Congestive Heart Failure in young people

Posted by brian Jeronimus @brian_j, Dec 14, 2016

My daughter, Heather, passed from Congestive Heart Failure at the age of 25. This was a total shock as she was very healthy and no examinations have ever revealed this possibility. She did have a kidney infection in Dec 2015 and went for diagnosis twice when she had the symptoms. Both times the doctors just passed it off as anxiety. She died in Feb 2015 at Tampa General. The surgeon tried to install VADs on both sides of her heart. When he came to us in the waiting room he said he never saw anything like the scars inside her heart.

I would like to know if anyone else has a story like this. We can only surmize that Heather must have had a dormant virus that was activated by something she took or was exposed to. I wished now we would have had an autopsy done but there may still be no way of finding out how she contracted this evil in her heart.

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

@bangel

@hopeful33250 . Thank you once again. I can't thank you enough. I will mention it to my doctor next week. I live with my brothers and sometimes I sneak a spoon or two of their food. It's not easy eating without salt or bouillon cubes.

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@bangel

I am glad to hear that you will be seeing your doctor on Monday. Since you are rather new to this type of health problem, I would recommend making a list of questions to ask your doctor and include the slight nose bleed, questions about a healthy weight loss diet, the excess saliva, and any other things that come to your mind which concern you. You might also ask your doctor if he could put you in touch with a dietician who can help you set up a nice eating plan that will get you off to a good start.

Here is a link from the American Heart Association regarding Healthy Living, https://healthyforgood.heart.org/eat-smart.

I look forward to hearing from you again!

Teresa

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@bangel

@hopeful33250 . Thank you once again. I can't thank you enough. I will mention it to my doctor next week. I live with my brothers and sometimes I sneak a spoon or two of their food. It's not easy eating without salt or bouillon cubes.

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Hello @bangel

Just wanted to check in with you to see how you are doing. I hope that your doctor's appointment on Monday went well and I also hope that you were able to get some answers to your many questions.

There is a conversation on Connect, that I thought you might find interesting. Here is the link to a discussion about a low salt diet, https://connect.mayoclinic.org/discussion/how-do-you-cope-with-low-sodium-diet/?pg=1#comment-96603

I look forward to hearing from you.

Teresa

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I am so very sorry for the loss of your daughter. I have not heard specifically about kidney infection and cardiomyopathy but I know that viral infections anywhere in the body can affect the heart. I have had symptoms of heart failure on and off since I had a flu-like illness in 2006. Shortness of breath, and unable to build any kind of exercise tolerance. Fluid retention and chest pains as well. I have not been able to fly in an airplane without terrible shortness of breath and chest pressure. Consumption of any type or amount of alcohol will bring on the same symptoms. I have had numerous tests, all of which I am told are normal. Unfortunately, as advanced as the cardiac tests and imaging are, they do not show everything. I think I have a chronic virus in the heart that is responsible for the symptoms. The doctors will not do the more invasive tests like a cardiac catheterization because they don't feel the non-invasive tests warrant it. I am at a loss. I think your daughter may have had a strong virus or bacteria that attacked the heart. I feel that females with chest pains are not taken seriously enough and the tests, even though very sophisticated do not show many things. I hope we see changes soon. It seems incomprehensible in this day and age that we do not know more about cardiomyopathy.

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@bangel

@hopeful33250 . Thank you once again. I can't thank you enough. I will mention it to my doctor next week. I live with my brothers and sometimes I sneak a spoon or two of their food. It's not easy eating without salt or bouillon cubes.

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@hopeful33250
Hello Tee, thanks a lot for remembering me and having me in mind. The appointment went well. My cardiologist says I can go for a bariatric surgery, so I'm getting ready for that in about 10 days from now. Thanks a lot for caring. I hope we can be best of friends.

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@bangel

@hopeful33250 . Thank you once again. I can't thank you enough. I will mention it to my doctor next week. I live with my brothers and sometimes I sneak a spoon or two of their food. It's not easy eating without salt or bouillon cubes.

Jump to this post

Hello @bangel

I am so pleased that your appointment went well.

I was not aware that you were considering bariatric surgery. If you don't mind sharing more, what type of surgery will this be? You mentioned that this will be in about 10 days. Is that when you see a bariatric surgeon or is that the date of your surgery?

I am wishing you well and I look forward to hearing from you again!

Teresa

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@bangel

@hopeful33250 . Thank you once again. I can't thank you enough. I will mention it to my doctor next week. I live with my brothers and sometimes I sneak a spoon or two of their food. It's not easy eating without salt or bouillon cubes.

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Hello @hopeful33250
First of all, I hope you are doing good? Cos I always talk about myself, without really asking how you are doing yourself. I hope you forgive my selfishness. I had seen the surgeon before now, it was when I wanted to get the surgery that I found out about my heart condition. I'm hoping the surgery will be done at the end of the month. My surgeon still hasn't decided yet, he wants to do gastric balloon and do gastric sleeve after 6months. But, he is still thinking about just doing the sleeve. I noticed that towards evening I feel a bit feverish and my heart rate increases and when I lie still, I feel my hands and back vibrating a bit.

