Bert's Heart Valve Journal

I don't know if anyone reads these so I'll keep it relatively brief.

I made it to my 6 month post-op anniversary on May 7. I've seen some improvement for sure but still have a ways to go. The inflammation that has dogged me has declined enough that I can work in short jogs at a decent pace now without going into AFIB or having pains. It seems the ibuprofen has really made some difference for me.

The doctor thinks I might not feel 100% till about 1 year post-op. That seems to be roughly the trajectory I'm on.

I hope I can sustain runs at about 10 min/mi pace by June or so. I think that might be possible. I have a stress test with the cardiologist in about 2 weeks so we'll see if that shows some improvement too from the last one I did way back in Feb.

Today marks the 5 month anniversary of my robotic mitral valve repair done at the Cleveland Clinic.

It's been a bumpy ride. Not as bad as some but I'd say below average from the stories I've been reading. Still, as they say, all our recoveries are different.

If you read any of my other entries you'll know my battles with inflammation, AFIB, tight chest and odd pain sensations in my chest. I was a very active runner before surgery and my life has dramatically changed now to barely more than sedentary. However, I keep seeing small signs of improvement. The rate has been very slow but it's there.

The thresholds that trigger pain and tightness are higher now than just a month ago, meaning I can walk faster or go up steeper hills without having symptoms. My heart rate and blood pressure have both come down to pre-surgery levels as has my weight (I've been actively working to lose weight after a post-op gain). I'm slowly becoming more active again but it's going to be a long road to get anywhere near where I was. Still I'm happy to be able to get in some slow jogs now mixed in with my walks. I've even started to lift some light weights again at the gym (the circuit training).

I've had a couple of relapses of bad symptoms in March but I'm hopeful now that they're behind me for the rest of this recovery ride. I have to watch out for getting sick as that seems to really wreak havoc with my problems.

All in all I feel like when the dust clears I'll be in much better shape than before the surgery. My energy levels have been higher, better concentration and memory, and generally more enthusiasm (although lately my inability to run has been getting me down). I just have to get through this recovery phase, how ever long it lasts. When I pop out on the other side I hope to be able to post some of those glowing posts I see so often on this site. Till then, it's one day at a time and just keeping the chin up as much as possible and trying to focus on the things I CAN do rather than what's not there quite yet.

I wanted to pass this along for any others experiencing similar symptoms.

Since joining this website I've run across a few people who have mentioned they have "Dressler's Syndrome" or "post-pericadiotomy syndrome" (I think the two syndromes are one in the same or very closely related) after they've had mitral valve (or other valve) surgery. It's taken me 5 months but after a lot of tests and several doctors it seems like I have discovered that I also have suffered from this or a close relative to it.

The symptoms for me have been "flare-ups" that occur weeks or months apart with low-grade fever, pains in my chest and left shoulder, and pain with deep breaths. The flare-ups also resulted in AFIB most times (and AFIB episodes could last for hours a day, and for a week in duration). In between the fare-ups, I'd still be left with a very tight chest feeling, sometimes pains deep in my throat that were throbbing, and odd sensations like someone is squeezing my windpipe or I'm breathing through a sock shoved inside my lung! It feels pretty awful and it is every day.

In my case the flare-ups seemed to be tied into contracting a cold. But I don't think that's always the case with other people.

It seems that the diagnosis for this is seldom made (from the stories I've read on this site), but if one IS made it seems to be based on seeing pericadial or pleural effusions (often both) on a CT or sometimes an echocardiogram. In some cases it seems that a simple EKG can spot abnormalities due to pericarditis problems. There is also a blood measurement of C reactive protein (CRP) that is used to indicate inflammation. If it is high and they see evidence of those effusions (and often low-grade fevers), then it seems you may get a diagnosis.

In my case, none of these scans showed anything except for a small pleural effusion in one lung. I was never put on anti-inflammatories except for a brief time after one flare-up (I was on colchicine for about 2 weeks). Then, bizarrely, I was taken off of it with no explanation, even though my blood was showing inflammation and I had all these horrible symptoms (at the time they also had me on amiodarone, and so all the symptoms were blamed on that).

Finally, after a different doctor took me completely off Amiodarone, and everything else has been ruled out, I'm now on ibuprofen to keep down the inflammation. That has helped A LOT!! I don't feel totally normal again, but it has kept the pain of flare-up down considerably. I can sleep at night without the pain waking me up and my fever is kept down. I've also noticed I have far fewer palpitations than I had in the past. My breathing is much easier in general. I really wish I'd been taking this or something like it all along, but I couldn't get anyone to put the pieces together.

From what I've read from others on this site who've had this, it is very elusive and not always spotted. I saw one person say that they got tired of paying for office visits where they're told that everything is fine and they get no help. That was my situation exactly. I've read some things online that 20% of valve surgery patients can have this syndrome! So why is it (seemingly) so often missed or ignored? I'd love an answer to that one.

