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.

@yuno

I'm so sorry 🙁 may she rest in peace! I keep having pain on the right side of my chest all the time. Any idea towhat this would be.

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@yuno, Hello and Welcome to Mayo Clinic Connect!

Please use our community for support with any medical condition. Here, we will connect you with others who may be experiencing similar symptoms or diagnoses. I see that you have mentioned kind words to @brian_i This is exactly what this community is built on. Support, exchange of experiences and any information that keeps our community safe.

While Connect is the perfect community to engage in, we can not offer any sort of medical advice. What I can say is; chest pain in any form is not something to mess around with. Even if you think it "could be" just acid reflux or something else- get yourself checked out by a medical professional. You are your own best advocate.

Please reply and let us know how you are doing!! Sending warm thoughts your way.

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@cynaburst

So sorry to hear about your daughter. Unfortunately, it is not possible for us to guess what might have caused her serious disease. There are some genetic forms of cardiomyopathy which do cause congestive heart failure in young people. Has anyone recommended that the surviving members of your family undergo genetic testing to see if this might be the case in your family? Also, if there are any blood samples left from your daughter, it may be possible for you to have those tested for genetic forms of cardiomyopathy.

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Thank you for the kind words. My ex Maryann has a daughter from another marriage that had a heart attack at 30 but she survived. It seems coincidental but Maryann's mother also died of a heart attack at age 65. She only knows one side of her family so you could be right in thinking it's genetic. Could you tell me the type of test needed for her since my Heather has no DNA since she was cremated. Also what would the cost of the test be on average? Thank you again.

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@cynaburst

So sorry to hear about your daughter. Unfortunately, it is not possible for us to guess what might have caused her serious disease. There are some genetic forms of cardiomyopathy which do cause congestive heart failure in young people. Has anyone recommended that the surviving members of your family undergo genetic testing to see if this might be the case in your family? Also, if there are any blood samples left from your daughter, it may be possible for you to have those tested for genetic forms of cardiomyopathy.

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There are a few different conditions that should be screened for. Your best bet is to find a genetic counselor that specializes in cardiac disorders and have them order the appropriate tests for the living relatives. Where do you live? Mayo Clinic would be one place that could help but I may be able to help direct you to another closer to you. Cost is sometimes covered by insurance. Different companies may work with you. There are several companies that offer testing now.

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I was diagnosed with pre-hbp in sep 2016, later it indicated hbp in dec 2016. the symptons that send the to the hospital was burning pain lat the lower chest. Anytime i complaint about thd burning doctors come up epigastric conclusion ruling out heart complications. Now i feel pain on the left side of my chest. my doctor says my bp which 140/85 is under control, my pulse is ok. and should not worry of any heart complication but i feel i should force them to do heart diagnosis because the pain has lasted over 9months of on & off pain.

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@delianto

I was diagnosed with pre-hbp in sep 2016, later it indicated hbp in dec 2016. the symptons that send the to the hospital was burning pain lat the lower chest. Anytime i complaint about thd burning doctors come up epigastric conclusion ruling out heart complications. Now i feel pain on the left side of my chest. my doctor says my bp which 140/85 is under control, my pulse is ok. and should not worry of any heart complication but i feel i should force them to do heart diagnosis because the pain has lasted over 9months of on & off pain.

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Yes i thjnk so

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@delianto

I was diagnosed with pre-hbp in sep 2016, later it indicated hbp in dec 2016. the symptons that send the to the hospital was burning pain lat the lower chest. Anytime i complaint about thd burning doctors come up epigastric conclusion ruling out heart complications. Now i feel pain on the left side of my chest. my doctor says my bp which 140/85 is under control, my pulse is ok. and should not worry of any heart complication but i feel i should force them to do heart diagnosis because the pain has lasted over 9months of on & off pain.

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Hello, @delianto, and welcome to Mayo Clinic Connect. Sounds like you still have concerns that you feel have not been adequately addressed about possible heart complications. I can imagine that is frustrating.

One tool you might check out is this Mayo Clinic Symptom Checker: https://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

Have you looked into the possibility of getting a second opinion?

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@delianto

I was diagnosed with pre-hbp in sep 2016, later it indicated hbp in dec 2016. the symptons that send the to the hospital was burning pain lat the lower chest. Anytime i complaint about thd burning doctors come up epigastric conclusion ruling out heart complications. Now i feel pain on the left side of my chest. my doctor says my bp which 140/85 is under control, my pulse is ok. and should not worry of any heart complication but i feel i should force them to do heart diagnosis because the pain has lasted over 9months of on & off pain.

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Hello @delianto and let me add my welcome to that of Lisa's.

As I read your post, I was wondering what tests you had to rule out cardiac problems. Have you had an echocardiogram, stress stress or something else? If not, I agree with Lisa that a second opinion would be a good next step. You should probably seek a referral to a cardiologist. Once you have a second opinion, you can put your mind at ease.

We look forward to supporting and encouraging you during this time. Will you keep in touch with us and let us know how you are doing?

Teresa

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I am 25 years old, and I have been diagnosed with heart failure. Please what does that mean for me? Is that the end of the world for me? Will it ever go away? Do I have to avoid salt for the rest of my life?

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Welcome to Connect, @bangel. I can only imagine your worry with such a diagnosis, and I'm so glad you've joined us.
Heart failure sometimes develops after other conditions have damaged or weakened your heart. Here's some information from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/heart-failure/symptoms-causes/syc-20373142

You may notice that I moved your discussion and combined it with this existing discussion on heart failure. I thought it would be beneficial for you to be introduced to other members who have discussed much of what you are experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their loved ones' experiences.

@bangel, could you share a few more details about yourself? What symptoms have you been experiencing? Have you undergone any tests to determine what type of heart failure you might have? What next steps has the cardiologist recommended for you?

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@kanaazpereira Thanks a lot for your reply. I have been experiencing dry cough and shortness off breath. I have had hiccups a few times as well. This is the conclusion of my test "Severely reduced left ventricular systolic functions. Moderate to severe mitral valve regurgitation. Severe Triscupid regurgitation with pulmonary hypertension SPAP =45mmHg." I am Morbidly obese and I'm wondering if this problem is going to go away after I lose weight, because I have started a diet plan.

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