Rob's Heart Valve Journal

Folks, my 73-year old mom had a minor stroke last night. After several tests (MRI, CT, echocardiogram, etc) last night and today, they don’t know what caused it. The docs propose an ILR or Implantable Loop Recorder. The suspicion is that a-fib may have been the cause.

Anybody out there have experience with such a device? Do they work as intended? Downsides? Any alternatives?

I got an email yesterday alerting me to a new product from Withings that I thought was interesting. I have had a Withings scale and BP cuff for some time and they seem to be fairly accurate and very convenient with the app. (I use the BP cuff 2x per day.) Then Nokia bought Withings and it went downhill because the Withings products were dwarfed by the Nokia business.. The company was spun/lifted back out of Nokia and is once again — I believe — being run by the original CEO. So it may make sense to check into this one and other products they innovate from here.

It took two pics to capture the details in the email. Here they are. (The red highlighting was added by me.)

HW’s, it was 120 Days ago when I posted my first pic to this site. It was dawn and I was up early because I could not sleep. I was climbing the wall of worry. This morning I am up early because I am rested (BP of 113/75, resting HR of 67 bpm) and..

Snapped this pic today overlooking Sarasota Bay. The pelican on the left is a heart patient. (So is the one on the right.)

Gotta look at my journal for third pic (which is today’s step log).

Screen shots from Fitbit while we are on vacation in Florida.

I look like an underachiever. 🤩

Uh oh. Volcano about to erupt.

Teeing it up....

Well, today was attempt #2 for a lovely Christmas photo with our granddaughter on Santa’s lap. She will be 2 years old in February. We went to the mall and my wife got her into a great little dress with bows, a bow in her hair, frilly socks and sparkly red shoes! She was very pleased with herself!

Santa? Not so much. No can do. Not last year, not this year. Maybe in 2019! Pics are posted in reverse chronological order as you scroll down. (There are 3 pics in total.)

Folks, two questions....

1) Are there metoprolol tablets that are 12.5 mg? Chopping 25 mg tablets in half is getting old (and messy). Any suggestions for how to better specify the tablet size to our pharmacies?

2) I have some left over prescription meds, including oxycodone. What is the proper/safest way to dispose of it?

Dear Heart Warriors:

Today marks my 3-month valvaversary. September 26th took forever to arrive, it seemed. And yet I am now further away from that date than I was when I was diagnosed with severe regurgitation in my aortic valve on July 24th.

Whew! Made it. During my six week follow-up appointment in early November, I attempted to thank my cardiologist for all that he had done for me and he bluntly declined. Without apology, without hesitation.

“I learned a long time ago to never plant the flag of victory” he said. Wow. My respect level soared to new heights and yet, I had an unmet emotional need to give somebody a high five. At that point in time, everything seemed to have fallen into place. But maybe I was missing something.

I sat back in my chair to think. Looked at my wife.... My look to her: “You puzzled?” “Yes, puzzled.” her face indicated.

No a-fib, no pain at or around incision, no complications. Walking several miles daily, eating very well and losing weight put a spring in my step but I was still looking for the green light to enter cardiac rehab, get behind the wheel of the car and get my 5 lb lifting restriction removed.

Maybe my metoprolol dosage would be reduced. Maybe I could have a glass of wine every so often. I wanted clarity and direction to be sure I safely managed around any metoprolol drug interactions. Before leaving the hospital in early October, my EKG scrambled the CC Rapid Response team. Yikes! How come they didn’t know I was a heart patient. What would we find today, six weeks later, I wondered?

Before OHS surgery, we learn to worry. We become expert at it. (According to what I have read since, such worry actually damages our hearts!) I hadn’t forgotten how delicate a balance we all find ourselves trying to sustain, but now how to perfect and preserve it?

What was I going to learn? Am I OK? Improving? You just don’t know what to expect.

Well, those of you who recall my journal entry from November know that all went very well. And my situation has since improved. Not much to report, folks. What I have is only good news. I feel guilty — and very blessed — saying it.

Cardiac rehab is going well and I enjoy 40 mins of exercise three times weekly. Not a lot of camaraderie in the gym, but I enjoy it. On “off days”, I jump onto the treadmill and elliptical in our basement. It is so nice to work my body hard enough to get a healthy sweat going! My Nike’s will soon need to be replaced.

