Doug's Journal

Feeling great on my three month valversary! Continuing with Cardiac Rehab (as a convenient winter workout) and getting back into CrossFit The surgery is largely a memory, as I'm mostly free of numbness, swelling / bumpiness & tenderness at the surgery sites / between ribs - just a bit left to find if I go looking for it. My heart gets pumping good under hard exercise (target rate being 132 +/- 10), but can stay stubbornly low at moderate activity levels (staying under 100 bpm). I kind of suspect the Metoprolol, will discuss with cardiologist at my 2nd follow-up appointment next week (to include a stress echo after dropping the Metoprolol for a day).

With apologies to poets everywhere:

Ode to the Incentive Spirometer

'O Inspirometer, how I love thee!

You expand my lungs to once again breathe freely

... demanding nothing in return beyond a steady exhale.

You reward me with a productive cough, of dislodged phlegm

... accomplished with minimal effort.

You ease the pain of coughing

... buffering my exploding exhales like a big fluffy cushion!

'O Inspirometer, I am forever in your debt.

5 Weeks Post-op: Wow, what a difference a couple more recovery weeks has made! Sleeping through the night with no Tylenol and no pain. Feeling pretty much like my old self, just a little sensitivity across the right chest & side remaining. Signed up for Cardiac Rehab, they said I could I could get back on my bike, just nothing crazy yet. Took a nice easy ride with my daughter, and returned to my favorite trail at an easy pace - something I hadn't done since the surgery referal in July as I hadn't been able to keep my heart rate to "moderately aerobic". No problem now. Amazing, I am so greatful.

Just over 3 weeks Post-op: Heart continues to feel great, even on brisk walks, but haven't pushed it beyond that (waiting for Cardiac Rehab to try greater exertion in a controlled environment). I understand rehabilitation is different for everyone; for me it's all about about managing pain coming from my right side (the robotic surgery access route plus continued pain in my upper right back) as I heal from the surgery. I'm still not clear if the back pain is surgery-related or not - I got a muscle relaxant from CC on the last day there, which helps a little, have been getting massages, treating with heat, and now doing some exercises recommended for this pain.. sometimes it's the biggest source of pain, sometimes it's not. The (medical) masseuse is recommending rubbing the surface-healed incision points to help avoid scar tissue binding things up underneath.  The former numbness in the surgical areas have transitioned to highly sensitivity skin at the incision points and what feels like deeper pain within the chest below those points... yes, that's an increase in pain... tolerable during the day (with max Tylenol), but the "break through" pain leaves no position comfortable enough to fall asleep at night - a half of an OxyCodone pill has worked to get past that the last two nights, and oddly I find I've slept through the night, having missed the allowed midnight dosage of Tylenol (of the every 6 hours schedule), and am in only mild pain in the morning. Weird. Seems like just when I figure out how to manage symptoms, things change & I'm trying to figure it all out again!

1 1/2 Weeks Post-op:  Recovery going as well or better than expected:   Right side lumpy & tender (can't sleep on it),  like I'd been impaled with a spear & a few arrows, but it's getting better each day.  Realized at the farmer's market today that I'd forgotten to take the 6am Tylenol dose altogether.. and was a both shocked & elated to realize that I didn't really need it - even coughing isn't hurting like it did just days ago.   Finding I need more relief heading into the evening. Two steps forward, one back, I'll take it.  Took a nice walk today, same route & brisk pace that I'd been doing in the months before surgery.  Primary difference is that my heart didn't have to be beat nearly as fast to stay oxygenated(around 90 bpm whereas I'd had to get up to 110 bpm & over for the same results before).  Taking that as a sign that the repair's working - more oxygenated blood getting pushed out to my body instead of back to the lungs. Yay!  Starting to return to more typical activities, find pain trying to reach for things;  I think I'm going to need some PT to help restore range of motion on that right side as it's healing.

1/2 Week Post-op: walking off the main campus around the big "donut" water feature at the font entrance. Was in ICU for 1 day after surgery, mostly over night, 2 days in the step down unit. I was lucky to have only one complication from surgery, a minor one at that (hiccups, which apparently can occur when the vagus nerve under the heart is exposed to blood, but quickly fixed with a med... and I'm reading now possibly ice cream!). I had a variety of issues unrelated to the surgery, however, that that made these days more difficult - (1) a persistent red rash (possibly from pre-op contrast dyes?) (2) sleep apnea, for which I use a dental appliance but had been advised not to bring to the ICU (bad Idea, I ended up being over-treated with O2, then a CPAP, then a drug to reduce nausea - but was able to resume using the dental device the next day), (3) a "knot' in my back (mid- back, right side, above the robotic approach site - probably from a workout the previous week that I'd not stretched properly afterward then jumped in a car then airplane for travel - hurt like a bugger, only got tighter as time went on -stretching/hot/cold/massage has been helping). and finally (4) up sleepless in the John all of one night from Lasix (turns out I'm more in need of FloMax - I feel a like a "real" boy now!). Have started getting outside to walk a bit - heart feels great! stamina yet to come... follow-up appointment Monday.
On the surgery itself: Dr. Gillinov said it went really well. My wife tells me when he came in to see her and my son after surgery, he continued with "I was wrong," and that he had learned something from me. He had not thought it possible for an episode of endocarditis from over 30 years ago to have caused the amount of damage that he found without being followed by heart failure within 6 months - but had confirmed the damage was from endocarditis. In the end, it end up being a simple repair; the valve was split down the middle and mostly just needed a few stitches.

