On-x valve replacement

[Robomom]

I am 10 months out from grafting and valve replacement. I need to connect with some one like me or quite frankly Im going to destroy my surgery by my own hands.
Since surgery I cannot handle the incessant noisy bang of my heart it quite literally knocks me off my feet. I am so depressed and PTSD has settled in.
Medication, therapy or brain retrain has not worked. This surgery has wrecked my life..Ive read up on "Pumphead" and have become a firm believer its real. That is a seperate issue.
Anyone middle age Bicuspid Onx replacement? ? I feel crazy..like Poe's Tell Tale Heart...but I didnt kill anyone!!! HELP!!

 

[almost_hectic]

Sorry to hear you're having such a difficult time. I got my OnX back in August. Was surprised how easy it was to hear initially but since healing over the last few months it has gotten very very quiet as I have healed and my heart has strengthened. Most of the time I can't even hear it. When I do it doesn't bother me, I've grown so used to it. My guess might be that if your heart "bangs" like you describe, you might have something else that's going on. Is your blood pressure high? Do you have an arrhythmia? Did you complete a cardiac rehab program to regain your strength after surgery?

 

[Zoltania]

On the Radiolab podcast, a young woman who had a valve-sparing aortic root replacement vividly describes similar issues with a pounding heart that is clearly audible to those around her:

http://www.radiolab.org/story/heartbeat/

 

[Robomom]

Im glad to hear an on-x isnt making your life difficult. .Im going to listen to the referenced girl. I too know people hear it...

 

[Robomom]

Thank you I listened and am going to try n message the woman. Her experience is mine..Im not alone and Im not crazy

 

[AZ Don]

I had a valve sparing aneurysm repair and now whenever I breath deeply I feel my heart pounding. Early on it was enough that it would actually hurt a little. I can see how big a problem it would be for someone that had something like this all the time. I've talked to multiple Dr's and they really don't know what causes it. Could be related to scar tissue or the graft transferring the heart beat differently. There have been a couple mentions of this previously in the forum. Seems pretty rare beyond the first few months. I'm 2.5 years and no change.

 

[Paleowoman]

I hope you can get some help Robomom - what you're experiencing sounds absolutley awful. Depression and PTSD are something that can happen after valve surgery especially when things don't go as planned or things don't turn out as they should. Keep on at your cardiologist too to find out the cause of the bang of your heart - don't be fobbed off by the medics who are happy with what they've done when you are clearly suffering.

 

[pellicle]

Hi

I read this and your reply above

I am 10 months out from grafting and valve replacement. I need to connect with some one like me or quite frankly Im going to destroy my surgery by my own hands.
Since surgery I cannot handle th...I feel crazy..like Poe's Tell Tale Heart...but I didnt kill anyone!!! HELP!!

I'm not sure if my reply will be useful (and I hesitate to reply because I'm perhaps quite different and think differently).

you are not crazy and the valves are audible. More significantly than audible they are "feelable" ... there is a pulse beat that you can feel. My first days (still in the ward, but out of ICU) where I could sit cross legged on the bed I noted that I "rocked" slightly with each beat.

This is my 3rd OHS, and my 2nd valve. My first surgery was a repair, my 2nd a replace with a homograft and this is an ATS (later rebranded to Medtronics). It is most definitely different this time. I can't be sure how much is the valve (as mechanical valves snap shut with more authority than tissue) and how much is caused by the tube replacing the artery (as I also had an aneurysm repair).

In the first months after surgery I was quite certainly depressed and all manner of things got me down (frankly I spoke of feeling better off dead, although my wife did not agree with that one little bit).

I happened to be most concerned with my blurry vision and the change from not needing to take pills every day to (of course) needing to. I felt suddenly old, weak and useless.

I suspect that its not the items we focus on, but that we focus on something as the "cause" of our anger / frustration.

For sure I now have a different feel, but I have a *LONG* personal history of accepting changes and doing my best to deal with them.

The only times I notice my heart beat now are when doing nothing (like watching TV) or sitting at my desk (I am a software guy) or on going to sleep.

My view is that I can let things get to me, or I can take my mind firmly in hand and make the best of the sitation and tell my mind who's boss and to not focus on it. To me to do anything else would lead me down a path of madness. So I try my best to accept the change and to live with the "new" things.

While ripping your valve out (and I think I have heard of people getting surgery to change a valve) may seem tempting, I think that if you follow that through logically it would lead to much worse positions. For instance in my surgery to get this valve I got an infection, which I am on (perhaps for the rest of my life) antibiotics to keep from regrowing.