Meds were reduced by one third in November and again on December 1st by the same amount. My resting heart rate is now about 69 bpm, a 10% reduction relative to early October when the pace was 76 bpm while on the original dosage. Blood pressure readings averaged 115/76 in October and 115/77 in November with max systolic and diastolic readings roughly unchanged. Dropping 32 pounds since July has helped! The Fitbit keeps poking me to get moving.

My only complaint is that my sleep schedule is erratic. Between 2am and 4am I often find myself wide awake without a chance to slide back to dreamland.

Otherwise, all good. I have been blessed.

What I have deduced since then, however, is that this next battle is perhaps harder and the stakes are just as high. I have to make this lifestyle change permanent without wilting away from the challenge of eliminating sodium, cholesterol and saturated fats. Exercising several times per week has to remain the priority it has become, even with distractions and stresses of work and everyday pressures of life.

And so no flags of victory are to be — or have been — planted. Instead, I’ve got to stay focused on how tight the tolerances are for me, for us. Do not allow sand in the gears! Can I be that disciplined? Can I be that consistent and patient? Wow. Daunting. I hope so.

One of the wonderful things about this process and the journey I find myself on is discovering ALL OF YOU. Thank you, Adam! Thank you, Heart Warriors (a/k/a “Valvers”).

This is a special community. One thing which makes it so is that the stories scroll off the bottom of the page. Whether by accident or through Adam’s genius, this reality makes it such that new people ask questions rather than rely on past archives. It forces new, personal and permanent bonds between Warriors.

Knowing that some of my earlier posts have scrolled by and are long ago forgotten, I want to once again give praise to my cardiologist, surgeon, surgical team and ICU care givers at the Cleveland Clinic. Truly rock stars, each and every one!

Please read “my story” and know that Dr. Venugopal Menon is one of the very best doctors you can hope to find. Besides being skilled, Dr. Menon is logical, balanced, caring and practical. He is also just a decent and kind man. He made it possible for my wife and I to confidently pick a path forward. “From the choices in the air in front of you, pick one and make it work for you” he also said to me.

Please also read my recommendation on this site for Dr. Gosta Pettersson. He is a special person with truly special skills. He has invented procedures and mastered others that even the most talented surgeons will find awe inspiring. Please read my journal, scrolling back to September 25th in particular. (Moshi moshi.) These posts serve to remind us there are alternatives to mechanical and bioprosthetic valves and each of us has a unique set of facts and circumstances.

Design your own solution — one with risks you can tolerate. If you are not inspired by your cardiologist and surgeon you need to interview at least a few more! These people are going to hold your heart in their hands, literally.

Be 1000% sure. (Not a typo.)

Merry Christmas and Happy New Year my fellow valvologists.

“Keep on keeping on. Press on regardless.” -My Dad

Happy Holidays, HW’s!

Well, Heart Warriors time has flown by. I can’t believe it! I have a new battle to grind out and that is to NOT lose control of the peace and focus I had during the recovery phase as I fall back into the work routine. Not sure which battle is harder, to be honest.

I am eating well, exercising at Cardiac Rehab three times per week and walking around the neighborhood a couple times per week. Fitbit says I am “active” 5 or 6 days out of 7. Time availability and stress of workload is my new archenemy (adding them to the list with stairs!) but I am working to find the balance.

I feel great! Dropped the metoprolol dosage to 25 mg twice daily, the level at which it will stay until my six month follow-up.

We went out to cut a Christmas tree and what a difference a month makes. At Halloween there was no lifting of the pumpkins and I was riding in the back seat. This past weekend I put the 9’ Fraser fir into the back of the pickup truck and put it over my shoulder to get it in the house. (Picture attached!). Christmas lights are now up on the front porch and that required 12 different reps of up and down the ladder. I am not even thinking of those things anymore! Just doing them. Pulled the starter on the snowblower last week without even thinking about it. No issues.

Feeling much stronger! Just not super happy with how inconsistent my sleep patterns are and that seems to have suffered a bit by going back to work. Hmmmmm.

Keep pushing ahead, HW’s!

Today was my eval at “CR”. I am looking forward to this and hope to make some permanent changes!

BP, heart rate and blood oxygen level checked before, immediately after and several minutes after the 6 minute “Orange Cone Hospital Hallway Grand Prix”. Covered about 2,200 feet in those six minutes, or about 3.8 mph. All measurements indicate things went well!

