thanks for all your support, not one of you helped

[kenneltech]

Better get on another forum where people are a little more attentive, as some of us are in desperate need of help, thanks, but no thanks.

[grendslori]

I get so fed up with doctors like this!! But the truth is twoflod: they don't like discussing this diagnoses because they don't like giving a person bad news and because it is rare and most doxctors go through their whole career and never see a case of it. Calcium Channel Blockers are the best drugs in treating HCM because they have the ability to relax the muscle walls. They work better than Beta Blockers. This disease is a disease that causes Diastolic Heart failure which is NOT the same as Congestive Heart Failure (CHF) which is a form of Systolic Heart Failure (that is common). It is very rare, but for some patients in the terminal state of this disease will develop thinned out walls and will eventually go into CHF, but as I said, that is VERY RARE. Diuretics can help, but there is a real downside to them as well when you are in Diastolic Heart failure. In order for the heart to beat more efficiently you need to have a good amount of fluid in the bloodstream. This is kind of a double edged sword. You need to stay well hydrated and that doesn't mean you need to drink a lot of fluid, you need to drink and eat protien as it is the protien that helps the body to retain fluid in the bloodstream. Your doctor may not know what the underlying cause is. That doesn't surprise me at all. Generally it is genetic, but sometimes it can just be sporadic. Sometimes this disease is referred to as IHSS which stands for Idiopathic (don't know what caused it) Hypertrophic (Thickened) Subaortic (Below the Aorta, or Atrium) Stenosis (Narrowing).In Europe they still tend to call this disease IHSS. If you have not had a test done to your heart's electrical system, called an EP Study, you NEED to have this done. Patients with HCM generally have arrhythmia problems and for a few, the arrhythmias can be life threatening. You may need to have a pacemaker or ICD implanted to keep you safe. This is a serious muscle disease of the heart, you need to understand that. The good news is that they have found this in you during your adult years; when it is diagnosed in childhood, the prognosis is far worse because those children are still growing, so are the heart walls. If you have an obstruction (HOCM) then you may have to have a myoectomy where they take out some of the thickened wall. For some this disease will progress to where transplantation is the only option. There is a website you can go on as well: Hypertrophic Cardiomyopathy Association, do a search for that name on your computer. We have been through this disease with our daughter so we know what you are going through. take care  

[kenneltech]

You know, I asked the cardiologist about this disease, and asked him what caused it, and he said, "oh, I don't know, sometimes diabetes, but your just borderline, sometimes weight gain, sometimes this or that," and I asked if I was going to have a heart attack, and he said, no, it just causes water retention, and acted like it was no big deal.

Then, when I went to my family doctor and discussed this with her, she said that if I was on a diuretic, and was retaining water, I was in diastolic heart failure! I asked about any medications for this (I asked the cardiologist also), and she said, "you know, they actually make more medications for systolic syndrome, not diastolic," and that was that.  Then I asked if this was serious, and the cardiologist said, "no, you don't have to worry about it right now!"

This is why I am so desperate, these are the only answers I've gotten beside you guys, which I really, truly appreciate.  I'm going to another doctor!  This is ridiculous.  And he never said there was any underlying cause.

Thanks, guys.

[erijon]

Yea, thickened ventricle walls make sense. What you need to push your cardiologist for is the underlying cause. Once that is determined and resolved, there can be some reversal. Left ventricular hypertrophy occurs as a result of one or more things making your heart work harder than normal to pump blood to your body. For example, if you have high blood pressure, the muscles of the left ventricle must contract more forcefully than normal in order to counter the effect of the elevated blood pressure.

The effect of the stronger contraction on your heart is similar to the response of other muscles to an increased workload. If you add weight to a dumbbell for arm curls, your biceps become larger. Similarly, the work of adapting to high blood pressure may result in larger muscle tissue in the walls of the left ventricle. Unlike weight training, however, the increased workload on the heart is constant with each heartbeat and with little time for the heart muscles to relax. The increase in muscle mass causes the heart to function poorly.

