I inherited this from my mother, grandmother, uncles, aunt, mother first cousins. In the past I was afraid of this disease, but today I go about my day, take my meds say my prayers and leave the rest to God. I know I will leave this world one day therefore I plan on enjoying every moment that God gives me with my one and only child. My child makes me smile. I love you Justin❤️🥰🥳😇🙏
I am the sane situation...my 2 kids give me strength ....but some days nights...i cry alone because i am fraid ..if i live them...alone... I hope believe in GOD...
I’m going to the ER now. I had an ECHO recently and have this. For eight years I’ve been blacking out and passing out, becoming severely out of breath and having chest pressure and pain. For the past five days, I’ve been unable to brush my hair or fix my pillow without sending my heart rate to at least 130. I stood up to open the window next to my bed and it shot from 70 to 160 in those three seconds. I can’t live like this anymore- but this is only a little worse than my “normal” state. I can be up for five to sometimes fifteen minutes on good days, but will pass out if I push it, plus I dry heave as I recover over the next ten minutes. The confusing factor is that my doctors diagnosed me with Non Length Dependent Small Fiber Neuropathy eight years ago with skin biopsies. I developed full body burning, dizziness, pounding heart, weakness, fasciculations, spreading numbness, neuropathic itch suddenly nine years ago. I believed, and still believe, that I ALSO have Neuropathic POTS. My digestive system is an issue on the same lines, and it may be complicating my breathing, too! No one I know has such severe POTS, or so regular and unstable. Now my kidneys are also going bad, which I know can go with the heart issue if genetic. My GFR dropped from 59 to 51 in four months. My doctor never warned me they were slipping until this. I also found they suspected I’d had a recent heart attack but didn’t tell me, and I’m not being treated nor do we have a plan except a follow up blood test in a few weeks. I was told to exercise “more” though I’m extremely intolerant to exercise and becoming too hot. In fact when I stood up to walk out with my doctor, I blacked out and walked into the wall, so she asked me if I was okay. I said “no, that’s what I’ve been telling you.” Then she offered me a wheelchair…. 🤷🏼♀️
Sorry for your lost! And same for you Alex!! Seeing these stories just remind me how thankful we all should be to be here! I was just told I need a transplant because of my hcm
You guys who lost people from this I’m sorry.. I’m 19 and I was diagnosed with this when I was 15 but doctors never took it seriously and I kept hearing it wasn’t really a serious thing (I was clearly lied to) but this year I’ve had chest pain all year I swear, so thank you for sharing because now I’m gonna get it checked out again ❤️😞
Today my dad got diagnosed with it and I just figured out that the worst that could happen is that he could die. Many people have tried to tell him how to manage it but he’s not listening. Im really worried about him. Praying for him rn
My very healthy 45 year old Airforce son passed suddenly on the way home from his morning run Aug 2 2023. He ran his whole life. The veterans hospital missed all his complaints.
Technology and science has come along ways. HCM has taken so many of my family members and now passed on down to me from my mother to her mother to my great grandmother…aunt uncles cousins. It has devastated my family, but thank God with new inventions it will help me and many more in my family…😊♥️
Very informative video, thanks for uploading it 🙂 I had my 1st stemi heart attack at 30 & again this year at 34 , they reckon I have this genetic condition Factor 5 Leiden. When I had a stress/ultrasound test the other day they said hypertrophic during the test, but they didn't tell me what that meant. They want me to wait until the 9/1/20 to see the cardiologist for the results 😕I just want to know what's going on because my dad died of a heart attack when I was 3 weeks old. I'm trying avoid that fate at this age & learn about my heart issues, so I can better manage it. This was video was very helpful in explaining it 🙂
@@giovannamoro8564 I'm ok thanks for asking 🥰I haven't had anymore heart attacks since my previous comment. I've just been extremely tired & going to regular hospital appointments. How are you???
Thank you for making me understand more my illness. I am from the Philippines and sadly they don't do myectomy surgery here and even if they do, I can't pay for my surgery. I was diagnosed 2015, HoCM with severe MR. I am very worried because I can even feel skipping of my heartbeat.
My dad passed away of HCM when I was four months old and im the only child of his out of 4 that has the same condition is him but my is called hypertrophic obstructive cardiomyopathy, I found out when I was 14 and I’m almost 16, last year February I had an ICD implanted in me and ever since it’s been rough. And in a way I feel special because the gene chromosome that caused my hypertrophic obstructive cardiomyopathy I’ve been told that me and only one other person in the entire world have that same gene.
