5 weeks after Emergency AVR Redo

[The Thief]

Hey all,

I just thought I would update on my progress. 5 weeks ago, my mechanical valve (installed only 3 months prior) was found to be coming off, causing shortness of breath. The day after we finally figured out what was going on (Bacterial Endocarditis), I had an emergency surgery to replace the valve, as well as the ascending aorta, which was repaired before, but now replaced. See full post here: http://robovalve.wordpress.com/2014/03/18/only-a-minor-setback/

Now that my aorta is replaced with a dacron tube, I feel the pounding sensation that I've read about here. I did not experience that after my first surgery. My heart pounds against my sternum (at least that's what it feels like) in certain positions. It seems that this is consistent with patients with aorta replacements. I hope it goes away. I have been getting very dizzy when standing up from crouching or sitting positions, although I experienced that after the first surgery too. I'm still on 25mg metoprolol, though thankfully no longer amioderone and also no lisinopril. As I recall, last time the dizziness started to get better after 8ish weeks. My upper back is in allot of pain. So is my sternum. When I get up from a lying position, they both hurt like hell. Perhaps I strained them recently because this pain feels like it has increased slightly. I think because my sternum was cut twice within 3 months, that it is having some trouble healing perfectly this 2nd time around. My scar looks great though.

I had a scare recently; I was getting low grade fevers in the late afternoon. The doctors were a bit concerned at first but reassured me that I was fine, especially if the fever returned to normal in 24 hours. I monitored my temp, and my body was following the typical human daily temperature fluctuations. We are cool in the morning then gradually get warmer throughout the day, then cool down at night. I am just still freaked about infections.

I have 2 weeks left of my antibiotic regiment via PICC line. I have become a pro at administering the medicine (2 kinds of antibiotics, 4 times a day total). I'm on Vancomycin and ceftriaxone (rocephin). I am looking forward to being done with these meds and getting back to routine. In fact, I start a new job (i'm a science teacher) on May 1st, which I am very excited about. I got my insurance figured out so that the transition is seamless, thanks Obama. Seriously, 'obamacare' or Covered California will allow me to stay with my current insurance even though I am leaving my old job and thus losing their employer based health coverage (Kaiser). This way I can continue with Kaiser for a few months so that my follow up appointments can happen, and once this all blows over, I can switch to my new employer's insurance. I know for some people the health care reform issue is controversial and disagreeable, but for me, someone who has been denied coverage for years because of a preexisting condition, I am thankful for this reform that will benefit me in this time in my life when I need it most.

Oh, by the way, I am NOT up for a political debate. ha!

Guys, life is tough when we have to go through this OHS thing. I was very good at positive thinking after my first surgery. This emergency surgery really knocked me down a peg or two. I'm trying real hard to keep my head up and to not be scared. I'm doing okay, and I'm feeling better about it each day. You know, that whole getting knocked off a horse thing.

So let's all get back on!:thumbup:

 

[Sten Osis]

I didn't have an aorta repair but I did have the chest pounding, which felt like it increased upon taking a deep breath. The surgeon said it's because the heart is no longer enclosed in the pericardium and it's positioned a little differently after the surgery. After almost one year, the pounding is still there but diminished, or I've just become accustomed to it. Wow, you've had a rough ride! Keep up the positive attitude and you will be fine. And keep us updated.

 

[Paleowoman]

I didn't have an aorta repair but I did have the chest pounding, which felt like it increased upon taking a deep breath.

I have exactly that. I think it feels greater with a deep breath because the space is bigger - like a cello is louder than a violin because it's bigger ? Sometimes though I can even see my chest pulsating with each heart beat and see that through clothing so it's also something to do with the heart being very close to the sternum.

Anthony - hope your recovery gets easier !

 

[Agian]

Hey Anthony, I was thinking about you today. Congratulations on your new job.

 

[AdrockTN]

Endocarditis is no joke ... getting that & then having OHS is like a double whammy, but you've been hit with a lot of whammies ... glad you've got such a positive attitude & outlook on things.

Do they know what caused the endocarditis?

 

[epstns]

Anthony - I've made room for your picture on the "Hit all the speed bumps in recovery" poster! You've gone way beyond my few escapades, and I truly wish you nothing but the best from here.

My own theory on the reason why folks with aortic replacements or sleeves (and remember, I have had no "work" done on my aorta) is that the natural aorta can expand and contract slightly with pulses of blood and pressure under normal conditions. When a sleeve is placed around the aorta or a section is replaced with a synthetic tube, it can no longer expand like it used to, and some other part of the system must expand to accommodate the pulses. Kind of like an air chamber in a water line - it eliminates pipe hammer. The pulses you feel are your body's internal "pipe hammer" in response to being re-plumbed in a non-standard manner. Probably nothing to worry about, but can be annoying.

 

[Ryan CA]

Thanks for the update Anthony. I am set for my AVR on June 2nd and I have been following your blog quite a bit once I read about your cycling and climbing. I mountain bike, kayak and hike so I use your initial, speedy return to a high level of activity as motivation that I will have the same experience. Hopefully I don't get the entire experience you have had.....

Good luck with the new job and getting back on the horse!

 

[clay_from_nj]

Don't worry at all about the pounding, it is very common, and has been discussed at length on this very forum. I think Al Capshaw really explained it well on this thread: http://www.valvereplacement.org/forums/archive/index.php/t-24354.html.

SEVERAL of our members have reported a Pounding HeartBeat after Surgery.

The most plausible explanation seems to be that the Heart Muscles had to Pump Hard to compensate for a Stenotic (or Leaky) Valve.

