Joseph's Journal

Achievement unlocked. 16.0 a month after surgery, now 26.1. Finally out of the "low" range.

Home from the hospital exactly six months ago from my mitral valve repair. It's been mostly good and the small annoyances are fewer and fewer as time goes by.

The Good
- I feel good every day;
- I sleep well;
- Reinvigorated practicing faith;
- I can go on long walks whenever I want;
- Hills and hiking are not a problem;
- My vitals are stable;
- Zero AFib.

The Stuff that Needs Improvement:
- I would like to get stronger and increase exercise capability;
- If I go too hard, it takes more than a day to recover and get back on the horse;
- I gained weight (not terrible but more than is acceptable to me) and that's totally on me;
- Though my BP meds are getting it done, I would rather not be taking them;
- I have some periods of blahs that I did not have before surgery;
- I used to get ocular migraine auras once in a blue moon but I get them every couple of weeks now. They go away fast and I never have any pain or burdensome symptoms so it's only a mild annoyance.

The entire experience, with a caring cardiologist, a fantastic surgeon with great robot experience and outstanding hospital staff really couldn't have gone smoother. I spent only one extra day in the hospital (and really not "extra" just short of my goal) because my heart was not pumping as well as they wanted, but within weeks, my numbers were in the normal range. My experience with anticoagulants was unremarkable and I'm done with those. My BP is completely under control on low doses of medication, and my heart rate is well within normal ranges both awake and asleep.

This group made everything easier, both from learning and support perspectives. I can't thank everyone who helped me enough.

I still have lots of work to do on physical capability. I want very much to increase strength and endurance but those were things I neglected so I'm probably at or slightly above my baseline form before surgery. I guess moving up from here is the hard part.

Onward.

If anyone wants to see the before and after of a great robotic surgery, here's my MV repair of a prolapsed posterior leaflet with a ruptured cord, and two anterior leaflet ruptured cords. Pretty amazing how far we've come with surgical techniques and exec

Here's an idea of slope and terrain. Probably should have brought a buddy.

First hike in quite a while. Just under 1,000 feet elevation. Three miles, rough terrain.

Exercise question

Full disclosure: I was not a regular exerciser pre-surgery and even when I did, I did not monitor heart rate so I have no baseline to work from.

When I do my workout, I'll start with a heart rate around 80 (resting is lower). In a 40 minute treadmill walk (3.4mph with increasing incline) I'll gradually increase to around 115-119bpm in about 14-15 minutes. Then, invariably, I jump to the 135-140 range where I remain for much of the remainder of the workout, decreasing a little as the inclines decrease into the conclusion. I don't get short of breath or lightheaded, but I do feel the increased rate. My recovery when I stop is 30+bpm in the first minute and increasing recovery thereafter.

My question is this: Is the jump up in heart rate typical or should the increase be more gradual? It's the jump from 119-139 almost instantaneously that makes me curious.

Warm enough to hit the outdoors today. Two miles in under 32 minutes (average 4mph), no running, just brisk walking, flat course. HR hit 144 toward the end but no problems with that and got a 35bpm recovery in one minute so we're moving along. Three more days of warmer weather before we get colder so easy walk tomorrow, brisk on Thursday, and easy on Friday is the plan, body feedback willing of course.

Saturday is day 60 from surgery.

Exercise question (57 y.o, weight is normal, resting HR 70+/-)

I have been walking on treadmill for weeks (1/12 surgery, started walking daily for 30+ minutes/2 miles within three weeks and added incline as things progressed). I'm up to 40 minutes with a ladder of inclines up to 5.0 degrees. I was very deconditioned prior to surgery so assume I am starting from zero.

Whenever I try to add speed, even on an outdoor flat surface, my heart rate goes way up very quickly. Today I tried a light jog on flat surface and in less that two minutes my HR was over 150. I transitioned to a walk and HR got to 120 pretty quickly. Resumed jogging and within a minute was over 150, then into the 120's on walking. Rinse, repeat. Finished first mile in 15 minutes, walked a second mile in just under 20 minutes.

Would love to hear about others' experiences with jogging and whether when beginning to jog, if heart rate experiences were similar.

Had an uneventful post-op appointment today and so far it looks like everything is going well. He's pleased with the progress made to this point, the level of exercise I can tolerate, and the healing. Uneventful medical appointments are great but they leave very little to write about.

