication (Atenolol 25mg) it seems at times to be worse than the condition, I get moslty neck fullness/pain? rather than chest pain, palpatations, ocassional light headedness, spontaneously or after moderatley vigorous exercise. I have a neck issue as well disks and this is confusing the neck pain felt. An MRI was done yesterday and hopefully this will sort that out.

[Lisa Salberg]

BJ -
Welcome to the message board. Your symptoms sound typical of HCM. The risk of SD is not directly related to your septal measurement. YOu need to look at all the risk factors which include: family history, history of arrythmia, syncope, hypotensive BP responce on stress test and MASS hypertophy.
A work up from a doctor who see many patients with HCM can help assess these issues with you.
Best wishes,
Lisa

[ginnilea]

When I was 16 I had an echo which diagnosed HOCM in '97, it must of slipped the doctor's mind because I was never told. :shock: I only found out when I requested to see my old records. When I was 21 I had a chest Xray because of my loud murmur in college which showed my heart was enlarged. A week later came the echo. Within 2 weeks I was on the table due to my arrythmias and septal size. I guess I lived to tell about it :wink: !

[Lisa Salberg]

It is amazing how often I hear stories like that last one!
BE your own advocates!
Lisa

[blimpie1226]

Hello Reenie:

Thanks for responding. My cardiologist says he wants to perform an "Exercise Cardiolite" test on me next month. Meanwhile, it's just 25 mg of Toprol daily and lots of anxiety. I have no idea what my septal measurement even is yet...Is that something that could have been measured during my echo? This is all still very new to me. I am learning lots about HOCM as we speak, but I am worried that I might be "losing time" as far as needing to speak with a specialist. Do you think I need to have this test and THEN seek a specialist? Wouldn't the specialist appreciate having more information going into the appointment?

Thanks for your input

[Reenie]

Hi again. The cardiolite test is basically when they use nuclear medicine along with a treadmill test to see how much blood the heart gets throughout the muscle during excercise as well as how you react during the treadmill test. Some of the things they will look at is your heart rhythm and rate and how your blood pressure responds to the excercise. This particular test is not uncommon with people with HCM.

What I was thinking when I posted that is that some doctors want to do electrophysiological tests, catheter tests, to check out the heart rhythm to see if they can tell if you're higher risk or not. That's the test that is often NOT a good predictor of sudden cardiac death in an HCM patient.

So far it sounds like you're on the right path. We're here any time you need us. Feel free to ask questions or just you can just talk if you want. :)

Reenie

[blimpie1226]

Reenie:

Thanks for the explanation on my upcoming test. That's pretty much what I THOUGHT the cardiolite test would be like. However, after reading your earlier post, I was beginning to think that there were other tests (more customized for HOCM) that I should be having instead of/prior to the cardiolite. Sounds like this test is a good "next step" for me.

By the way, I am already doing much better with the Toprol side effects than I was during my first week. The fatigue has pretty much subsided.

Thanks again.

[Janet]

I was diagnosed at 42, but my parents knew about IHSS 35 years ago when my brother was born with it at Children's Memorial in Chicago. He had a myectomy when he was 13 and died with a 4cm septum at age 23. I had an ICD put in 10-2002 and now my mom (64) was just diagnosed in 10-2003 and had an ICD put in also.

[Reenie]

Welcome Janet. We're glad you're here. We'd love to hear more from you.

Reenie

[Janet]

Dear Reenie:

Thanks for the words of welcome. Glad this group exists.

I made a mistake in my last post. I stated my brother was born at Childrens Memorial in Chicago, but I actually meant he was diagnosed there (I believe he was only a month old). There is or hopefully still is a plaque in his honor which was donated by all our family and friends upon his death.

Be well, Janet

[progers]

Hi everyone,

I was diagnosed at age 26 (I'm 34 now): I was surfing after a big party night and couldn't stop coughing and had trouble breathing for about half an hour. Eventually ended up at the cardiologists who diagnosed HOCM. I had no symptoms whatsoever before that, though I got sick in Indonesia (malaria I think) when I was 23 and the Indonesian doctor told me I had a 'strange heart sound' (murmur I suppose). No previous medical had picked up anything strange though. My brother has HOCM, but is asymtomatic: his children, aged 5 and 2 are so far ok with no sign, even on echo. Hopefully they will stay that way. No sudden death in the family either.

