View Full Version : recently diagnosed.
03-16-2005, 04:00 PM
i was diagnosed yesterday my with HCM I asked my brother and he said he has had it for years and never mentionedi t to me. My folksd are well they are 70 mom and dad is 75 . They were never tested but they have had no serious med probelems.
my septum is at 1.3 the only symptoms i have is after eating i get shortness of breathe and chest pain. and thats it. I am going for the holter and a stress test next week. I am 45 and my brother 50. I went to doctor for a reg exam and noticed a heart murmur so i went for an echo. all other tests on echo were normal.
how should i proceed? any sugestions?
thanx scared in illinois
03-16-2005, 04:56 PM
Hi Gary. Welcome to the HCMA. You have a lot on your mind right now. I hope we can help. One of the first things I would suggest is that you call Lisa Salberg at 973-983-7429. I think she'll be in the office tomorrow.
HCM is a genetic condition and one of your parents almost assuredly carries the gene for it. You can suggest they get tested, but it's up to them whether or not they follow through. Do you have any children? Does your brother? They need to be tested too, along with any other siblings you might have.
I'm very glad you've found us and I'm sure you will learn a lot through reading others' experiences. When you are finished with testing, remember to get a copy of all test results. Also, you need to know whether or not you have an obstruction, which is where the blood doesn't flow properly.
I hope to hear more from you soon.
03-16-2005, 04:58 PM
I want to welcome you to our online community. I am sorry you have this disease, but I am so glad you found the HCMA. You will learn so much about how to manage your symptoms, meds, treatment options etc. here.
I was diagnosed way back in 1990 and wish I would have had access to such a community way back then.
Let us know how we can support you as you walk this path. Know that we are pulling for you.
03-16-2005, 05:17 PM
after reviewing this site for the past 2 days it appears to me that since there is no cure... that medication or surgury may help but ultimately they are mostly ineffective as ultimaltly one will die from this diisease is this accurate?
03-16-2005, 06:21 PM
gary welcome ,I wanted to address your comment about medications,surgery etc. being ineffective.I can only speak from my own experience that beta blockers have made a major difference in how I feel I have adjusted to the medications,and can do more now than I was able to do in the last year before being diagnosed.As far as dying Im planning on staying here for quite some time .Unless God has a different plan.either way It wouldnt change the fact that we can only live one day at a time.whether we spend that day uplifted or defeated is completely up to us. keep your chin up and get ready for the ride of your life.take care mike :lol:
03-16-2005, 06:51 PM
Gary, welcome, I'm glad you've found us. Please give Lisa a call in the HCMA office when you are up to it. You will gain so much knowledge from talking to her, and it will be much more specific to you than the info you get here on the message board. Kelly will also mail an info packet to you if you request it. It's all very overwelming in the beginning, and will continue to be so quite often. Just continue to read, ask questions, and learn more. You'll learn that most people live a pretty normal life. Best wishes, Linda
03-16-2005, 07:24 PM
thank you fo all your kind wishes.
As like all of you when you first found out about this disease it is quite overwhelming.
Does it matter the gene mutation that you have how severe pogression will be ? In other words if your parents have it and have a relavtity normal life as well as brother does this increase the odds that I will have less severe or no symptoms?
I will be calling Lisa
03-16-2005, 08:28 PM
after this diagnoses I am self employed will my insurance company drop me? If they do how do I get insurance?
03-16-2005, 09:07 PM
There is so much to wade through after this diagnosis. We are all going to die some day, but it may or may not have anything to do with this disease. HCM is not a death sentence. It does not limit everyone in the same way. You could be relatively asymptomatic.
Lisa will be able to say more regarding health insurance. I have never had difficulty thus far in the places I have worked with health insurance. Life insurance is another matter. I don't know how it works as a self-employed person.
It's tough to take it all in at once. Pace yourself. Arm yourself with knowledge. There are a lot of caring people here who will walk with you at the level with which you are comfortable.
I wish for you peace and many years of happy life.
03-16-2005, 09:14 PM
Leon gave you very good advise please call Lisa she is good at the insurance thing and i would like to welcome you to the HCMA
03-16-2005, 09:18 PM
Lets talk - -give me a call. You are on the right path but please do not panic most people with HCM live long lives.
I look forward to talking with you.
03-17-2005, 11:32 AM
I just spoke with my brother again and think he may have mispoke to me the other day.
he has athletes heart with an elevated bp which he is on meds for.
My mom had an echo and this was fine Her dad had a heart attack at 57 yrs old ( he was a heavy smoker) he survived and lived to 78. Her mom died of cancer
My dad side.... no heart problems mostly strokes
no sudden in my family little her probelms.
Doc said i probbbaly a have hcm but it doesnt match genetically now with my brother have lvh but atletes heart and my parent fine
any help please?
