I don’t know what to do anymore

[SadAnonymous]

Unlike everyone it seems, I’m 17 with a mechanical heart valve, I had it replaced last year and I experienced no symptoms beforehand but whatever.
The tick has ruined my life, I’m now extremely depressed because of it. Idk if I got really unlucky and I got a super loud valve, but this valve is extremely loud. I don’t want to wear T shirts anymore in the summer, in fact now I hate summer and wish it was always winter.
I don’t want to do my exams in the summer in the hall, because I will be emitting such an embarrassing noise I have no control over, and there is no escape from this hell I now find myself in.

idk what I can do anymore, I never expected this and it has completely ruined my life in every aspect. I don’t even like sitting in cars if the engine is off unless my door is open because the valve is that loud.

 

[pellicle]

idk what I can do anymore, I never expected this and it has completely ruined my life in every aspect.

well let me say that its only your attitude which is the issue here, many many people suffer much greater handicaps (even as simple as being born with a birthmark on their face) and managed to get on with life.

I was diagnosed at 5 and had my first surgery at 10, that caused some issues in my younger life but as Jack Torrence said:

so that gives you a few years to come to grips with it ;-)

some advice: as a lad I despised religion (went to a catholic school) and discovered Stoicism. Those guys are all about building resilience not dependence (on the religion or god)
Some examples you could ponder.

in this I'd say what you have to do is clear: pass your exams

Lastly I'd say this comedic cartoon sums up modern people:

to me the true problem is you don't have enough actual threats to your life and limb and being in basically a safe place fall prey to anxiety.

I recommend if you can't get a handle on it to see a psychologist.

be the one of these people:

You only have one life, so enjoy it

Best Wishes

 

[Superman]

It saddens me to read this. What would you like to hear from someone who received a mechanical valve at 17 (me) and has been ticking away for the past 32 years?

Unfortunately I can’t relate to your feelings because i didn’t share them. But I can’t dismiss them because they are yours and you are entitled to them.

I found both my scar and ticking to be interesting conversation pieces (far better than the weather). I recall being asked during exams if I was wearing a really loud watch. I found that funny and proudly shared my story (after class). My scars? “You should see the other guy!” And back then, I was alone. Nobody in my high school had heart surgery or a mechanical valve. I had to go in for lab draws (no home testing). I didn’t know any adults in my situation either. There was no internet, so no online community to connect with. It was just different. But my friends were supportive and came up to the hospital to visit. People from my church gave me rides to lab when my parents had to work. I got by and felt supported.

I went on to college, got married, we’ve been married over 22 years now and have five awesome kids. Just normal (even charmed) life since my first surgery in 1990.

I can say the valve does get quieter over time. Not silent (I couldn’t be the tooth fairy for my kids, too loud), but quieter. The scars do fade over time as well, but they don’t go away.

 

[Warrick]

Two heartening life stories there from Superman and Pel. Beautiful.

Mate its not easy, I’m still coming to terms with the ticking, even after 6 yrs, I’ve found just lately when deer hunting mates are hearing things I can’t cause of the ticking
Still shot 2 nice stags in the weekend.

But misery loves company and I found early on in this journey knowing you are not the only one in the world thats ticking helped immensly.
Sleeping at first was a struggle and still is time to time but these says I wear a grind guard and a CPAP machine so tickings the least of my worries haha.
I find actually listening to the valve when trying to sleep makes me sleep rather than a mental fight not to hear it.

I think other people will hear it less than you think and then if they do who gives a toss really. I find the only place I dont hear my valve is in the shower with the water noise.
Just know you are not alone in this.

As Pellicle suggested perhaps see a mental health professional, I did after my AVR. Theres no shame in seeking help.
.

 

[Al3x]

I'm sorry to hear your story. I can't directly relate to being in your situation as a teenager as I'm about twice your age.

It may sound trite, but you have to play with the cards you have been dealt in life, and for all of us on this forum that includes a mixture of medication, scars and other annoyances. The ticking occasionally bothers me but my overwhelming attitude is that I'm incredibly grateful to still be alive and to have a chance to watch my kids grow up.

Your scar will fade over time. I'm about 10 months out and wear t-shirts / running vests and go down the local pool etc. If other people have a problem with how the scar looks, that's their issue, not mine. I think it compliments my dadbod perfectly! I appreciate it's easier for me to say this as I'm a bit older and don't have the same social pressures as I did as a teenager. If you're surrounded by people who obsess over looks and aesthetics, the chances are they probably suck.