Looking forward to my first real visit on Wednesday, which coincidentally will be my seven week valvaversary.

We apparently check in, connect ourselves to a wireless heart monitor, slide it into a pouch draped around our necks and do our routine. Curious what that that will be and what kind of improvement I might see. But first step is keeping me safe. I am also hopeful there is an opportunity to use some weights.

We’ll see! Excited! This 12 week program will take me through February. Time is gonna fly. 👍

Dedicated to the folks in the waiting room.... Visualize the future. Have a keen focus on getting fixed and getting back to normal (or better). It happens! (Also, do research beyond the traditional valve choices. There is more out there than just bovine, porcine and titanium.)

Here is what I learned yesterday. It can be your story, too!

Blood panels show all normal readings. Upon discharge five weeks ago, some items were elevated or too low. Yesterday every single component of my blood work fell into the normal range. Yippeekiyeah.

My EKG yesterday did not set of alarms or not scramble the Rapid Response team like the EKG did on day 8. (That was scary! Just finished OHS a week prior. I was ready to roll down the highway and recuperate. The guys with gurneys come storming in thinking I am having a heart attack because the machine says so and the tech does what the machine says. Yikes!). But all was good on that score yesterday. The heart has settled down.

BP and heart rate are smooth, steady and in a sweet spot. Resting heart rate has dropped from high 70’s in mid-October to mid- to low-60’s. BP readings are in the zip code of 113/76 at home and 124/75 in the hospital. Metoprolol was backed down effective yesterday and again in four weeks time. I go from 75 mg two times per day to 50 mg twice daily to 25 mg twice daily a month from now. Once there, I hold steady until my six month visit. I stay on the baby aspirin.

Started Lipitor three weeks ago and LDLs have dropped from 125-130 (borderline) to 65! (According to Heart 411, we all should be below 125 and those with heart disease risk factors should be below 100 while those with heart disease should be closer to 70.) HDL needs a boost and I am hoping exercise will get me there. I’ve dropped 28 lbs as well, and that helps too.

Echocardiogram was excellent. Echo tech was pleased and cardiologist was over the moon. Though he conservatively stated “we never, ever plant the victory flag” he could not be happier. His direct quote: “if you show this echocardiogram result to 10 cardiologists without telling them the story, 9 of them would never know you had an artificial valve”. We joked that a side effect of the Ozaki Procedure is an insatiable craving for sushi. Moshi moshi.

Lifting restriction has been relaxed significantly (“don’t lift anything heavy enough for you to feel a need to hold your breath while lifting”) and I am now graduated to sitting in the front seat of the car. I personally don’t have an airbag phobia, but my cardiologist does. Admirable. He is a very conservative guy. I do as he says and it minimizes my risk. Gotchya, no problem! But I am bummed I am not cleared to drive for another two weeks! C’est la vie. (Let’s keep this multilingual.)

The nurse practitioner saw my walking results and queried me: “5.5 miles in a day?” She gave a strange look. I asked “did I break any rules?” No answer. My wife took that to mean that the NP could not accomplish that goal herself and it was a sarcastic kind of admiration. I didn’t know what to make of it, but we press on.

Cardiac rehab to start next week. I go back in 6 months and then annually thereafter.

I am stoked. (Of course this can all change tomorrow. Time will be the ultimate judge.)

Keep pushing, Heart Warriors! Get to the recovery side and throw yourself a celebration (with sparkling water and quinoa, of course!).

What I *assume* is standard issue at the InterContinental Suites. This was in our “living room”. Chair in bedroom is not a recliner. Hope his helps!

High water mark today! Walked more than 5 miles and 12,000+ steps.

Not much news to report. Follow-up with cardiologist comes next week and cardiac rehab evaluation comes Nov 12th. So until then I keep walking. Today was a high water mark!

I’ve been back at work each of the last 5 days for a few hours each day. Good to get back in a groove!

Keep pushing, folks!

Dan B., I don’t see any Seahawks yet. Did they sleep in and miss the game? 😜. Go Lions!

I guess it was inevitable that at ~some~ point I would be a Mall Walker. Well today was the day! Wet, cold and gloomy today. Wasn’t looking forward to walking outside. I think I will tough it out in the weather from now on!

Well it seems like 100 years ago but it also seems like only yesterday that I was wheeled into Operating Room 67. Or was it 64? I thought I would never forget but I already have!