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@maryd

I am so very sorry for the loss of your daughter. I have not heard specifically about kidney infection and cardiomyopathy but I know that viral infections anywhere in the body can affect the heart. I have had symptoms of heart failure on and off since I had a flu-like illness in 2006. Shortness of breath, and unable to build any kind of exercise tolerance. Fluid retention and chest pains as well. I have not been able to fly in an airplane without terrible shortness of breath and chest pressure. Consumption of any type or amount of alcohol will bring on the same symptoms. I have had numerous tests, all of which I am told are normal. Unfortunately, as advanced as the cardiac tests and imaging are, they do not show everything. I think I have a chronic virus in the heart that is responsible for the symptoms. The doctors will not do the more invasive tests like a cardiac catheterization because they don't feel the non-invasive tests warrant it. I am at a loss. I think your daughter may have had a strong virus or bacteria that attacked the heart. I feel that females with chest pains are not taken seriously enough and the tests, even though very sophisticated do not show many things. I hope we see changes soon. It seems incomprehensible in this day and age that we do not know more about cardiomyopathy.

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Welcome back, @maryd! It's been a while, and although it seems you still aren't feeling too well, I'm so glad to see you return to Connect.

@maryd, have you considered making an appointment at the Heart Failure Clinic, at Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/heart-failure/care-at-mayo-clinic/mac-20373154?

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First of all my heart goes out to everyone who posts their difficulties here. Sometimes when I think I'm having a bad day, then I read someone else's story, it's not such a bad day for me after all. But everything that I have read here is about treatment and not a cure. What I'm about to ask is outside of the box, but has anyone had any experience with gene therapy? Without going into a lot of detail, It is suppose to rejuvenate and strengthen dead muscle. Lab research, tests on people in the last stage of CHF had 100% positive results. I know it's controversial and doesn't have the FDA's blessing, but there are already clinics operating here in the US showing positive results in treating people for cardiomypathy. Doctors don't want to talk about it here in the states. Other countries have all ready approved and are administrating gene therapy to patients. I have already written a letter already to my senator, It takes a lot of politics, time and money to get medical procedures approved.

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@fishinpete

First of all my heart goes out to everyone who posts their difficulties here. Sometimes when I think I'm having a bad day, then I read someone else's story, it's not such a bad day for me after all. But everything that I have read here is about treatment and not a cure. What I'm about to ask is outside of the box, but has anyone had any experience with gene therapy? Without going into a lot of detail, It is suppose to rejuvenate and strengthen dead muscle. Lab research, tests on people in the last stage of CHF had 100% positive results. I know it's controversial and doesn't have the FDA's blessing, but there are already clinics operating here in the US showing positive results in treating people for cardiomypathy. Doctors don't want to talk about it here in the states. Other countries have all ready approved and are administrating gene therapy to patients. I have already written a letter already to my senator, It takes a lot of politics, time and money to get medical procedures approved.

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I have not heard of it. I would love to know more. Where did you hear of this?

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@maryd

I am so very sorry for the loss of your daughter. I have not heard specifically about kidney infection and cardiomyopathy but I know that viral infections anywhere in the body can affect the heart. I have had symptoms of heart failure on and off since I had a flu-like illness in 2006. Shortness of breath, and unable to build any kind of exercise tolerance. Fluid retention and chest pains as well. I have not been able to fly in an airplane without terrible shortness of breath and chest pressure. Consumption of any type or amount of alcohol will bring on the same symptoms. I have had numerous tests, all of which I am told are normal. Unfortunately, as advanced as the cardiac tests and imaging are, they do not show everything. I think I have a chronic virus in the heart that is responsible for the symptoms. The doctors will not do the more invasive tests like a cardiac catheterization because they don't feel the non-invasive tests warrant it. I am at a loss. I think your daughter may have had a strong virus or bacteria that attacked the heart. I feel that females with chest pains are not taken seriously enough and the tests, even though very sophisticated do not show many things. I hope we see changes soon. It seems incomprehensible in this day and age that we do not know more about cardiomyopathy.

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Hello! I had a heart work-up at Mayo Clinic, MN. in 2015. They reviewed many of the test results from the event in 2005 and forward. They repeated some of them, such as the stress echo with oxygen consumption and overnight oximetry. In addition they added an MRI of the heart. They would not do anything further because they felt my tests were normal. My symptoms are heart failure symptoms.....I strongly believe that. I was seen by the general cardiology dept. Is there a separate heart failure clinic? I recently read about cardiomyopathy with normal E.F. I'm wondering if they did not feel I had heart failure symptoms because my ejection fraction on echo is 50-55%.? is there anyone out there that has heart failure symptoms but is not being treated for such because blood tests and echo are not showing it?

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