Beating making me crazy and sad - HELP!!!

[pat45750]

I am 15 days post op and have the really hard beating in the front top of my chest and back of my neck. It feels like the chair in back of me is moving, but I know it is my heart beating. It takes a long time for it to calm down once I sit or lay down. I just let it pound knowing it is better to have it working away then not! I am able to sleep 2 to 3 hours spans at night in my recliner. I wake up, wiggle a bit and go back to sleep I am lucky that I am able to sleep, even if only a few hours at a time. I am not taking Metropolo any more because my standing blood pressure was so low, I would get so dizzy standing up. I am sure we will feel better as the weeks continue on. Pat

 

[buncle]

I had the "hard heart beat" after surgery too. My surgeon said it would settle down and in time and it did. It is frustrating but should get better with time.

 

[ALCapshaw2]

One of the Cardiologist put it to me like this for the A-Fib and the Heavy HArd pounding Heart beat. Rob, your aortic valve has been resitrciting your blood flow for so long that your heart muscle has had to compensate and has grown very strong. Especially the ??Bottom?? Part (dont remember which is which). At this point I was injected with Versed and was given a Tee and Cardioversion.

Bascially he told my family that it would eventually even out in time.

The Lower Chambers are called Ventricles. The Upper Chambers are called Atrials.
The Left Side pumps blood to the body. The Right Side pumps blood to the lungs.

'AL Capshaw'

 

[COLLEEN S]

I had this too. Mine continues post op 2 years now. Is St. Jude with dacron mesh for aneurysm. People in the same personal space as me can hear the valve. The other day I had an unrelated appointment at the orthopedic doctors and the PA who examined me remarked that he could hear it when he walked in the room.
Good thing about it? I got used to it and the heck with people who don't.

 

[Kathy McCain]

I have a tissue valve and hear nothing now. Several months after my surgery I experienced the very heavy pounding heartbeat, in my chest, and the back of my head /neck where they meet. I asked the Dr. when this would go away. My cardio did not give me a definite time, but said it would go way. It was pretty scary. I thought I was having a heart attack! I really believe that most HVP are not prepared adequately by their cardios, for what to expect POST-op. I took a low dose of Xanax to help me sleep, and calm me down.

 

[ejonbry]

Pounding and ticking, even 2 years after surgery. The ticking at times is loud, to the point where someone will comment on how loud my "watch" is. I don't notice it so much anymore so I don't know if it has quietened or if I have just gotten used to it. A running joke between my wife and I is, if you can't hear the tick, call 911.

 

[Cherie']

Gonna try taking some Tylenol PM tonight to try and get some sleep and some relief from the pounding.

 

[malibu82]

I had my surgery 3 months ago now and as I sit here I can hear my heart beating. I don't even have a mechanical valve, I picked a tissue! I still feel it beat very strongly and know exactly what you are talking about. Mine has calmed down a lot though, and yours will too! Hang in there!

 

[Lily]

Gonna try taking some Tylenol PM tonight to try and get some sleep and some relief from the pounding.

I think our bodies can sometimes get into a cycle of waking and not sleeping as we should -- I did a few years ago -- and since I rarely take sleep or pain remedies, taking a Tylenol PM once or twice seemed to break that unpleasant cycle I had of waking.

Also, sleeping on my left side was more unpleasant and noisy for longer than my right side; but it did resolve. Hope it does for you soon too.

 

[ottagal]

I had my surgery 3 months ago now and as I sit here I can hear my heart beating. I don't even have a mechanical valve, I picked a tissue! I still feel it beat very strongly and know exactly what you are talking about. Mine has calmed down a lot though, and yours will too! Hang in there!

Like Malibu, I have a tissue valve and felt the forceful strong beating for many months. I am now 10 months out and can say that it has finally settled down and I am not as aware of it unless I am really tired and lying down. The doctor said that this was in part due to my heart 'remodelling' and adjusting to the new valve.

Good luck!

