Does anyone else have this? I want to know if I have to stay on meds for the rest of my life with this condition. I am only 29.

what kind of cardiomyopathy do you have? There is hypertrophic, dilated, etc. I have hypertrophic . I've know since I was in my late 20's. I am 49. I have taken beta blockers (atenolol) since I was in my early 30's...they eliminate the palpitations, extra beats. What they basically do (and by the way, 99% of HCMers do take these on a regular basis), slow down the heart contractions ...you want to keep the heart rate low as in this condition, the heart is plump ). People with high blood pressure take beta blockers. I have never had any side effects other than tired. There is a wonderful website: 4HCM.org...please go there. They are professionals and consult with doctors who are specialists in cardiomyopathy...

Hi ParkerMom...
How do you know what kind of cariomyopathy you have? Did you get a biopsy done? My doctors don't know which kind I have or how I got it. They say it is either idiopathic or nonishemic whatever that means. They would like me to stay on meds pretty much for the rest of my life. I was very lucky the medication brought my ejection fraction from 45% to 63% in only 4 months. I thank God for that. The only thing is I am young and someday soon I would like to have a baby. I just wanna live a normal life if that is possible.
The doctors put me on coreg and altace by the way. I am also very tried like you plus I am having a very hard time losing weight.
Thank you so much for replying to my post http://www.healthboards.com/ubb/smile.gif I hope to hear from you again.

hi, sorry not to reply to you sooner...

They should be able to tell which cardiomyopathy you have by an Echocardiogram. An MRI will give them a very clear picture of the heart and its physical state. Do you know your family history? This is genetic (a defective gene in the heart muscle). My father had hypertrophic cardiomyopathy and so do I. I think my grandfather had it also. It is important to get as much family history as possible. If your doctor cannot determine which one you have, go see another cardiologist! keep in touch...I'll check in from time to time to answer any questions you might have. take care

P.S. I noticed that you live in N.Y. There are excellent specialists located in Boston at Tufts New England Medical Center

Hi again pm
I already had 2 echocardiograms done. I also had a Muga scan too. They still don't know which kind it is. I really try to live a normal life but it is hard. I hate to get to personal but do you mind if I ask if you have children? I am sorry I just would like to know if there is hope for me to go though a healthy pregnancy with this condition. The doctors don't tell me much so I just want to hear from others who have this and what they can and cannot do.
Thanks for taking the time out to talk to me. I really appreciate it. Take care. http://www.healthboards.com/ubb/smile.gif
Christina
ps
Thanks for telling me about the MRI. I never thought of it. I go back to the cardioligist next month. I will ask to have one done.
Bye bye

Hi Christina,
Not, I don't mind at all. The vast majority of cardiomyopathy patients do just fine with pregnancy. I had my son at age 40 ! I had a vaginal birth with an epidural and did fine. Usually, they will keep you for a few days longer after delivery with any heart condition so they can monitor you closely to be on the safe side. I was referred to a few doctors in Boston when I was in my 7th month so they could confer and give my gynecologist the best decision as to what I should have (either vaginal birth or c-section). A c-section in a "normal" person is risky and they said the vaginal is fine with an epidural. Again, it would be a good idea to get an MRI. I've had echocardiograms for several years , that's how they keep tabs on my HCM. However, I was referred to specialists at Tufts in Boston and had this high tech echo done there at the hospital which gave them an extremely clear picture and the MRI which I think is like a 3-D picture with all kinds of info they can receive....please have it done and let me know..do NOT worry....they can do so much nowadays with cardiomyopathy....hugs

I am so glad to hear there is some hope that someday I may be able to have a baby. I can't believe the doctors said a vaginal delivery is safer then a c-section. I always thought that if I were to get to that point they would tell me c-section only. Just thought vaginal would be to strenous on the heart.
Did you have to stay on any medications while you were pregnant?
These doctors really sould great in Boston. They sound like they know alot about this condition. I feel like my doctors are new to this. I don't know. It's just very scary. I wish I could get there. Do you have an address or number I could call? I have an appointment again on 11/13 with my doctor. Do I ask them to do the MRI or should I ask my primary to have it done? Are there any other special tests I can ask to have done? Like that 3D one you were taking about, do you know the name of it? I can't go back to your post right now to read it I am in a different screen. I am sorry to be chewing off your ear everyday. I just have so many questions, I could write a book.
Thanks again so much for keeping in touch with me...........hugs back http://www.healthboards.com/ubb/smile.gifTalk to ya soon