Eventually there is a limit where reoperations lead to very poor outcomes. The first redo is not normally too difficult these days, the second redo is challenging and the 3rd redo would be risky.

If you can at all I'd suggest you just talk the shitter out of this and discuss it with friends and even us till you're sick of the topic. Give it time and try to get yourself across accepting it. I know (from my own experience) that is an ongoing task and I still find myself having thoughts of "what if ..." However they serve nothing helpful and so I try my best to accept things as they are.

I also know that if I have another surgery in future that the possible presence of the bacteria in my chest from this operation will be spread throughout my chest in the next surgery, making it even more difficult.

Would I rather be dead? Well I've thought about that a lot ...

Anyway, not sure if I've helped or not, but my thoughts go like this:

Best Wishes

 

[cldlhd]

I don't think the graft has a lot to do with it as I have a graft as of 9 months ago and at this point I think my heartbeats intensity is the same as before. It was louder and I felt It more early on but its back to normal. It feels different , it's crisper on closing, but I don't think it's more intense or louder. The only difference I really feel is when I take a deep breath I usually feel a pain in the left side of my chest, on the lower side of the pectoral.

 

[Seaton]

Hi Robomom

Sorry to hear about your distress.

A few weeks back I was reading an article by defective heart girl who seems to have gone through a similar experience to you:

Heart Wars Trilogy Part 1: The Bionic Heartbeat

Part 2 is here.

And a Trilogy interlude-update (Part 3 not published yet) is here.

I've also ordered this book from the States (not arrived yet):

Coping with Heart Surgery and Bypassing Depression: A Family's Guide to the Medical, Emotional and Practical Issues

I've no idea what it's like but I heard it mentioned somewhere on a thread here and thought I'd have a look.

Best to you and hope the links are of use.

 

[Paleowoman]

I've also ordered this book from the States (not arrived yet):

Coping with Heart Surgery and Bypassing Depression: A Family's Guide to the Medical, Emotional and Practical Issues

I've no idea what it's like but I heard it mentioned somewhere on a thread here and thought I'd have a look.

I have that book, I got it and read it two years before AVR so I would be well prepared. OH too as it is for your OH too. It is very good, BUT it is obvious that when things go "wrong" it is a totally different experience. Thankfully I do not have an ongoing thing going "wrong" like Robomom, but I did have mistakes made in my care post surgically which were preventable, and I still have problems with my surgeon not correcting the Operation Note, and this causes stress. Stress and depression can happen post AVR even if things go perfectly - if they don't then stress and depression are far more likely. We on this forum all prepare ourselves well but that doesn't mean things will necessarily go well. The book is so useful in either event as it helps one realise that anger and PTSD are not abnormal. Still, if things go "wrong" then the medics have to be involved, they can't just say surgery went well just because "technically" it went well !

 

[Dodger Fan]

Hi Robomom

Sorry to hear about your distress.

A few weeks back I was reading an article by defective heart girl who seems to have gone through a similar experience to you:

Heart Wars Trilogy Part 1: The Bionic Heartbeat

Part 2 is here.

And a Trilogy interlude-update (Part 3 not published yet) is here.

I've also ordered this book from the States (not arrived yet):

Coping with Heart Surgery and Bypassing Depression: A Family's Guide to the Medical, Emotional and Practical Issues

I've no idea what it's like but I heard it mentioned somewhere on a thread here and thought I'd have a look.

Best to you and hope the links are of use.

Defective Heart Girl is Summer Ash, the same girl in the radiolab podcast. It was a good listen.

 

[Seaton]

Aha.

Thanks for pointing that out, Dodger Fan. I hadn't made the connection.

Great to know Defective Heart Girl's one and the same woman. I was thoroughly absorbed by that Radiolab broadcast. She seems such an interesting person. And yes, her talk was fab.

Cheers for the pointer.