 

[Marguerite53]

Hi there. You haven't posted to this thread in a few days so maybe you're a little better? My valve is tissue, but several months post op it was beating so hard I thought I was going to see it bouncing out of my chest like a cartoon heart on a spring!! My cardio was out of town and the partner they sent me to was the "electrical" specialist so he went all out and ordered an echo and looked and listened and holter monitored me. Nothing. Maybe just some benign PVCs. Just so annoying and scary! You have gotten some great remarks from others here as to the heart's remodelling. True stuff.

Recovery is different for everyone. But it is recovery and it takes time. We all went to sleep and got invaded on the inside! It's an odd way to go into something so physically overwhelming. And we really kind of take our hearts for granted all our lives until there we are going into surgery! And the poor thing has been cut and stretched and stopped!! and sewn up and pushed around -- maybe it's just a little freaked out and confused. For me, after I knew nothing was "wrong" I decided that it was just dancing for joy and stopped thinking about it.

You may be feeding your own anxiety. You may be propelling things by focusing so hard on the sound and sensation. You are going to have to let this go and let your heart do its thing. You are not in control of your recovery. Your recovery is in charge. It is going to be what it is going to be. You should rest, eat right, get the proper amount of exercise and all, but really -- that is all you may be able to control. You are just going to have to accept it -- choose to let it not drive you crazy (I mean you are alive and that's completely and medically fantastic!). If choosing to take some drugs to get some sleep at night is part of letting the recovery be in charge, then so be it. Find some drugs!

And btw, if my cardiologist had said that my heart was certainly the loudest she had ever heard, I would have snarled at her and possibly gone off to find a new cardiologist!!! What an insensitive boor!!! He needs to comfort you and help you solve your anxiety problem. I think I'd call that office and just say, look -- I can't get any sleep... what are you gonna do for me?

Let us know how it's going. We understand your plight. Really. It's completely frustrating. But you are gonna get through this just fine. We honestly think it is just temporary.

Hang in there. Marguerite

 

[Cherie']

Hey all,

Still feel the pulsating (vibration) in chest, back, neck, right ear, and stomach. Been trying not to focus on it too much. Very difficult at times. Feel like im losing my mind sometimes. Took Tylenol PM the last 2 nights. The first night I think I slept about 6 hours... HALLELUJAH!! Last night I awoke in the middle of the night and just laid there...POUND< POUND...Pound. Trying not to focus on it. I guess when we are not that active that is the only thing we have to focus on. I guess you are never really prepared for what the surgery is like...and what you will be facing on the other side. I definitely did not realize how much pain it was going to be. Did not realize the mental challenges you go through. When I woke up in CICU I thought I was dying...pain was excruciating...I was so thirsty. It was way more than anything I ever imagined. Two days after surgery lung collapsed...all of the sudden I couldn't breathe...then all these people came rushing in and said lung had collapsed, they did not have time to move me, and that they were sorry, but this was really going to hurt. WHich it did!! I really thought I was dying then. It is really strange. Almost like an out of body experience.

I know I am very lucky that I survived the surgery and did not have a lot of complications. I am truly blessed. I am lucky to have my life and have a very supportive family and amazing friends. It is just that I never imagined the extent of the surgery and the invasiveness. I read the post-op notes yesterday. Didnt understand half of it. The surgery was 9.5 hours, was on bypass 4 hours. Replaced the valve, aortic root, ascending aorta up through the arch (the bottom part of arch). Apparently valve was in severe failure. surgeon said it was way worse than they thought. They had told me before surgery that OR was booked for 7 hours. I know surgery went longer than they anticipated. They had three surgeries that day. Luckily I was first. They cracked me open at 8 am. They finished last surgery at midnight. I believe one was a CABG.

I dont mean to complain, because I know I am lucky. Just had no idea that when you come out on the other side that it is a long way from over. Had no idea that my heart would feel like a separate entity from my body and take on a life of its own and that it would feel so pronounced. The vibrating is giving me a headache and making me nauseous. I guess it is just hitting me that this is going to be a very long journey...

