Ben Hyman posted a note for Bert that says:
Hello Bert,
I'm scheduled for a robotic mitral repair at Mayo Rochester in March. Where did you have yours done? Would love to talk with you sometime about your experiences
Lise Bowles posted a note for Bert that says:
Hi Bert,
I know it's been a long time since you posted below, but you aredescribing exactly what I have been feeling! I had robotic surgery for mitral valve repair on August 16, 2016 at Cleveland Clinic! The first two months post surgery were painful in the rib and back area so my cardio doc put me on a prescription anti inflammatory daily. At the end of two months that didn't hurt so much anymore so I decided to go off of it. That's when the pleural pain started up big time! I thought I was having a heart attack! I rushed to my cardio docs and after he checked to make sure my heart was ok he announced to me that I had pleurisy. He gave me some more anti inflammatories and told me I'd be fine in 7-10 days. And, I was, but for the last month I had it two more times, sudden onset, severe left shoulder and lung pain and almost screaming in pain it was so bad! I went back on the anti inflammatories until it ended, about a week. That brings me up till now, 4 1/2 months post op and the breathing pain is constant, not excruciatingly so, but always there if I breath deeply. I am now on colchicine, pulmonary doc put me on it, I've had 2 CT scans and they show pleural effusions in each lung, docs say small, and swelling around the pericardial sac. So now I take the colchicine and the anti inflammatory and I just generally feel like poop! The docs don't seem overly concerned but I am getting g depressed because I actually felt better post 2 months than I do now! Did you ever resolve this and if so how?
Thank you Bert, Lise Bowles
Ellen Leng posted a note for Bert that says:
Bert,
Saw your note on Corey's guestbook and wandered through your story. You have been through a lot.
My understanding is that some small number of people with Dressler's not only have inflammation, but also can get restriction of the pericardium (the covering of the heart) which can lead to a restrictive cardiomyopathy. I am not certain how "they" diagnose or treat this, but your story make me wonder, especially since, as a runner, you should have done really well with your rehab, and you are clearly motivated.
I can imagine that it's a bit hard to get care as typically doctor's don't really want to take on someone else's problem, so that makes it sticky that CC is giving you no attention.
I'll see if I can find anything about restrictive cardiomyopathy after Dressler's in terms of diagnosis and treatment and drop you a line later.
I really do hope that you get better soon! Ellen
Corey Sines posted a note for Bert that says:
Hey Bert, I saw your response to Natalie. I also see you are from Staunton, VA! My wife is from Harrisonburg and has family and friends in Staunton. Take a look at my profile. Often times MV repair can leave with some level of stenosis, which manifests itself with Exercise. Its important to have it evaluated properly, and the only way to truly measure your pulmonary pressure is in a cath lab and they will make you pedal a stationary bike while the cath is in to measure your at rest Pulmonary pressure vs Exercise/Activity Pressure. My Pulmonary pressure is just a little above normal (18 mm hg) at rest and activity (normal is 8-14 mm hg I was told), mine shot up to 45 mm hg with moderate biking. I suspect under hard running i have done it has been even higher. Usually they start with a Stress test on a Treadmill and a stress echo. Its important to have this done at the right facility. My local cardiologists missed this, but Cleveland Clinic detected it right away.
debbie mcguinness posted a note for Bert that says:
Hi Bert,
I think we are both members on the other forum, I did a search for you and I think I found you! the helpful and kind lady is my friend on there (Paleogirl) I couldn't have got through this without her support, try looking up Maisejane and that is me!
I am 12 weeks post AVR tomorrow, I have posted my story and placed posts but not since my 28th day for the same reasons as yourself, I am seeing my Cardiologist on Monday 12th this will be my 1st visit with her since my surgery, I only saw my surgeon for my post op review last week, he was really pleased with his work and felt the symptoms that I was experiencing was due to the surgery and the heart and Lung machine.
I am due to return to work this week on a phased return, physically I do feel ready, but I feel it may take me a while to get into it mentally!! bet I cant even remember my passwords and security codes to all the different systems we use !!!!
