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.

@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?

@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

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?

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?

@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.

@bangel

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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"Severely reduced left ventricular systolic functions. Moderate to severe mitral valve regurgitation. Severe Triscupid regurgitation with pulmonary hypertension SPAP =45mmHg." That was the conclusion of my test. Doctor said I should avoid salt. He prescribed Coversyl plus, Xarelto, rivaroxaban,Dilatrend and Lasix 40. What do you think?

@bangel

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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@gr82balive Thanks a lot

@bangel

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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@michelep1964 "Severely reduced left ventricular systolic functions. Moderate to severe mitral valve regurgitation. Severe Triscupid regurgitation with pulmonary hypertension SPAP =45mmHg." That was the conclusion of my test. Doctor said I should avoid salt. He prescribed Coversyl plus, Xarelto, rivaroxaban,Dilatrend and Lasix 40. What do you think?

@bangel

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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Again, I'm not a doctor, but with the regurgitation around your valves they want to do what they can to prevent the formation of blood clots and the Xarelto I recall seeing advertised to combat that. The Lasix is used to reduce excess fluid in your body sometimes a result of poor circulation. The others I think are different types of blood pressure medicine and they work differently. I don't know which is which, but one type works to lower blood pressure and the other type is used to relax vessel walls making it easier for blood to flow. Avoiding salt is necessary as when ingested can contribute to fluid retention, and this leads to higher blood pressure. Avoiding salt altogether is nearly impossible, especially if you buy prepared meals or canned foods. They will generally be very high in sodium. So what you can do right away, is to not add any salt to anything you cook. Look for items that say low salt to use for cooking. The best is to use fresh/frozen fruits and vegetables and fresh cuts of meat (not deli meat as these are usually loaded with sodium, your fresh cuts are usually unseasoned). Don't expect to become a salt czar overnight. But set yourself some goals to try to keep your salt level intake per day max. Did you doctor give you a number? You probably will want to try and get your total salt intake down to 1500mg to ideally 1000mg or less per day. It won't happen overnight, but set goals and work to get there, just don't beat yourself up trying to get there. Also, every person's response to medications are different, so don't be surprised if some changes are made to which meds and dosages as your body adjusts and responds to them. Stay tuned into your body and talk to your doctor if something doesn't seem right. Lastly, I'm guessing since I don't recognize any of these as a cholesterol reducing medicine that your heart failure wasn't due to blockages from cholesterol, but rather blood clot or high blood pressure. Did your doctor say anything about your cholesterol numbers? I didn't have high cholesterol; however, I did have a blocked artery that was opened with a stent and others were ballooned. My doctor said even though my numbers weren't bad, I likely have hereditary predisposition that allowed what cholesterol I had to block. It's not an exact science. Since my heart attack, I have a very low ejection fraction, so am on anticoagulant to prevent further clots and additional strokes. I also am on several meds too, but once we got the dosages tuned in, I think I'm doing alright. 😉 You will too! It's been 5 1/2 years since I had my heart attack.

Liked by bangel

@bangel

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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@gr82balive, I don't have high cholesterol. The doctor says I should lose weight as I'm very much overweight. So that's what I'm working on. Today I just ate egg whites and vegetables, and a piece of unsalted chicken breast. Thanks for your encouragement. At least I know I'm not alone. I hope we can talk quite often.

Thanks for sharing more details, @bangel. We have some incredible conversations about mitral valve/tricuspid valve regurgitation taking place on Connect:

– Mitral Valve & Tricuspid valve regurgitation: when to see a cardiologist? https://connect.mayoclinic.org/discussion/i-was-just-diagnosised-with-mitral-valve-and-tricuspid-insufficiency-i-have/
– Mitral valve prolapse/regurgitation https://connect.mayoclinic.org/discussion/mitroh-valve-prolapse-regergitation/

I’d also like to introduce you to a few members in these discussions; please meet @grandmajan @mikkeleo @jannyw @ml54 @rd4610 @yoanne @petersen73 @lyndylou @shakuni11 and Mentors @vdouglas and @hopeful33250. I’m confident they will join in and share their experiences to help you figure things out.

@bangel

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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With all that is going on with your heart, at least having low cholesterol is one less thing to have to try and manage, so that is good news! You are off to eating right. It's going to take time and will seem slow to make any progress, but even small progress is movement in the right direction. I often eat egg whites by pouring some in a non-stick pan, throwing in some chopped peppers, onions. Season with some Old Bay seasoning, maybe a little cayenne pepper. Make sure you do what you can to make what you eat taste good so it feels like a reward vs. punishing yourself by having to eat it. You can find fantastic ideas on ways to make food tasty and interesting via the web. Although you're on a diuretic, I think it's still important that you make sure to drink plenty of water. I'd ask you doctor about this to be sure as you want to work with your Lasix, not against it. Fresh fruit is also good to snack on. Variety is important to fight against taste fatigue. You can sauté or broil your vegetables too with a little bit of olive oil and seasonings. If you've had a lot of fluid build up, you'll see the scale move quickly with the Lasix, but that is water weight. Try not to get discouraged when it seems that you're not making progress. Your body is adjusting, and forming new healthy habits is a bigger step than seeing the scale drop. Consistency will get you there. Stay motivated and I'm sure you'll get there!

Hello @bangel

It sounds like you are making some necessary changes in order to be healthier. Lifestyle changes like this are most important. I am a Volunteer Mentor with Connect. I am not a medical professional, but I've had heart valve problems since I was a child. So I know the importance of good health practices like nutrition and exercise. Keep educating yourself about your health problems and advocate for the best care you can have. I encourage you to read the links that @kanaazpereira has provided, we have many Members of Connect who have posted about some aspect of the problems you have experienced. We all learn from each other!

I hope you continue to post, I look forward to hearing about your progress.

Teresa

Hello, @hopeful33250 I got admitted in to a hospital. The cardiologist says my heart is beating too fast and needs to be slowed down. I look forward to learning everything you can teach me. Thanks a lot. I will appreciate any information you can give me. I am so confused. I didn't expect this at my age.

@kanaazpereira

Thanks for sharing more details, @bangel. We have some incredible conversations about mitral valve/tricuspid valve regurgitation taking place on Connect:

– Mitral Valve & Tricuspid valve regurgitation: when to see a cardiologist? https://connect.mayoclinic.org/discussion/i-was-just-diagnosised-with-mitral-valve-and-tricuspid-insufficiency-i-have/
– Mitral valve prolapse/regurgitation https://connect.mayoclinic.org/discussion/mitroh-valve-prolapse-regergitation/

I’d also like to introduce you to a few members in these discussions; please meet @grandmajan @mikkeleo @jannyw @ml54 @rd4610 @yoanne @petersen73 @lyndylou @shakuni11 and Mentors @vdouglas and @hopeful33250. I’m confident they will join in and share their experiences to help you figure things out.

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@kanaazpereira Thanks a lot. I read it all.

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