03-17-2005, 11:45 AM
There is a chance that your brother's LVH has been misdiagnosed and he does have HCM. I would suggest he and you both see a specialist to see if you truly have HCM or not. The nearest specialist center to Chicago would be in Rochester, MN but you could call Lisa if you haven't already and she can help you find someone who would be suited to your needs. Please keep us posted.
As far as other family members not being diagnosed, my husband's family is similar. Neither of his parents have shown any symptoms or evidence of HCM, but his mother's family has a lot of "heart problems" that nobody thinks are important. There are no heart attacks or other sudden death worries, though. We're pretty sure it came through his grandmother, as her echo showed some thickening, and she lived to the age of 91.
03-17-2005, 11:53 AM
with hcm you can have higher bp?
I am asking questions they com to mind I hope you all dont mind
03-17-2005, 12:27 PM
By now you’re probably speaking to Lisa, but I will throw my 2 cents in anyway.
1- Because of your diagnosis, your brother should be retested. HCM is an easy thing to miss or mis-diagnose if the technicians aren’t looking for it. It is a rare condition so many echo techs and even many cardiologists are not up to speed on this condition.
2- Your parents should be checked as well.
3- If neither your parents or your brother have it, then you are likely a “sporadic” mutant. That means that you basically got HCM out of nowhere (like me).
4- HCM is a condition in which most people who have it do not even know they have it. That is because they have either no symptoms, or what symptoms they have are not diagnosed as HCM.
5- Of the people who have symptoms, most of them have satisfactory results with medication. However, there are many medications out there that can help and some can be used in combination, so it can take a while to get it right. A full range of drug therapies should be tried before a patient moves on to any procedures.
6- If you have ‘Obstructive’ HCM, then there are two medical procedures that can be done. One is a catheter procedure called an Alcohol Ablation. The other is an Open Heart Procedure called a Myectomy. Both procedures have a very high rate of success. However, the Ablation has only been around for 10 years and has only been done in significant numbers for the last 3-4 years. Therefore there is NO long term data on its results. Also 15% of patients will need a permanent pace maker.
The Myectomy has been around 40 years. All doctors who are considered experts on HCM agree that this is the best procedure to stop or limit the symptoms from Obstruction. I had a Myectomy a year ago, and I’m doing very well.
7- Non-Obstructive HCM can be a little tricky. You may need various drugs, you may need devices implanted, you may need some procedures performed, and (worse case scenario) you may need a transplant.
8- With HCM, it’s all about your symptoms (there is no cure). You don’t move forward in treatment unless the symptoms are unacceptable.
9- Sudden Death is part of the HCM tapestry, but it is a very small part, especially after you are diagnosed. Once you begin treatment and are aware of some limitations in physical activity, the chances of sudden death drop tremendously. (Sudden death percentages also drop post-myectomy, so I’m feeling good about living a normal life).
10- Lastly, HCM is a wild card condition. It affects everyone differently. A Non-Obstructed father can pass HCM to his daughter who can have obstructive HCM. A mother can first be diagnosed with HCM in her forties, but her son first finds out at age 11.
The empathy that you will find on these boards is fantastic, because we are all stuck with a very strange condition. We run the gamut from long distance runners to people who are home bound. I recommend reading back through these boards at least 18 months. Then you will have a better handle of the scope of HCM.
If your symptoms begin to really bother you, get an appointment with one of the 3 HCM clinics so you can get an expert opinion. Your cardiologist may be great (he may also be unaware of many nuances of the condition) but the people at the Mayo, Cleveland Clinic and New England Medical are the ones who really know HCM.
You can also come to our Annual Meeting in New Jersey in June.
03-17-2005, 03:08 PM
what is the difernce between obstructive and non obstuctive?
as i said before.
my septum is 1.3 cm. and the rest of the echo was normal. BP was 108-64 I read that 1/3 may be a tad enlarged but borderline is that right?
Thank you so much for that expantion it was wonderful
03-17-2005, 03:36 PM
Obstructed means that the thickening of the septum is in a place that hinders the flow of blood as it tries to exit the heart through the mitral valve. It's like a roadblock. It doesn't completely stop the flow, of course, but gets in the way.
Non-obstructed means that there isn't a roadblock at the the area of the entrance to the mitral valve. The flow of blood through there isn't held up. The percentage of those with obstructive HCM is about 25%.
What do you mean when you say that you read that 1/3 may be a tad enlarged but borderline? 1/3 of what might be enlarged? And you have good blood pressure. That's good.
I hope this helps.
03-17-2005, 04:06 PM
sorry a typo I meant 1.3 cm in thickness the septum i understand normal is .6 to 1.2. so borderline I would think.
It is "moderate concertered lvh" on the echo
why would BP be normal if the ventricle has a hard time pumping blood
so hcm is not obstructing anything why is this a problem with blood flow? I would think this would be preferable.
thank u trying to understand
03-17-2005, 05:10 PM
Call me and we can go over HCM basics...
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