bump

Hi,
First off, I am surprised the cardiologist doesn't know what type of myopathy you have, my doctor could tell from the echo, I think you need to know that first, before anything else.
Now onto your question.........
I have Hypertrophic Cardiomyopathy and have two healthy children. I delivered both vaginal. I didn't know I had this condition when I had my first son but I did when I got pregnant with my second. I was also told vaginal was safer.
With son #2 I had a partial epidural which unfortunately wore off before delivery so I was drug free for the whole delivery. I was worried my heart would explode from the strain and the incredible pain I was in but it held strong.
I was on Atenolol for the entire pregnancy and there were no complications with baby or me. That was three years ago. The only real difference between the two pregnancies was the many appointments with my cardiologist and high risk pregnancy gyn. I felt fine and had no heart disturbances/problems the entire time.

One word of caution which is something I deal with on a daily basis is knowing that this condition is hereditary and there is the possibility of passing it onto your children. I am still dealing with the guilt-and I don't even know if my kids will ever get it. They are ages 11 and 3.

I hope this helps some. Good luck.

Hi,
First off, I am surprised the cardiologist doesn't know what type of myopathy you have, my doctor could tell from the echo, I think you need to know that first, before anything else.
Now onto your question.........
I have Hypertrophic Cardiomyopathy and have two healthy children. I delivered both vaginal. I didn't know I had this condition when I had my first son but I did when I got pregnant with my second. I was also told vaginal was safer.
With son #2 I had a partial epidural which unfortunately wore off before delivery so I was drug free for the whole delivery. I was worried my heart would explode from the strain and the incredible pain I was in but it held strong.
I was on Atenolol for the entire pregnancy and there were no complications with baby or me. That was three years ago. The only real difference between the two pregnancies was the many appointments with my cardiologist and high risk pregnancy gyn. I felt fine and had no heart disturbances/problems the entire time.

One word of caution which is something I deal with on a daily basis is knowing that this condition is hereditary and there is the possibility of passing it onto your children. I am still dealing with the guilt-and I don't even know if my kids will ever get it. They are ages 11 and 3.

I hope this helps some. Good luck.
Hi abbygirl2,
I just have so many questions but I don't wanna scare you away. You have no idea how much you have helped me. You are the first person on here that also has cardiomyopathy that acually went though a pregnancy. I don't understand why my doctors cannot tell me which kind I have. They tell me they don't know which kind it is or how I got it. It is very frustating for me to accept this when they can't give me any anwsers. I have had 2 echos and 2 mugas and the only thing they really tell me is my heart is not enlarged and my ejection fraction which is now 59%. I was told they would have to biopsy my heart to find the true cause and type.That is just a little to drastic for me. How did you find out you had this? Did you have any symptoms?
You said you delivered natrually. The doctors didn't think a c-section would be safer? less work on the heart?
Thank you so much for responding to my post. You have given me so much hope. It really wasn't just about taking the beta blockers during pregnancy that was my only worry but,surviving a pregnancy with cardiomyopathy. That's another subject my doctors have no anwsers for me. I guess they don't have much experience with this condition.
Maybe those questions would be for ob/gyn.
Thanks again :wave:

Hi there, just my 2-cents on why the docs wouldn't prefer c-section. Maybe it has to deal with complications from it like bleeding(could be fatal if not able to stop the bleeding), anesthesia?, scar tissues...etc. From another heart condition in another support group, they also advise natural birth then to go for c-section. all the best to you!!! :)

Hi there, just my 2-cents on why the docs wouldn't prefer c-section. Maybe it has to deal with complications from it like bleeding(could be fatal if not able to stop the bleeding), anesthesia?, scar tissues...etc. From another heart condition in another support group, they also advise natural birth then to go for c-section. all the best to you!!! :)
Hi CheerAngel,
Yes your right it does make sense when you think about those things.
It's just that I can't get the idea out of my head of how much strain that would be on the heart.
Thank you for your reply. :)

Hi again, Don't worry about scaring me away. I have been totally alone with this disease as I am the only one in my family that has this. It is usually genetic but we haven't found a link to anyone so far. As for which type you have, it may be that you have something different than what I have, as hypertrophic cardiomyopathy(HCM) can be diagnosed through an echo.
I had a fast heart rate but that never caused suspicion for my Dr. I was going through a stressful time in my life and went to the ER with a panic attack which was when they heard a murmur. From there they sent me for an echo. And voila!!
For a long time I didn't feel well, but the Dr's said I had anxiety. I have had symptoms for several years, they are alot worse now, some days I can hardly move around. I have seen many doctors and none really knew anything about HCM, it is frustrating.
As for my pregnancy, the reason they prefer a vaginal delivery is because they DO NOT want to have to use anethstesia(sp??) if they don't have to, nor do they want to cut you open. I was so worried my heart was gonna explode from the strain of delivery, but I guess they knew what they were doing, they didn't look to worried about me at the time. :)
My cardiologist said that most women with HCM do fine through a pregnancy. Your heart generally enlarges during pregnancy which makes the enlarged muscle...well...not so enlarged..Does that make any sense??? :)

