Susan's Posts

Hello heart valve community and Adam. I'm wondering if anyone has had, or knows of someone who has had, diaphragm/phrenic nerve issues after heart valve surgery? I've had a mysterious complication since my surgical AVR on 5/5/23. I had some minor complications shortly after my surgery but then was progressing nicely in cardiac rehab. I was able to increase the intensity of my treadmill work outs and was able to lap swim for 45 min once a week for about 6 wks. Then about 3 mo after my surgery, I started to experience severe shortness of breath (SOB) for hours/days after my workouts. I scaled back my workouts, but still kept have severe SOB episodes, even at rest, and during the night. I had about 6 wks of absolute hell where I couldn't sleep or breathe. I went to the ER several times and my cardiac work up was normal, including Echos. I have Graves disease and my thyroid was overcorrected w/ the medicine so it was low which can weaken respiratory muscles including the diaphragm. My endocrinologist stopped the thyroid med and my thyroid levels went back to normal. The SOB episodes improved somewhat and I thought it was behind me. However, several weeks later, the severe SOB episodes have re-occured despite normal thyroid levels. I am seeing a pulmonologist who ordered a half dozen tests to rule out other things which have come back more or less normal (no evidence of chronic clots in my lungs, no interstitial lung disease, no pulmonary hypertension). My pulmonary function test was within normal limits, but the strength of my inhalation may be lower than expected for me. I did a sniff test to look for paralysis of one side of my diaphragm (which can happen if the phrenic nerve is damaged during open heart surgery), which was normal, but it doesn't tell me if my whole diaphragm is weak. I saw a neurologist and got a test to rule out terrible neuromuscular diseases like myasthenia gravis and ALS which was normal. I read that even short periods on a mechanical ventilator and receiving paralytics for surgery could weaken the diaphragm and cause atrophy -- anyone aware of this? My cardiologist, pulmonologist, neurologist, and endocrinologist have no idea what's causing my severe symptoms. I am getting desperate. I am not able to even walk a block at a normal pace without getting winded and it sometimes triggering severe SOB episodes. I can't lift grocery bags or laundry baskets bc it triggers SOB. Before my surgery, I was running 6 miles, 3x/wk and lap swimming. I've resigned myself to possibly never being able to do those again, but I just want to be able to walk at a normal pace and do normal activities. I have two teenaged daughters and I really want to be a healthy mom for them...If anyone has any insights, I am desperate for them. Thank you! Adam, if you have an insights from all the heart surgeons you've talked to, I would REALLY appreciate it.