If anyone has had this and would like to chat, I'm all ears. Drop me a note. I hope (I truly hope) this can help someone who might be like me and not know what is going on. I'd encourage you to push your doctor to get at least a blood work up to look for inflammation (especially during a flare-up). It seems like the CT is the other tool that has the best track record in helping to define this.

I saw an article online that mentioned a 6 month recovery timeframe for post-pericardiotomy syndrome. But in general it seems like not much is said about it.

Others on this site have said they get bad flare-ups with several weeks of feeling really good in between, and this cycles back and forth for months until it eventually goes away entirely (each flare-up not as bad as the last).

There's no point in needlessly suffering terrible symptoms. Find out if you have this, get it treated with anti-inflammatories. It will help speed your recovery and let you live a better life during this recovery period!

I thought I'd post a note here for others about my experiences with cardiac rehab after valve surgery.

Mine lasted about 2 months. I didn't get started as early as most people due to the intervening holidays and other issues. I think my first week was about 2-1/2 months post-op, back in late January.

My overall impression is that this is a must-do activity for all of us who have gone through a major heart procedure. There are several things that I felt were important for me.

First, I really wanted to get back to being active again as soon as possible, but wanted to do it safely. There's no place better than in a rehab environment to do this. They can watch your heart on the monitors for anything odd that you might not even be aware of. And they can pull you off the treadmill if something does come up. I think this part of it especially makes the experience very valuable. There's no practical way to do this type of monitoring on your own.

I also really appreciated having a place to go where I could talk about how I'm feeling and doing. Sometimes it was a place to vent about doctors, other times just frustrations about the slowness of healing or symptoms. Other times it was a very helpful resource to encourage me to look into various odd symptoms that seemed out of the norm or to provide me with information. So it was a sounding board, a place for advice and encouragement. It was also a place to talk to other heart surgery patients and compare notes and encourage one another. I found it amazing to see how fast some were recovering in just the short time I was in there. Guys who could barely walk who ended up going at a very brisk pace after 8 weeks.

Those two reasons alone are huge. But depending on where your rehab is being done there could be other benefits. Mine had a dietician come in and give us a free talk about healthy eating. I know some places have cardiologists actively interacting with rehab patients (my particular one didn't).

And the other way to look at it is, you ought to be exercising daily anyway. Might as well do it there.

I'm sad in a way that mine is now over but I'm also happy to be "moving on" with my recovery. I think I got some good information from them but now it's time to fly solo.

Anyway I wanted to post this for anyone who may be contemplating doing the rehab or not. If your insurance will cover it and it won't break the bank, I think it's well worth it, from my own experience.

I thought I'd update my journal here. I blog much more frequently at my personal blog (see link under "My Story" tab) but that one is a mix of weight loss and cardiac recovery "journeys". Here's it's all heart.

After reading a lot of stories on here and recollecting about what people at cardiac rehab have told me, I've decided to really finally embrace the "6 months to a year" timeline for normalcy (I'm at about 4-1/2 months now). Some people may define "normal" in a different way than for me. In some respects I'm already at 100% recovery in that I have no weakness, I can walk briskly and up stairs with very little or no discomfort. But when I try to return to running and my formerly very active lifestyle, I hit a wall. I feel tight in my chest and there is some soreness in my upper chest, almost like a throat pain. Apparently this is similar to the pains caused by angina, but I'm not supposed to be suffering from that. Instead I seem to be suffering from inflammation, either of the lung's pleura or the heart's pericardium or maybe both. I haven't had a real clear diagnosis for the root cause and I may never get one. But I've discovered in the past 2 weeks that taking ibuprofen, for me, is enough to knock it way back and give me a mostly normal feeling.

So I'm learning to just enjoy going for lots of walks. I can also do light weight training with no symptoms or problems. I'm transferring my focus from running to these activities and also to weight loss. I've managed to lose about 10 lbs I'd put on after surgery (I wasn't very active but still eating like an active person). That has been a big boost. I'm learning I can still focus on health goals that are motivating without it having to be all about running or cycling.

I think had this inflammatory thing not taken hold I'd be in a situation now where I wouldn't even think about the fact I'd had a surgery! Since they didn't go through my sternum, I don't even have any bone healing issues. I'm sure there are many people who have a valve repair who do feel normal in a very short time (and I'm guessing most of those people don't journal on this site). But there are also many who have after affects and complicating problems. That's why the rehab staff said the window 6 months to a year was more typical. I've even read where it can take up to 2 years for some people.

Having said all that, there are some lingering problems that need to be investigated when they pop up, and for me that's been breathing problems and this inflammation sensation in my chest. Only in month 5 of my recovery has anyone really treated me for this. I hate to be on high doses of anti-inflammatories but hopefully this will be temporary. I'm being monitored fairly closely now and having my CRP and other blood levels re-checked and that's the best I can do.