 

[Bill B]

Cherie: You and I had very similar, very long surgeries with the aortic arch work being the thing responsible for all the extra time on the pump as they perform hypothermic total circulatory arrest with antegrade or retrograde brain perfusion. AVR and root replacement does not involve this procedure, so those surgeries and pump times are much, much shorter than you and I had. My surgeon wasn't sure just how much aorta needed to be replaced until he got in there and examined the tissue directly. We are both lucky that it included just the bottom of the arch. Still, the hypothermic arrest and brain perfusion is an amazing procedure, and it surprises me that there aren't serious complications more often, especially neurologic ones. I acquired a minor neurologic problem that, if it doesn't get worse, is rather trivial. You have suffered from much more pain and the lung collapse, but I hope those are behind you. Your valve should settle down progressively, but it may take some months.

 

[Marguerite53]

Thank you for sharing more of your story. I've been away from the forum for awhile and did not read up on your account anywhere else nor did I realize how extensive a surgery you had. Oh my!! You should be very proud to have crossed that mountain!!!

Please don't consider yourself a complainer. If you are, then we all are!! We are here to listen, support, share ideas and experiences. I think when you say that you didn't expect this to be quite such journey that is exactly the point you must focus on right now. Nobody warned you. Even here at VR, we might have said oh! not a picnic, but you'll do great! But most of us honestly did feel like we'd been in a train wreck for quite awhile! One of the running jokes used to be, hey! did you get the license number of the Mack truck that knocked me down?

So now your job is to accept this journey. Accept that recovery is going to be an event in your life that you will look back on and say, wow! that was not fun! But here I am now, out from under it and living my life far beyond what I might have without having gone through this.

How do you do this? Well, I don't know what your personal interests are, but if there were ever any that were kind of low key and you never got around to investigating them or practicing them -- now might be a great time to experiment and give them a try! Many of us find it hard to concentrate for a few months. Hm. So maybe you've always wanted to be a better cook. So schedule some time to get some cookbooks just to thumb through at the library. Or watch cooking shows. Or get a Netflix account and rent some cooking videos. Or maybe it's traveling. Or maybe it's a foreign language. Use this time to learn something new! Find a diversion. Get your focus away from your healing heart. Please don't stop asking medical questions of your doctors -- always call with concerns. But really -- branch out a little!! Try to find something personally productive (yet not something that needs truly focused attention) to do with yourself when you wake up in the middle of the night. Then, instead of being frustrated by being wide awake, you can instead go into another room and actually work on something that pleases you until you are ready to rest again. Let your body schedule you. Stop trying to schedule your body. If you give in to your body's demands, I swear your body will soon give up its fight and let you get back to a more normal pattern.

And those poundings and noises -- keep working to ignore them. By getting your mind busy with other things, they should annoy you less and less.

I'm sorry that you had such a rough time of things. You did. You really did! I woke up in CICU completely thirsty, but so stoned from meds that I found it amusing to try to reach for the ice chips. Most of the rest of my initial wakings are completely lost in my memory. I guess I was given drugs that worked better. My surgery was text book and less than 4 hours; nothing but a valve replacement. Different people, different surgeries, different recovery. You have every right to be frustrated and tired.

So please don't be shy about whining or venting. We are here for that. For the whole journey, too! And maybe it won't be that long for you. Maybe you'll have one of those that was just awful for the first few months and then ba-boom you'll feel fantastic all at once! We are all different! Accentuate the positive!

Best wishes.

Marguerite

 

[Cherie']

Thanks everyone for the encouragement. I just have to get my arms around the fact that the journey did not end with the surgery - it had just begun. I guess my entire life I have been go-go-go and never dreamed I would be stopped in my tracks the month of my 46th birthday. I have to learn to accept and deal with the vibration and pounding - and be thankful that I had amazing surgeons that knew what to do to save my life. They have all told me that I have been given the gift of my "life" - that I likely would have dropped dead within the next year had this not been discovered.

 

[Nancy]

You have indeed been given the gift of life. But that doesn't mean that the recovery journey won't be difficult. At 46, it is a terrible surprise to have something like this happen. We all think of surgery as something like an appendectomy, you go in, go to sleep, come home, are in pain for a couple of weeks, but then it all gets better.

This surgery is very different. And you had a very complicated surgery and repair. It was such a lucky thing that it was discovered and you are here and in recovery mode.