FOR PEOPLE ASKING ABOUT COVID VACCINES
I specifically asked about the COVID vaccine and his response was to go ahead and get it - nothing about surgery or recovery indicates that I should wait or avoid it. So I am going ahead with the vaccine as soon as I can register.

Update after post-surgical echo. Surgery was 1/12/21, released from hospital 1/16/21.

Echo on 2/18/21
Left Ventricle: Size normal (was enlarged pre-surgery), function normal, ejection fraction 54% (up from 47% when discharged from hospital).
Left Atrium: Size normal. (Rubs eyes) Really? Was significantly dilated pre-surgery so YAY surgeon. Best news of the report.
Mitral Valve: Mild eccentric regurgitation. Conversation: The variable here seems to be "eccentric" as that is harder to characterize mild/moderate. But taken in conjunction with the left atrium returning to normal size, it seems apparent that the volume of regurgitation is not significant, otherwise it is unlikely that the left atrium would decrease to normal size.

The right side of my heart is fine. The only issues were left side.

Walking every day on treadmill (hate winter) 40 minutes, 3.0mph, inclines up a degree every three minutes to 4 degrees, stay at 4 degrees for 6 minutes, then down 0.5 degree every three minutes to the end. HR tops out at ~135bpm, recovers under 100bpm in one minute and to 90bpm in three minutes.

Concerned about the BP going up, which it seems to have done steadily over the course of about a week. Over 130 on the systolic and around 90 on the diastolic is higher than I want and I was in the 115/75 range for quite a while so this has to be watched. It's possible that I have eaten too much salt lately (wife made delicious pork carnitas the other night and I might have eaten some corn chips with them, too).

I am dealing with the perils of being a control freak, type A, and intellectually curious patient. This is honestly the roughest part of my recovery. I always want to know why things are happening, why this treatment is recommended, and what to expect. So when the BP goes up, it concerns me. When I get a pain in my chest (usually at night and really mild), I want to know what and why right away. I had really loud, forceful PVC's pre-surgery so I know what they feel like. If I get a random PVC, I perk up and become hyper aware (I know I shouldn't but I can't help it). I am fortunate to have a cardiologist who indulges my questions and gives clear answers to my questions.

Also dealing with two hospital systems: Cardiologist is with my local hospital but the surgery was done in a different system and they do not share the same records portal. It's amazing to me that my cardiologist doesn't have my echo images from the OR, and the two echoes that I had done in the hospital, or the operation report. So I've taken the bull by the horns and ordered my complete record so I can give it to him. It's always something, right?

Even with the hiccups, which are minor, I am very pleased with how things are going. Only a few instances of feeling under the weather and, honestly, these were mild episodes that seemed much worse because I'm a scaredy cat sometimes. I feel good almost every day and have no pain, I sleep through the night, I eat fine, and I walk every day. It's far better than the alternatives.

See Moussa's post below mine. Similar question. Pre-MVr my BP was controlled by a very low dose of amlodipine. After surgery surgeon switched me to metoprolol and lisinopril. BP was really stable around 115/75 for weeks. Last two days it's up around 135/90 seemingly out of nowhere.

Obviously I'll get in touch with cardiologist but wondering what the experience here is.

Here's the hill. A good day for a walk (bundled up of course).

One month post robotic mitral valve repair I wanted to try the neighborhood walk up the hill that I could not climb without a break pre-surgery. About nine stories according to my watch.

Made it around the block without stopping on the 1.2 mile walk (I've been doing 1.5 on the treadmill but no inclines). There are three hills: the long steep one to start (maxed at 159bpm), a medium hill after the downhill side (133bpm), and finally a hill back to the house to finish that is medium for about 0.2mi (148bpm). Recovered to 96bpm in three minutes. 100% not doing this tomorrow and instead will take a leisurely treadmill walk.

No pain, shortness of breath, or dizziness. We'll see how the rest of the day goes but feeling good.

In my third week home from January 12 surgery, January 16 discharge, I am fighting the winter blahs and the ups and downs of recovering from heart surgery. I committed to not pushing too hard with the walking and every weekday (M-F) I walked for 30-32 minutes on the treadmill at 3.0mph. Heart rate high was 126, one time, and really hovered around 120 for the high. Rate recovered to 100 in three minutes and then back to normal a few minutes later. I felt good with no shortness of breath and no fatigue afterwards. I would love to try an outdoor walk but the weather is miserable in Connecticut.

