Pulmonary Hypertension Expert Forum
Scared To Death, Please Help!
About This Forum:

Pulmonary hypertension is a condition associated with high blood pressure in the arteries that connect your heart with your lungs. It is a serious condition for which there are many emerging treatments but no definite cure. In this disease, the blood vessels that carry oxygen-poor blood from your heart to your lungs become hard and narrow, which causes your heart to work harder to pump the blood. This forum is a place to ask questions about Pulmonary Hypertension. Some examples are: What caused me to get pulmonary hypertension? How is pulmonary hypertension diagnosed? What treatment options are available?

IMPORTANT!! If you have a question that requires immediate medical attention, or if you think you may have an emergency situation, please call your doctor or 911 IMMEDIATELY!

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Scared To Death, Please Help!

Wow, where to start. Recently my husband has gone through a battery of tests. Most of these tests were a part of routine yearly exams and others were as a precautionary measure due to family history, such as his colonoscopy. Anyway, he's 44 years old. All tests, blood, chest x-rays, various stress tests, EKG's, MRI's, Pulmonary Function, etc came back completely normal!!

The last doctor he saw was the pulmonologist (last week) which he saw due to complaints of shortness of breath. She went through a ton of questions with him and really nothing made her believe there was anything wrong or that anything should be causing it. We were almost leaning towards him just being out of shape as the reason. While he's not fat, 190lbs at 6 feet tall, he isn't very active when it comes to exercising.

Anyway, she then asked if he had ever had an echo cardiogram done in the past and what other tests and so he told her. He did happen to have one done in 2007. Luckily for us all these tests were done within the same network of hospitals and doctors so she was able to pull every single one of them up and read through them. Even the sleep study he had years ago (which he has a VERY MILD case of sleep apnea). Even she said and agreed everything was clear and good. Even the pulmonary function test she had done on him the week prior. She said everything was excellent. So, while looking at a recent x-ray, she even noted that the lungs and heart looked fine and normal there as well. But when she got to the echo, she said there was something in it about possibly a very mild case of pulmonary hypertension. Of course this scared us to death as no one ever mentioned that to my husband back when that test was done, In fact, when the doc went over the results of that old echo they said everything was fine and normal. Anyway, she said just to be sure, she wanted another one done to make sure nothing has changed and that we could go from there.

Cont. below.......
1884349_tn?1353818598
Hello and welcome to the forum.

This is a very interesting scenario that you describe.  The reason I say "interesting" is because I would have expected evidence for hypertrophic cardiomyopathy to be present on the battery of initial tests he had performed in the past (particularly the echo and the ECG).  I was least concerned with the "pulmonary hypertension" and I remain NOT concerned at all about the presence of absence of PH.

Having said all of that, in some respects, if your husband does indeed have hypertrophic cardiomyopathy, you might consider this a "blessing in disguise".  In other words, it is very important to make this diagnosis if it exists because there are things that can be done.  I am going to try to make this as simple as possible because I can talk about this condition forever but here is the story in a nutshell (all what I am going to tell you is under the assumption that he, unequivocally, has HCM.  If there remains any doubt DEFINITELY get a 2nd opinion).  The approach to HCM can be thought of in two major categories (1. treating the patient's symptoms.  2. Preventing "bad things" from happening...ie dying).

1. Symptoms:  The 1st approach here is with MEDICATIONS.  There is a very good chance that with appropriate medications, particularly those that slow his heart rate down a bit, his symptoms might get SIGNIFICANTLY better.  It is also important to avoid dehydration in this condition.  If after medications he still does not feel as well as he would like, there is a procedure (one surgical, the other done less invasively with a catheter) that can completely eliminate the problem that causes symptoms.

2. Dying:  Approximately 1% of people with HCM will die of a fatal arrhythmia.  While this is obviously a VERY small number, it's not a small number if that happens to you.  In order to determine whether you are at high risk or not very high risk for having arrhythmias, one needs to consider several factors (too long to describe here).  If it is determined that the risk is high enough, he should get a defibrillator (and ICD).  If he is not at high risk, he doesnt really have to worry about anything.  In the meantime (ie until this is sorted out), he should avoid high intensity exercise (though this may not be possible given his symptoms).