 

[Bonbet]

Thanks for the radio lab link, love that show. I am sitting here reading and thinking: I can hear my heart beat pretty much anytime if I tune in. It is louder during certain activities like lying down . I've also experienced the feeling that it is beating with enough to force to move my body if I am lying on my side or if I am sitting at a table holding the newspaper, then I can see the newspaper move with my heart beats. Funny thing is that I haven't had surgery yet, I am still in the waiting room.
This all makes me wonder what it will be like post-op. I have pretty much learned to live with the "experience" frankly because I am so glad it is beating at all!
I hear it or feel it and I am like, YES there it is my devoted friend - we're still here! But I wonder has anyone had both pre- and post- op loud beating/thumping experiences and are they similar or vastly different? Bonbet

 

[Superman]

I'm of the opinion (since I have no research to back it up outside of anecdotal) that the graft amplifies the volume until tissue starts to form around it. I've had a St. Jude mechanical valve for 25 years. It was audible, but not that loud. Granted, the noise and "thumping" tapered off the further away from the surgery I got. My second replacement and receipt of my graft was 6 years ago. Maybe it is because it is fresher in my mind, but I felt, and still feel, like the new valve is louder with a beat that I can feel more firmly. Rightly or wrongly, I attribute this to the graft not deadening the noise as much as natural tissue.

Either way - no one but you can know how you feel and respond to the situation. I've been through exactly what your going through physically, but didn't respond the same way mentally. There's a lot of background to that. I knew my whole life that surgery was coming, I had my first at a younger age, and I've been ticking for 25 years. I really don't know how I would respond if I'd spent over 40 years with a "normal" heartbeat and then started ticking.

It sounds like you're trying different things to cope, which is good. Sit quiet with it. Meditate with it. Just listen to and embrace the sound. It's keeping you alive. Don't fight the sound. Eventually you'll go Stockholm Syndrome (you have to learn to love your captors). It may even become a fun conversation starter if you are inclined to be open about private medical situations. "You hear that? Ticking in my head for 25 years! Now do you understand why I'm a little weird and have a twisted sense of humor?"

Or you could go George Costanza and just yell, "SERENITY NOW!!!" when it's really stressing you out.

 

[Robomom]

Id like to thank all for replies.Those who know the feeling of getting moved by the heartbeat..sometimes when I walk I feel Im going to get knocked of my feet..Exercising is cumbersome and Weird but Sex is a No No..too much noise. .a now single woman feeling ugly by my scar and embarassed by my heart.
The scar is a battlewound that you won..great but reallistically Not the case.. I have heard the podcast and she is alot like me unfortunately I have a wicked depression to go along with it. My Dr sees me every week so I dont do anything stupid. Awesome guy wouldn't be here if it weren't for him. I have a new therapist I dont like!!! Crunchy Granola chick..its too much..inside she makes me laugh...I dont believe in God especially not now. So I battle daily and that will be the way it is.Good luck to all..

 

[pellicle]

Hi

Id like to thank all for replies.Those who know the feeling of getting moved by the heartbeat..sometimes when I walk I feel Im going to get knocked of my feet..Exercising is cumbersome and Weird but Sex is a No No..too much noise. .a now single woman feeling ugly by my scar and embarassed by my heart...

exersizing will become normal but yes, the heart beat sound is noticable. I think what this means is that you need to reevaluate your life choices. I was initially put off when my wife identified that she could tell I was getting excited by my increased heartbeat ... well that blew the mood.

This may seem left field but my view throughout my life is that so many in society focus on the meaningless and on the exterior. I believe that while there are new things to learn, all that has really happened is that you can not as easilly pretend to not be a bundle of flesh with a beating heart.

It will take time, but you will if you wish heal. You will heal physically without too much intervention, but you will heal emotionally better and sooner with viewpoint changes.

It is perhaps a cliche to say that when you feel better about yourself others will feel better about you.

So all that you need to do is focus on feeling better about yourself. Sex is not a no no, but how and with who and what matters will change.

I dropped my faith in the views put forward by the masses on God when (not long after my 2011 surgery while nearly done with recovery) my wife died of a brain tumor. As I grappled to reestablish a grip on something it soon became clear to me that the whole nonsense of God as taught was such utter rubbish as to be unpalatable. It occured to me that it was probably so because few had been through the sorts of things that Job had been through.

I never became fully atheist but I have come back to an Agnostic postion where I feel that God exists, but there is no connection between this universe and the God who created it.

Your grief is perhaps similar to mine, so perhaps there is some value in my writings on my blog about this topic

http://cjeastwd.blogspot.com/search/label/grief

if you ever wish to chat (I live in a different time zone) feel free to email me (pellicle at hotmail) or have someone how understands something of your issues and may have had similar experiences listen and provide thoughts.

Best Wishes

 

[MrsBray]

I'm 44 now, and have had my OnX for almost 2 years. Honest & True, I bought a new CAR because the windshield angle in the Ford reflected the ts ts ts right back at me, no matter how loud the music was turned up.

You're not crazy, and you sure as heck aren't alone.

-Meredith