am a 14 year old girl and was diagnosed yesterday with left ventricular hypertrophy caused by my hypertension. The cause for my hypertension is unknown. I don't exercise but Im fit and normal weight. I keep a low-slt diet. I am not being treated with atenolol 25 mg twice a day. So my question is that how quickly does the ventricualr hypertrophy usually progress? When I saw my cardiologist iN january i did not have it and in a 6-month period it developed.
I also have mitral valve regurgitation and diagnosed with arrhythmias.
A lot depends on what type of hypertrophy you have; are the walls too thin or are they too thick? I'm guessing they are too thick. The progession of this disease depends on a lot of factors. One being age. It is not good that you have been diagnosed with this problem while you are still growing as growth can make it worse. What type of arrhythmias are you having? The regurg isn't really too big of a problem if it is in the trivial or mild form. You don't say the degree. What does your cardiologist tell you and are you seeing a pediatric cardiologist or an adult cardiologist?
Yes, the walls are too thick. I think that last time he said the walls were somewhere around .84 and now its 1.1. My arrhythmias are mainly PAC's.I usually feel them as skipped or extra beat and osmetimes in my neck(ehich is reallly painful) I sometimes get them in pairs, if u understand what i mean. I've already done two holter monitor tests and and a stress tests. I am seeing a pediatric cardiologist. Ive been told hes the best in Puerto Rico.(that's where I live) umm so we cmae in and I gave him the chart I made on my BP readings. He said that we had to repeat the echo to seeif the Blood pressure affected the heart or not. So he did the echo and found that the regurg. did not worsen but he did find the hypertrophy. Because of that he decided to put me on meds. So Im gonna come back in 2 months to see how Ive responded to the drugs. My Dr. also said that he doesn't want a pacemaker fitted because the actual thing may cause harm to me. So hes not sure. So right now, my next appt. will be by the end of September. Thank us o much for replying.
You asked how long does it take for this disease to progress? You more than likely have this faster progession because you are going through a growth spurt. This disease is chronic for the most part; some people live years with this disease with not much symptoms, others get so bad they need to be transplanted. I'm not sure why you are talking about a pacemaker? Or are you talking about an ICD? A pacemaker shouldn't cause you any harm. My daughter was diagnosed with a severe concentric form of this disease when she was 6. Her walls were 1.+ at that time and she received a pacemaker due to having Sick Sinus Syndrome; her awaking heart rate was in the 30s. have you had an EP Study done to check the electrical tract of your heart to make sure you are not prone to bad arrhythmia problems? If not, you should definitely have that done. About 2% of young people die from a sudden cardiac death who have HCM (Hypertrophic Cardiomyopathy). That 2% is small, unless it happens to you! If you need more help, just let me know. Take care!
Oh, I didn;t know that the pacemaker couldn't cause you harm. Thank you for telling me that. Oh yes Ive heard about the EP test through someone but my cardiologist hasn't even said anything about it. Someone told me about it because they fainted and had the EP test. In January, I did have a syncope for no apperant reason but he did not order the EP test. So I'll mention it to my mom so she can mention it to him. I have another question. In November, we have this race in my school called the Turkey race. It gonna be running a mile to compete for the turker price. Should I participate? Last year I did do it, but It was soo hard. It was so hard to breathe and my chest and ribs just HURT. That I know of, I did not have this hypertrophy last year November. But now that I do have it, is it wise to join? Someone told me not to. Why? Thank you so much for help!! :-) I really do hope your daughter is fine now.
OMG!!! DO NOT enter that race!!! Especially if you have had a syncopal episode!! You may be having a life threatening arrhythmia in the ventricles. DO NOT get yourself involved with any sports until you have been REALLY EVALUATED by a competant doctor. You need to get into a good facility who deals with HCM!! Can you go to the Cleveland Clinic in Ohio or to the Mayo Clinic in Minnisota? Both of those places specialize in HCM. You need to find a doctor who knows what he is doing! The fact that you have already passed out, is not good. You should have an EP Study done, the sooner, the better! Usually any University Hospital that does heart transplants, have doctors who understand this disease and that's where you need to be seen and treated from. The fact that you were having chest pains and it was hard for you to breathe, chances are good that you had HCM last year; those are classic signs of HCM in a heart patient. My daughter goes to The University of Michigan; they are a top notch facility treating HCM patients as well. You need to also have a Tilit Test done to see if you are having blood pressure problems as well; when the heart muscle is thick, it becomes stiff and cannot relax well enough to let the chamber fill up with blood, not enough blood can be pumped out to the rest of the body, including the brain which is why you may have passe d out. You may be the only person on the island with this disease so your doctor has probably never treated or seen anyone else with HCM. You mentioned that you are on a low salt diet; that is a treatment for DCM where the walls atoo thin. DCM is a form of systolic heart failure; HCM is a form of diastolic heart failure. HCM patients NEED salt in their diet to help retain fluid so that it is easiier for the blood to flow through the heart. You must stay very well hydrated especially where you live. Also eat protein as protein helps your body to hold onto fluid; dehydration can be a real problem for HCM patients and where you live, isn't going to help you as far as hydration. People think that if they drink a lot of fluids, they won't become dehydrated; not true. That's why you need to eat protein, it will help your body to stay hydrated. You mentioned my daughter; she did have a heart transplant at the age of 22 and she is now married and other than 3 bout of Congestive Heart failure with the transplanted.heart, she is actually doing quite well; she just celebrated her 10th anniversity fo the transplant. Take care!
