Feeling of my own heart driving me MAD!

[Shawn]

I would like to hear from other people who have had AVR with a St. Jude valve and conduit who are now or had the constant feeling of your heart beating against your own sternum, neck and collar bone while in any physical position? The few posts that I have found on this site in reference to this is very disturbing? I'm starting my 7th week post-reop and I'm going MAD from this! Thanks

 

[Curtsmum]

Hi Shawn, welcome to the forum. Sorry i can't answer your questions and really sorry for what you are going threw. Hope somebody can give you some answers, all the best.

 

[Ross]

Shawn you need to get together with Seth in this thread below:

http://www.valvereplacement.com/forums/showthread.php?t=29590

 

[Bina]

Shawn, I also have a very lively valve and I am sensitive to it--- BIG time.
My doc said that I could stop taking my BB, (Metoprolol), but I stay on it because it really helps reduce the pounding.
It also took a long time to be controllable......Best wishes.
Breathe deep and slow. Relax.

 

[terodac]

I hear you!

I hear you!

Two years later and I am still upset with mine somedays! It drives me crazy sometimes, a pillow really helps if you put it up against your chest. Also, if you have a Ipod that can help! My doctor told me to think of it as my life, easier said than done I said! I think at night and when I wake now or the times I notice it the most. I also have a St Jude, I asked him why he put the loudest one in me, he told me there was a lot of them a lot louder than mine. Good Luck, it does get better God Bless!

 

[blkrino]

Shawn, I don't know which aortic artificial valve I have installed since last June but it used to be really loud, pounding against my chest most of time. Now when I sit here and input I cannot hear or feel it at all. If I do a little exercise it starts getting noisier again. So it seems it is partially me getting used to it. Overall the noise has decreased about 40 to 50 percent. Also when it does crank up I tend to pay less attention to it and that is coming from a guy who used to have some great anxiety attacks worrying about his heart palpitations.
Hope yours quiets down a bit
Reinhard

 

[Marguerite53]

Hi Shawn. Welcome to our wonderful community.

You say you are 7 weeks post re-op. So this is your second OHS?

I have tissue, so can't compare the replacement valves, and no conduit, but I do know that at about 2 months out, my heart started bouncing around inside my chest like crazy!! Could it be that your medications aren't helping your new heart adjust well enough? I required beta blockers since all that pounding (and I swear, it was like in the cartoons with the heart bouncing out of my chest on a spring or something!! ) was due to PVC's.. premature ventricular contractions. There are lots of benign kinds of disturbances like these that might perhaps be causing you your discomfort.

Time to give the cardio a call!

Keep us posted.

Best wishes

Marguerite

 

[tex]

Hi,
Im now 4 months post op had an AVR fitted and mine is just the same, pounding and ticking away, you do get used to it kind of lol all i know is mine has fixed my Valve problem and if this is the price i pay then i can live with it.
It will get better
Jane

 

[netmiff]

Sorry it's long, but hope it helps. Talk with your cardio and/or PCP and find out what is going on.

In ICU, I could hear a clock, one of this Big Ben things, on a metal tray out of my sight line. I could hear it for the three days I was there. Then I was moved to the ste-down unit, and lo and behold, they seemed to have brought the darn thing with me - then I realized it was my vavle !! 18+ months later, I don't hear it much, only when standing in front of a mirror, or some such. I don't think it has got any quieter, I just think I don't hear it any more. In fact, DH seems to hear it more than I do.

Having said that, I also had the feeling that my heart was beating so energetically that it was going to leap out my chest, I felt it a lot in the base of my throat. Had high BP, really high, (which I didn't have before surgery). I am still in a BP med and a beta-blocker, though weaning slowly off the beta blocker.

It was explained to me that my heart had become extra muscly (I call it my Popeye heart) to pump enough blood through the tiny aortic opening I had pre-surgery, and post-surgery it still kept up its athletic beats as it took a while for it to adjust, and that I could be on BP and/or beta-blockers for a while, some said up to 2 years, some said 5 years, some have even suggested forever. I don't like being on meds, but if that is the price to pay for still being on this side of the grass, I will take it!

 

[lilteach3234]

I have a St. Jude and the conduit.....14 days post op.

The only time I really hear mine is at bedtime and flat on my back. I really don't notice it.....nor does my family. My 19 year old college student was home this past week and she loved laying in the recliner with her head on my chest so she could listen to it.

I have to admit I loved her being in my lap because I miss my little Texas Longhorn.....cried for an hour when she left to go back to school last night.

I think mine is a size 23. I may be wrong as I haven't even asked alot of questions because I'm too wiped out.

 

[gustaf]

As Ross mentioned, Seth has a thread going on for the same subject: http://www.valvereplacement.com/foru...ad.php?t=29590

I have myself a 200W subwoofer sound as well physical sensation with every heartbeat. I sense it even in environments like on airplanes. I have learnt to live with it, but sometimes it makes it hard to sleep. It also makes me more cautious while training etc.

I am 14 months post-op from an emergency OHS where I got an aortic graft with a valve-sparing procedure, reconstructing my bi-cuspid valve at the same time. My BP is a bit high even with medication, around 145/75 due to a remaining contraction that they will try to fix with a stent in a month.

The sound is quite dependent on the BP, and beta-blockers can bring it down somewhat (more for others as it seems).