All I can suggest is to spend time with friends doing the things you love, and to remember what a privilege it is to be alive.

 

[Cmf2p]

I know it sucks, I was 12 when I woke up in the hosiptal and learned I just had OHS and had a new Aortic mechanical valve. All I remember was being sick and my dad taking me to the ER. Again at 15 I had to get it replaced and remember being shocked and scared when I heard the news. It has now been 22 years since my last surgery and I am still making it. I am not gonna lie and say it has been easy. I have my bouts of health anxiety or ptsd from my experience but a huge majority of my life has been great. Just stay in shape, take your medicine and be aware and I guarantee that the ticking will become normal and eventually it wont bother you anymore. Like others have said, dont be afraid to talk to others about your worries, it has helped me during my difficult times.

 

[cldlhd]

Unlike everyone it seems, I’m 17 with a mechanical heart valve, I had it replaced last year and I experienced no symptoms beforehand but whatever.
The tick has ruined my life, I’m now extremely depressed because of it. Idk if I got really unlucky and I got a super loud valve, but this valve is extremely loud. I don’t want to wear T shirts anymore in the summer, in fact now I hate summer and wish it was always winter.
I don’t want to do my exams in the summer in the hall, because I will be emitting such an embarrassing noise I have no control over, and there is no escape from this hell I now find myself in.

idk what I can do anymore, I never expected this and it has completely ruined my life in every aspect. I don’t even like sitting in cars if the engine is off unless my door is open because the valve is that loud.

I don't have a mechanical valve so I can't give you any insight on the situation. Other than I wonder if this is something where you can hear it, internally, but others can't.

 

[Chuck C]

Sorry to hear that it has been so hard for you. People do report that it gets quieter over time and I hope that happens for you. Also, as you get older, hopefully you will be able to let go of your anxiety over other people hearing it. They probably can’t hear it as often as you think and you are in control over how you react to them hearing it if they do hear it. It might not be easy to get to that point and you might need professional help in getting there but know that you have control over how you react to the situation. We don’t have control over the hand that we were dealt, but we do have control over how we respond to it.

I am aware that things like this can be more troubling when you are young. I had thinning hair when I was 20 and it was extremely upsetting to me at the time. It bothered me for years and then one day I decided to take the initiative and hurry things along- shaved it all off. I’ve embraced my shaved head and would not have it any other way.

It might seem loud to you, but it might not be nearly as loud to others as you might think. In the past 12 months, besides doctors, 3 other people have heard my valve. My wife when she put her head on my chest. It did not bother her and it did not bother me that she could hear it. I have returned to jiu jitsu for the past 10 weeks and two of my training partners have commented about the ticking. In both cases their heads were on my chest during the grappling. The most recent one was this past Monday, my training partner said: “Dude, it sounds like you’re ticking.” I laughed and took it as an opportunity to explain my valve surgery to him. I could have been embarrassed about it and could have decided that I would stop training all together. But, I just don’t see any reason to be ashamed or embarrassed about it.

Anyway, there is no shame in having had the surgery and having a prosthetic valve. I hope that others sharing their experiences can help you feel as though you are not alone and I hope that you get the help that you need to see the situation in the proper context, with no shame or embarrassment.

 

[TomM]

I found it very difficult to tell people about my heart condition and OHS when I was a teenager. At that age, I could get by without my condition being noticable. If you can share with people around you the details of your heart condition you might find some good people to share your life journey with who will have a better understanding of where you're coming from. From my experience you'll find plenty of people who won't care about you and your health. I think if you embrace your heart condition it may be beneficial for you. I hope your spirits pick up.

 

[tom in MO]

You are depressed. It could be more than the valve bothering you but that's what you are focusing on. Find someone to talk to about it, school counselor, therapist, clergy, youth-minister, trusted-listening friend or adult. If it helps, the ticking is better than death. Flip it around, you are a cyborg bet ya nobody else is. When a girl/boy gets close they can hear your life.

 

[Superman]

I found it very difficult to tell people about my heart condition and OHS when I was a teenager. At that age, I could get by without my condition being noticable.