After diagnosis I remained pretty much symtom free until 2000 when I was again in Indonesia. Since then I've been on beta blockers: again, I was generally fine, though 6 weeks ago I started getting headaches, dizziness and trouble thinking - even at rest. Could be blood pressure related.

I'm determined to go on as normal as possible and will still surf when I feel good. Living in Australia means lots of time at the beach and in the water!

Best,

Paul

[Burton Borrok]

Hey Paul,
Thirty four and a University Prof. Way to go, good buddy. I’ll bet your Mama is proud of you.

You know, I have a dry cough when I lay down in bed. I think it’s from the drugs I (we) take. I wonder if anybody else gets that when changing positions. Didn’t have any coughing associated with my last HOCM attack that I can recall, but I was breathing like a steam calliope, had a tight chest, and dizzy – but that might have been the result of over-oxygenation. I do oxygenate well.

Glad to hear your feeling better, and having a great summer.
Best regards,
Burt

[progers]

Hi Burt,

Hope you are well. My coughing when I was diagnosed was due to pulmonary edema - it was blood I was coughing up! I've had that happen on half a dozen occassions over the last 8 years, but I've usually brought it on myself: no sleep, drinking too much and then getting up and exercizing. I've learned to not do that, so I haven't had an episode of pulmonary edema in years.

I am still getting the headaches, but I've been taking it easy and at least my head is a little clearer. I'm convinced all this is related to low blood pressure (I've got a 24 hour BP monitor on now). Will go camping and surfing on the Great Ocean Road here in Australia this weekend - anything to get away from the heat here in Melbourne. Really hot days make usually mean my blood pressure drops (due to vasodilation).

Hang in there and remember spring is just around the corner!

All the best,

Paul

[Reenie]

Hey Paul, remember we're in the midst of winter here! I have a whopping 15* F as I type! :lol: Enjoy your weekend but dont' overdo it.

Reenie

[progers]

Hi Reenie,

I will take it easy. Even though it is summer here, it will get cold when you guys are getting great weather! Could you believe I miss the seasons and snow - especially at Christmas when its hot here: just doesn't feel like Christmas!

Take care,

Paul

[Abbygirl2]

Hi, I was diagnosed at age 24. I hadn't been feeling well for a while. I had several EKG's done between ages 19 and 24. The Dr's always told me it was panic attacks. (Shortness of breath, dizziness, chest pain). Finally, something odd showed on the EKG after yet another trip to the ER and that led to my diagnosis. I am the only one with HOCM(so far) most family members have been checked-(all immediate family members have).
Both my sons(ages 11 and 3) have been checked-so far so good. I pray that my kids don't get this. Thanks
Abby

[Swanson]

I was 5 years old and was diagnosed because my heart stopped during surgery on my ear. I had chronic ear infections but they had not picked up a murmur before this that I know of. My mom told me that the poor surgeon came out of the operating room looking as white as a doctors coat.

[angall]

Hi eveyone
I just became a member, I am truly impressed by all the postings, concerns and emotions.
When I was born, 1952, the doctor told my mother that I was a blue baby and nothing could be done to help....just let her do whatever she can do. At 16 I would become SOB when climbing a flight of stairs. I was diagnosed as having rhumatic fever and was treated with antibiotics. At 17 I got married and became pregnant. I gave birth to a beautiful baby girl. In 1971 I had to go to the emergency room because of having horrible pain in my left side. The next day the doctor did emergency surgery and removed my gall bladder..he then detected a heart murmur. I was sent to cardiologist in Allentown, Pennsylvania where the discovered I had IHSS and needed surgery. I had one surgeon come into my room in the hospital and told me he was going to do the surgery there in Allentown. A few hours later my cardiologist came in and I told him I met the surgeon that was going to do my surgery. He said WHAT???? I told him and he said this man had never performed this type of surgery before and that he was making arrangements for me to go to NIH in Bethesda, MD. After a few weeks of tests at NIH they did the surgery. I had the best doctor in the world...Dr. Morrow, who, by the way, passed away from IHSS a few years later. I have been through a lot with giving birth to another child, a boy, losing that boy when he was 15, getting divorced, remarry, having an ablation, inplant of a pacemaker, going straight lined 4 times and moving to Minnesota where I became a patient at the MAYO Clinic in Rochester. They did tests in 2000 and discovered I had another obstruction and needed surgery again. I had the second surgery in Nov. of 2000 and had an ICD inplant. I am still working but now facing heart failure and severe fatique at times. I know I have an Angel looking over me from doctors pointing me in the right direction. I will forever be greatful.
Esther (Minnesota)

[Reenie]

Esther, your story is amazing. Thank you for sharing it with us. Welcome to the HCMA.