My resting heart rate is lower this week, sometimes settling in the 70's but, oddly, slightly higher during sleep this week (65-75). My INR has settled into a consistent sweet spot and I'm on 3mg of warfarin daily.

Saturday was interesting. I attended the same Mass that I went to last week and saw some of the same people who said I looked much better this week than last, one of them going as far as to say I looked pretty awful last week. (Remember that last week I went way too hard on my Friday walk and had a rough weekend.) So I took that as a positive. When I got home we had a package for a neighbor that was erroneously delivered to our house. I decided that I would deliver it, not remembering that the driveway for the neighbor was long and uphill. I was pleased to navigate it, along with three sets of steps to the front door, without any problems. This was my first real uphill and it went fine.

I have annoying chest pain this week. It's annoying because any chest pain after heart surgery is disquieting. But it's pain in the straight line from my incisions to my heart and the muscles along that route are more firm and irritated than on the other side. So while pain is bothersome and causes worry, when I think about it and know that my vitals are fine, I realize that I'm just healing.

Taking Sunday off from exercise and just trying to sit back and enjoy the ride. I sit and wonder just how long it's going to be before I feel like my old self every waking moment. I am grateful for my recovery to this point but I know I have a while left on this journey. I need patience and I know that this is going to take a lot of commitment and discipline.

Week 1 (January 18-24)
Sleeping better every night. No issues whatsoever with the incisions and only mild, uneventful maintenance of the chest tube incisions. Only need Tylenol at night. No real exercise yet, just walking around the house. Appetite good and I get by on one nap per day. I did a (remote) court appearance (I am a lawyer) and it went fine. Getting in a couple hours of work at home makes me feel normal and productive.

First appointment with cardiologist went well and anticoagulation clinic is a piece of cake.

Week 2 (January 25-31)

No more dressings on my chest tube incisions. Decided to get on the light exercise train this week. Walked on the treadmill on Wednesday, Thursday, and Friday. But I pushed it too hard on Friday (40 minutes at 3.5mph - heart rate 155) and I felt pretty wiped out the next day. So I took the weekend off walking to recover and felt better on Monday. Still able to work, make remote court appearances and get in a solid four hours of productive work time. Got back on the treadmill yesterday (2/1) and committed to no more than 3.0 mph and no more than half an hour. Heart rate topping out in the 120's and recovering quickly. That's the maximum we will do this week; slow and steady.

How will this progress? Well, I have an echo on February 18 and a visit with my surgeon on February 26. I feel like it's all going to be good. I feel a little better every day and am forever grateful for the expert and compassionate care I received.

So sorry for the long posts but I wanted to give a good diary of things. Anyone who wants to know anything about my experience, ask me anything and I'll do my best to answer.

Saw my surgeon again on Saturday morning. He was happy with my progress and said I could go home. Did I want an echo before I left or as an outpatient? I opted to do it in the hospital because I wanted some peace of mind with that pesky ejection fraction. So we waited and waited for the echo. Later that afternoon, after the echo was done, my surgeon showed up again. "You're at 47% from 35%. Things are moving in the right direction. You can go home."

I was home in time for the evening football game, enjoyed some home cooking, and my own bed.

Three days post-surgery going home was my goal. It's wishful given that I had the afternoon surgery so I had less time that the morning patient, but I was really thinking it was possible. This was a big day. Definitely seeing my surgeon early and eager to get that OK to leave. Also, I dreamed and remembered for the first time post-surgery.

The prune juice and beans didn't quite get it done so we went for some additional assistance that did the trick. (Sorry for keeping it real there but it's a possible thing you might have to do.)

The visit from my surgeon was good, but not great. A 35% ejection fraction is not what they are looking for. Not that it worried him, "This happens from time to time and it improves frequently." But he thought it best if I stayed another day. So the plan was, hang around, eat well, keep walking, and be patient. Honestly, it was a little bit like watching paint dry because I was feeling good. But I was never going to go against the advice of my surgeon so let's hang out and make the best of things. I watched some movies (got two Hitchcock's on TCM in) did some light reading, and walked and walked.

Day two post surgery was a whirlwind of mostly positives and I really felt like everything was going exactly as hoped. For the most part, it did. I should mention that, though oxycontin was available to me, I was getting by on straight Tylenol every six hours.