Since I only have a reconstructed AV, I wonder about how it may be linked to a mechanical valve or not. In my case, I had medium leakage before surgery but were in quite good shape anyhow. Now when the valve is tight, the heart may be a bit over-powered, or act in a way that's not in line with the new valve characteristics. I generally think the water hammer theory is the one that gets closest to what I experience.

So far, no one has presented any possible cure to it, except partly then to control the blood pressure.

Some say it is quite uncommon, but only on this site we are closer to a dozen now.

Most important to start with is to learn how to deal with it psychologically. Easier said than done, I know...

Good luck!

::g

 

[Shawn]

Thank you all for your responses and support.

Technically I’ve had 3 OHS in less than a year. The first an AVR in May 08 w/St. Jude mechanical that went beautifully! I only had had a low clicking sound of the valve in certain positions afterwards. However…I contracted a low-lying staff endocharditus in the hospital that I could not get tests to diagnose it by either my cardiologist or PCP until late Dec 08’.
I had my 2nd OHS in Feb 09’ where my St. Jude mechanical was replaced with another one with a conduit that is a size smaller. The surgeon explained that’s what my body would allow? Later that same day in ICU I was bleeding internally and was opened up again to add more stitches to a major artery to the heart. Hence a 3rd OHS. During my stay in the hospital I was told by my surgeon and his team that I had done much better than expected
and that I was doing incredibly well but my concerns at that time were incredible pain and fluttering. I did feel my body vibrating in a sitting position from time to time but was told that was normal. After leaving the hospital and seeing my surgeon for my follow-up I was told I’m doing great and expected to make a full recovery, that there was no damage or loss to my heart. My cardiologist said the same. Since then I been on the phone with both the surgeons office and spoken with my cardiologist several times. I was told several different reasons why I could be feeling the beating of my own heart so intensely and that I need to give it time to heal, that this is normal. My concern is I’m only 40 and not that there is a problem with my heart but that this feeling may not go away, that I will constantly be reminded of the HELL I went through.

I have read Seth's and Phoenix's posts which lead me to join this forum.

 

[Maryka]

Were you very sensitive to rythmic sound before surgery? I had a musician husband who buried ticking watches in the underwear drawer because they "kept" him awake. Good thing I was divorced from him years ago, before my loudly beating heart.

I, on the other hand, was raised to believe that ticking clocks/watches (and hearts) were to be considered soothing--like being in the womb again. So, lying there in the quiet night I think how soothed I am by the beat, beat, beat of my heart. (I actually heard my very bad aortic valve last year, which was a source of worry to me.)

I am not trying to be sarchastic, but I think hypnosis might help you. This is the sort of thing hypnosis could help. And, hypnosis works quickly.

The surgeon asked me if I would be disturbed by hearing my heart beat before the surgery. I am so glad that I was raised to find rythmic beating a relaxation!

Maryka
=======
St. Jude mechanical valve with dacron tube, December 23, 2008, Johns Hopkins, Dr. Duke Cameron.

 

[seth]

Pounding-Vibration

Pounding-Vibration

Shawn it's my understanding that you are not referring to sound, noise, ticking or how loud the valve is, but rather your heart beating against your sternum, collar bones and neck. It's incredible the surgeries you have had, after going through all that it's just cruel to have to be dealing with this pounding issue. I really feel for you. In my own case dealing with this problem there have been times when I thought I was going crazy, that I couldn't take any more torture. Like you I wonder if the feeling will improve and go away or if I am facing a lifetime of such pounding. So far there hasn't been improvement in nine and a half months, but for you it is still very soon after your surgery and I really hope it gets better.

FYI, I'm taking a survey on this subject for people like us at:
http://tinyurl.com/cmj3c6

 

[Woodbutcher]

Shawn,
I know exactly what you mean, I dont have a St.Judes but the ticking sometimes drives me nuts ! It seems to travel right through me. It's in my neck, my chest and my right ear pretty much all the time to varying degrees. Though I have to say, after three months it's becoming less of of a problem, I really think you have to give it time. The fact that it's happening 24 hours a day means that your brain will filter the noise out in time. Sometimes I'm not aware of mine at all, completely forget about it, then I think about it and back it comes into my head !
I've also notice it seems to be blood pressure related, almost like an early warning system. After my operation and for a couple of months my bp was around the mild hypertension mark at 160/90 and my tick was far more pronounced and louder and now it's constantly back down to around 130/80 the ticking seems quieter.
How is your bp ?
Justin

 

[stilldreamin]

I'm almost 5 weeks post-op, and trying my best to ignore the ticking and pounding. The past couple weeks have been the worst for trying to sleep, I have to try to muffle my heart. And I don't like taking deep breathes because that causes my heart to pound against my sternum and vibrate into my neck and head... feels like its tapping against every bone near it. It pounds and rattles enough, but the deep breathes makes it almost unbearable. I'm hoping it will calm down eventually.... I love to swim and I'm afraid that feeling will make it less enjoyable when I'm trying to hold my breath.
I don't have a St Jude, and my blood pressure is good.... but someone once mentioned smaller framed people seem to have this complaint more?
Hope this is something we all grow out of or get used to.

jen

 

[BDMc]

I don't have a St. Jude, though I often wished I did. I did have an aortic dacron graft, and for some time after surgery, was bothered by what to me seemed like the power of my heart beats. I think part of it was meds to regulate my heart, and after a month or so it wasn't an issue for me. There are still times when I experience similar sensations, but they are rare. I think it is a good sign you are getting good reports from your docs. It sounds like you don't have to worry about repeating the nightmare. Wish I could offer you guys more comfort. All the best, Brian