Seems my surgery was delayed due to a couple of  emergencies, but was rolled into the OR at 11AM.  I see the team assembled, the DaVinci machine on the left, and hear a voice to the right saying "Marc Gillinov here." There are the final checkoffs, and for me the scene changes, to that of my wife and son smiling.  Jack points to a sign that says ,"REPAIR" and "ROBOTIC." Their smile spreads to my face, and I enter recovery :)

In Cleveland with Lora, settled into an airbnb near the main clinic.  I feel as prepped as I can be, thanks to all of you!   Now half-way through pre-op.  Blood draw, chest x-ray & left heart catheterization completed, CT scan, repeat TTE & consults still to go (on Monday).  Blood levels in normal range, x-ray clear, heart catheterization mostly clear, but "a little calcification, not enough to need addressing."  Pre-review results from the earlier tests trickled into MyChart over the day, all but the heart cath - so I'll have to wait until Monday to find out if "a little" is disqualifying for a robotically assisted repair.  Our son arrives tonight.  We're planning to visit the Cuyahoga Valley National Park (a relatively short distance South) Sunday before finishing pre-op and heading into Tuesday's surgery.

Get'n real!  Finished my last pre-surgery morning workout at "Catacombs" and last full week of work today.  There's just ONE last day of remote work (Tuesday after Labor Day) before my Leave of Absence Wednesday, starting with the  journey to CC.  Will keep up the walks, but my wife wisely advises me to avoid heading downtown (can't get sick now!)

Ok, I'm having surgery (Sept 10), and now moving on to thinking about recovery. I know I want to recover at home, take regular walks (as I'm feeling up to it) and to (a few weeks in) have access to a Cardiovascular Rehabilitation program. Beyond that I'm drawing a blank. What else should I know?

One month to surgery as of tomorrow.. I figured after watching all the videos, reading books and medical reports, that is, arriving at the point of being "researched out," I'd just settle back into my normal routine until it was time - but not sure that's possible :) Any advice out there?

Who loves avocados? One of my most amusing take-aways from reading "Heart 411" was that avocados were actually really good for you (helping to raise the "good" cholesterol). I think I'd heard that they had a a lot of fat and got the wrong impression - turns out you need some 30% fat in your diet - just plant-based, not meat-based. So you have to lose some of that white bread & sugar to lose the empty calories, but in return you get to spoon out all that deliciousness... oh the joy!

Diet & exercise going well, soaking up info while awaiting Mitral valve repair. It's been fascinating to search medical terms appearing in past test results, but mostly just confirming that, "Yeah, I really do need that surgery," even though I've been asymptomatic - until recently that is; while I can hike at a moderate aerobic pace for long periods at a time without issue, trying to be helpful from rest, say, setting up tables / or canopy tent, or really anything involving down & up movements, leaves me lightheaded. Might be the mitral valve.. or might just be a switch in blood pressure meds a month or so ago (halving Amlodipine but adding Losartan, which apparently can have a side effect of... light headedness standing up). Reminds me of my father in law, whose meds for a milder form of Parkinson's had... well, Parkinson's-like side effects. I have to say this (or maybe just the waiting) is making me nervous about what's coming up. Strategies for one who likes to be in control heading into a situation where they can't possibly be?

Good morning, all! With surgery still two months out, and per George & Dan's & others advice here, I've committed to being in good shape going into it - while limiting myself to moderate cardio levels per Cardiologist's advice. Ordered Fitbit (while recovering from covid), and one for my wife as well - I hike & bike, but Lora works out regularly as well & it's fun to compare stats :). It allows to monitor my heart rate as I head out for daily hikes (slowing down if I go over 120), and I find it's tracking of "Zone minutes" and "Steps" across the days motivating. Lora goes to a regular "Longevity" class, which whiled paced individually, is not the kind of thing I've been familiar with - so I'm doing some 1:1 coached training to learn how to do the various activities, and do it safely (watching heart rate, easing in, pacing, etc.). I'll do this for a month or so and then gradually step into Longevity, keeping that same slower pace. I found Maggie Ma's journal logging in this morning, and am even more inspired to keep at it :).

A question for the community - how many days did you spend in the hospital following surgery? We're trying to make travel plans for what is hoped to be a Mitral Valve repair by way of robot, and wondering what to plan for (with the understanding that plans will need to be adjustable). Thanks!

Tested positive for Covid Wednesday morning :( Cardiologist recommended Paxlovid, I'm about half way through the course, and am feeling much better already. Just curious, any heart valve / covid associations or stories out there?

Wow, that was quick - just got back from Cleveland yesterday following two days of testing and got a call this (Monday) morning to schedule surgery. Great news on multiple fronts in that my surgeon will be Dr. Gillinov, that he thinks both a repair may be possible and that it ma ybe possible through robotic surgery (pending a check for suitable anatomy). Surgery date is September 10.