Reenie

[angall]

It was my pleasure to share some of my experiences. It helps to talk about them now and then and this seems like a group of people that will listen (read) and give their true opinion. I have heard that God will only give you as much as you can handle....and I'm still here...and sane...lol
Esther

[Burton Borrok]

Hi Esther,
You are welcome here.

You said, “I have heard that God will only give you as much as you can handle....and I'm still here...and sane.” Well, I’m out of my mind, - but I’ll be back in fifteen minutes. (Never did have a firm grip on sanity – couldn’t see the point of it.)

You are absolutely right about your doctors sending you to the right place. The Mayo is one of the top three places in the country for the treatment of HCM and HOCM.

I read your story, but can’t rightly comment. I’m a man, and my wife had both our children – we still have them both. Our daughter had twins, and we still have them both. We were never divorced, and never remarried. I do have lots of ailments and have been in the hospital many times. We are almost the same age – except I was born in 1932. Some say I’m still a child, but I’ve had a wonderful life so far. My optometrist said I should see 20/20, so I’m waiting to see 2020. (Heck, I’d only be 88 – why not?)

You can see I’m rambling, because once I welcomed you I had nothing else rational to say, except that this is a great group – they even put up with people like me.
Burt

[angall]

Hi Burt
Thank you for the nice welcome. I can't say I have always been sane...I did have two children...lol.
I lost my son to a massive heart attack/HCM at the age of 15. We didn't know he had any health problems. He was very active in sports, hunting, fishing, boy scouts, band and school. He was always on the go and never told us of any pain, etc.... We did have him tested for HCM, but the echo always came back negative. My son was hunting with his father and friends at the time he passed away. They were sitting on the back of the truck and Michael (my son) fell over on his father. Being the clown that he was, his father thought he was joking around and asked him to get up. Michael started to gasp for air and they thought he had a piece of beef jerky caught in his throat. They tried to dislodge it, and finally realized that wasn't the case. The adult that was with them started CPR while his wife called the ambulance. After the ambulance arrived, she called me and told me what had happened. She picked us (my daughter and I) up at our house and took us to the hospital. Upon arrival we tried to get answers. My ex-husband was in shock and didn't know what was happening. The nurses told me the doctors were working on him in an examining room and didn't know anything. It was then that I had a difficult time breathing. Brenda (the lady that took us to the hospital) went to the desk and told them my problem. They immediately took me in another examining room. They started oxygen and told me to relax. RELAX???? How could I not knowing what was happening to my son!! My ex-husband came in the room and said, "Oh my God, your lips are turning blue". I passed out and when I came to, I was in a hospital bed with a tube down my throat and an IV. Because of the tube they wouldn't tell me about my son. Although they knew I wanted to know by the look on my face and the expressions I was making with my hands. The doctor that admitted me decided I NEEDED to know, but first they had to remove the tube. They removed the but and 2 nuns, my doctor, 2 nurses, my ex-husband, my daughter and my nephew came into the room. I went into shock. I didn't cry until 2 days after I was told. Who would ever expect a parent to out live they child??? I was highly medicated and didn't care if I lived or died. They had to keep an eye on me because they said I was suicidal. That has been 10 yrs ago and I still feel the loss every day.
I did smile when I read your posting. Thank you
Esther (Minnesota)

[Pam Alexson]