I had zero choice but to have everyone know. My parents and Dr’s kept me out of gym class. My small school had me sit on the sidelines while the other kids did sports. I wasn’t allowed any team sports growing up either. I was always the kid with the heart defect. Finally having surgery to fix it was a relief.

When you’re over 6’ tall at 14, you also have to keep reminding the basketball coach that you’re not allowed to play. I didn’t look sickly so people were kind of skeptical at times. I even recall being told, “You’re lucky, you don’t have to do gym class.” Probably the thing I hated most.

 

[djman]

I'm not 17. But I did have the same valve replaced by a mechanical. If someone asked about a ticking noise, I would say "I had surgery and part of my heart was replaced". The person may ask followup questions. Or they may not.

 

[pellicle]

I had zero choice but to have everyone know. My parents and Dr’s kept me out of gym class. My small school had me sit on the sidelines while the other kids did sports. I wasn’t allowed any team sports growing up either. I was always the kid with the heart defect. ...

Yep, that was the difficulties I faced too.

I always cringed when someone said "..but you've got a heart condition"

 

[Superman]

Yep, that was the difficulties I faced too.

I always cringed when someone said "..but you've got a heart condition"

My first roller coaster ride. I was in sixth grade at Canada’s Wonderland amusement park. You know the rides with, “If you have a heart condition, please be warned!” Class trip. No parents with me. So I went for it. A stand up coaster that went upside down.

The thing broke down on the climb up the big hill for like 40 minutes! HOLY CRAP!! God knew I wasn’t supposed to be on this thing and broke the whole thing down! I was freaking out on that hill!

It eventually started back up. I did the ride and lived to tell about it. But man. That break down was worse for my heart than the ride was.

 

[John-3919]

Sorry to hear about your situation. I know it can be hard if you are feeling singled out or isolated because of this new valve in your body. You're 17 so I imagine you're still in high school which can be a cruel time, especially when you have something that makes you stand out which no one else can relate too.

I was 23 when I had my 1st heart surgery. It was the week after I graduated college, and like you, I had little to no symptoms beforehand. They attempted to repair my aortic valve with some success, but a few years later I found myself staring down a 2nd surgery. This last time I was outfitted with mechanical valve. It's been over two years, and although it has quieted down significantly, I can still hear it anytime I stop and listen. In the first few months after my surgery I could point my chest at someone and they could hear the ticking across the room. It has gotten much better, but without fail every now and again someone asks if I'm wearing a mechanical watch or if anyone else can hear a ticking sound.

If you go off to college or university I can say that most people will likely find it fascinating that you have a mechanical heart valve. I've never received anything other than positive experiences from other people who find out about it. Granted, I was a bit older than you, but I would bet that even if the clicking doesn't fully subside, your relation to it and its impact on others will get better.

I was happy I didn't need a mechanical valve after I had my 1st surgery, but once the valve repair started to fail and I felt my physical health plummeting, I wished more than anything that I had gotten the mechanical valve my first time around. I was ancient compared to you when my 1st repair started to fail, I was 28, but to be surrounded by peers who are in the peak shape of their lives and you get lightheaded after walking up a hill, a clicking sound starts to seem really appealing.

Unfortunately, none of us asked to be put in the situation that requires us to need new heart valves, and I sympathize with your struggle. I hope the valve noise subsides, and hopefully instead of the valve being a burden that makes you feel ostracized, it'll become something you can proudly say you overcame at a young age and has made you a better person for it. (And I mean come on, overcame open heart surgery has to sound good on a college application!)

Best,

 

[pellicle]

My first roller coaster ride. I was in sixth grade at Canada’s Wonderland amusement park ...It eventually started back up. I did the ride and lived to tell about it. But man. That break down was worse for my heart than the ride was.

LOL ...

 

[pellicle]

@SadAnonymous it also occurs to me that I should mention that in the years after my OHS at 10 I became a changed person, I trended more into science (not least because I was locked in a library while everyone was out playing sports) but because I wanted to understand my condition. I wanted to find my own limits and push those.

Consequentially by the time I started at University (degree in Biochemistry / Microbiology) I was already a fitter young man, cycled (often more than dialy) 10km to Uni (from where I was living) and was in many ways better for my "condition" than if I had not had it.

Now I'm probably at least as old as your father.

What I can say to you from this "advanced position" is that perspective of time is not yet something you "grok" not least because you can't say you remember with great clarity something that happened 20 years ago. You also haven't had to do the day in and day out over the intervening 20 years from that event.