Hopefully you'll soon be able to find out which kind you have, and go from there. Is what you have hereditery? That is the only thing that prevents me from having more children, I am so afraid of passing it on.
Good luck to you, and if you have any more questions, ask away. I was filled with questions 5 yrs ago when I was diagnosed, and had nobody to ask, so I don't mind at all.

Hi again, Don't worry about scaring me away. I have been totally alone with this disease as I am the only one in my family that has this. It is usually genetic but we haven't found a link to anyone so far. As for which type you have, it may be that you have something different than what I have, as hypertrophic cardiomyopathy(HCM) can be diagnosed through an echo.
I had a fast heart rate but that never caused suspicion for my Dr. I was going through a stressful time in my life and went to the ER with a panic attack which was when they heard a murmur. From there they sent me for an echo. And voila!!
For a long time I didn't feel well, but the Dr's said I had anxiety. I have had symptoms for several years, they are alot worse now, some days I can hardly move around. I have seen many doctors and none really knew anything about HCM, it is frustrating.
As for my pregnancy, the reason they prefer a vaginal delivery is because they DO NOT want to have to use Hi abby,
I am sorry you had to go though this alone. I pretty much have it the same. No one in my family has this either (thank God). (sp??) if they don't have to, nor do they want to cut you open. I was so worried my heart was gonna explode from the strain of delivery, but I guess they knew what they were doing, they didn't look to worried about me at the time. :)

My cardiologist said that most women with HCM do fine through a pregnancy. Your heart generally enlarges during pregnancy which makes the enlarged muscle...well...not so enlarged..Does that make any sense??? :)

Hopefully you'll soon be able to find out which kind you have, and go from there. Is what you have hereditery? That is the only thing that prevents me from having more children, I am so afraid of passing it on.
Good luck to you, and if you have any more questions, ask away. I was filled with questions 5 yrs ago when I was diagnosed, and had nobody to ask, so I don't mind at all.
Hi abby,
I am sorry you had to go though this alone. I pretty much have it the same. No one in my family has this either (thank God). They think I got it from a virus,but who knows.
You never said what your ejection fraction was/is now. Is it OK to ask?
I also was wondering about the doctors telling you that they didn't want to use anesthesia. Why would that be a problem? I am just a little concerned because I am thinking about having my tonsils removed in the very near future. But as it is I am scared to death of going under ansethesia. I feel like if I go though with this I won't wake up. This is just a part of living with panic disorder.
Well I want to thank you again for being so kind and anwsering my questions. I hope to hear from you soon. :)

Hi there, another of my 2-cents. Complications could arise with anesthesia like allergic reaction to the medicine given and the allergic reaction might develop into anaphylaxis(a more severe life-threatening allergic reaction), and side-effects like nausea. However, not everyone who goes under anesthesia will experience these problems, some have no problems at all. When it's time for your tonsils surgery, your anesthesialogist will talk with you and understand more about your past medical history and plan the anesthesia med he would use. Sometimes a little test is done to see if you are allergic to the medication. All the best! :)

Ladybug
I have seen other people mention what their ejection was, truthfuly I have no idea, my Dr maybe mention it at first but I don't remember.
It must be good as it has never been an issue.
I am greatful nobody else in my family has this as well, it just makes me wonder how I came about having this. Nobody ever mentioned the possibility of getting it from a virus, I'll have to ask my card. next visit.
It is really hard being alone with this, especially when you have so many questions that nobody can answer. About the anesth. I am not positive why they prefer not to use it unless absolutely neccessary, could be incase of a reaction or simply the fact that anesth. is not good for healthy people let alone people with illness. I don't think it is a huge concern, because I someday may have to have my gallbladder removed, and my Dr. told me that it wouldn't be a problem, basically it was no big deal. Don't worry about having your tonsils out, leave the worrying to your Dr, they will do whatever is best for you. :)
Anxiety and stress have been a big part of my life throughout this illness, although I was doing pretty good for a year or so. Every now and then the stress takes over though and I have to readjust my life. Hope all is good with you, let me know how your making out.