At this point, I am beginning to get back into work via email. I began to dink around with that a little bit last week and this week am ramping up a bit more. I feel great overall and it is a welcome feeling to begin to get back into a normal day-to-day routine!

I walk no less than 50 mins per day. Some days that adds up to 10,000 steps and/or 5 miles. I try to do 5 flights of stairs everyday. It seems to be working. My resting heart rate has dropped from 78 to 71 over the last 10 days. My blood pressure is also where the docs want it. This morning it was 112/78.

I am still restricted from driving and lifting. I take my heart pillow with me to slide it under the seatbelt and sit in the back seat of our truck when we go places. Feels strange but it is a comfortable set-up! Plus the dog leans on me! 😃

Small issue discovered last week with visit to PCP. I have some superficial clotting in my vein on my right forearm as a result of the IV that was used during my stay. Our arms get so much poking and so many needles we are all black-and-blue for 10-14 days after discharge. This one didn’t go away and I asked about it. A sonogram w/ Doppler was ordered to determine it “ain’t no thang” and should dissolve on it’s own. Hot compresses and the regimen of baby aspirin are apparently all that is needed. If it were in (or closer to) a larger gauge vein it would be a major concern, however. Whew!

The incision is looking pretty good. One drainage hole took a bit longer to heal than the other and a decent sized scab is still there. The puffiest part of the incision closet to my Adam’s apple is still puffy but it is 1/5th the size it was immediately after surgery. So that is clearing up nicely. I don’t have pain as much as I have occasional bouts of discomfort due to twisting my torso when lying down or some small muscular reminders that I had a full sternotomy. I’ve taken Tylenol once this week before bed. Otherwise, nothing.

We went to get pumpkins yesterday from a local farm and we selected four (we have a large porch) and also selected LARGE ones. They are heavy (apparently). I felt like such a puke not being able to help Michelle lift them onto the wagon, into the truck bed or out of the truck! She is such a trooper! (Pics to follow.). But it was great to get out and about. We have to go back to do the corn maze! Damn, I feel like a retiree and I have to admit it feels kind of great!

As some of you may recall, I am reading the book by Gillinov and Nissen (“Heart 411”). I recommend it. Currently I am in Chapter 8. Apparently you *can* scare yourself to death. Fear, anger, anxiety and other factors are correlated with heart disease. I am still reading, but wanted to pass that along as soon as possible!

So get yourself into “the zone” where you can control your fears instead of letting them rule you. Otherwise (it seems) you may be adding to the strain on your heart! This is a time for each of us to own our future and drive everybody around us to get to a solution that works for us! Ownership of that journey is up to US! And once you own it, get comfortable that you did everything in your power to ensure the best possible outcome. That should give you peace and allow the process to unfold in front of you without triggering you to wig out in a panic attack. (At least that is what happened for me!). No more panic attacks, right! You are hurting yourself if you allow them!

So bottom line for folks in the waiting room: you will get here! Recovery happens gradually but more swiftly than you imagine today. Get mentally prepped for the surgery — get outright giddy about saving/extending your life and “knock down every putt”. Give high fives to everybody you pass on the way into every procedure, even the OR, on your way to the ICU. Of course they will look at you like you are insane! (Maybe you are! Who cares?) But *this* is the time to be your strongest and most optimistic version of yourself and make it contagious!!

Thanks to all ahead of me for inspiration! Thanks to those here who are going through repeat surgeries and showing us how to be even more courageous than should ever be needed in life! And good luck to those in the waiting room! Hopefully you are getting the picture that you are more heroic than you give yourself credit for and that you have a LOT of great things ahead of you! You will discover the future isn’t filled with pain or worry (there is some, but it is more manageable than you think it is).

❤️💪

Today started as a beautiful day for a football rivalry!

Made it to the upper deck of Spartan Stadium. Had an elevator pass due to a thoughtful buddy but the line for the elevators was too long! So we hoofed it! I was feeling good about the challenge.

A long uphill walk! And it was a good! Didnt feel tired but did pace myself!

But — and here is the real doozie — the game was suspended due to lightening. Everybody had to evacuate and we’ll have to walk back in when the game resumes!

Should be a good day of exercise for the aortic valve and the fitbit!

Go Blue!

Three weeks and I can honestly say that stairs suck. Really tough. My new archenemy.

(I’ll quit my whining now.)