I walked. I walked a lot. But let's not get too far ahead of ourselves because we had stuff to do first. Had my first post-surgical echo and it was, I would later learn, OK but not where we really wanted things. what we found out was that my ejection fraction (think blood coming out of the left ventricle into the aorta) was only 35% and that's too low. But that number was not affecting my very good appetite, the removal of my chest tubes, and my ability to walk around.

Best thing that happened this day was before lunch when my PA came in and said I didn't need those chest tubes any more. I got both the, "This won't hurt a bit," and the used car promise, "You're going to feel a million times better once these are out." My skepticism was not justified. It didn't hurt a bit and I immediately felt a million times better! NO chest tubes was like a weekend pass from prison. I could get out of bed, walk the hallway, and (hopefully) use the toilet because, you know you can't go home until they are sure everything works and as my nurse reminded me, "We're good at two things here: ruining your appetite and constipating you." Well, I was eating fine and I was determined to resolve the second matter.

So walking it was. As much as I could without being a bother. They wanted no more than three laps around the floor so I did three laps. Then in a couple of hours, three more. If I woke up at night, three more. (It's a wakeup when you do that 3am walk and think that you're the only person who's awake, then you see rooms with lights on, TV's on, and people looking at their phones. It's oddly refreshing knowing you're not the only one.) But here's the takeaway: Two days after surgery, even with a less than perfect heart function, I was walking around the floor at will, not getting short of breath, and feeling mobile. I got a visit from the physical therapy duo who wanted to make sure I was good to go home whenever so we walked together and they asked if I had stairs at home. When I said yes, it was into the stairwell, up and down the stairs once, and I did a little ta-da spin on arriving. Got lightly scolded for that but they said I was good to go so all good.

Ate a black bean wrap, mashed sweet potatoes, had prune juice with dinner. Goal directed behavior.

Everything seemed on track for coming home day three after surgery.

I guess I slept much of the rest of January 12 away. Nothing bad, nothing memorable. On the 13th I spoke with my wife in the morning and continued to rest.

"I'm supposed to try to walk sometime tonight, right?"

"Sure, any time you feel like you want to try, we'll get you set up."

Of course, I would need a walker because where else are we going to hang the catheter bag and the chest tube items. So I patiently waited while we prepared for that first walk, which I was sure would be a piece of cake. I sat on the edge of the bed for a moment and then stood, gingerly. I walked a few steps toward the door of my room and immediately felt unsteady and dizzy. We may have gotten a step or two outside but I knew and told the nurse we had to go back. I got into a chair and, disappointed, got my bearings back.

Other than that, I was doing well. No pain, vitals good, and I felt hungry (this was late afternoon January 13 so less than 24 hours post surgery). Ate a nice dinner of fish and noodles, which was better than I expected, but not going to win any James Beard awards. But the best news was that I ate, that I felt good after eating, and that eating gave me some energy.

We tried walking again later and though I got a few more steps in, the result was the same.

Later that night, I was ready to move from CICU to the regular cardiac unit next door. I met my nurse and the student nurse working with her. They were really nice and I loved that they were going to remove a bunch of those IV lines that I would no longer need. The student nurse was going to remove my arterial line in my wrist (used to monitor during surgery so I didn't need it). She received very clear instructions, "Immediate, maximum pressure for ten minutes." She nodded.

She removed the line without any pain, applied pressure as instructed and, about a minute later, she peaked. She won't do that again. It didn't hurt at all and she felt bad enough so I just rolled with it. After all, what's a little blood fountain between friends?

We got cleaned up and I got to my room, never to see the wonderful CICU nurses again. I'm sure they've moved on; I will remember them forever.

One last attempt at walking went much better but my heart rate went over 120 and my nurse said we were done. Of course, I listened even though I felt like I could go around the entire circle.

I dream, vividly, in color, and often relevant to my life. I did not dream during surgery.

My first wakeup is something I have no memory of so all I have is what my CICU nurse told me. I was receiving oxygen through a mask and complained that I didn't need it and it was itchy. And I repeated, emphatically, four times that the surgeon (by name) had to call my wife and tell her how it went. Of course, I later learned that my surgeon had already called my wife and that he fully informed her as to how things went.