Some people, the very lucky ones, sail through the surgery, God bless them. But I think that is rare. The normal recovery is about 6-8 weeks in the early phase, then a year or more in the final recovery phase.

I helped my husband through a couple of heart valve surgeries, and a couple of lung surgeries, which Joe thought were even worse than the valve surgeries. He was always in great shape, but he didn't just bounce back. It knocked the starch out of him for a good 6-8 weeks, weak as a kitten, after which he felt fairly good, but it took at least a year before he could say he felt much better.

Sure, it will get better each day, but you will have days when you will backslide and it will be discouraging. Just keep putting one foot in front of the other and keep on walking. You already sound a little better, that's good.

I think you will be a very good person to help others who come along and have difficult problems. They need to hear that although it will be a long journey, things will get better. So, hang in there. Eventually, you will be able to help some very scared folks.

I wish you all the best, you're a brave gal.

 

[Michelle D]

I just have to share what my aunt told me yesterday. My grandfather had triple bypass a year before he passed due to lung cancer stemming from working in the granite mine is NH, I was a snotty little teen and lived across the country so I never spoke to him after his surgery. He was the calmest man you'd ever meet, he was the toughest as well he was a WWII vet with gun shot wounds and all. He was a very centered and grounded man. He was also very humorous. I remember everytime I've ever seen him or spent time with him he was smiling and had so much patience. Bur my aunt told me for about six months he was afraid to walk down the street or go snow shoeing, he would walk through the grocery store. He was in so much fear that his blood pressure would go up and he'd bust open a graft. Little did he know he'd die one year after surgery from lung cancer. He spent the last year of his life in fear and anxiety. It breaks my heart. He's my only family member that had heart surgery so it wouldve been nice if he was here for me. I guess the point is, if you can find a way don't waste your tome worrying. You are only 46 and I'm only 28 but each day counts. I'm still struggling with emotions and palpatations but I've decided my pity party is over. I've begun studying for grad school, I've started spending more time with friends, reading, etc. Don't try to block this out, accept it, say you'll only get better, and then move on. Make a worry list. Write your worry down and tell yourself you'll worry about it later. And remember your heart is ticking therefore you must be alive.

 

[Cherie']

Michelle,
Very wise advice from somepne so young. (This is a compliment) I am sure this has been quite a surprise for you being only 28 and that you are wishing you never had to have the surgery. (this is what I have been saying to myself) At some point this weekend, I think I realized that there is nothing I can do and somehow I have to find a way to deal with this. I have had a headache for two weeks from the pounding and I am nauseated from the vibration in my stomach, but somehow I have to find a way to deal with this. I see the toll it is taking on my family. My husband looks exhausted and so do my kids. They are busy with work and school just starting. I see I am dragging them down. Somehow I have to find a way to get through this and accept the fact that this is going to be a very long road.

 

[Michelle D]

Thanks, I think wisdom comes with experience not years. My whole life every single thing that I've done was like climbing mount everest, nothing has come easy for me. This surgery by far has been the biggest challenge. I'm not a religious person but this has made me wish I was but you have faith or you done so I have gotten through (mentally) all of my challenges and road blocks using reasoning.

I really feel for you. I don't have a mechanical valve but the pounding. I'm not saying it will work for you but Xanax has dampened the pounding. I only feel it slightly. Also are you on lasix and how much? My cardio said lasix can cause it to beat harder. I guess if you think about it, if you are dehydrated your blood will be more viscous and your heart will need to pound harder. I'm guessing.

Also for me smaller meals help with the pounding in my stomach. Fatigue will make it worse, I know you trying Tylenol pm but you may want to try ambien. Acetametaphen is bad for your liver, from my pharmacist friend Tylenol will do more damage than ambien. If you don't want to try ambien ask your doctor if you can take benedryl. But ask first, my doctor won't let me take benedryl yet because I still have residual heart failure.

 

[ALCapshaw2]

Michele makes a very good point about the possibility of being dehydrated.

One test is to check the color of your urine. If it is yellow, or dark in color,
you may need to drink more water. It should be close to clear with sufficient hydration.
Ask your Doctor if this is a concern.

'AL Capshaw'