About Me (In My Own Words)
I was diagnosed with Mitral Valve Prolapse over 30 years ago, was told to go about life, no restrictions, keep an eye on t etc. Some time ago I believe that one of my echos even showed regurgitation, however; no symptoms, no treatment. On Friday, August 4, 2017 that all changed, I worked out before work like normal (about 2- 21/2 hours in the gym of which over an hour is cardio), went to work, came home and prepared to play my bass drum with the boys from the NYPD Pipes and Drums at a wedding. I played and thought to myself, "am I out of breath ?". The feeling seemed to pass and home I went. Off to bed, seemed ok until I awoke only a couple of hours later with shortness of breath that continued through the night not allowing me to get any real sleep. Woke up the next day, shook it off, showered and went to my Lodge to help out at a fundraiser. Felt weak and tired but attributed it to no sleep but also was achy. End of the day I helped move a cooler 30 feet and was again out of breath and exhausted with aches throughout my back. Went home, shook it off again, had dinner with my wife, fell asleep watching TV just like normal. Went to bed and a repeat of the previous night's sleep activities occurred. Exhausted on Sunday morning when my wife got up she said, we're going to the doctor. I agreed to this since our doctor is open 7 days a week and I like our primary physician. As luck would have have it , when we arrived there was a handwritten sign on the door asking patience as they needed to close that day. My wife looked at me and said, "no what ?" I said "you decide" knowing (and hoping by this point) damn well that she was going to the ER. Once at the ER, I was thinking I would maybe get a nebulizer treatment and sent on my way, maybe some antibiotics. Upon examination and me giving history, including my MVP and the fact that recently at least 2 doctors had said that it was barely audible anymore, the ER doc listened and said, "you have a very loud murmur". An ER sonogram later showed significant leakage and I was being admitted so that I could have a complete cardiac workup in the morning. A chest X-ray and CT scan after that, and I was diagnosed with multifocal pneumonia yet still admitted for the cardiac workup. The next day I met with cardiology, had an echo, which led to a TEE, and their diagnosis that I had no pneumonia (no elevated white cells, no fever, not sick, no cough, etc) and that the fluid now gathering on my lungs was all due to my valve which was now torn with a flailing leaflet and significant to serious regurgitation. A back and forth battle between the medical and cardiology teams about the pneumonia led to full treatment of antibiotics for pneumonia but a meeting with the cardio thoracic surgery team to schedule surgery to repair my valve. So after more than a week in the hospital, off to surgery I went with the thought that it would be a 3-4 hour repair surgery of my Mitral Valve. Here is today's journal entry to add to my story; Today marks one week since my surgery. I came home yesterday feeling pretty good and now getting used to the idea that just because I'm home doesn't mean I'm necessarily better. While I am progressing each day, there are symptoms that pop up each day that immediately remind me that I had my chest cut open and that I need to take it easy and mend slowly.
As It turns out, my surgery was more complicated than we thought and way longer than we all thought. In total I was out for almost 23 hours and the surgery was about 10 hours. Dr Chikwe is amazing and she never gave up. Not only was my Mitral Valve way more complicated(her words) , but it turns out that while she was in there, my Aortic Valve was also damaged and leaking significantly. While many surgeons would have simply replaced both, she repaired both of my own valves, so I got a two for one deal.
As for me, i was asleep so i didn't know any of this until some time later. It added an extra day in the ICU, but other than that, she says I'm doing fantastic. As far as some of the things that were giving me anxiety going in, I'll just comment to give others some piece of mind......maybe. First of all, as a guy, we all worry about that damned Foley catheter. Ends up being no big deal, most guys have probably done worse to themselves during adolescence aggressiveness than this silly thing coming out. Next, the breathing tube; I was totally freaked over this thing and heard horror stories of others who were trying to pull the tube out etc. For me, my son who is a paramedic and spent the evening before with me, could see that it was freaking me out and offered these kind words that repeated over and over in my head as I began to wake up. He told me not to freak out, it's just a hollow tube, and most importantly "you can breath" so just relax. As I began to awake , I motioned that I wanted the tube out and they said something along the lines of " okay, we're gonna get that out in an hour or two", at first I was like , "AN HOUR OR TWO ! are you freaking kidding me ?" Then, realizing I had no real control over this situation, I just laid back, pressed my hands into the bed, and listened to my son's voice in my head. Somehow, for me, it was very calming, and before I knew it they were taking it out. Next on my hit parade wasn't something I was pre-concerned about, but something that had them "concerned". Turns out my speech was all screwed up, I was slurring, lisping, being deliberate and slow. This continued for quite a while and my family was initially freaked out by it as well. When they asked me to sick out my tongue, it was going off to the side. All signs of stroke. All I could think was, great, I make it through this surgery and now I've had a stroke !. Long story short, everything came back fine, just real slow and probably due to the fact that I was out for such an extended period of time.