So my plan for now is to keep on top of this inflammation problem but go on with my health goals with the weight loss, walking and strength training. Everything is kept at a low level but it's still enough I believe to keep me healthy and reasonably fit (not to mention the endorphin boost!). I think I just have to not think about my problems ending anytime real soon and just try to get on with my life as much as I can and not stress about it anymore. As I say, I'm pretty functional now in most things. I have discomfort but it's being monitored and for the moment is manageable.

I'll check in again at my 5 month post-op and maybe monthly thereafter, in case this might help some other people out there.

I wanted to thank the people who are replying to my first journal entry. This is a really nice and helpful community. I've also been posting some support to a few others.

My situation took a big hit about 2-1/2 weeks ago as I got some type of cold virus that triggered bad chest and lung pains, trouble breathing (more than usual) and a day of AFIB. But the good news is I got over the cold and I've been taking ibuprofen to take down inflammation (my blood lab showed very high inflammation markers--I think they measure "C reactive protein" but I'd have to ask again). Now it seems like I'm actually doing better than before the cold. My resting heart rate has been going steadily down (got to 63 last night, a post-op record). And my breathing for the first time post-op has spells of feeling totally normal. I'm not ready to jump out and restart running yet because I don't want to reignite the inflammation and risk AFIB again. But I'm thinking, with luck, in another month or two this will be all in my past.

I've been optimistic before and been slammed down again with symptoms but this time I think I'm seeing true signs of improvement. I'm also seeing a spike of energy and feeling of well-being. I've even managed to lift weights at the gym like I used to do a year ago. My heart seems very strong, it's just this inflammation thing I've got to conquer!

I'd especially appreciate feedback from other runners but welcome all feedback on this.

Prior to surgery I had turned my life around by becoming fit and running many races including a marathon. I knew my valve was a problem but it was still at moderate regurgitation and I was told I didn't need surgery just yet and was free to pursue any activities. That changed last summer when it went to severe. I dropped my mileage and pace way back and prepared to go to the surgery.

I had mitral valve repair in Nov. 2013 at age 41. It was a robotic minimally invasive repair and from all indications it went very well.

I developed AFIB a few days after surgery while still in the hospital. I also had one of my vocal chords paralyzed for a few days, meaning I couldn't swallow properly or talk and had to be on a feeding tube for about 3 days (very fortunately it un-froze after that). Apparently I also had some pericarditis but it wasn't severe. I was put on amiodarone and that seemed to get rid of AFIB for two weeks, then it came back and I'd have it about every other day and it would last for 8 or 9 hours. My AFIB was very noticeable and really pounds away. I feel nauseous and a little light headed. I can't do much more than walk and I really just want to lay in bed till it passes. Anyway after a couple of ER visits and a big increase of my amiodarone dose, the AFIB stayed gone for 3 months. I only recently had one more bout with it after apparently getting a cold virus that moved into my chest.

On top of all that I've been plagued with bad breathing problems, some of which (maybe all) I blame on the amiodarone. My chest feels under pressure and inflamed many times. My trachea has felt squeezed and there are odd sensations like I'm breathing through a coffee filter. When I had the cold two weeks back I developed bad pains in my chest and left shoulder and couldn't sleep with it for 2 nights.

Anyway, my recovery has not been what I've seen other runners on the internet talk about. I thought because I was in good shape that in maybe 2 months I'd be back to at least a slow shuffle jog, but I'm not. Rehab wanted my hr kept to below 120 which for me precludes running. I get a weird pain in my upper chest and throat vicinity when my hr goes up beyond maybe 110. It's slowly going away but I still can't push it.

So I'm 4 months post-op now and still trying to get a bead on my recovery forecast. I'm told it is normal for recovery to take 6 months to a year, and I'm fine with that, but I'm just alarmed by all these weird suffocating breathing problems. I mean I know I won't be 100% for many months but I'm not sure why I feel at times like surgery was just a week or two ago instead of more than 4 months.

Losing running is a huge blow for me as any active person could relate to. But I think the harder thing for me is the not getting solid answers as to what these pains are. Somehow it seems like more than others are going through. The cardiologists just say things like "don't worry this is just part of recovery" but don't really refer me to anyone who can really help me nail down a root cause more than just saying that.

I've been off amiodarone for 3 weeks now and many nasty side effects have left. I'm still stuck with breathing and chest issues but they seem less (just not "less" enough to do more than a walk).

I'd really appreciate feedback from anyone who can relate to some of this, runner or not. I've also been posting to a health blog I keep at bertshealth.wordpress.com and started a weight loss and "cardiac rehab journal" type video blog on YouTube at www.YouTube.com/user/BertTheRunner
I like social media as a way to connect with others and find mutual support. Please feel free to contact me at those places too. Thanks.