This shapes you in ways you will eventually come to see.

I can say that I recall with great clarity something that occured to me 10 years ago which was so horrible (and yet strangely so "natural") that I seriously pondered killing myself over (a glimpse into the window of that room). Ten years later I am still here and remember all the steps that I took to get me here.

Am I better now? Well I have come to see that there is no such thing as better, only to be able to continue on and see the things in life as being all of the following: fun, dreary, happy, sad, awe inspiring and depressing.

Living in fullness of human experience is something that is a gift bestowed upon us at birth - open the package and suck up everything it has in it, for its your true inheritance.

In my life I've moved from Australia and lived and worked in many parts of the globe. I could not have done that without my degrees (yes, more than one) nor the diligence to get them.

So, now you know what it is you should do - live life and live it with whatever cards were dealt in the last hand.

Best Wishes

 

[Wiles Darkwinter]

Hey mate, sorry to hear about how you’re feeling.

As you can see from all the responses to your post you are definitely not alone, though it may feel like it right now.

I have no advice on this issue other than to offer my own story as well. As a man, at my physical peak at 29 years of age and in the army, my professional and personal self image was built on my ability to do physical things In a military context. My diagnosis and surgery left me a mere shadow of the man I once was. I felt emasculated, weak etc. All these feelings were not due to my heart surgery. They were due to the fact that I had no intrinsic self worth outside of the army. My surgery forced me to have a good hard look at myself. Who am I? What’s my purpose? These might seem like fairly cosmic questions for someone at the age of 17, but everyone I know who I respect considers themselves lightly, but the universe deeply. I’m 31 this year, and I never imagined I’d be perusing the goals I have now. ImHappier than I’ve ever been.

You can’t just snap out of how you’re feeling. It will take time, but I can’t wait to hear about the man you turn out to be because of this ****-ing ticking!
Good luck!

And nice to read everyone’s personal stories this morning. Threads like this one are what it’s all about!

 

[Gator Chief]

Wow, valve replacement at 17! So much to deal with at this time of your life. Yesterday was the 10th anniversary of my aortic valve replacement. I was diagnosed with bicuspid aortic valve and mild stenosis in 1987. I was followed by cardiologists for 25 years before I the criteria for valve replacement. In some respects it would have been ok to have all the decisions made for me in the OR instead of waiting and wondering for 25 years. At 62 it was a very difficult choice for me to make as my surgeon and cardiologist said I could choose either one at that age. Thankfully I found this website about 7 months before the operation and got the technical data and personal experiences to make my choice.
My experience is that the valve will quiet down, ( mine did at 2 years ) my scar got exponentially better at 5 years, and Coumadin has not slowed me down in almost every one of my activities. That’s between the ages of 62 and 72. ( still very active ) Iwill assume that between the ages of 17 and 27 you will have much better results in the healing. If you self test the bleeding and clotting factors will not impact your life half as much as it did for people in the past. Your decision has been made and the operation is over, as everyone here will tell you, second guessing and what if they would have put in the tissue valve ,will only cause undo stress in your life. My surgeon told me to “ go out and live your life” at my last appointment with him. I’ve done that and look forward to the next 10 years. Good luck to you, you’re on the right website!

 

[Dana]

Loud? You should try two mechanical valves beating simultaneously. My wife can hear it (sometimes from across the dinner table) but it does change. There are times when it is not that loud. Not sure why but changing body position changes the sound and having a full stomach changes it. I thought it would bother me too, but I consciensously decided not to think that way but to look at it this way: the valves are necessary to keep me alive, so each tick is reassuring because it shows my heart is busy doing what it's supposed to do: pumping oxygenated blood to the rest of my body and the alternative is that it stops. And if it stops, I stop too. So think of it as your friend and that it's keeping you going, so that you have the rest of your life to look forward to. Some people don't. We are all unique people and have unique personalities, thoughts and anxieties. So that means we all are not the same and should not feel pressure to conform to some idea of "normal". Nobody's normal. But as a teenager you might feel differently, I know I did. Sure you want to be accepted and not be different because some peolple make fun of "different". Don't let that bother you. You are you and there's nobody else like you, so don't try to be like anyone else. Be you and love yourself as you are. Your parents do; ask them.