Sometimes I struggle to scroll down and find threads that we’ve all posted on because we have so many different conversations going on.... (A good thing!)

But I want to bump to the top a few people so we can continue to offer support. I hope a “bundled” post helps out!

Dan B., any date yet?
Philip, Any feedback from CC for you on your surgeon and possible timing?
Valerie, we are *all* eagerly awaiting your “I kicked it’s a$$” thumbs up post! Let us know when you can!

Have a great day, Heart Warriors!

So my update today is that I jumped on a plane (two, actually) and flew to Washington, D.C.

To make things as simple as possible, and to eliminate any need to lift anything, I checked my bag (I usually carry-on) straight through. It is wheeled, so no need to lift it at either end or in/at hotel! For other stuff, I put my Surface, iPad, any charging cables and my wallet in a shoulder bag and left behind all else! Total weight to carry was about 5lbs.

Landed in DTW and my arrival gate (69) was literally next to my departure gate (67) Couldn’t have asked for that to happen, right! But I wasn’t going to get my walking in so I actually walked from gate 67 to gate 41 just to get a 20 minute walk on the books!

Landed in DC, rolled bag from luggage claim to a taxi. He lifted it and got me to the hotel where it was lifted out again. I rolled it inside. Whole trip complete and never lifted my bag. Only had 5 lb over my shoulder!

Still needed more walking so went around three blocks in Georgetown before getting dinner!

Feels so good to be out and about! And it was less work and less strenuous than what I normally try to do in my daily routine!

Also saw local primary care physician to give him an update and close the loop with him since he found the heart murmur and ordered the TTE that got everything rolling. He didn’t know whether to feel good or bad! I assured him it is ALL good and I am pleased he found what he found when we did!

Keep pushing, HW’s! ❤️💪

42F and sunny in Northern Michigan. Snapped this pic on my first 20 minute walk today! (It was 80+ degrees Fahrenheit only a few days ago!)

Hard to believe it has been two weeks since surgery!

Things are very, very good! As I try to think about what could be useful to those still in the waiting room, or those just a few days behind me, I thought a quick list of what was “hard” and what was “harder than expected” might be helpful. I follow that with other, happier observations!

“Hard”
Really, besides the waiting and the mental games we play in our own heads, nothing was hard. The lead up — starting with the diagnosis all the way to understanding a full sternotomy was likely — was the absolute worst part. It is *all* mental. Isolate and compartmentalize those demons and you are 90% of the way there! This is the absolute key thing, folks!

“Harder than Expected”
1. Getting on/off bed the first three or four days. Takes some ingenuity, planning and some patience.
2. For me, and we are all different, the transition to Step Down caused a couple of difficulties (see my journal). The ICU was actually far quieter and more relaxing so moving to Step Down was a surprise.
3. Getting the sutures in place from the drainage tubes was a surprisingly painful ordeal for me.
4. Getting lungs fully dried out was harder than expected. They gave me the spirometer and I used it religiously, but it wasn’t until 24-48 hours after tubes were pulled that I made progress and even then, the spirometer exercise seemed too easy and ineffective. Get right on that, folks! At my one-week follow-up appointment the nurse practitioner suggested a different set of exercises (which I recommend): inhale and hold, then exhale slowly. Repeat but go 15-20% bigger on inhale. Exhale slowly. Repeat with MAX amount you can take in. Hold it. Exhale slowly. Worked much better for me.
5. Having the pacing wires pulled. That was weird. Didn’t know what to expect at all. Another 100% mental hurdle!

The “Easy” and “Easier than Expected”:
1) Getting around. Compared to hip replacement surgery in 2017, this is a breeze. Daily routine is pretty easily managed and the surgery, incision, recovery, meds, etc. is extremely simple. I am starting to get antsy to get back to work already.
2) Fewer meds than expected. Other than painkillers (as needed, which is zero right now), my regimen is really baby aspirin and a beta blocker.
3) Sleeping has been much easier for me than expected. I slept on my side while in the hospital — hardest part was rolling onto/off side — and slept on my stomach last night for first time. Didn’t even think about it, it just happened! I couldn’t do that 2 weeks post-op from hip surgery.
4) Waking up with breathing tube still in. It was easier than some of the traumatic stories I’ve read here. My biggest bitch at that precise moment was I was thirsty. They did not explain that they could not get me water because I was incapable of swallowing, so I got more aggravated! It was solved quickly enough. Second thing was that my lips were so dry! Make sure the first family member to see you in ICU is ready to lube you up with Chapstick if permitted to do so!