Esther, welcome. I am sitting here in tears as to what horrors you have had to face in life. You have to be one strong woman to still be able to walk upright . Having HCM and all the problems , surgery's and complications is one thing but going through the loss of your son has to be the worst pain you have ever had to endure. I have not had to experience the loss of one of my children and hope and pray I never have to . I did nearly lost my mind in 1994, 3 days after christmas when my 18 year old nephew , experiencing severe depressive disorder , took his own life. I will never get over that loss as my mom found him shortly after he suicided and I perfomed CPR on him and breathed the last breaths of life into him. I prayed to god and pleaded with him to give some if not all of my life to Christopher and to please, please bring him back . As my brother had a very troubled 1st marriage and divorce, he was awarded custody as long as my mom and I shared equal responsibility. I have had trouble rationalizing at times especially now how someone takes their life when others lose theirs to no hand of their own. Anger and at times guilt revisits me often as I wonder what he would be doing if he were alive now and also what if anything I could have done to effect a positive outlook for him to see in his own life back then. As a trained professional I know I need to not blame myself , anyone else or do the woulda , coulda , shoulda's . He was ill . Being human it is hard to do this. Being a mother (surrogate) to him it has been even harder. I wish for you a road of peace , tranquility and balance . I pray that you only have little obstacles from here on in. May God Bless You. Pam

[Burton Borrok]

Ladies,
What G-d sees fit to do, he does. It is not for us to question his motives, desires or needs. I only know if we concentrate on tragedy long enough, we will all wind up in rubber rooms, fluffing our walls.

It would be far better for all if we concentrate on the lives they did have to enjoy, and the enjoyment we had with them. G-d grants each of us just so many days on this earth – but he leaves it up to us to find the enjoyment therein.

Now smile, put away your tears, and go do something nice to honor their memories.
Burt

[angall]

Dear Pam
I am so sorry to hear about your loss. You were like a mother to him and I'm sure loved him as though he was your son. I have prayed time and time again that no mother/father should have to through that ordeal. Do you want to hear something strange? I believe after the initial shock, anger, asking why, I became stronger. I have the belief that there are far more people in this world that had problems (medical etc...) than I do. I would like to help. As a matter of fact, my cardiologist at the MAYO Clinic asked if I would attend a seminar and speak about my experiences and how I feel about life today. I told here I'd think about it, but I do get very nervous in a room with many people. Most of the time when I go straight lined it is because of speaking in front of people...in the past, it was giving awards in memory of Michael, I just went straight lined last year and I was just driving home from work. If I build up enough courage, knowing I might be helping others, I will do it if my cardiologist is right beside me. Going straight lined is very scary. Yes, I have gone through a lot, but so has many others. I have been reading posts from many people and my heart goes out to them. I wish I could ease their pain and answer their questions..and poof...they would be more confident. From what I've read, there are many people here that listen and give their advice or opinion. Thank God there are. There are times we all need to talk and hope that someone will see the picture a little different or agree that what we are doing is right. Having a heart disease is so puzzling..nobody knows everything, that is why there is still research. Who knows.....maybe a cure??? Not in my time, but hopefully for young people that have so much to live for.
My prayers are given to all that are confused, having surgery, under going new experiences. It is the unknown that we fear.
Thank you, Pam and may God keep you in his loving hands.

[angall]

I am sorry if I offended any one by my post.

Esther

[Reenie]

Esther, I don't think you have offended anyone. We welcome all points of view. You will see that there are some we disagree with, but we don't delete threads or edit them just because we don't like what someone has to say. I think you have a valid message to share with us. We're here for you and I, for one, am enjoying what you're adding to our board.

Reenie

[Laoshur]

Esther and Pam,

My heart goes out to both of you. I thank God that you have both been able to survive these tragedies and come out stronger.

Rhoda

[Pam Alexson]

Esther if you affended anyone by your post then by gosh what have I been doing over the past year. I in no way got the feeling or idea that you were saying anything but what you said. There was no implication that anyone was questioning god's intent or that we focus on the negative aspect of what happens to us . I think that you like many of us rejoice in each day and in those lives of the ones we know and love. I like you have used all of what has happened to me as sharing to help lessen others pain so that they can see the brighter day. It would be nice if you can speak publicly to others . I don't want you to be injured by it though. Those who are interested could benefit from listening about how you have learned to go on. Iknow that for the multitudes experiencial therapy or basicly "been there , know what your saying , basic validation ," allows troubled individuals to move on when they feel alone. So please do not let the opinion of one person or rather their interpretation of the written word dissuade you from posting I would miss what you have to say and know others would agree as Reenie already stated. Sorry Burt, now I know you meant no harm right and neither do I. You Know that when a person posts it is hard to communicate the true words in a flat dimension but sensitivity goes a long way in welcoming new people. Best to all . Pam

[Burton Borrok]

My goodness,
I must have been speaking in double speak. I absolutely men’t no disrespect or criticism of your emotions or postings. I guess in one respect or another we all have been there. I just felt the hurt, and tried in my feeble way to try to ease it a bit – but I also know it is good to be able to speak about it to a friendly ear.