You are definitely not alone with feeling disillusioned by your medics, if you read the posts on VRF you will definitely feel comforted and you will get to know the other valvers who are there to offer their own valuable experiences, that includes you and me Bert.
stay happy and well and I will keep you informed of my appointment tomorrow.
As we say in old Cheshire "don't let the buggers get you down".
Deb x
Debbie Mcguinness posted a note for Bert that says:
Hi Bert,
I can relate to your experience completely!
Please don't give up heart (no pun intended)
When I was pre surgery, I read a lot of very positive forum posts, not only from this site, and it was a bit of a shock to me post surgery when my own reality set in, I felt something was wrong when I wasn't back to the capabilities of Miss Universe within 2 weeks! It was only when I used key words in the search boxes on the sites, that I found that others also experience similar "bumps" in their own recovery! Luckily I made a close contact who was feeling the same as me, and we both felt that maybe we were a little blinkered pre surgery by what we chose to read, maybe to protect our sanity regarding how major this surgery can be!
It is frustrating when you place a post, because if we are honest, we are looking for reassurance, and no one replies! But hopefully there maybe an individual who has read what you're saying, and has taken comfort, and has closed their computer with a feeling of hope! that they are not alone in what can be, a very frightening experience!
Take care Bert, and keep on posting!
Deb ☺x
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.
On May 9, 2014...
debbie mcguinness posted a note for Bert that says:
Hi Bert,
Just wanted you to know that I have read your post!
well done on your recovery and may you be back to full health soon.
It is frustrating when you experience a few bumps in your recovery but the experiences that you have gone through will be very reassuring to others who are concerned that they don't feel 100% fit straight away. xxx
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 ... Read more
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.
On March 20, 2014...
Patti posted a note for Bert that says:
Thanks for your honest assessment and continued improvement to you. Like you I had robotic mitral valve repair. Pre surgery on feb 20 I was physically active. I had no symptoms despite the stage 4 regurgitation. From both personal experience and reading posts by others, I have concluded the most active among us appear some of the slowest to return to "normal". This may be because we are the most impatient, or we set the bar unrealistically high or we fail to recognize and appreciate gradual improvement or nothing short of being as active as we were pre surgery is what will satisfy us. Thus it is sometimes easy to get discouraged as what appears lack of progress. To combat this I who am not a journalist decided to write a one sentence summary of the good and bad each morning and each afternoon. While this afternoon I may not feel any better, I look back a week ago and realize I am taking fewer pills, sleeping better etc. I expect to feel better each day; in my case that has not been the case. But I am getting stronger albeit at a pace I can't control which is teaching me patience. Sorry for the long vent, but I sense your frustration and hope I can remind you as others have done for me we are getting better after very major surgery. Why didn't they tell us taking a shower that doesn't require an immediate nap is progress ;-)
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 ... Read more
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.
On March 19, 2014...
Marie Mancini posted a note for Bert that says:
Hi Bert,
I was writing to you and it was a bit long and just as I was almost done I hit something to check a web site name and of course I lost what I wrote. So sorry for your problems and set backs.It's frustrating, believe me I know. I have two things to share with you that may help you and others.I was getting a fib again from time to time and after searching on line from a health site that said a lack of Magnesium could cause a-fib,so taking it could either help to prevent it or help to end it much quicker as I found out. Even with my low presser Metoprolo it would take 8 or more hours to calm down but when I first took a 500mg of magnesium with it,it calmed down it 20 to 25 minutes. None of my doctors told me magnesium could help if or when I get any A-fib attacks after my surgeries.Nice.
Next is I searched the net for health info. recently to find something to help with my OA pain in knees,hips and back that had seemed to be getting worst. I found a site read about an amazing enzyme called Serrapeptase and testimonials from so many people with so many health issues who have gotten so much relief. It an enzyme that goes after and gets rid of inflammation throughout the body. All kinds of inflammation that causes pain,stiffness breathing problems and helps with so many issues people have wrote about that they suffered with for years and now are quickly getting amazing results. So don't leave it all up to the doctors,do some research and check this out for yourself and maybe family and friends.Serrapeptase, I started this two days ago and the first day I got up without the bad pain that bent me over till I took a pain pill and did my stretches on my bed to loosen up, but my pain was getting worst and causing me to start worrying about my future health.Day 2 still woke up better so much less stiffness and pain especially in my spine. So check it out and read a lot about it. There are also videos of people talking about it as well as Nutritionists explaining where it comes from and how it works etc. Hope this helps you. Be Blessed.
