What's ahead?

[MattAZ]

Hello, all. First time poster today. I had been lurking here for months as I tried to find out what I was about to go through, by reading the words of those who had already been there. See, in November, I was diagnosed with a bicuspid aortic valve that was severely regurgitating. I later came to find out, through getting a second opinion, that my mitral valve also had some insufficiency. On Tuesday, 2/28, I went under the knife for valve replacement surgery, and I have now been home from the hospital for one full day. The surgeon had originally just planned on replacing the aortic valve, but once he had, the mitral valve began leaking much more. Nine hours of surgery later, I had two mechanical valves in my heart.

I am glad I had these issues addressed, but I was in no way prepared for some of the things I am now experiencing. For example, I tick. Not like something quiet that only I can hear, either. My family will be in the room and comment on how loud it is. They all think it's funny, but I am honestly pretty emotional about the fact that I will have to hear this for the rest of my life. I suppose, in time, I might be able to tune it out, but knowing others can hear it so easily is quite discouraging.

That being said, I feel I am progressing well in my recovery. I am 43 years old with a wife, and kids that are 10 and 2. Making sure that I would be able to be around for them for the long-term made it absolutely crucial that I get this surgery now rather than waiting. I was just wondering what insights any of you might have for the the recovery process. One major thing I seem to be dealing with is discomfort from not moving much. I am sleeping with a heating pad to help with the pain in my back and shoulders. Anyone have any ideas that might make it easier to get a good rest at night?

Thanks in advance for listening, and for any responses you may have.

Matt C.
Phoenix, AZ

 

[Fundy]

After the first two nights I slept great for the first five weeks. I was walking often and breathing exercises every hour. I had no problem with back and shoulders until five weeks.

Do you have a recliner you could sleep in or enough pillows you could add to bed so that you can sleep almost sitting up. That may help.

Also, you might want to try a lot of basic arm movement exercises during the day to work the soreness out a bit. I drank a heck of a lot of green tea, so maybe lots of fluids and caffeine helped me for awhile too.

 

[normofthenorth]

Some of us had miserable back and neck pain post-op, and some of us had none, and lots in the middle. I've got no magic cures. I'm surprised that your AVR made your MV regurg worse instead of better, but that's all academic now. The ticking often fades, though many find it stays noticeable for a long time or even forever. We're all individuals in this!

 

[JimL]

It definitely gets better! I remember folding my right arm in front of me and laying on top of it, which felt great. After a while, it becomes very comforting to hear the ticking. If you get to the point that you can't hear it any more, you might want to get that checked out. Go ahead and take it easy for a while, so that you can heal all the way. If it suits your personality, you might think of ways to joke about the ticking (It's my watch, does someone have a bomb).

 

[MattAZ]

Yeah, humor is really the only way to go as far as the ticking is concerned for me. The other thing I absolutely dread right now is coughing. Fortunately, the bouts are few and far between, but I need to remember to prepare for them by having my heart pillow around. Last night was lots better sleep-wise, thankfully.

I have a coumadin clinic today, but other than that am trying my best not to overdo things.

Thanks, folks!

 

[Greg a]

Yeah, humor is really the only way to go as far as the ticking is concerned for me. The other thing I absolutely dread right now is coughing. Fortunately, the bouts are few and far between, but I need to remember to prepare for them by having my heart pillow around. Last night was lots better sleep-wise, thankfully.

I have a coumadin clinic today, but other than that am trying my best not to overdo things.

Thanks, folks!

As others have said a recliner is great .......while coughing is ann issue so too is sneezing and laughing WELCOME TO THE SITE and Godspeed in your recovery

 

[Jkm7]

Hi Matt,
You are so 'normal' for just having had heart surgery and it sounds like you are doing great.
To be alert enough to research on the web and find this site and start posts is wonderful.
Many who have mechanical valves do complain initially the noise is very disturbing to them. There is no predicting who will have a loudly ticking valve or one that is hardly audible. Body size/build do not predict as a petite little lady can have a very quiet valve while a barrel chested large man's mechanical valve might tick loudly.

Many do report that in time the valves quiet down and a great many report they become very used to the sound. It can often take up to a year or so until the sound is no longer disturbing to them. Others say they adjust quickly.

