What it is really like to live with HCM

Рет қаралды 16,661

Күн бұрын

Filmed in January 2017 this 12 minute video is perfect to explain to families of HCM patients what it is really like to live with HCM as a patient.

Пікірлер: 53

@tylerhenson1341 3 жыл бұрын

i’m 16 and was recently diagnosed with a severe case of it, i would say the hardest thing about it is when i see people my age playing sports or talk about working out after work or whatever, it makes me sad because i realize i will never be able to do those things

@larrymartins3299 3 жыл бұрын

I was also diagnosed last year June I have been living with it I have accepted my faith God will grant us long life

@1Aplease Жыл бұрын

Wow, young person🙏🏼. God Bless you and all your endeavors. I know the feeling. Be great in Knowledge and help others. GOD BLESS you.

@karenliszewski5952 2 жыл бұрын

Thank you for putting this out there. People don’t understand why I’m always out of breath. Now I don’t feel so alone.

@Wentzyyy 3 жыл бұрын

Spot on! im 22 and its hard because people see a healthy 22 year old on the outside, but deep inside my obstructed heart im struggling everyday, Chest pain most of all. its hard to explain to people whats going on inside. Im gonna recommend if they are interested enough to watch this video

@lancermitsubishi2179 2 жыл бұрын

My niece is now 30 and officially with HOCM. Very athletic etc Doctors used to make fun of her until a good cardiologist decided to test her heart. Make a lot of noise do not ever lose hope that some cardiologist will take you on and test you. BTW ALL my mom's side of the family has either HCM HOCM died with it or is living with it. I am waiting for a genetic test to see if i have it too. But considering the prevalence chances are it is there. The good thing is the condition is being addressed more correctly and methodically than it was over 50 years ago when my mom had her first valve surgery. Good luck.

@dianadv9102 2 жыл бұрын

This brought tears to my eyes because I never realized how much it affected me to be misunderstood on these points. I will certainly share this. Thank you.

@courtneycarroll9798 2 жыл бұрын

April 2019, my life changed. Am I still scared today? Oh ya. Do I let me my nerves and worries get the better of me? No. I spend everyday fighting it and being the best person I can be. I'm not an HCM girl. Im a girl with HCM. #HCMWarrior

@DonCounts 4 ай бұрын

Thank you so much for your comments. I am 59 years old and have been diagnosed with HCM for the past 10 years or so. I have little to no complications with mine however the cardiologist are saying I should. I guess we all live in fear that we could die any minute of the day or night. My friends and family don't understand that but I guess it is something that we all live with. It is as confusing to me as it is the people around me.

@shihtzuluvrtwo6386 6 жыл бұрын

Thank you! You nailed it!

@daytripper8731 6 ай бұрын

Thank you ❤

@carolbenjamin1210 Жыл бұрын

Thank you for this video which, for the first time, helps me feel a sense of community around my HCM condition. I trust you have had a successful heart transplant and are doing well!

@mljs9245 11 ай бұрын

Thank you for sharing this information. I appreciate the comment about a large meal impacting what we can do after. I thought it was just me. Hoping to learn more about living with this condition.

@fatimamiguel6309 6 ай бұрын

You nailed 👏🏻👏🏻👏🏻👏🏻👏🏻

@Anewceen 9 ай бұрын

Wow. This is me spot on. Mine has lead to afib and mild regurgitation... I hate this. It also makes you depressed. You want to live a full life and do things but your mental an body won't let you....

@paulinehowerton9591 5 жыл бұрын

Lisa, You nailed this!! I want to send it to everyone I know. I hope you are having a good day!! God bless you!!

@koaxander4505 2 жыл бұрын

i know it is kinda off topic but does anyone know of a good website to watch new movies online ?

@novaadrian4570 2 жыл бұрын

@Koa Xander Flixportal :D

@koaxander4505 2 жыл бұрын

@Nova Adrian Thanks, signed up and it seems to work :D I appreciate it !

@novaadrian4570 2 жыл бұрын

@Koa Xander Glad I could help :D

@dpaper7962 4 жыл бұрын

Well done! I was diagnosed with Peripartum Cardiomyopathy nd I'm Stage C now. Like you said some days I feel good and some days I don't with chest pain and shortness of breath smh. And I hate hearing "well maybe you should try and change your mind set and tell yourself you don't have it and eat better" smh

@vishnupriyams5610 4 жыл бұрын

❤️

@paulfasse8032 6 жыл бұрын

I had a myectomy in 2015 and although it relieved my severe obstruction I have never felt the same since. Still struggle with with breathlessness, chest pain and everyday living. My mind sometimes thinks otherwise and I will then pay the price dearly. In short it SUCKS! I am 57 year old male who is physically fit.

