Questions

[dsadixon]

My brother passed away 3 weeks ago. His autopsy stated that it was due to hypertrophic cardiomyopathy that had existed for years. As I investigate more and more about this disease, I have several questions.

1. He had coronary cathertization (with the dye) done 6 days before he died. They didn't find any blockages and stated that they did not know why his heart was only pumping at 27%. Shouldn't the doctors have been able to notice that his heart was enlarged, or wasn't there a way to do more testing to find out exactly what the problem was?

2. I've read where some people have recovered from a sudden death experience. How is this possible and what type of reaction time and equipment would be required?

3. I understand that we can get this disease from our parents. To myknowledge, no one else in our entire family history (dating back to great grandparents) have had this. Does this mean that I may still be at risk? What type of tests should my doctor give me to insure that I, my children or my brother's children are not affected?

Thanks for any questions you are able to answer. I know that all cases are different for different people. I'm just trying to understand all of this since life has made me take a crash course in the subject.

Stephanie

[Reenie]

Re: Questions

My brother passed away 3 weeks ago. His autopsy stated that it was due to hypertrophic cardiomyopathy that had existed for years. As I investigate more and more about this disease, I have several questions.

1. He had coronary cathertization (with the dye) done 6 days before he died. They didn't find any blockages and stated that they did not know why his heart was only pumping at 27%. Shouldn't the doctors have been able to notice that his heart was enlarged, or wasn't there a way to do more testing to find out exactly what the problem was? The cath was probably looking for blockages. The beset test to tell if your heart is enlarged (HCM) is an echo. It's just an ultrasound of the heart. That test in conjunction with an EKG is the best way to diagnose HCM.

2. I've read where some people have recovered from a sudden death experience. How is this possible and what type of reaction time and equipment would be required? Usually when people recover from sudden death there is a defibrillator on the spot. Some people with HCM have one surgically implanted to avoid a sudden death experience.

3. I understand that we can get this disease from our parents. To myknowledge, no one else in our entire family history (dating back to great grandparents) have had this. Does this mean that I may still be at risk? What type of tests should my doctor give me to insure that I, my children or my brother's children are not affected? Most likely someone in your family carries the mutated gene that causes HCM. It's probably one of your parents, then one of their parents. It's not uncommon to not notice a connection to "heart problems" and HCM since HCM hasn't been diagnosed as such much more than 15 years ago, but it has also gone by loads of different names. You should probably get an echo and an EKG on yourself and your kids. Your brother's kids definitely need to be screened with an echo and an EKG. Preferably this will be done by a cardio who knows a little about HCM. Your brother having passes away suddenly at a young age is one of the major risk factors for you to have the same type of scenario if you also have HCM. You need to make sure your doctors know about this.

Thanks for any questions you are able to answer. I know that all cases are different for different people. I'm just trying to understand all of this since life has made me take a crash course in the subject.

Stephanie

First of all I'd like to say I'm very sorry for your loss. I've answered your questions in bold above. Please feel free to stick around here and learn more and ask all your questions. Our site is one of the few places you can go where people will completely understand.

Reenie

[Ronnie]

Stephanie
I'm so very sorry for your loss. Add to that your entire Family needing to learn about a "Disease" they never heard of. As Renee mentioned you will all need to be tested, by a knowledgeable Cardio. I live South of you, in a suburb of Detroit. I was dx about 16 years ago & see a GREAT Cardiologist, who I think is extremely knowledgeable regarding HCM. If you have any questions/would like more info on my Dr-feel free to PM me.
My sympathy to your Family.

[Sarah]

tests

You have my deepest sympathy for your loss.

You may have grounds for medical malpractice, but you would have to talk to a lawyer and give them all the medical records for reviewing.

An echocardiogram, as mentioned above, is a non-invasive ultrasound on the heart and would show any hypertrophy. The actual heart itself may not have been over-sized, but considering the low ejection fraction and the length of time he'd had HCM, that is unlikely. It is my understanding that they are not looking at the heart itself while doing a catheritization.

Please make sure that you and your family have life insurance on everyone before getting screened.

You should all have an electrogcardiogram (ECG/EKG) AND an echocardiogram. Adults over 30 should repeat the echo every 5 years and kids need them every year. age 20-30 every two years.

Good luck with everything and let us know how your screening comes out.

take care

S

[dsadixon]

You should all have an electrogcardiogram (ECG/EKG) AND an echocardiogram. Adults over 30 should repeat the echo every 5 years and kids need them every year. age 20-30 every two years.

Does this mean that if my initial screening show that I don't have hypertrophic cardiomyopathy, that there is STILL a chance that it may develop later in life? I guess I was under the impression that if I got tested and everything showed normal, then I was "in the clear" so to speak. So, that also means that my son and my brother's son would basically have to get tested for the rest of their lives as well? Thanks for sharing that bit of information. I guess there's so much more for me to learn about this disease. Since I'm also a diabetic, do you know if this has any affect on type 2 diabetes?

Stephanie

[Cynaburst]

You have to keep getting tested throughout life, because, as you said, it can show up at any time. Some people are diagnosed in their 80s.

I don't know about the diabetes connection, if any. I suspect that they are two entirely different conditions. Unfortunately, just cause you have one problem, doesn't mean you won't have another.

I personally am hypothyroid, have had a benign brain tumor, have HOCM, and have had melanoma. Lucky me. No relationship between them all.

[Largehearted]

Stephanie.

Allow me to also express my condolences regarding the loss of your brother as well as the "loss of innocence" now that you and so many in your family will be getting tested for HCM.

There is a pretty steep learning curve, but it is manageable. This on-line community is the best place in the world to research and learn about HCM in a supportive atmosphere.

I pray for peace as you and your family walk through these very difficult times.

Leon

[Abbygirl2]

Stephanie,
My heart goes out to you and your family right now. It is very frightening at first when you are suddenly bombarded with all this information and even moreso when a loved one has suddenly died, from a disease that most people(and some Dr's) have never heard of before.

As everyone has already stated, you all need to be tested, preferably by a reputable cardiologist who is well versed in HCM. You should also pass the word along to any blood relatives(aunts/uncles/cousins) so they too can be tested.

There is a great deal to learn about HCM, but this is the first step.
Right here is the best place to be if you have questions or just want to talk. Many people here know all too well the sorrow of losing a loved one to HCM.

Take care,
Pam

[dsadixon]

I want to thank everyone for all of the support I've received so far. I do plan on getting tested/screened. Lately, I keep having dreams of the doctor telling me that I also have HCM. I know that it's just anxiety building up over everything that has happened lately. I have an existing dr appt in about 2 weeks with my family doctor. I plan on telling her what happened to my brother and see if she can make any recommendations to a cardiologist. I figure that would be a lot better than picking a doctor out of the phonebook by myself. Thanks again for the support. You all have made this whole experience a little more bearable. I will keep you posted.

Stephanie

[Reenie]

I think it's a great idea to include your regular doctor in choosing a cardiologist. If you are diagnosed he/she will be coordinating with the cardio anyway. I'll keep my fingers crossed that neither you nor any of the children will have HCM. I do think you should know, though, that your brother's kids have a 50/50 chance of inheriting the gene that causes HCM. I do hope and pray that it missed you and the kids, though. Please let us know how it goes.

Reenie