Trouble sleeping is very common post op and many of us suffer that. I had two OHS and had trouble sleeping both times though far worse the first surgery. Some doctors prescribe meds to help with sleep in the early recovery period. Rest is important.

The best thing you can do for yourself is to walk. It makes such a difference in healing. Your hospital probably gave you instructions in this regard with your discharge papers. I found that forcing myself to do the prescribed walking was incredibly beneficial for my breathing, my neck and back pain, building my strength and even my mood. Depression post op is hugely common and simple walking exercise can help.

Happy you found us and please ask all questions. We're happy to help in any way we can.
Congratulations on doing so well, so fast.

 

[Mentu]

Hi, Matt, welcome to VR. Walk, Walk, Walk! I found walking not only improved my breathing but my sleep as well. I had almost no chest pain but the shoulder pain was there from the moment I first woke. A friend suggested massage and I found that did help as did standing in a hot shower with the water pelting on my shoulder. In retrospect, I should have used a chair in the shower because I found myself suddenly feeling weak after five minutes or so. Still the water felt good. By about three weeks when the incisions had healed my shoulder was feeling better as I hope does yours.

As you begin to use your arms more, Matt, consider that you can suffer strains not just by lifting to heavy a weight but also by repetitive motion. Try to resist strains and give your chest the time it needs to heal. Do you plan to attend Cardiac Rehab? I started at the end of six weeks and found it to be one of the best choices I made. It is not so much that the exercise is special but rather that the constant monitoring helps restore your confidence that your body can perform without being hurt. It was also nice to be part of a group who shared the same experiences of surgery and healing. At this point, however, it sounds as though you are doing quite well.

My valve does not tick so I can only suppose what you may come to feel. I will say that I was somewhat troubled at first by my 9" scar. Over time, however, the scar has come to symbolize for me the start of a new direction in my life with a new and better future. I have been sort of sad to see it fade the way it has; it no longer has any color. Perhaps, with time, as the ticking eases, you will be comforted by it as your reminder that you have a future again.

Larry

 

[Mom2izzy]

I had surgery to repair my mitral valve on the same day as your surgery. I can't speak to the ticking valve issues, but as far as sleeping...this is what has helped me...

I try not to sleep too much during the day.
I find that the more I move, the better those back and shoulders feel. On a day where I pretty much laid around all day, I had a terrible night's sleep...pain and discomfort all night. Since then I have been trying to take more frequent walks and do the PT exercises they gave me and I have much less discomfort. (sounds backwards, but it was explained to me that air gets trapped in our muscles while we are open, that air causes pain/stiffness, and the only way to get it out is to work the muscles...that was from a massage therapist not a doctor, but it made sense)
I had a massage in the hospital and am having another this afternoon.
Although I don't have ticking valves, I have ringing ears, so I will now be sleeping with Pandora playing something softly to distract me from the other noises.
I also take a small dose of anti-anxiety meds to help when my brain starts whirling all over the place, wondering if I will ever be "normal" again.

Hope your recovery gets better!

 

[DanielB]

Hi Matt, welcome. What you are reporting sounds pretty normal for this soon after surgery. It does get better. I had trouble getting comfortable at night as well, but found it best for me to start out propped up in bed with pillows until I went to sleep, then I moved to whatever position was the most comfortable that night. I have a recliner and don't seem to have any trouble drifting off in it watching TV (my wife can attest to that), but I just couldn't get settled in that for more than a nap. For me, improvement in my sleep came with time, walking regularly and working to get off the pain meds. Not having ever had any kind of surgery, I have found that that the recovery from this has been really different than anything else I have experienced as far as illnesses, etc. I have noticed that I have felt like it is taking forever to progress, but then, before I knew it, looking back every few weeks, I realize that I am better by far at that time then I was then. Still the same thing -- I am at 4-1/2 months and, though I still have some complaints, looking back a month ago, I had a longer list of things to be grumbling about than I do now and, really, I am getting better all the time and feel pretty good now. As far as the 'ticking' sound, my wife tells me she doesn't even notice it now. I hear it, but for me, I have always liked it as it tells me that the valve is working. I often listen to it when laying in bed focusing on how strong and crisp my heartbeats are now and not the 'squish-squish' they were prior to surgery. It actually brings a smile to my face that the doctors could correct such a problem. I hope your recovery progresses well, we're all different in how fast it happens, but it does.