I do remember well the second wakeup, a nurse right there with me, and no pain or discomfort whatsoever. I gradually became aware, but not at all uncomfortable, that I had five IV lines in my arms, one in my neck, and a urinary catheter, along with two chest tubes to drain fluid. I listened for clicking and, hearing none said to the nurse, "No clicking, I guess they repaired it." The machine hooked up to those tubes was, for me, a hospital version of a white noise machine, quiet and rhythmically calming. I got IV dilaudid in CICU and all it did was relieve any pain that might have crept through.

I asked for my phone and made a video call to my wife and daughter. I learned that my surgeon was happy with the repair. I assured them that I felt good and that I was in good hands. My daughter would later describe me on that call as "unusually happy."

The lead up to surgery was made easier and calming by my surgeon and his absolutely fantastic staff including an unbelieveably kind, patient, and informative pre-surgical nurse. Every question was welcome, and I had a bunch of questions. I watched every video I could, including actual repairs. I read everything I could get my hands on.

Pre-surgical preparation was simple. No eating after a certain time. Shower with special soap. Pack a bag, and get a ride to the hospital. I saw my priest before and, for me, that was very important. I made sure that, if things went wrong, arrangements were clearly understood, made sure the hospital had a health care proxy so if decisions had to be made, there would be no confusion. My experience with this was calming. It allowed me to think totally about the tasks ahead of me and not worry about things that others might have to worry about.

I arrived and checked in for surgery when instructed, about an hour before the surgery was to take place. Everyone was nice, well organized, serious, but at the same time, engaging and supportive. I was given special disinfectant towelettes to clean my body one more time, and outfitted with a gown that had a port where I received warm air to keep me warm while I waited. My surgeon came by and the anesthesiologist hit me with the trick question about what I had for breakfast (duh, nothing). Not long after, I was asked if I was ready and if I wanted to walk or ride to the OR. A little surprised by that (thought I would be wheeled in) but I chose the walk which included a nice chat with the resident anesthesiologist.

I knew the OR because I had seen it on video. What I didn't quite appreciate is just how much goes on there. There were more wires and tubes than a technical support center's IT closet. And people. Lots of people, some of whom made eye contact and said hello, and others who were immersed in their work. A nurse introduced me to the robot, by the robot's given name, and I was asked to get on the table and get comfortable. I exchanged a few words with a resident just there to observe. He was nice and seemed eager to be part of things.

They gave me oxygen through a mask. Inhaling deeply as instructed I felt calm and peaceful. The nurse held my right arm gently and encouraged me to breathe. They briefly took the mask away and when it came back, once again I got the instruction to breathe. I don't even remember the lights going out.

First post of many as I've kept track step by step through this experience. In advance, sorry if the posts are too long.

Got COVID in September 2020. Honestly, seemed a pretty mild case. Fever, coughing, metallic taste, and lethargic, but it resolved, or so I thought, in a few days. Prior to getting sick, I was active, walking two miles about five days/wk with my wife. Not a runner or exerciser, but not inactive either. One house project in the spring of 2020 was ripping my home office down to the studs, getting a dumpster and filling it to the brim with years of built up things that should have been discarded. Hauling sheetrock up stairs, building out a closet, and adding an exposed brick wall to the office was hard work. This was my life before I got sick. No health conditions, no high BP, really nothing.

November 7, 2020 just before midnight I said to my wife, "Don't be alarmed but I'm going to the hospital." Something wasn't right. Racing heart, shortness of breath, and just a terrible feeling. Imagine my surprise when the tests came back:
- BP 160+/110+
- Clot levels 11 times normal
- Fluid in lungs
- Acute renal insufficiency

Congratulations, you're being admitted. I got stabilized in a day or so, but then we took some pictures of my heart. Severe mitral regurgitation, enlarged left atrium and left ventricle. I was released with appointments for further imaging which revealed ruptured cords in the valve, and a mild prolapse. I needed surgery for a hopeful MV repair or possibly a replacement.

I worked at the fastest pace that health care coverage and doctor availability would allow and settled on a nearby surgeon who specializes in robotic valve repairs. The earliest surgery date I could have was January 12, 2021 so the waiting began.

Waiting was difficult. Every time something didn't feel right, stress levels would go up, heart rate would go up, and I would start to feel worse and worse. Walks with my wife were out of the question because I would get short of breath and my heart would speed up too quickly. January 12 couldn't come fast enough.