CONFUSED, what does stage one mean?

[cls]

My son is almost 21, and a junior at K-State university. He was just diagnosed with HCM four days ago. Because he and his younger sister had both been diagnosed with exercised enduced asthma, he took a voluntary EKG that was offered to the students for early detection of HCM. He was called in to be told he was in the first stages of the disease. He told me he was going to have to take two treatments and have another EKG in six months. He is not sure what the treatments will consist of, or when they will take place, just kept telling me not to worry, all was going to be fine.

Would someone be so very kind as to fill me in on what stage one is, and what type of treatments he may be looking at? He told me his doctor said to continue living as he had been, eating right and exercising moderately. He did tell me he may have to begin eating better, typical teenager. He keeps telling me there is nothing to be concerned about, however I have read articles on the net, and I'm not so sure he is not trying to protect me. Bless his soul.

I am a single mom, who has raised two wonderful children basically on my own for the past 12 years, since their dad left us. My son has always wanted to protect me, not realizing I was the one protecting them. I have raised two very independent and wonderful children, but I want to know what is going on. I am very aware that God is in control of everything that is taking place, but would someone please give me some information? Thank you and God Bless you. CLS

[SharonBates]

Hello CLS,
First I want to welcome you to our message board, the HCMA, and to one of the most supportive and wonderful places to find answers about HCM. I don't know what your doctor is referring to about "stage 1" but I did a search on "stage 1" and found a reference to heart classes

Heart patients are classified as "New York Heart Class" 1-2-3-4
1 = someone who has no symptoms (walk up and down stairs fine)
2= mild symptoms (gets a little winded)
3= more sever symptoms (has a hard time walking up stairs)
4= extremely sever symptoms (what me walk up stairs - not)

You might want to get a clarification from your son's doctor to determine what he is referring to. Also, get familiar with some of the great features of this website and the loads of information that it contains.

I also want to take a moment to introduce myself to you. I am Sharon, Anthony Bates' mom. Anthony was the K-State football player that passed away in July, 2000 from undiagnosed HCM. You are fortunate to be in Manhattan where the community has been educated (by annual heart screening events from my foundation, the HCMA and Coach Bill Snyder) regarding HCM. It seems the Manhattan, KS community is very much in tune to heart issues. Coach Snyder has been a wonderful supporter of my foundation work (The Anthony Bates Foundation found at www.AnthonyBates.org) and the heart screening effort that we do every year with K-State's support. What a small world we live in.

Has everyone in your family been screened? We offer free echocardiogram screenings through our annual events in Kansas. Our next event will be in the fall 2005.

I know that you will find great information on this site. We are here to support you in your quest for answers. It's okay to be concerned but know that knowledge is power and the more knowledge you have about this sometimes mysterious condition, the more you and your family can manage the condition. HCM is not a death sentence if diagnosed early and managed well. I wish you all the best in your search for answers and support of your son!

Best Regards,
Sharon Bates
Anthony's Mom

[Sarah]

welcome

I'm glad you found us and Sharon feels the community there is aware of HCM, however, I would ask your son to find out more about the "treatments."

I was diagnosed 23 years ago and have been reading/moderating this board since it began and I've never heard anyone refer to "treatments" in this manner. Either you have symptoms of HCM and take medication, or you don't and you don't. So I'm kinda confused about what is being referred to.

I know it is easy for things to get garbled third and fourth-hand. You should direct your son to this site, too, if he hasn't gotten here yet.

And please make sure you and your other child get screened. If you don't have life insurance yet, please get some before you get tested.

Take care,

S

[Reenie]

I wonder, does your son mean he had an echo or an EKG? Just wondered since an EKG alone doesn't show HCM. Welcome to our site. I hope to hear more from you.

Reenie

[Burton Borrok]

Hi Mom,
Sounds like you did a great job with those kids. Let me just say that there are all kinds of symptoms and conditions with HCM – including no symptoms at all, but I wanted you to know most of us live full lives, and usually die of something else. For us, to die from HCM causes is a very big deal, so as you read through these postings and others you might think it is a disastrous situation. Let me tell you about my experiences with it.

I was born at a very early age, and have been getting older ever since. At about the age of four I was told by a doctor that I had an enlarged heart and a murmur. I actually thought it was a good thing and I had the potential to be some kind of super athlete. Symptoms accrued slowly, and like many of us here, it was put down to being out of shape, or other nonsense. Then it was because I worked at a desk and didn’t exercise enough. Then it was this, and then it was that.

