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brian Jeronimus
@brian_j

Posts: 5
Joined: Dec 14, 2016

Congestive Heart Failure in young people

Posted by @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.

REPLY

Hello @brian_j. I’m so sorry to hear of the loss of your daughter, how very tragic. The fact that you had no warning makes this all the more difficult. I can understand your confusion about this and I’m so glad that you have joined Mayo Connect. This is a great online community that seeks to support and encourage patients and their loved ones. I anticipate that you will receive other replies in the near future. Please take care of yourself, you have obviously been through quite a shock.

@hopeful33250

Hello @brian_j. I’m so sorry to hear of the loss of your daughter, how very tragic. The fact that you had no warning makes this all the more difficult. I can understand your confusion about this and I’m so glad that you have joined Mayo Connect. This is a great online community that seeks to support and encourage patients and their loved ones. I anticipate that you will receive other replies in the near future. Please take care of yourself, you have obviously been through quite a shock.

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Thank you for your response I appreciate it. I’m trying to play detective because I saw one other case where the kidney was infected which also happend to my daughter.Sent from Yahoo Mail on Android

@hopeful33250

Hello @brian_j. I’m so sorry to hear of the loss of your daughter, how very tragic. The fact that you had no warning makes this all the more difficult. I can understand your confusion about this and I’m so glad that you have joined Mayo Connect. This is a great online community that seeks to support and encourage patients and their loved ones. I anticipate that you will receive other replies in the near future. Please take care of yourself, you have obviously been through quite a shock.

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@brian_j It will be interesting to see if any others on Mayo Connect have had the combination of kidney infection and heart failure. The American Heart Association has an online patient support network. Have you tried to post your questions there as well? I can understand why you playing detective. Please keep us posted.

What was her symptoms?

weakness, nausea, bloated up to waist, shortness of breath, pain in neck,. She had a kidney infection 2 weeks before and did not go to er till 2 days later. They gave her antibiotics which seemed to work. I suspect the kidney infection may have gone past the kidney to her heart. The staff at Tampa General weren’t sure if it was viral or bacterial version. The doctor that opened her heart to attach a VAD said there was significant old blood clots on the heart walls.

I would love to know how the infection got in her body. Was it a dormant virus or was it something she was exposed to?

weakness, nausea, bloated up to waist, shortness of breath, pain in neck,. She had a kidney infection 2 weeks before and did not go to er till 2 days later. They gave her antibiotics which seemed to work. I suspect the kidney infection may have gone past the kidney to her heart. The staff at Tampa General weren’t sure if it was viral or bacterial version. The doctor that opened her heart to attach a VAD said there was significant old blood clots on the heart walls.

I would love to know how the infection got in her body. Was it a dormant virus or was it something she was exposed to? I need closure because I cannot lose someone dear to me without knowing why. I think she knew she was in bad shape because she was very smart and would have researched her symptoms online. There were just to many obstacles in her way and her thinking was clouded because she was taking ZANAX prescribed by a doctor who misdiagnosed her as having anxiety

@brian_j

weakness, nausea, bloated up to waist, shortness of breath, pain in neck,. She had a kidney infection 2 weeks before and did not go to er till 2 days later. They gave her antibiotics which seemed to work. I suspect the kidney infection may have gone past the kidney to her heart. The staff at Tampa General weren’t sure if it was viral or bacterial version. The doctor that opened her heart to attach a VAD said there was significant old blood clots on the heart walls.

I would love to know how the infection got in her body. Was it a dormant virus or was it something she was exposed to? I need closure because I cannot lose someone dear to me without knowing why. I think she knew she was in bad shape because she was very smart and would have researched her symptoms online. There were just to many obstacles in her way and her thinking was clouded because she was taking ZANAX prescribed by a doctor who misdiagnosed her as having anxiety

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@brian_j Thank you for sharing the additional information about your daughter’s symptoms. I sense the disbelief as you write and I can certainly understand it. I hope that you are able to connect with a grief support group at some point down the road, I think it would be helpful for you. Please keep sharing your daughter’s story. There still might be someone who will post a similar experience. Best wishes to you and your family as the holidays approach.

@brian_j, Brian, I just want to say how sorry I am this has happened to you. I have children and grandchildren .. I cannot even imagine the pain you are going through .. good for you that you are on Mayo Clinic Connect trying to find some answers .. AND maybe helping others. Sending you a hug! Katherine

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.

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

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.

@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.

@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.

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.

@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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