The final issue worth mentioning if he indeed has HCM is family screening.  First degree relatives should be screened for this.  

Bottom line:  Make sure he is seeing someone who is expert in HCM.  It is common and treatable and this fact alone should alleviate some of your worries I hope.

Hope this helps.

Wishing you all the best,

Dr. Rich

PS Not being able to "see the doc" for a few months to discuss the results is inexcusable.  I would call the "doc's" office every single day until somone has the courtesy to explain these results to the two of you.

  
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Cont.........

Well, he had it done and under each thing like left atrium, right ventricle, etc., everything says stuff like "no evidence of deffect", "normal thickness", "normal size", etc. However, the conclusion says, and it has us scared to death what it means,: This study demonstrates a hypertrophic cardiomyopathy with asymetrical septal hypertrophy and a significant gradient across the LV outflow tract.

What does that mean? We were in tears and are thinking the worst and won't get to see the doc again for some time to discuss the results. I of course have numbers and stuff listed on this report under each thing if you want or need that info. I hope someone can answer me soon. We're scared to death.
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Dr. Rich I want to thank you for responding. Today my husband had a copy of the report sent over to our family doc who called him back immediately upon reading it. He them recommended a cardiologist who specializes in HCM. He too called him back immediately and set an appointment for Halloween. He was also told to avoid any strenuous activity at all! The original wait on 2 months was to go back to the pulmonologist who originally requested this test be done as explained in my original message. But of course now things have changed and he's gonna be seen by the cardiologist.

Also, the family doc said he's gonna make sure they look over the echo again because, like us, even the doc seem perplexed that it didn't show AT ALL on the previous echo he had in 2007. Nor has any other tests shown anything abnormal (like you said). And we're talking chest x-rays, multiple stress tests, blood tests, pulmonary function, etc. He's literally had just about every test done and, up until now, it all came back great. Even the Neurologist we saw today (for something benign) looked at the echo and seemed perplexed. Especially after he asked questions like, "Do you have high BP? Diabetis? etc" and my husband answered no, His BP is always normal, like 118 (to 125) over like 70. And his resting pulse is always around 68.

I have all the numbers here and all the stuff that's written under each thing if you want to know anything specific. Like I said, it's scary but strange this is even happening. Especially when under each thing words show up like "No defect", "Normal function", "No abnormalities", "Structurally normal", "No stenosis", "Functioning normally", etc.

Anyway, if you want me to write anything from the report, please let me know. Thanks again!!!
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So, I just wanted to give a little update as it may help others who come here with similar test results/symptoms/etc. and who are scared and confused like my husband and I were.

Well, my husband had his cardiologist appointment today and it turns out she says he has a very mild case, in all parameters and aspects, of the condition described above. She also said it's pretty common. And, based on looking at his echo, she is very confidant that treating it with medication (Metoprolol) will be sufficient enough. Of course he will have to be periodically monitored, but that's ok.

We also had our 18 year old son with us and she even did a quick check up on him (which was very unexpected but very sweet of her) and sent in a request to have an echo done on him to see where he stands.

My husband will also have to wear a monitor for the next three weeks just to see exactly what's happening when and if he has any discomfort at all (shortness of breath, pain, etc.) and we will go to a follow up in December.

Anyway, I wanted to again thank you, doc, for your insight and help. It was very much appreciated and helped put our minds as ease a bit, until our appointment today. Thanks!!!
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1884349_tn?1353818598
Thanks for the update and I am glad that your husband's condition is being better clarified and that he will be receiving the appropriate treatment and monitoring.  Please let me know if I can be of further assistance.

Wishing you all the best,

Dr. Rich
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I definitely will!!! Thanks again!
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1884349_tn?1353818598
Jonathan D. Rich, MDBlank
Northwestern Memorial Hospital
Chicago, IL
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