Bert's Posts

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!