Ladybug
I have seen other people mention what their ejection was, truthfuly I have no idea, my Dr maybe mention it at first but I don't remember.
It must be good as it has never been an issue.
I am greatful nobody else in my family has this as well, it just makes me wonder how I came about having this. Nobody ever mentioned the possibility of getting it from a virus, I'll have to ask my card. next visit.
It is really hard being alone with this, especially when you have so many questions that nobody can answer. About the anesth. I am not positive why they prefer not to use it unless absolutely neccessary, could be incase of a reaction or simply the fact that anesth. is not good for healthy people let alone people with illness. I don't think it is a huge concern, because I someday may have to have my gallbladder removed, and my Dr. told me that it wouldn't be a problem, basically it was no big deal. Don't worry about having your tonsils out, leave the worrying to your Dr, they will do whatever is best for you. :)
Anxiety and stress have been a big part of my life throughout this illness, although I was doing pretty good for a year or so. Every now and then the stress takes over though and I have to readjust my life. Hope all is good with you, let me know how your making out.
Hi Abby,
Did your doctors go over any other ways you could have gotten this besides being hereditary? I see you never heard about viral cardiomyopathy. It could have been something like strep throat. I keep doing alot of research all over since the doctors don't say to much. It could also be thyroid. There are so many ways. I have an appointment this Wednesday with the endo so hopefully I can get some anwsers from them. I have many symptoms of hypothyroidism but my tests keep coming back "normal". Atleast the TSH and T4 do. My thyroid is also enlarged. I am just trying to find anwsers. Well thanks again. Talk to you soon. :)

Ladybug, my card. never once mentioned anything about getting it from a viral infection, or any other way. Until speaking with you I thought this was just something that you were born with. I either inherited it, or I was just simply born with it. I'll have to do some research to find out more. Has everyone in your family been checked and ruled out? Do you have any idea how you might have gotten it? I have had my thyroid checked several times, its fine. I can't remember if I've ever had strep throat so I probably haven't had it in the past 15 yrs or so.

What do they rank your condition as, I know all heart conditions are serious, but they say that mine is slight and that I am not considered high risk.(Which only makes me feel a little bit better).
What does an endo. have to do with this condition? I have never seen one, perhaps I should.
Another quick thing about the anesthtesia(I spell this word differently everytime I spell it:) )....I have had 5 surgeries, 4 minor, 1 major, all within 4 yrs before being diagnosed and never had any problems.

Talk to you soon.

Ladybug, my card. never once mentioned anything about getting it from a viral infection, or any other way. Until speaking with you I thought this was just something that you were born with. I either inherited it, or I was just simply born with it. I'll have to do some research to find out more. Has everyone in your family been checked and ruled out? Do you have any idea how you might have gotten it? I have had my thyroid checked several times, its fine. I can't remember if I've ever had strep throat so I probably haven't had it in the past 15 yrs or so.

What do they rank your condition as, I know all heart conditions are serious, but they say that mine is slight and that I am not considered high risk.(Which only makes me feel a little bit better).
What does an endo. have to do with this condition? I have never seen one, perhaps I should.
Another quick thing about the anesthtesia(I spell this word differently everytime I spell it:) )....I have had 5 surgeries, 4 minor, 1 major, all within 4 yrs before being diagnosed and never had any problems.

Talk to you soon.
Hi abby,
Just wanted to make a correction to this previous post. I don't want to give out any wrong information. I went to my ENT and she told me I could not have gotten this from strep throat. She said that kind of infection would have attacked the valves not the muscle itself. I am sorry for given out in correct information. I really thought that was a cause for cardiomyopathy.
I am going to a different cardio the end of this month to see if I can get some anwsers that I am looking for. Hopefully I can find out which type I have. How have you been? I hope all is well :)

Hi, I am doing pretty good, as far as my heart goes, I have been under a lot of stress lately so have been suffering from anxiety.

It is quite confusing to sort out all the info, certain types of cardiomyopathy can be caused from such things as long term high blood pressure, or long term strenuous excercise(as in professional athletes), however the type I have(hypertrophic) is generally hereditary, so who knows where I really got it from. Ask your Dr's as many questions as you have to in order to make sure you understand everything. I see my card. once a year and he is pretty good(sometimes a little too blunt-especially about being overweight) :)
Anyway, I want to hear all about your appointment, so I'll be waiting to hear from you.
Good Luck and hope your feeling well!! :)