Treatment for left ventricular hypertrophy focuses on the underlying cause of the condition. Depending on the cause, treatment may involve medication or surgery.

If left ventricular hypertrophy is caused by aortic valve stenosis, you may have surgery to remove the narrow valve and replace it with either an artificial valve or a tissue valve from a pig, cow or human-cadaver donor. If you have aortic valve regurgitation, the leaky valve may be surgical repaired or replaced.

Good luck and let us kinow how you're doing,

Jon

[stevie_wonder]

Hi,
So sorry that you are going through the frustration of having a doctor not explain things to you. I would suggest that you get a second opinion quickly.

Did the doctor call your condition "Stiff Heart Syndrome" or did he just refer to you having a stiff heart? He should have explained himself much better. I absolutely hate when doctors think we are too stupid to know the proper names of things that affect our lives. I know someone who had stiff heart syndrome but the actual name was cardiac amyloidosis. I'm not saying that this is what you have but you should really find out from your doctor if this is what you have. There are some new treatments for this now and it is important to treat it agressively. If you are near one of the bigger hospitals (Mayo, Cleveland etc) you could ask for a referral to someone who is probably more experienced.

Good luck to you and I hope you find some answers soon!

[kenneltech]

I went to see the cardiologist today, and, indeed, I have thickening of the ventricle walls.  I am in diastolic heart failure, and I do have edema and trouble breathing when I walk.

I am still going to find another cardiologist, because I had to pull teeth to get him to even tell me this much!  His bedside manner is lacking, to say the least!

I had a whole series of tests done, echo, stress test, ekg's, blood work, you name it, they did it, including wearing a monitor for a couple of days.

Anyway, thank you all for your support and help, as I know that everyone on here is also ill, and I was being selfish, my apologies.

[erijon]

Ken is correct, a stiff heart generally means that your left ventricle walls have thickened or are being squeezed by a fluid build up causing it to not be able to relax enough to allow your heart to fill properly. Having said that, you may also have left ventricular hypertrophy due to a valve condition or something like high blood pressure. In either scenario, you need to find the underlying cause and get it resolved to allow the heart to get back to normal. It would help to know what test you have undergone.

Sorry it took so long to get your question answered, there are many good people here that deserve better than what you said to them. We are a support group and try to help as many as possible, but there are just some questions we are not qualified or capable of answering.

I hope everything works out for you,

Jon

[kenkeith]

You may have had in the past a virus infection that has created chronic pericarditis, and I base that possibility as a cause for your water retention, etc.

The condition may not cause any symptoms until the long-term inflammation of the pericardium (outer lining of the heart) causes it to thicken and contract to the point where it interferes with normal heart filling (dx by your doctor). This condition is known as constrictive pericarditis. Pain may not be an issue, but symptoms that mimic heart failure may develop, including shortness of breath and edema (accumulation of fluid in the legs and abdomen), swelling in the abdomen because of fluid (ascites), and swelling of the liver.

You haven't stated any tests involved.  Blood tests, such as white blood cell count and measurement of cardiac enzymes, may help to confirm inflammation and identify its cause. . An electrocardiogram (EKG) may show changes in heart rate and rhythm (you do mention PAC) brought on by acute inflammation.  Viruses that cause pericarditis can sometimes attack the heart muscle and therefore, in rare cases, patients also develop heart-rhythm abnormalities or heart failure.  Sorry for your frustration...hope this helps you to do a differential analysis of your condition and prepares you with any questions for your doctor..

[kenneltech]

Thank both of you who understood how incredibly desperate I am, and understood that I was just being stupid and venting to the wrong people, and thanks for helping to answer my questions.  I am going to find a different doctor with the information you told me, as this doctor didn't say one thing about meds to relax the heart, he didn't even give this condition a NAME!

Thank you, again, and will keep you posted.