@thecotacompany9671 3 жыл бұрын

Paul I’m with you man. I’m blogging my process subscribe

@user-zb5bm1bp3k 6 ай бұрын

I. Have. Everything you said

@gautamdas6842 3 жыл бұрын

Waw... it's so inspiring with so kind words. I have been diagnosed with Apical HCM and now under medication. God Bless You.

@mumbaitoon Жыл бұрын

Where did u get surgery..what is your age

@BHill-ur9zd Жыл бұрын

I just found out this was the love of my life cause of death smh thanks for the input

@debralong1740 2 жыл бұрын

I have HOCM, as well as SubAortic Membrane. I underwent septal reduction and resection of the subaortic membrane, which has reduced symptoms quite a bit. What causes the chest pain though. It is frequent, but appears not dangerous. It can be very uncomfortable though.

@thatonetheotherone9169 5 жыл бұрын

That one dislike is what our genes think of us

@jobby750 6 жыл бұрын

well done Lisa its right i have hocm and all the symptoms u wont get disability for our disease in the UK where i live

@alaawilliamchamas4465 5 жыл бұрын

Brian Davies same here

@thecotacompany9671 3 жыл бұрын

Brian my vlog will be coming soon please subscribe

@CubitaLola Жыл бұрын

I am getting an echo done next week. Along with a holter monitor. I've been having these random episodes of palpitations, shortness of breath, near fainting. It's so scary but I don't know what it is or what sets it off.

@rabiajafri497 Жыл бұрын

Can I do skydiving and adrenaline rush sports as I have been diagnosed with HCM

@theunforgettablescars7902 5 ай бұрын

Hello, thank you so much for the information, but I would like to ask u one question, " can I take the job of a flight attendants as a person with hcm ?" ( I just recently found it just last 2weeks , all the tests are normal ECG, Holter, thread mill except echo ECG where it shows that I have hcm . I don't have any signs or symptoms nor anything ) Can u help me please??

@mikey5235 2 жыл бұрын

Hello! So I've have been having problems and I have a lot of symptoms of HCM and I don't really know if I do or don't have it and I'm actually pretty worried also for the fact that I'm turning 14 in Dec and is there any other way I can find out whether I have it or not? Besides seeing a doctor?? This will really help!

@shellyslioneyes Жыл бұрын

I suggest you ask your parents if it runs in family. If so, they will take you for a yearly sonogram as Wanda said below until you reach a certain age. HCM develops during puberty as other muscles thicken, etc. Our hearts should be flexible. Also, mine was discovered when the dr found out I had a heart murmur.

@vijaykhedkar4465 6 жыл бұрын

Waw well said.I have hcm,

@saptrainer2640 6 жыл бұрын

Vijay Khedkar I also have

@saptrainer2640 6 жыл бұрын

What medication do you have

@vishnupriyams5610 4 жыл бұрын

How are y managing it?

@hotlatino7220 3 жыл бұрын

Excercise and diet does work. It improves your heart health. When you walk it gets the blood moving expanding the blood vessels and heart works less. That help the heart improve ejection fraction which the higher your ejection fraction number is. The stronger you will feel. Sit around all day and eat bad and see what happens. Just saying..

@meggy8868 3 жыл бұрын

@@hotlatino7220 High EF is not good, also what do you mean by high. A good number is 65, a bad number is 80 or 88.

@avinashbhoir4433 3 жыл бұрын

Is there any improvement in HCM treatment in 2020 end ?

@user-zb5bm1bp3k 6 ай бұрын

How can I. Communicate

@thecotacompany9671 3 жыл бұрын

Hi lisa I would love for your help with my vlog it’s informative on hcm n the progression of the disease

@mohayare8021 Жыл бұрын

Only who have this deases can feel what he is really. I m 28 years old and i m refugee in germny i have this deseas last 5 years Every day i feel sorry But i cant change any thing Right now i m feeling chest pain . But i love still god. If any one can tell me how can i deal with this condation please i need your help. Thanks

@nikosdimou7291 Жыл бұрын

You need to see a cardiologist who knows about hcm, have ecg, echo cardiography, and a cardiologist who is a specialist in hcm to evaluate your condition, there are treatments, don't lose faith! Contact hospitals and organizations for the rights of refugees and social services to find some support and guidance, tell them about your situation if you are in Germany. I wish you all the best!

@nikosdimou7291 Жыл бұрын

First thing you need is to be evaluated by a cardiologist who knows well about Hcm, search in Germany for hcm departments in hospitals, if you are a refugee contact social services and explain to them your situation...