The rest of the ICU and step down process was slow and steady, each day something new came out of me, a tube, a wire, an IV, etc. It's truly amazing to me what they can do and how they can do it. The chest tubes feel a little weird coming out but no pain and the wire into the heart for the temporary external pacemaker again felt weird, but no pain and all these things are relatively quick. Done before you know its being done. Now to the step down and post cardiac floor. Things moved quick and I was feeling pretty good. Was able to get myself, up and around, in and out of bed, stand to use the urinal etc. All in all, everyone I saw, said I looked great and that I was doing fantastic.
So, now it's time to go home. Got home yesterday, left in the middle of the solar eclipse (there's a memory). My wife had rented a medical power recliner for me and gotten thing ready for my return home. At first, all was good, I'm thinking, "we're gonna go for a walk today". Well, I was wiped, trying to find comfort in my new chair, got a bit cranky, even snapped at my wife a few times (I wish I could take that back) and when it was time for bed, never got 100% comfortable, either in position or breathing, and only managed to sleep until about 4AM. Then it was out to my new chair, some re positioning and another 4 hour nap or so.
What surprises me most is that I'm so stiff. Not real painful but really stiff, especially in my shoulder blades, right side being worse. I guess since I wasn't feeling this too much in the hospital, I got a false sense of confidence that this was going to be a breeze once I get home. After a short pity party, I'm getting used to the home recovery process and okay with the fact that this is going to be a slow process. My wife is gonna pick up a wedge for our bed, hopefully that helps at bed time I'm getting a visit from the home nurse shortly, gonna get washed up, go for my first walk later and begin my home recovery, Day #2. Last bit of good news, I had a pretty good bowel movement right before bed, this too was concerning me because what actually did come out at the hospital, was nothing to write home about and felt like a stuck stone. Anyway, this was an oddly comforting thought as I attempted sleep in my own bed for the first time in 2 weeks. One last word about pain, its not that bad, I mostly am just using the Tylenol, and only occasionally using the Oxy that they prescribed. That's my story for now. Until my next update.
Today is 8 weeks out post op. I returned to work last week, have been going back to the gym 3 times a week and gotten myself back up to 1 hour on the elliptical machine with a 10 minute cool down each time and remaining cognizant of my heart rate keeping in the 137-138 average BPM during those workouts. I still have some residual soreness from time to time in my shoulder, arm, breast area but that is subsiding more and more as time passes. I even managed to do some yard work last weekend consisting of weeding, filling water bags for the pool cover and some brief use of a chainsaw. Mt doctors have said that I can begin to surpass the 20 pound lifting limit in about 2 more weeks or so. My surgeon has cut me loose, reports all is great, and my cardiologist has said that she doesn't need to see me again until February or so. She had said that the murmur was completely gone and that my healing of my sternum and overall progress was fantastic. I still don't feel 100% like the old me, but I'm getting there and I think I'm getting pretty close all things considered. Still get that fear and dread every time there is a twinge or crack or pop or if I even get slightly out of breath (after exertion , of course), but that's just anxiety which is also fading with time. Summarily, I'd say I think I'm happy the way things went and continue to progress.
More Info About Me & My Heart
More About Me
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I am from:
Ronkonkoma, New York
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My surgery date is:
August 15, 2017
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I was diagnosed with:
Mitral Regurgitation
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My surgery was:
Mitral Valve Repair
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My hospital is:
Stonybrook
