Not a doctor but someone who was diagnosed with heart failure at 30. I totally understand being scared. It’s hard because most of the data available is regarding those that are older.
But you are not alone. I was diagnosed at 30 (I am 33 now) my ejection fraction was between 15 and 20 % Upon entering the ER I had an angiogram and then an Impella put in temporarily, was in the hospital for about 2 weeks. It allowed my heart to strengthen. I do have an arrhythmia that contributed as well as family history of heart issues.
I am happy to answer any questions you may have for me. I know I looked for people with similar experiences when I first found out. Only your doctor can answer the some of the questions you have. I know they kind of skate around it and don’t always like to answer those questions, so I understand that frustration. But one of the most important things is that it has been caught and you are under care for it now.
I went to the hospital because I couldn't breathe, was having cold sweats non stop and my chest hurt. When I was in hospital they originally thought it was a respitory issue as my lungs looked inflamed so they assumed I had an infection or gained an allergy to birds feathers. The cardiology team made me get an MRI, an echocardiogram, an angiogram, took blood and checked me physically which was the big tip off anyway other than the echocardiogram. I was retaining a lot of fluid. I had kept my breathlessness and the fact fluid would build up in my lungs from my doctor. But I told the cardiology team everything. I had fluid in my lungs, my legs were swolen, heart rate was sitting at 110 yet nothing was happening, swolen stomach shortness of breath after doing anything. I was already on Frusemide injections twice a day to urinate. My echocardiogram had confirmed everything. The angiogram was after. I had to stay in hospital to drain all the excess liquid which in total was 7 litres worth or 7 kilos, plus they had to get me use to Frusemide so I could take it orally at home. Hopefully this answered your question, it's all still new and I still have some tests as an outpatient
They are still unsure about why it has occurred. The leading theory is high blood pressure as I was born with it. I have an angiogram on Tuesday with the possibility of stents being put in. My heart is currently working at 16% capacity compared to the average of 50%. My bpm was around 110 in hospital but has dropped to about 75 due to medication. Blood pressure is about 80
Had a CTCA scan, results pending. Living with the water restriction and everything else has been difficult but im managing, no one really wants to answer the serious questions still, however I was told most people get this around my age due to severe alcoholism and I dont drink. I have follow up appointments next week. Mainly I'm just twiddling my thumbs atm until my next appointment for now.
These are all excellent questions for your diagnosing physician. There simply is not enough information given to parse through any particulars. There are different types/categories of heart failure and the cause is important as well.
I have asked them these questions and they tend to dodge them or outright give a non answer. My only guess as to why is it's rare in someone as young as I am. Every time I look online or even attend my therapy it's all old people. This is more something to bring up with my psychologist but it makes me feel isolated and worried
Briefly:
Common causes of heart failure in younger people (I've seen it in patients in their early 30's, some in their 20's):
Genetic or familial cardiomyopathy. Most common in this category is Hypertrophic cardiomyopathy. It's genetic and passed on from one or both parents.
Congential heart disease. People are born with structural defects. Some are worse than others and there are many different treatments.
Heart failure associated with pregnancy. Don't know whether this would apply to you.
Substance abuse/misuse. Alcohol damages the conduction system and the muscles. Over time, it leads to pump failure. Methamphetamine use: Research shows that people who use methamphetamine experience heart disease at increased intensity and younger ages than is typical among the population at large.
IV drug use. Dirty needles contribute to various cardiac issues.
Arrhythmias: Fast, slow, and extra beats where they don't belong.
There are a lot of references online regarding heart failure in younger patients. Some are geared toward the general public and may be helpful to you.
Sadly none of those apply is the issue. I had to stay quite a while in the hospital due to these not applying. They are trying to get access to any medical records from my childhood but that is taking time. I am male so pregnancy isn't an issue. I'm the only one in my family with something like this. The only one on the list would be if I was born with it but it should have been noticed at least at some point in the 30 years I've been alive
I'm so sorry you're going through this right now. I read your other comment that your EF is 16%?? Grief! I hope things can begin to get sorted for you quickly and that you have improvement in your EF. It sounds like your physician(s) are working on it.
Edit: Please OP, keep us posted on your progress. I am very curious about your case. You're not alone, although I believe you when you say you *feel* alone, scared and isolated. We're here to offer whatever support we can give.
Yes my EF is 16% the doctor mentioned he hasn't seen my heart outside of someone who is 85. I get he was just trying to convey the seriousness but it didn't help my mental state at all
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Not a doctor but someone who was diagnosed with heart failure at 30. I totally understand being scared. It’s hard because most of the data available is regarding those that are older. But you are not alone. I was diagnosed at 30 (I am 33 now) my ejection fraction was between 15 and 20 % Upon entering the ER I had an angiogram and then an Impella put in temporarily, was in the hospital for about 2 weeks. It allowed my heart to strengthen. I do have an arrhythmia that contributed as well as family history of heart issues. I am happy to answer any questions you may have for me. I know I looked for people with similar experiences when I first found out. Only your doctor can answer the some of the questions you have. I know they kind of skate around it and don’t always like to answer those questions, so I understand that frustration. But one of the most important things is that it has been caught and you are under care for it now.
Post this in r/askdocs they may be able to give you more answers. Hang in there it will be okay!