I was finally diagnosed at the age of 71, when I had some HOCM episodes that couldn’t be put down to other causes – though some doctors still try. All in all I have over the years collected 16 diagnoses, and quite frankly getting the diagnoses of HCM was a relief, as it explained much of my past symptoms. Now, for whatever it’s worth, I would suggest everyone of the same bloodline get an echocardiogram (echo) and probably an EKG to go along with it, to check for HCM with a doctor and tech who are conversant with the disease. If HCM is found it should be treated properly. If not, the test should be repeated periodically to make sure it doesn’t present itself later.

As you dig through the material on this site all the pieces will start to fit together and a complete picture will emerge. What you probably see now as a giant forest fire just might turn out to be a match in a darkened room. Take time to investigate – and please ask your son to also find out all he can about it. As our founder says – Knowledge is Power.
Burt

[Linda]

CLS, Welcome. I'm glad you've found us.

Your son is almost 21. His health info is protected info. However, if you talk to him and suggest he ask the doctor to share this info with you, it can be done. He has to initiate the consent to share it. It would be ideal if you could meet with the doc and your son at the same time, but maybe a conference call will do if you are a great distance away. When your son realizes how much more stressful the gaps in info are than knowing the whole picture, he will most likely be willing to do this. Our kids have a way of protecting us from things that would worry us and at the same time, it protects them from an over-protective parent. If he really didn't want you to know anything, he would not have told you any of this. My son is also a college student, almost 22. It's a tough age of transition when it comes to these types of things.

Good luck, please keep us posted. Linda

[Lisa Salberg]

Welcome to the HCMA.

Although the postings above have addresses most of your questions I would like to review something for you and other new readers.

1. You can not have "a little HCM"
2. There is no such thing as "Mild HCM" - there is mild hypertrophy and mild symptoms but HCM is HCM and we need to look at RISK.
3. There is no such thing a NO RISK HCM there is however lower risk groups.


HCM is a tricky disease with may partial answers but no ONE answer for the masses. Each patient and each family has to follow the road of screening, risk stratification and repeat these steps many time throughout life. It is a road not easily navigated but with help one that you can find your way through and see that life can be pretty good even with HCM.


Best wishes,
Lisa

[Pam Alexson]

Welcome to the site and please read as much as you can here and ask all the questions you think of , it will all begin to make sense in time .

Pam

[Jillmgk]

My 12 1/2 yr old son was diagnosed last week when he was screened for something else entirely. We were told that his heart function is normal and that he has no restrictions of any kind. It was a shock- we know of no one in our families with sudden death due to HCM. He was actually being screened for an aortic root dilation or aneurysm that does run in the males of the family, and he shows no sign of that. Anyway, I am guessing that this is what you are calling stage 1.

Anyway, I am questioning what the "treatments" were that your son was going to have. I am very new to this. AT this point the pediatric cardiologist said that he does not need meds and he can continue his sports as usual. He will have another echo the 1st of next year.

[SharonBates]

Hello Jill,
Welcome to the message board! I hope you find as many answers on the message board and on this wonderful web site. Of course, most answers lead to more questions. I am sure that in just one weeks time from the point of diagnosis the questions in your mind and about your son's life ahead have been quite overwhelming. Don't forget to breath and take some time to digest all that you have learned and will learn over the next few weeks, months and years ahead.

Please call the HCMA office and set up some time with Lisa Salberg about getting connected to an HCM specialist. You are an advocate for your son's health and safety. Consider your son's new heart issue a fresh wound that needs your attention. Does the wound need a big bandage or a little bandage? Sometimes with proper analysis it could be determined no bandage is needed...only the experts (you and your doctor) will know the right answers.

Lifestyle changes (whether they are sports, or activities, or expectations as a young adult) don't have to be made over night. These are things that are very personal and depending on the uniqueness of your son's condition may not need medication or restrictions. Again, a very personal decision that is best left up to you, your doctor and with the guidance of an HCM specialist that will be able to educate everyone.

What you have been learning over the last weekend may be way too much information for a 13 year old to absorb (let alone a Mom in fear of losing her son). Take each day as a new opportunity to learn more about HCM. This condition is not a death sentence if "detected early" and "managed well." Knowledge is the key to a successful productive life for your son! We are here to help!

Best Regards,
Sharon Bates