When I was a pre-teen I contemplated suicide. I have since learned it is not a rare occurrence at that age. I guess the only thing that stopped me was the not knowing how my family would handle it. Boy, am I glad I didn’t go through with it.

I am truly sorry if my comments were taken other then the way I meant them. I apologize.
Burt

[Pam Alexson]

It is Ok Burt , I do hope Esther has not left us though . Pam

[Burton Borrok]

I certainly hope not. That would really be a loss.
Burt

[angall]

Hi again
All is well. There is no hard feelings. I just didn't want to jabber on where, maybe, I shouldn't have been. I certainly didn't come here to "cry on anyones shoulder" or to make anyone feel uncomfortable. Now that all that is cleared up, Thank You, everyone for sharing your thoughts. That is what we are supposed to do...right? I was checking out "How to become a member" and "How to give donations". I know more and more people are needed if research is to be continued and people educated about this horrible heart disease.
I am going to check out some posts and hopefully reply to one or two before I must go back to work.
Keep up the good work everyone, you've made me feel like one of you :P and certainly helped.
Thanks again
Esther

[mtlieb]

Glad to see you back with us, Esther :)

You are more than welcome to 'jabber on' about anything and everything you feel the need to, and we will all be here to support you in any way we can. This is probably your first opportunity ever to share your past experiences with fellow HCM'ers. We all understand how emotional that can be at times, given that you finally have the opportunity to speak with folks who can understand completely what you are dealing with.

We're happy to have you here with us. Please post as often and as much as you feel comfortable with. Nobody is here to judge you.

Take care,

Jim

[shirleymahoney]

Ladies

Iam very sorry for your losses, i could not imagine losing one of my children, my son also has this nasty disease a mild form of it but never the less he has it, you guys are strong people to endure what you have may god be with you all

Shirley

[Burton Borrok]

Dear Esther,
I must apologize if you thought my previous post was in any way judgmental. It was never meant to be. At this spot on your dial you can complain about anything and everything and find a number of sympathetic ears happy to listen, commiserate, and make (hopefully helpful) comments.

I felt your pain and was trying to help lift your spirits. I guess sometimes my eye teeth get in the way of my tongue and I can’t see what I am saying. It’s like two fish that are swimming along together when they run into a wall. One turns to the other and says – “Dam.”

I was very happy to see you post again. As I said initially, you are welcome here.
Burt

[angall]

Thank you so very much for your kind words. How old is your son? Just because he has a mild form of this nasty heart disease, PLEASE, PLEASE have him get timely echocardiograms. I don't want to scare you, but when they did the autopsy on my son, my cardiologist told me Michael (my son) had a mild form, too.
Sending my prayers
Esther

[angall]

Hi Jim
Thank you for understanding. Yes, you're right, I never talked to anyone that has HCM before let alone anyone understanding what it's like gasping for air, having heart failure, etc..
God bless you
Esther

Burt,
You are so silly. I feel comfortable communicating with people, especially when these people know how I feel, know what I am going through, can talk about HCM opening, with knowledge. There is still so much I don't understand, but I'm sure after being here for awhile, I will be enlightened.
Take care & I'm sure we'll communicate again.
Esther

[jujemendoza2002]

I was diagnosed at the age 13 after complaining of lots of shortness of breath and chest pain over a few years time, if my father had not died of a heart problem when I was only 14 mnths (he was 30) and later I had son Mikey was diagnosed at about 1 mnth and died at the age of 6 from Sudden death, and my daughter Angel, now has a abnormal ekg and is otherwise healthy.

