Bert's Guestbook

Bert Herald  Thanks for the kind post Deb.

How long has your recovery taken? Do you have a journal on here as well?

I've tried to network via rehab at my local hospital and on 2 sites online. Unfortunately the folks at my rehab all had different procedures than mine and were recovering very rapidly. Online, I found another site with a couple of people who had similar long recoveries to mine, and that helped a little bit, but I get the sense that when I post about struggles the response from others seems to be mostly one of criticism, like it was my fault for not getting better care from doctors or speaking up enough of whatever! In other words, I think people only want to hear the happy/joy junk and not reality, usually.

I did find a very supportive and kind individual on the other site but once again she had a different procedure done and has different symptoms, although is similar in terms of a prolonged recovery that nobody predicted.

If you go to any of the major hospital or medical websites and look up mitral valve repair surgery you'll find almost exactly the same verbage about recovery, something about ~8 weeks (slightly longer with full open-heart because of sternum repair) and you're "even better" than before! I don't even know if this timeframe is really the norm or not, but even if it is, there ought to be a HUGE disclaimer about those with prolonged recoveries and side-effects from this. For some of us the surgery leaves us somewhat devastated for many many months, maybe years. I feel far worse than I ever did pre-op. I accept the argument that the surgery was necessary and things would have quickly gone downhill for me without it, but I had no way to deal with this unexpected aftermath. There were no real guidelines from anyone and no timeframes.

Once you're outside of that cookbook explanation given on the websites, you're on your own, and I feel that the medical establishment doesn't want to really deal with you anymore either. I've had to really fight to get anyone to address the symptoms I'm having. The line is that everything is fine with me from the various scans, when in reality I'm having terrible problems with inflammation and breathing all the time! So from their perspective I'm just some whiner I guess and I need to shut up and "recover". I've never been so frustrated in my life and I've really taken a more dim view of the medical system after all of this.

Bert Herald  Thank you Debbie. It's nice to think that some might get some benefit from these posts but given the general lack of feedback I'm not sure. I got some feedback from my first post but then it mostly went away.
Originally I thought I might be able to network with some other valve surgery patients that were also having tough recoveries. But it hasn't quite worked out that way. But thanks for your comments.

Bert Herald  One of the reasons I've had my health blog for over a year is that it does help a lot with reflection. We get caught up in our daily frustrations with recovery and can't always remember how things were a month or two ago. I started it as a way to track my running training and goals as well as weight loss, but now it's been a big help with this.

I think it's also important to realize when things might not be part of a "normal" recovery and get a checkup if things seem like they're not improving at all over many weeks. Not all doctors and specialists are the same and some listen a lot better than others. I wouldn't automatically accept the statement "that's just part of the recovery" if you think something is really off. In my opinion they should at least make an attempt to determine your current status with scans and blood work, etc. It could very well be that some of these things aren't severe enough to warrant medication or a procedure of some sort and they will heal in time. But in other cases more is needed. I've been finding that for myself it has been a real learning experience sorting out what is "part of the recovery" from what might not be. Everyone's situation is a little different too and I think sometimes the doctors aren't sure what is going on.

Anyway I wish you luck, keep journaling and hopefully we'll all soon be feeling great again.

Bert Herald  Definitely "walking up a storm" and have been throughout (I was walking laps around the hospital the day after surgery). But until I feel like this inflammation thing has subsided I won't run again. Ibuprofen lately has been helping a lot and I'm still following up with the doctors to see what's next in that regard. I'm trying to take the long view and realize I may feel poorly for many more months but I hope I can manage the symptoms better from here on out either with ibuprofen or other drugs.

Bert Herald  Thanks again. I'm going to keep hounding the medical community until I can get some relief from this. Ibuprofen has helped more than anything else other than maybe just getting off of amiodarone. We'll find out what my inflammation level is in a few days and take it from there. I did leave a note with Julie as well.

Bert Herald  Thanks for all the great info Jo. I have been meaning to ask if you have an email you'd feel comfortable sharing? Your situation does sound very similar.

What is the matter with the cardiologists? I had a guy put me on colchicine for 2 weeks or so back in December after seeing blood results showing inflammation. He thought my symptoms also sounded like pericarditis. But then when it ran out, I didn't see him till 3 or so weeks later and he wasn't interested in keeping me on it. When I did see him again, he didn't re-check the inflammation! I didn't understand the reasoning. So I've been on nothing but Amiodarone for most of this post-op (and it looks like I should have been taken off that drug sooner, in December or so, especially had I been on Anti-inflammatories).