[rockcityaudiouk]

Hello,sorry that you feel the need to"vent"to the forums but please accept that the forums were never designed to"diagnose anyone"they are only here for support.If you employ a cardiologist and he tells you a diagnosis that you don't understand,why did not you ask him to explain it more in detail rather than coming on the forums and blaming it for your ignorance and stupidity?."Stiff heart" sounds like you may have something called "diastolic dysfunction." This describes a condition where the heart muscle becomes stiff. The stiffness prevents the heart from filling itself completely with blood with each heartbeat. The most common cause is high blood pressure, but other diseases can cause the same problem. The stiffness and decreased filling results in a decreased ability of the heart to pump blood to the body. Sometimes, when the heart is stressed, blood coming from the lungs into the left side of the heart gets backed-up. Once it gets backed-up, fluid from the blood leaks from the blood vessels into the lung air sacs causing "fluid in the lungs" or pulmonary edema. The same thing can happen in the legs, causing swelling of the feet, ankles, or lower legs. This overall process is sometimes referred to as "heart failure" or "congestive heart failure."

The treatment includes many kinds of medications to relax the heart muscle and decrease the amount of work it has to do. Some medications (called beta blockers) may actually decrease the stiffness of the heart muscle over time. Those who have problems with fluid build-up benefit from medications called diuretics, which make the kidneys urinate out extra fluid from the lungs or body. If you have high blood pressure, you should try to control this as much as possible with medication and lifestyle changes. This includes avoiding cigarettes, minimizing your salt and alcohol intake, getting regular aerobic exercise (after an OK from your doctor), and losing any excess body weight.
Hope this helps.

[grendslori]

It is more than likely Hypertrophic Cardiomyopathy which is a disease that causes the heart wall to become too thick. When the heart wall becomes to thick it becomes stiffened. An example would be for you to take a thick steak or better yet, a chuck roast, and try and poke your finger through it; the meat is too stiff for you to be able to do that and you cannot stretch it either. The reason for that is it is too thick. When the heart wall is too thick, the cells in the walls become aggitated and start to throw off their own electrical impulses which is why you are having the PVCs. PACs and PVCs are the 'back-up system' for the SA and AV nodes which are the main nodes in the heart to send off electrical impulses. Normally, water retention is not a problem with this disease as far as the ankles go, usually water retention in in the abdomen. There are certainly more than one reason for having swollen ankles than problems with the heart; something like the valves in the legs may not be working properly. You need to confront this doctor and find out EXACTLY what your diagnosis is. You pay him, he works for you. If he balks at that, find another doctor. If this is HCM, this is a serious form of heart disease and it can be genetic so if you have children they should have an echo done to rule the disease out in them. Have you had an echo done? How did your doctor come up with what he told you?  

[ireneo]

Wish we knew what the proper term was for your heart condition. That's like saying someone has a weak heart. Even if you wanted to research the condition yourself, it would be nice to know the real name. Any way you can call the office and ask them? I wonder if it's hypertrophic cardiomyopathy - thick heart walls.

[kenneltech]

My cardiologist just told me that I have a "stiff" heart, and that it doesn't stay in the relaxed mode long enough, and I have no idea what he is talking about, or what this truly means.

He gave me a diuretic, because he told me that it causes water retention, and my ankles are starting to swell some, but other than that, even though I asked, he didn't tell me anything!  I'm afraid and really concerned.  I've never had any heart problems before, except rapid heart rate, and a couple of times, I've had to go to the hospital because it was going so fast that I was throwing PVC's, and they don't know why this happens, so they put me on a blood pressure medicine to stop this from happening.

[grendslori]

I haven't been on the forum for a few days....what was your question?

[nickppatel]

Consider the following possibilities:  1) there aren't a whole lot of people who post here in the first place; 2) nobody knows the answer to your question(s).  I've had questions go unanswered before.  

I hope you are able to find help somewhere.