Even if you can't get your HR up above 110 or 120 bpm you can still walk up a storm.
The moderate stress will accelerate healing.
I think Clare has it right. At some point you'll start a shuffle and a little jog. But it may be that you have to reach a certain threshold first, and I'd hazard that you can get there by walking miles a day.
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 ... Read more
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.
On March 16, 2014...
Jo Beckett posted a note for Bert that says:
Happy to share Bert, jobeckett1@gmail.com. My advice would be to keep a constant check on inflammation markers and treat with at least ibuprofen if they are even a little out of normal range. Another person on this site whose entries would be useful to you is Julie Voyzey, she had similar problems - you can put her name in and search for her. All the best
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 ... Read more
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.
On March 15, 2014...
Jo Beckett posted a note for Bert that says:
Hi Bert, they diagnosed post pericardiotomy syndrome after they caught a very small amount of fluid around the pericardium. A few days earlier or later and they wouldn't have caught it as it wasn't obviously there. This was by echocardiogram. I was in hospital at the time for a bout of SVT (heart rate 180). Sounds to me like you have all the symptoms. It is really important that you get inflammation under control and knock it out. Ibuprofen worked for about 3 weeks but I needed steroids to really knock it off and I now feel 100 percent. Main symptoms were high heart rate, average around 90 to 110 post surgery, pleural effusion, small amount of pericardial fluid at one time together with terrible left shoulder pain one night and feeling basically unwell. The cardiologists didn't really want to acknowledge this syndrome and it was my general practitioner who had to persist on my behalf. Look up the syndrome on the internet. Inflammation is expected to be high for the first week after surgery only, then come back down. Anything after this is attributed to post pericardiotomy syndrome. So important that you get the inflammation down and staying down. All the best.
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. ... Read more
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.
On March 15, 2014...
Joe Kusiak posted a note for Bert that says:
Hi Bert,
I can not speak to your surgery but I had my aortic valve replaced 8/2. I think it was around 8 or 12 weeks I started my rehab and they kept my heart rate down as well but before long I was working out at a HR in the 150's. I still do now some of that is running but I am not a runner per say. In my case I have much more energy now and can do more than I have in many years. I suspect when you hit your turning point you will as well. I am certain your running will only improve just be patient.
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 ... Read more
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.
On March 15, 2014...
Jo Beckett posted a note for Bert that says:
Bert, have you had your blood tested for the markers of inflammation? This is how we are monitoring how much treatment I need. I too had pleural infusions.
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 ... Read more
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)?
On March 14, 2014...
Jo Beckett posted a note for Bert that says:
Hi Bert,
My left shoulder pain, throat constriction etc turned out to be pericarditis. I was originally pt on colchicine and Nurofen only for it to come back after 3 weeks. I was then put on prednisone as well as colchicine and 4 months later I am nearly off it and I feel fantastic. I am 6 months post surgery. Pericarditis or more correctly post pericardiotomy syndrome can make you feel incredibly ill. I felt inflamed, I no longer feel like that at all. Some Dr's don't believe in this syndrome but I have had it and I know it is real. Some peoples immune systems, like mine, fight a little too hard and turn against themselves a bit. This syndrome isn't confined to the hear, it can also effect the lungs. It is just inflammation really.
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 ... Read more
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.
On March 14, 2014...
Clare posted a note for Bert that says:
I have done seven half marathons and a whole before I found out I had a valve problem in Nov. My surgery was full, open heart surgery on 1/9. I am just over 2 months into recovery. I am a 46 year old female. I walk 2 miles every day and have slipped in a 1/8th mile slow, slow jog for each mile I walk. The jog does get me breathing harder but not too bad. Still can't wait to be able to run a mile. There a other runners on here. I hope someone can help you. Keep us posted.
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% ... Read more
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.
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I'm scheduled for a robotic mitral repair at Mayo Rochester in March. Where did you have yours done? Would love to talk with you sometime about your experiences
Ben Hyman