Like you my primary care/family doctor is the only one seemingly trying to really help me with this. Seems like the surgeon did a great job but after that I've been almost on my own with this syndrome.

I'm not totally sure it's what you have though. Mine hasn't been visible to them even with a CT. And supposedly it can be seen via EKG. But this is where the fact that I'm not a doctor comes into play and I don't know what the exceptions are (like maybe it can't always be seen, etc).

My HR was also never so elevated. And the colchicine didn't seem to do anything for me back in December. However, the ibuprofen I've been taking following my big relapse 2 weeks ago HAS helped me a tremendous amount. My resting HR has plummeted to 56 and it used to be in the 70s post-op most if the time (and I was on amiodarone which lowers HR). In fact, even at my top fitness in 2012, my resting HR was barely lower than this. So I'm wondering if the benefit from surgery is trying to show through in spite of these inflammatory problems? I'm certainly not as fit now as in 2012.

I'd love to compare notes with you more if you're up for it. It's so hard to try to describe all this to a doctor who seems to not be familiar with it or to cardiologists repeating the mantra "it will take a year" and doing absolutely nothing to help me! It's clear things are out of whack with the system when I can just pop some Advil on my own initiative and feel a million times better! Anyway, thanks again. I'll be passing your story along to my doctor on my next visit too.

Bert Herald  I have noticed energy and concentration improvement. But the inflammation and breathing problems I've had have kind of overshadowed everything. I'm looking for that turning point & trying to get help with the inflammation to get me there.

Bert Herald  Yes but it's been spotty. One electrophysiologist measured it back in late Nov after my hospitalization, but then paradoxically didn't re-measure when I saw him again in January. However, my primary care doc did measure it just last week and it was actually much higher than the late-Nov number! Given that I had symptoms of a cold a week prior, she was going to let me go 2 weeks and then re-measure the marker. If it's still high next week, she wanted to do another CT scan to look for the cause. I'm reluctant to do CT because I've had about 3 of them since late last year and they're a ton of radiation. But it seems like nothing else can really get at the fine detail to "see" what's happening in there (at least my impression).

My use of anti-inflammatorys has also been off and on. That Nov doc had me on some for about 2 weeks after my big round of AFIBs, then when the 2 weeks was up it was discontinued and never re-started. It seems clear to me now with the ibuprofen that these drugs are helping in a fairly big way. But the cardiologist types I'm seeing now seem to just disregard what's happening to me. Only my primary care seems to be trying to help (she suggested staying on ibuprofen). It's frustrating as I'm sure you can relate.

Bert Herald  Jo -- curious, did you go through CTs to indicate yours? How did they know it was pericarditis definitively (or did they)?

Bert Herald  Thank you Jo. I too strongly suspected ongoing pericarditis but a CT scan, EKGs and several echo's (including esophageal close up one) didn't show them I had it. I may have had it the first week after surgery but apparently it either subsided or became too small for them to detect, I don't know which. They did see two pleural effusions, one with each lung, about one month post-op, but again they were classified as being vey small, and they couldn't even drain them.

The thinking now between my various doctors is that I'm still left with the effusions, and things like getting ill will make them take off and flare up in pain. The effusion pain is very similar to pericarditis symptoms I guess, with the referred shoulder pain and so forth. Taking ibuprofen for me seems to be a huge help for the last week I've been doing that. But I feel like I swell like a balloon if I try to do more than a brisk walk, so still holding back.

Bert Herald  Thanks Clare. You're doing great it sounds like. Much better than me a 2 months! I know there are a few stories out there of people returning to almost 100% normal after just a couple of months and some are even a lot better than they were before, at least with the valve repair surgeries. Of course I wanted to be a part of that club too and my surgeon thought I would be, but I got stuck with (I guess) either pericarditis, pleural effusion problems, or just really bad amiodarone side effects. I'm thankful of course to be alive and that I avoided so many other terrible complications like stroke. And I'm amazed at how they can go in and fix hearts like it's no big deal. Just trying to sort out my expectations and symptoms now is all.