[angall]

Hi Jen
I am so sorry to hear about losing your son, been there, done that. How old is your daughter? Like I have asked mothers/fathers with children that have HCM....PLEASE continue timely echocardiograms! They will indicate the rate of this disease. When you were diagnosed with HCM, did they put you on medications? What kind of tests did they do in order to come to the conclusion that, yes, you have HCM? What kind of medications are you on now?
Please keep us posted.
Esther

[Kimberlea22]

My family found out June 22 of this year, i found out the next day when i woke up. i had went to an arcade June 22 with a good friend of mine and after a round of Dance Dance Revolution i told my friend i didnt feel well and i collapsed. Luckily, the owners knew cpr, someone called 911, and 50 ft away from the arcade was a police officer. I was taken to the nearest hospital, where my family physician just happend to be. then flown to Children's here in Omaha. I was coded twice, and they were goning to give up on me. Luckily they didnt. :) they put in my pace maker/ defibulater june 25 and then 5 days later i was out of the hospital. My dad called all the news channles. They ate it up, i am a 15 year old girl who almost died. thankfuly i didnt.
http://www.theomahachannel.com/family/3472497/detail.html

[Lisa Salberg]

Kimber,
I am thrilled you are OK - It is nice to hear your story with a happy ending!

Best wishes,
Lisa
:D :D

[mtlieb]

Wow Kimber... what a story! Thank God you got the medical attention you needed as fast as you did. You are very fortunate. I guess one good thing to come out of all this (other than your still being alive of course) is that you brought about awareness of the disease through the media. I'm so glad to hear that everything has turned out well for you and that you are doing much better now. Please take care. Jim

[lilChickenbutt]

that's my daughter... :lol:
we were very lucky that all came out well, and with this i was tested and i found that i have it too. My husband wanted to tell every one, we didn't what any one to go through what we just did... so we put it all over the place.

[Reenie]

Kimber, Julie:

We're so glad you're getting information. I think you've found a good place for information and we're here for any questions you might have.

Reenie

[Tigger1]

Hey Kimber,

What a great ending to an amazing story. I have twin 15 year old daughters that love DDR. Luckily they were tested in Feb. and show no signs of HCM. It was discovered in me last Oct. I had a septal myectomy on May 17 and am doing quite well.

Keep up on your DDR and live life to it's fullest...

Tigger1

[angall]

Hi Kimber & Julie
Thank you for sharing your story with us. They say everything happens for a reason...it seems like Kimber was at the right place at the right time with people that knew what they were doing and Julie found out that she has HCM too before anything serious could happen. We all have our own Angel watching over us. Thank God you are back on your feet. Take care and God Bless.

[TammyC]

I was diagnosed at 25. I'm now 34.

[angela woods]

I was diagnosed with hcm at age 35. I was symptomatic for a few years before diagnoses. I was told I had anxiety. It got too the point where my chest hurt so much it was impossible too work. after my diagnoses I was very relieved. Looking back now I had always felt like I just couldnt keep up with the other kids. my heart felt tired and I was sleeping all the time. after my diagnosis I was told i had ventricular tachycardia and had an icd placed in my chest. So far im the only one that has hcm in my family.

[jswatson]

I was slowly diagnosed over a period of about 3 yrs. 1976-1979, I was 5-8 yrs old. I am now 33. My parents noticed I was slowly gaining weight, getting more and more tired and SOB. I grew up in rural central Illinois and the doctors there back then had no clue what to do for me. One even told my parents I would die and they should quit wasting money on me and let me die in peace. Fortunately Mom and Dad relied on their faith and determination and we were lead to the Baylor College of Cardiology in Houston. I was truly diagnosed (with IHSS/HCM) by Dr. Michael DeBakey. They immediately began treatment by medication. 4 years later after huge doses of medicine I had ventricular resection (myectomy?) at the Methodist Hospital in Houston at the age of twelve. Five days later Hurricane Alicia paid a visit to say "get well" and I went home five days after that. The difference was night and day. Afterward my father was diagnosed with a mild form of HCM. My second brother was diagnosed with a less pronounced case. Mine is fairly strongly pronounced and last October 2003 I experienced AFIB for the first time. At the last moment before Cardioversion I re-acheived correct rythm and I was then placed on rhythm meds and coumadin. I do not like Coumadin. Thin blood is just one more issue to deal with now. All my life I have battled weight gain. I hope to control it better in the near future with more attention paid to it. I will soon have my children screened. I pray that they do not express it.

[Lisa Salberg]

Welcome to the site. We have been diagnosed for about the same time. I am very happy to hear that you were blessed with good care as a child. You have my best wishes that your children are clear of HCM.

Best wishes,
Lisa