Ok, I will NOT join that race. Thank you for telling me, really. And no, I cannot go to the US for other doctors because my mother feels confident with this doctor. But atleast everyone says he's the best in the island. On the next appt. in September or October I will mention the EP test. Thank you so much! Oh yes, I have heard of the tilt test and even seen videos of it being preformed. I will talk about with my mother. Thank you once again for telling me that. About what you said about the reason for me passing out, it actually makes sense to me! :-) When I went to the ER that day, they did do an EKG, and the EKG said "Abnormal" and said left ventricle enlargement. But the dr. there did not believe the EKG and said it was an error.
Im on a low-salt diet because of my hypertension so I can't really eat that much salt, so what should I do? Cause I need it like you said but I also need to avoid because of the BP. I will add more protein to my diet and water.
I am so gald your daughter is great now! Congratulations on the 10th anniversary! She must be lovely. Take care too! You've been such a help. You really are a nice person.
Oh, and lately I've been feeling out of breath when Im completely flat. Like f there was a slight pressure on my chest. Should I tell someone? And why is it that everytime I talk alot, my heart just pounds and punds and it "hurts" in a way, if you know what I mean. Thank you so much for your answers.!!!!!!!
Okay, if you have hypertention, you must keep to the low salt. Eat protein, that will help you to keep from getting dehydrated. I would like you to do me a favor if you have not already done this: I would like it if your mother was reading these posts as well. I would like her to see what I have been writing to you. The reason that the doctor did not believe your EKG is because this is a very rare form of heart disease in young people. No doctor likes to see this on an EKG, believe me. When they ran my daughter's first EKG when she was 6, they thought the machine was broken and they went and got a second machine. When all of the pediatricians in our clinic were shown the EKG, none of them had ever seen an EKG like it before (They probably have never seen another one like it since either). I don't know why your heart 'hurts' if you are talking a lot unless it has something to do with the amount of oxygen you are taking in and breathing out. HCM is one of the rare problems that can cause TRUE, heart related chest pain in young people. The reason for that is because the muscle of the walls grow to a point where the blood supply to the muscle is no longer there. Usually people who feel out of breath while they are laying flat have systolic heart failure which is the opposite of HCM's diastolic heart failure. In systolic heart failure the heart walls are so thin they do not have the ability to pump blood out to the body and they tend to have fluid buildup in the lungs; that is what is called Congestive Heart Failure (CHF). When those patients lay down, there lungs fill with fluid and that, in turn, makes it hard to breathe. That's not usually a problem with HCM patients, however, mention this to your mother so she can tell your doctor about it. You should probably see him again. This is not an easy path you are walking down, you need to trake care of yourself and your mother must be a strong advocate for you. She REALLY NEEDS to uinderstand what she and you are both up against. I wish you well....you seem like a smart, wonderful young lady!
I did tell my mom about what you've said and Ive pointed out what you've written and she said that she really appreciates your advice about going out to clinics where Dr.'s specialize for this but she does not have the money for it and no time becaause of my school etc. Thank you for clearing up about the EKG in the ER. I thought it kind of strange for the EKG to cause an "error". I will mention it my Dr. about this new symptom. Thank you so much! Without you, I would have never know this and probably wouldn;t have know or remembered about the EP test and tilt test. And I would be really shy to talk to my Dr. But you've given me confidence. Y oua re a wonderful, extraordinary person and I am so gald I met you! May God bless you and your daughter!
And I have I think one last question. So you already know that im being treated for high BP so left ventricle won't get bigger. But if it does, what treatemnet options come after that? I mean like after medication or when medication isn't enough.? And if you do know the answer to this, it's ok if you don't but, how large is considered "large"? Like the points. For example, mine's at 1.1 (in january it was .84) but how larger can it get? At what point is surgery reccomended? My mom and I are asking this.