My simptoms Are: Fatigue Lightheadedness when standing up or during physical activity sometimes even when im just being still Dizzyness same as the lightheadedness part Insomnia Unintentional weight loss Random nausea Not being hungry Pressure and discomfort in my heart area/chest Feeling Like my heart is skipping beats I think i might heart palpitations but they sometimes hurt My heart rate is higher than it should be exsample when i go from sitting to standing my heart rate jumps between 30-100bmp depends on the day just in general my heart is beating too fast Im allways out of breath allways i can’t walk up two sets of stairs and i start breathing Like i ran a maraton and whenever i do PE and we have to run two laps around the Court it feels Like a elephant is on my chest and i feel Like im going to faint any second and i fainted once a few months back during a violin lesson I Had a EEG Done but it was Like 10-30-60 seconds of a EEG and back then a few months ago i didnt have these heart simptoms also i read somewhere that sometimes these episodes Are almost impossible to see on a EEG Because theyre just not happening in that moment i Had a Brain mri scan everything is Okay i Had a blood check everything is fine im NOT anemic and im NOT lacking anything that Would cause these simptoms Im not too worried but i just want to get these tests over with and get diagnosed so that i can get some kind of treatment to help me be normal again im waiting for my dad to schedule all of the appointments i have left such as a tilt table test and a 3 minute test where i run on a treadmill and they check my heart under stress i guess idk i think i might have cardiomyopathy i dont know What kind but i do know that i cannot deal with the heart discomfort any longer its Like being on the verge of a heart attack every once in a while and the palpitations Are Like stronger every time it feels Like so Yea im not letting myself get too worried
I'm having the exact same symptoms as you. It feels like I don't know if I'm going to wake up alive the next day all the time. Please let me know if you got your results
@@mfaye5549 i got my results and they found nothing apsolutely nothing my symptoms have maninly resolved but the cause might have been anxiety so Please get checked out were different people
@@LouieTzepher my fiancée was 24 when he died, my father was 55. They both had the same condition. It’s genetic, effects predominantly men. Both our families have it in our genetics
@@vandemanferretstasmania.ni9576 That just scared me, I am 28 and I have it. Looking at treatments as we speak but now that your fiancé died at 24 from it…. Makes me think I should probably stop thing being young gives me the upper hand in this.
I have obstructed HCM and am on a type of Beta Blocker that actually lowers my heart rate. Doc says if the heart beats at 180 bpm and something lets go, I won’t be happy. So by restricting the beating to a lower rate, when I have my heart attack, he figures they can save my life more readily. In the meantime, he told me to start working on my bucket list. I have lost my career because of this, so I have time to do just that. And I am. Live every day as if it is going to be your last.
Please accept jesus into your life as your savior. He really can save us. I have a heart condition so I really know how you feel. God loves you, more than you know, and he's right there for you anytime you ask him to be. I'm also here if you need someone to talk to. Much love and I am praying for you. ❤
That's not why you are on a Beta blocker. They are used in HCM patients to give the stiffer/thickened heart more time to fill improving blood flow. Also the less forceful contractions reduce accelerations in the blood that suck the mitral valve into the flow of blood out of the left ventricle. This also improves blood flow.
Really wish my doctors would listen and find out what’s wrong with my heart for real they said I have Cardiomyopathy, Afib, heart failure, & heart murmurs and as it explained in the video if I was to walk to my garage I’m very out of breath. I’m very irritated that saint peters hospital isn’t helping much and just giving me lasix for fluid build up yes they work but it’s not everything I need at this point. I feel like it’s the heart issues they explained maybe I gotta show my doctor this
My sister in law has been diagnosed with HOCM 2 months ago. She had the feet edema 45 days after her delivery. We have become shuttle cock between doctors. Hardly find two surgeons here at Lahore Pakistan who has an experience on this but they are still in a fix stating surgery might be life threatening. Here both ventricles are hypertrophic with fibrosis starting
I've HCM and had a septal myectomy performed by Dr Per Wierup in january 2017 in Lund Sweden. 1 of my 3 sons inherited the sickness. Joakim died only 31 years old of sudden cardiac arrest 2 month ago. Why him and not me. I'm devastated 😭
My son is sick in dcm disease when he is 1 years old.A attack is happened in those time.The doctors told that there is no treatment in the world for dcm patient.I went to india for my babies treatment. But my baby is better than before.His medicine is running now.I want to know my child is cure one day.The doctors don't told me that my child is fully cure those days.please suggest me.
Thank you, this is great information I believe I have that. I am 28 and don’t have any symptoms but my heart pumps blood at 35 percent and my doctor did confirm that this is what I have.
I would love to know if I can be treated, iv been in Atrial fibrillation and an MRI showed Hypertrophic cardiomyopathy. I used to play a high standard of football but always felt like I couldn't breathe and go on like the other guys, the doctor's linked asthma? I know it's ruining my life for sure I'm only 26
KingHados I have shortness of breath right now and I sometimes get dizzy but then that dizziness goes away and then it comes back sometimes and then goes away idk what it is it’s probably cause I’m always in bed or in my gaming chair because of this whole quarantine thing
What I don't understand is that this condition seems to be the major cause of death among athlets . why they don't get tested with the eco-cardiogram ? Shouldn't it be made mandatory?