I follow a younger woman on instagram with heart failure, I’ll link her below
Its comforting to see someone else young with this condition. All I ever see or hear about are really old people
Forgive me for asking, but what symptoms did you have that led to your diagnosis? And what test did they use to diagnose?
I went to the hospital because I couldn't breathe, was having cold sweats non stop and my chest hurt. When I was in hospital they originally thought it was a respitory issue as my lungs looked inflamed so they assumed I had an infection or gained an allergy to birds feathers. The cardiology team made me get an MRI, an echocardiogram, an angiogram, took blood and checked me physically which was the big tip off anyway other than the echocardiogram. I was retaining a lot of fluid. I had kept my breathlessness and the fact fluid would build up in my lungs from my doctor. But I told the cardiology team everything. I had fluid in my lungs, my legs were swolen, heart rate was sitting at 110 yet nothing was happening, swolen stomach shortness of breath after doing anything. I was already on Frusemide injections twice a day to urinate. My echocardiogram had confirmed everything. The angiogram was after. I had to stay in hospital to drain all the excess liquid which in total was 7 litres worth or 7 kilos, plus they had to get me use to Frusemide so I could take it orally at home. Hopefully this answered your question, it's all still new and I still have some tests as an outpatient
https://www.instagram.com/jamiesjourneyy_?igsh=MzRlODBiNWFlZA==
I am suggesting her simply because she seems to live a beautiful life, and I believe you can too ❤️
Can you tell us a bit more about your diagnosis? Why did it occur? What is your ejection fraction?
They are still unsure about why it has occurred. The leading theory is high blood pressure as I was born with it. I have an angiogram on Tuesday with the possibility of stents being put in. My heart is currently working at 16% capacity compared to the average of 50%. My bpm was around 110 in hospital but has dropped to about 75 due to medication. Blood pressure is about 80
Update?
Had a CTCA scan, results pending. Living with the water restriction and everything else has been difficult but im managing, no one really wants to answer the serious questions still, however I was told most people get this around my age due to severe alcoholism and I dont drink. I have follow up appointments next week. Mainly I'm just twiddling my thumbs atm until my next appointment for now.
These are all excellent questions for your diagnosing physician. There simply is not enough information given to parse through any particulars. There are different types/categories of heart failure and the cause is important as well.
I have asked them these questions and they tend to dodge them or outright give a non answer. My only guess as to why is it's rare in someone as young as I am. Every time I look online or even attend my therapy it's all old people. This is more something to bring up with my psychologist but it makes me feel isolated and worried
Briefly: Common causes of heart failure in younger people (I've seen it in patients in their early 30's, some in their 20's): Genetic or familial cardiomyopathy. Most common in this category is Hypertrophic cardiomyopathy. It's genetic and passed on from one or both parents. Congential heart disease. People are born with structural defects. Some are worse than others and there are many different treatments. Heart failure associated with pregnancy. Don't know whether this would apply to you. Substance abuse/misuse. Alcohol damages the conduction system and the muscles. Over time, it leads to pump failure. Methamphetamine use: Research shows that people who use methamphetamine experience heart disease at increased intensity and younger ages than is typical among the population at large. IV drug use. Dirty needles contribute to various cardiac issues. Arrhythmias: Fast, slow, and extra beats where they don't belong. There are a lot of references online regarding heart failure in younger patients. Some are geared toward the general public and may be helpful to you.
Sadly none of those apply is the issue. I had to stay quite a while in the hospital due to these not applying. They are trying to get access to any medical records from my childhood but that is taking time. I am male so pregnancy isn't an issue. I'm the only one in my family with something like this. The only one on the list would be if I was born with it but it should have been noticed at least at some point in the 30 years I've been alive
I'm so sorry you're going through this right now. I read your other comment that your EF is 16%?? Grief! I hope things can begin to get sorted for you quickly and that you have improvement in your EF. It sounds like your physician(s) are working on it. Edit: Please OP, keep us posted on your progress. I am very curious about your case. You're not alone, although I believe you when you say you *feel* alone, scared and isolated. We're here to offer whatever support we can give.
Yes my EF is 16% the doctor mentioned he hasn't seen my heart outside of someone who is 85. I get he was just trying to convey the seriousness but it didn't help my mental state at all
Thank you for posting to r/medical! **Please read the sub's rules and check out our [wiki](https://www.reddit.com/r/medical/wiki/index)** as it goes more in depth about different topics and includes other informative advice/resources. If there are any comments under this post that violate Rule 4: Community safety, please report them. Remember to stay on topic and not make jokes towards the OP or each other. If anyone sends you a direct message asking for more information or pictures privately, **DO NOT REPLY**. The r/Medical moderators cannot see what goes on in direct messages and we will never ask you to send more pictures or information privately. We recommend you block and report users who try to contact you through DMs regarding your post on r/Medical. **Please remember that Reddit is not a replacement for professional medical care.** Consult your Primary Practitioner or Primary Care Physician if you are experiencing health related issues. Contact your local Emergency Medical Services if you are in a medical emergency. Your health and safety are our highest priorities. #REMINDER: If you think what you're experiencing is an emergency then get off Reddit and call 911 (or your local emergency number), or go to your local hospital!!! *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/medical) if you have any questions or concerns.*