Hello again, to you and your mother. Honey, you need to understand that this is a serious form of heart disease. If it has been caused by high blood pressure, I can't answer that question, because I don't know. If the hypertrophy is caused by the genetic or sporadic form of the disease, then the treatments would include Calcium Channel Blockers (they seem to help more than the Beta Blockers), sometimes oxygen helps some patients and can be worth a try if you have chest pain. From there, sometimes surgery is indicated if the wall grows and blocks one of the valves; that's known as HOCM, or: Hypertrophic Obstructive Cardiomyopathy. If the disease progresses to very severe case than the only treatment left would be a transplant. When my daughter was transplanted all of her ventricular walls were about 4 cm thick and there was bridges of muscles growing through the chambers connecting the walls. If arrhythmias are a problem and they are the life threatening forms of arrhythmias that are in the ventricles, then an ICD would be placed to stop any arrhythmias. You can develop atrial arrhythmias which can cause problems with a hypertrophied heart so you woulds need to be placed on meds for that. If you have a bradycardia problem (rates less than 40 beats per minute, they would place a pacemaker and you would feel a lot better! My daughter's heart walls were 1.1 when she was 6 years old and she was in diastolic heart failure at 13 and things got really bad for her from 16 on; she was 22 at the time of her transplant. Understand that transplants are not cures for heart disease; they are only a band-aid and you are only exchanging one major problem for another. Transplants extend life. Now having said that, my daughter is 10 years out, we know of another patient who is 20 years out. Medicine has come a long way over the years; origionally, when they first did transplants, a life span was about 5 years! They usually don't do surgery for HCM unless there is a blockage of bloodflow. It was upsetting to hear that you could not come to the mainland for care, you really need to see someone who deals a lot with this disease. Take care, kiddo!
THANK YOU! What do you mean atrial arrhythimas? When I did the holter monitoring, the Dr. said the my arrhythmias came from my atria. I never did quite understand that. Everyone says the arrhythmias are serious if they come from the ventricle. Is that true? You really are a wise, smart woman!! I am so happy for your daughter! My mom and I thank you and give you and your daughter a big cyber hug! :-)
Atrial arrhythmias origionate in the upper chamber of the heart called the atrium. There is the S.A. Node in the atrium which is known as the 'pacemaker' of the heart. There is the S.A Node in the atrium and the A.V Node which is near the ventricles which are the lower chambers of the heart. (That's where you have your hypertrophy) The S.A Node fires off the electrical impulse which shoots down to the A.V Node near the Bundle Of His which then breaks off into the Left Bundle Branch and the Right Bundle Branch; those Branches turn off to the left and right side of the heart at the bottom of each ventricle. By doing that, the electrical impulse allows the ventricles to beat. I hope that makes sense. Have your pediatric cardiologist draw you a picture the next time you see him. The more you and your mother understand HCM, the better off both of you will be to fight this disease process. You asked about venticular arrhythmias being more dangerous. They most certainly are! They can cause sudden death. Everyone on the planet has premature ventricular beats (PVCs) as well as premature atrial beats (PACs). In a person who has no heart disease, both are perfectly fine to have, however in someone with HCM (and others with underlying heart disease) you really don't want to be having arrhythmias in the ventricles. If the atrium starts beating too fast as in Atrial Flutter or Fibrillation where the heart rates are 250+ per minute, someone like you with HCM would not be able to handle that very well because of the problems with the ventricles being to thick, they can't beat that well. They will have a hard time keeping pace with those high heart rates. That's one reason you want to be having 72 hour Holters. (24 hours rarely show anything!! :( ). I wish you and your mother well!!! And lot's of big hugs to you too, kiddo! Be good! ( I don't know if you are aware of this or not, but you can also privately e-mail someone on these forums as well, just click on the person's name and it will take you to their personal page. That person will be notified through their own e-mail address.)
Thank you clearing that up for me! :-) You are so right about the 24-hour holter montiors showing very litte. When I had the holter monitor on, I got only a couple of arrhythmias. Then I went to the Dr. and they took it off, then that same night, my heart was going crazy. It was like at least 5 arrhythmias each hour, most of them coming in couples. And then sometimes it was faster and bla bla. And then I thought, "If only I had the monitor on." And how come some arrhythmias are felt in the neck? I've had 5 arrhythmias today and two of them were felt in the neck. Does it come from another place in the heart?
grendslori, the words thank you are certainly not enough. But still, thank you.
Oh, this just started a few days ago: Ive already told you that Ive been feeling out of breath if Im completely flat..when now everytime i get into that position, i get lots and arrhythmias in a row and some stong ones and then comes the slight pressure and the feeling of not being a able to take in a deep breath. Is this somehow related?
Sorry if i didnt make the last post clear. I mean to say: That when i lay completely flat, I get lots of arrhythmias and most of them are ina row. After that , there is a lsight pressure on my chest adding to thee feeling of not being a ble to take a deep breath.
Hello again. I haven't been on the site in a couple of days and have just seen these notes. It is possible for you to be laying flat and have more arrhythmias. If the heart is enlarged, it will hit up against the sternum and you will feel it more. Try laying on your side where your body weight isn't causing you to have this kind of pressure on your chest. Try that and see if that helps. Sometimes you will feel your heart beat in your neck due to higher pressures in the heart. You have HBP. Take care, my regards to your mother.
Oh ok, now it all makes sense. Yeah like when Im in class and I just turn around and have my body twisted, I feel it pounding and getting irregular. Okay, I'll try different positions. You take care too!
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