I have hypotrophic cardiomyopathy aswell and I’m grateful that I’m alive I’m only 15 years old and I have this condition,I’m sorry for anyone who died to this
bemtheboi I’m doing ok for now and I do get chest pains and some of them caused me to go into hospital and they changed my medication a few times and every time they change my medication I have to stay in hospital for one or two days to see how I go on them and I’m on two different types of medication for it it’s called verapamil and disopyromide I’m on the highest dose for it and my heart condition stops me from what I want to do but I do the things I can
I'm going to talk to the cardiologist I already have a heart murmur. Congestive heart faluire and now my heart is enlarged. I do have a werid chest pain getting winded like someone poked me with a needle a a little extra tired after work and if I get up to fast sometimes lite headed
I have HCM and with an Autistic son. The daily challenge is unthinkable. I wish death come to me soon but then looking at my innocent sweetest boy and my dearest wife I gather all my strength to continue living. Life is wonderful yet so cruel.
Life is wonderful and life is a lesson, after every storm the sun always shines. Keep that in mind. Wishing you all the best for the future, make your son proud!
I suffer from hypertrophic cardiomyopathy and l will so anything in my power to be able to have this surgery. Does anybody know approximately the cost of this procedure?
Im not diagnosed but im hoping to get answers to why im suddenly dizzy lightheaded naouseous faint weak etc. All the simptoms line up to cardiomiopathy i Had a tilt table test Done im still waiting for the results if it ends up being nothing or pots syndrome i will go get a echocardiogram just in case as i do tend to have quite intense chest pain and pressure and when im doing harder physical activity Like running it feels Like There’s a elephant on my chest
*I was diagnosed with HCM in late 2017 and got implanted with S-ICD in Feb 2018. My heart muscle thickness is 33mm which is bigger than I have ever seen in any HCM folk I met but my cardiologist says there is no need of myectomy yet :/ Can someone tell me what can I do? 33mm is quite a big size.*
@@hamzamalik6075 Hey, I am going to turn 34 next month so I was 31 when I was diagnosed. I got my gene tested and yes, mine is genetic, runs in the family, unfortunately. Father, grandfather all gone young.
I' m from India ,i don't understand enough what u said in whole video but understand 1 thing that u have enough experience in cardiomyopathy surgery, actually my 3year old child suffering from cardiomyopathy and myocardiatis, any 'suggestion' that u want to give me
Jesus wants to heal you, he has been gradually healing me from my condition. He loves you and your child more than you know. I am praying for your child. I recommend you go to the doctor and see what they can do for your child aswell.
If my LV obstruction HCM causes sudden cardiac arrest, can I be resuscitated? I know resuscitation is rarely successful but is there evidence that resuscitation can restart my heart and save my life or is there no chance I will survive arrest?
There's a chance resuscitation can work. There are a few cases of young athletes surviving a HCM related SCA. Either way, don't worry about it too much. You're not very likely to suffer SCA unless you stress your heart too much.
@@Jesus-ji8dh Still, you probably should be exercising. Just get an assessment from your cardiologist on the severity of your HCM. Unless your HCM is severe, your cardiologist should help you devise an exercise plan that is gentle on your heart and won't push it too far.
yourZ Me too but had open heart surgery to correct this. Like the doctor in the video said, they do 2 - 3 septal myectomy surgeries a day. I had mine done at Mayo Clinic in MN (just closer to me). It’s a relatively simple procedure...just scary because it’s your heart. Best of luck‼️
My echo test results shows 12mm ivsd and 12mm lvpwd.. Is it normal??? Normal value shown in that result report is 06mm to 11mm...but some reports shows less than 13 is normal... Pls rply anyone.. Pls...
yeah but … if causation is via high, blood pressure and sedentary lifestyle. illicit drugs,medication,statins,beta blockers were never in the equation. You have a good chance of fixing it yourself? I have dropped 80 pounds (250 down to 170). all salt, sugar and processed meats have been eliminated from my diet … Cycling will be my tool of choice to bring my resting heart beat down to 55 or lower. Expand lung capacity (rowing) and you’ve created an athlete’s heart. You now have a chance
HCM is mostly inherited ie runs in families. Often septal predominant. It’s a filling problem. On the other hand, LVH can be of any cause like high blood pressure/ aortic stenosis, because of which left ventricle has to pump against high resistance. So it thickens
@@Chaddest_Maximus Correct. They'd be extremely likely to see it on echo. It's a good imaging technique. There is a small chance there is some hypertrophy that was not seen on the echo that would show up on a heart MRI, bc the MRI shows greater detail of certain tissues. My father was suggested to have HCM from echos and other heart testing but still needs an MRI to officially rule it out or not.
@@Chaddest_Maximus Did you have an EKG as well? There is research that suggests people with HCM who have a normal EKG are at a much lower risk of sudden death than the average HCM patient. So even if you end up having HCM, if there is a normal EKG, it should be milder.
@@Chaddest_Maximus That's interesting. I would get another EKG if it was yrs ago and a heart MRI as well. You need to get this ruled in or out by a professional.
@@Chaddest_Maximus I'm not trained in medicine, I only know some things about HCM through researching it online. The left atrium stuff, idk if that has anything to do with HCM or not. HCM usually causes left ventricular hypertrophy, I'm not sure if issues with the left atrium and ventricle are related or not or common in HCM. But I am not an expert.