Dan

 

[markp66]

To be honest being able to hear the valve is rubbish. It's v annoying and even worse at night. However, my personal experience is that 4 months post op I rarely hear it. Its more The sensation of it thumping against the chrst thsn the noise. And when I do hear it it does get me down but it is such a small price to pay. We could be dead after all. Apart from my girlfriend nobody has noticed it at all. And people who don't know you have a mech valve are unlikely to notice. From what I've heard children love to listen to it! I'm going to tell my kids that I swallowed a clock when I was young! Glad surgery went well apart from the double valve replacement. Stupid question but do you hear 2 clicks as you have 2 valves or does it all happen at the same time?

 

[Jkm7]

I have tissue valve so no clicking but I was wondering the same thing....

Does a double valver hear two distinct clicks or is it one?

 

[AgilityDog]

I heard tick, tock when I had only one mech valve--think Nazi goose stepping when amplified.

Now, with 2, they are not quite synchronized, so is sounds more like a couple-three horses trotting a bit out of time.
But I don't usually hear them at all anymore.

the noise USUALLY gets better with time for most of us. Lordy it was irritating at first, and somewhat embarrassing.

 

[MattAZ]

I am having a rough day. The issues are two-fold. First, I have been battling extreme tightness in my shoulders. I have been able, for the most part, to sleep well using the reclining sofa we have, but the lingering side effect of that is this soreness in my shoulders. I am still using a heating pad to help with that. Today, though, the soreness has given me a ridiculous headache, and the sound from my valves feels like it's hitting me somewhere in the middle of my brain. I am trying to stay off the pain meds, and am gradually weaning myself off them completely. They don't seem to help at all with the aches and pains that I have anyway, so I struggle to see the reason to use them. Is there a set time after a dose that I can just take something over the counter, like Advil. That's what I really need right now!

I feel like a big baby about it. Everyone says how great I look and how well I am doing. Put into perspective, yeah I guess so. Considering I just had a 9 hour open heart surgery 12 days ago. Sorry, just ranting a bit here. Hoping for a better night and to be able to sleep in my bed sometime soon.

 

[JimL]

I stayed on the pain pills a lot longer than 12 days, but I saved them for bedtime, and had just that one a day to help me get as much sleep as I could. The pain pills are wonderful things, not to be rejected. The risks of becoming addicted are a non-issue, as long as you still have pain.

 

[Jkm7]

I agree. To hurry off pain pills when you still need relief is counter productive IMO

Our doctors would not prescribe and would not refill if they did not know we need them.
Matt... it sounds a little like you are chasing the pain and that is why you aren't getting relief. It is far easier to avoid severe pain by taking the medication as prescribed and not getting into suffering before you take the medication. You are not very long post op and still have pain and you might be better off taking your meds on schedule and hopefully you can get some relief. If they aren't working at that point, call your doctor and ask if they think you can try a different medication. The same med does not work the same way for all of us.

 

[Garserin]

Matt, I think it might be worth trying extra strength Tylenol for your pain. Narcotics make me nauseous and 2 extra strength Tylenols were all I needed after my IV pain meds were stopped after 3 days.

 

[Mom2izzy]

I am 12 days post surgery and have been off narcotic pain meds since I came home from the hospital on day 5 (issues caused by the pain meds were worse than the pain). I know all about those aches. Massage therapy has been the best solution for me. I do think there is a side effect...the drugs/anesthetic seems to be released from muscle tissues during the massages resulting in short bouts of dizziness after each massage.

 

[Allisoninoz]

Hi Matt, you are doing well but you are also entitled to feel a bit sorry for yourself. The neck and back pain was horrible for me. You might like to read about my surgery experience and recovery at http://www.heraldsun.com.au/ipad/a-diary-of-open-heart-surgery/story-fn6bn9st-1226058541539 ... you might find some similarities to your situation. I didn't have a mechanical valve so can't relate to the noisy ticking, but I was very aware of my louder heartbeat after the surgery, which was both good and bad.
Massage, physio, walking, heat and lots of TLC was what helped me the most in the early weeks of recovery.
Take care. Alli

 

[MattAZ]

Thanks, as usual, for the positive reinforcement. It's reassuring to hear these thoughts and experiences are similar to others who have gone through this process.