BertTheRunner
Member
I thought I'd share my story here and would like to know if there are others struggling to return to an active lifestyle post-op.
I had my procedure in November of 2013. The valve was successfully repaired using a robotic technique at Cleveland Clinic. But almost immediately I began to suffer from some after affects that have still not subsided.
A few days after surgery I developed a pericardial effusion (pericarditis) along with an accompanying lung version (pleural effusion). I also had lots of AFIB (about 24 hours of it) until I got on some amiodarone (which may or may not have ended it). At the time I believe they felt these things would soon pass and it was nothing to worry about. But a few weeks later I had several new rounds of AFIB each lasting 8-9 hours and then a very bad pain in my left shoulder which got me admitted to the hospital (different one, a local place).
I don't want to bore you with too many details (there are a lot) but suffice it to say I've had major ups and downs with tightness in my chest, constricted breathing and smothering sensations, a recurrence of AFIB as recently as a month ago, and occasional pains resurfacing in my left shoulder (although not nearly as strong as in November). I've been through about 8 weeks of cardiac rehab, but symptoms such as a throbbing pain in my upper chest/neck area persisted throughout and didn't get much better (if at all) during that time. The rehab staff didn't seem to know what to make of it and there were no on-site cardiologists to talk to.
I've seen a new cardiologist in an attempt to get someone to address the ongoing situation but all that's really changed is I'm now on lots of ibuprofen to combat inflammation, since they saw my blood levels were off the chart.
Before all of this, I was a very active person, and I've had to learn to be essentially sedentary. I had a huge health transformation about 3 years back where I'd lost over 100 lbs, took up cycling and running and became a decent runner, really loving it. Now it's all gone. I'm struggling to get it back but I can't do much without risking symptom relapse (pains, AFIB and the rest of it).
Does this sound familiar to anyone else on this forum? Care to share your experiences? I feel alone with this. I joined another forum but other than one person (who seemed rather condescending) I haven't found a single soul willing to compare notes. In rehab the people were there after bypass or stint procedures and not valve. It just feels like I'm kind of on my own with these symptoms. The doctors can only give vague guidance and no forecast. My most recent cardiologist has said he thinks it's fine for me to run as much as I want as long as symptoms don't worsen during the run and I don't get into an anaerobic state (breathing too hard to carry on a conversation). But I'm finding it's hard to know my limits. The rest of my body wants to go and run 10 miles but the injuries in my chest say no.
Again, anyone out there? Thanks.
I had my procedure in November of 2013. The valve was successfully repaired using a robotic technique at Cleveland Clinic. But almost immediately I began to suffer from some after affects that have still not subsided.
A few days after surgery I developed a pericardial effusion (pericarditis) along with an accompanying lung version (pleural effusion). I also had lots of AFIB (about 24 hours of it) until I got on some amiodarone (which may or may not have ended it). At the time I believe they felt these things would soon pass and it was nothing to worry about. But a few weeks later I had several new rounds of AFIB each lasting 8-9 hours and then a very bad pain in my left shoulder which got me admitted to the hospital (different one, a local place).
I don't want to bore you with too many details (there are a lot) but suffice it to say I've had major ups and downs with tightness in my chest, constricted breathing and smothering sensations, a recurrence of AFIB as recently as a month ago, and occasional pains resurfacing in my left shoulder (although not nearly as strong as in November). I've been through about 8 weeks of cardiac rehab, but symptoms such as a throbbing pain in my upper chest/neck area persisted throughout and didn't get much better (if at all) during that time. The rehab staff didn't seem to know what to make of it and there were no on-site cardiologists to talk to.
I've seen a new cardiologist in an attempt to get someone to address the ongoing situation but all that's really changed is I'm now on lots of ibuprofen to combat inflammation, since they saw my blood levels were off the chart.
Before all of this, I was a very active person, and I've had to learn to be essentially sedentary. I had a huge health transformation about 3 years back where I'd lost over 100 lbs, took up cycling and running and became a decent runner, really loving it. Now it's all gone. I'm struggling to get it back but I can't do much without risking symptom relapse (pains, AFIB and the rest of it).
Does this sound familiar to anyone else on this forum? Care to share your experiences? I feel alone with this. I joined another forum but other than one person (who seemed rather condescending) I haven't found a single soul willing to compare notes. In rehab the people were there after bypass or stint procedures and not valve. It just feels like I'm kind of on my own with these symptoms. The doctors can only give vague guidance and no forecast. My most recent cardiologist has said he thinks it's fine for me to run as much as I want as long as symptoms don't worsen during the run and I don't get into an anaerobic state (breathing too hard to carry on a conversation). But I'm finding it's hard to know my limits. The rest of my body wants to go and run 10 miles but the injuries in my chest say no.
Again, anyone out there? Thanks.