When your New Valve was implanted, the Heart kept on beating as powerfully as before, but now you have a properly functioning valve and 'feel the effects'. The more the Heart is Enlarged, the worse this effect would be expected to be (my GUESS, not a professional opinion).

This may take some time for your heart to 'recondition'.
It seems that some Cardiologists prescribed various medications to help minimize this effect.

Do a SEARCH for Keyword "Pounding" and you will find several posts discussing this issue.

I would add that when you take a deep breath in, everything in your chest cavity expands (not just your lungs, but also your heart) and so your heart can move an even greater amount of blood with each stroke, as well as being pushed up against your breastbone by your inflated lungs. While it lasted, whenever I would exercise strenuously, I would purposely inhale very deeply and imagine that my heart was "revving up" into "high gear". Though I'm sure it was more imagination than anything else, it did seem to increase my strength and stamina, or at least gave me a psychological boost.

 

[Blair]

Hope you have an uneventful recovery from here on out. My own journey down this valve replacement adventure is just beginning. Reading your (and everyone elses) posts has been a big help to me. Thank you all from the bottom of my soon to be repaired heart! I had a similar insurance problem. The last few years I kept hoping the valve would wait until I could get it covered. So when it finally did started heading south the timing couldn't have been better.

Glad to see your positive attitude! Wishing you all the best.

 

[maisiejane]

Hi Anthony,
So good to see that you are doing so well, the heart pounding does freak you out at first, I didn't feel it much in the first 3 weeks but now if I breathe deeply or sit up straight its like the lead drum in a marching band, I told my GP about it today and at first she dismissed it as it only being my awareness! So I asked her to put her hand on my upper chest and when she did she nearly fell off her chair laughing �� immediately she got her stethoscope out and listened, she said that it was a really strong steady beat but none of her other patients had ever mentioned it, thank God we are members of this forum, and I was able to paraphrase other members experience with the thudding . I am sure you will continue to improve and regain the confidence in your body that you had before. Thinking of you.
Deb

 

[mbeard]

Anthony,

You have scaled a difficult , tough mountain. I am so sorry. Here is hoping that coming down the other side is easier. Please know that I appreciate the update. My thoughts have been with you since you last posted about this.

 

[R1Phrankey]

Anthony, hopefully things go smoothly from now on.

I have got a question on the bacterial endocarditis: Do you know what caused this infection on your mech valve? Was this BE still present after the first surgery or did you get a new bacterial infection shortly after your first surgery? I am not familiar with BE, but reading these kind of stuff scares me.

 

[The Thief]

Thank you for the input and kind words everyone. I am really thankful for the community here.

to answer some of the questions: They were not able to identify where the bacterial infection came from because all cultures did not grow (came back negative). This is possibly because they blasted me with antibiotics once I got to the hospital, before they took blood cultures. The BE infection happened 3 months after my first surgery. I did not have BE before my first surgery. If you are worried about BE (all of us should be aware of it), the best preventative measure you can do is to practice immaculate oral care. Get a refresher course from your dentist if your skills are rusty. SkiGirl has a good brushing procedure that she shared with all of us here. Copied/pasted here:
* Rinse with anti-bacterial mouthwash, ~1minute
* Wait a few minutes while it kills everything
* Brush
* Floss with TAPE floss, not the gum-chopping string stuff
This should be done 2-3x a day and you should never brush without pre-rinsing. Of course the usual still applies for pre-medicating before dentist appointments, but he said the most important thing is to rinse with anti-bacterial mouthwash before you go to the dentist, before they start poking around in your mouth, and after they finish.

 

[ottagal]

Anthony,
Thanks for the input and really hoping that things move forward and only in the right direction in your recovery. You have been through alot. Be kind to yourself.

Good to put the dental regime out there for all of us so we can all reduce our chances of getting BE! I also read in one the posts from last time to decontaminate your toothbrush in listerine as it harbours bacteria. Makes sense as bacteria can live a while in a warm moist environment (such as on a toothbrush). Seeing that the recommended time to change a toothbrush is approximately every 3 months, keeping it clean in between is a good idea.

 

[mcsf]

It sounds like you are doing well. I am seven weeks into recovery and my hearts pounds hard in my chest. I hope it goes away. I am having a hard time adjusting to the thumping. It's kind of annoying.

 

[Bryan B]

Anthony - I've made room for your picture on the "Hit all the speed bumps in recovery" poster! You've gone way beyond my few escapades, and I truly wish you nothing but the best from here.

My own theory on the reason why folks with aortic replacements or sleeves (and remember, I have had no "work" done on my aorta) is that the natural aorta can expand and contract slightly with pulses of blood and pressure under normal conditions. When a sleeve is placed around the aorta or a section is replaced with a synthetic tube, it can no longer expand like it used to, and some other part of the system must expand to accommodate the pulses. Kind of like an air chamber in a water line - it eliminates pipe hammer. The pulses you feel are your body's internal "pipe hammer" in response to being re-plumbed in a non-standard manner. Probably nothing to worry about, but can be annoying.

This is pretty much how my surgeon explained it.

Anthony,

It sounds like you have a great attitude which is half the battle when things don't go as planned. I had my ascending aorta replaced and the pounding bothered me a lot for about the first year or so. Gradually it got a bit quieter while at the same time I got a bit desensitized to it. The result is that for the most part it doesn't bother me anymore. I also had BE before my first surgery so I know what you are going through. It took me awhile before I stopped worrying every day about getting it again. I'm still vigilant about reducing my risks but I don't let it consume my thoughts anymore.

Heal up good and good luck with your new job!

 

[river-wear]

Thanks for the update, Anthony. I'm glad you're feeling better and hope you can maintain the positive attitude. I'm sure it must be very difficult, given all that you've been through. You're a long distance cyclist, pace yourself - you'll make it!