If I could pick one thing to do over so I could do it better, I would have spent more time with my surgeon and had those meetings earlier. Meet multiple times with your surgeon if possible. I met with my cardiologist multiple times and probably should have spent an equal amount of time with each one.

I hope some of you find value in the notes above. Documenting this stuff for you guys after all!

Another beautiful day ahead! Keep pushing, Heart Warrriors!

While in the hospital, I walked first down the hall and back and then loops around the floor, increasing the number of trips or the distance each day.

Then I went to the hotel and walked the hall 3-4 times per day and that was about 400 footsteps per episode and I would do 3-4 times per day.

Then a day of travel, so hard to measur progress but we stopped on the turnpike three times and I walked several minutes each time.

Now I am home and in a groove.

Friday (Day 10) I walked 20 mins (4 x 5 mins). I am bummed because I could have started earlier in the day and done one or two more “walks”.

Saturday (Day 11) I walked 24 mins (3 x 8 mins).

Yesterday (Day 12) I walked 43 mins (5 x 8 mins + another 3 mins).

Today I intend to get to 45+ minutes and am eager to see a Fitbit come in the mail on Thursday to help track progress.

Keep up the good work everybody!

Forgot to tell you yesterday’s biggest news.....

I sneezed. It dropped me to my knees, I fell back quickly onto a chair and then could not stop laughing. (Which by itself is painful.)

All of this occurred in front of desks J1-4 and J1-5 inside Cleveland Clinic. All the cardiac patients there knew what had occurred.

It was pretty funny, I guess, because I got some giggles from the crowd. Personally, I’ll bet it was more painful than funny.

Ouch! Not looking forward to sneeze #2 at all.

Have a great day, everybody!

Leaving Base Camp!

Heading home!

Bloodwork, chest x-ray and EKG all in good shape. Exit consult with Nurse Practiontioner was excellent.

I dont think I will see a cattle crossing, but I’ll take a pic of anything we might find interesting along the way. Unless of course I am asleep! (Highly probable.)

Heading down the road as soon as we can!

Success!

Folks,

The news to share is quickly decelerating! Good, right! Absolutely!

So for those people out there trying to understand how CC process works for out-of-towers, I was discharged yesterday around 12:15pm. At that time, they knew I would have three more tests to complete before being given the green light to head back to Michigan. They did not know the times at that point.

Overnight, via MyChart, the appointment times were assigned and I am all set to get rolling at 8am tomorrow. I had to check email and login to see that info. I expected it, and it was there! Highly efficient/automated. If you are a CC patient, you need to be ready and comfortable using their MyChart system! You will be lost without that and a person typically doesn’t call you personally to confirm (but we were given numbers to call in case needed).

Second possibly valuable thing to share is that before discharging you, they walk you through a 6-7 page memo wrapping up your whole visit with a nice bow. They give you a packet of info to put into your binder. In there is a statement of exactly what procedure you undertook and a lot of supporting material. Included there is a list of meds to take sorted in a matrix: each row is the med, each column is when to take (morning, midday, afternoon, evening, night, as needed). Very clear!

So I end up on Tylenol and Oxy (either/both as needed),, Metoprolol, Baby Aspirin, Protonix and, if needed, senna-docusate.

Rather simple! I am pleased.

It’s official. Today I hit the “Wall of Sleep”. I dont even know if this is a thing, but the tractor beam emanating from any flat surface puts me into a trance and I fall into a slumber. (“WOS” is now copywrighted.)

My nap this afternoon at our comfy Holiday Inn was 4 hours! While sleeping, I felt like it was more like 12 hours and I officially didnt give a poop emoji. More blankets, please!

The hallway on the floors of the Holiday Inn is — for me and my average guy stride — a convenient 100 steps. So I did two round trips.

I am now wishing I had counted steps around the floor in the Step Down Unit to use for comparison.

People, we were given a gift by these talented surgeons!

❤️💪

Getting discharged today!? I believe so. No reason I can see for that *not* to happen. Email in my MyChart messages from CC has already welcomed me home! I wish that were true but I am here in my room on the 5th floor in J Bldg.

Brad keeps encouraging sleep and today it hit me like a hammer. Right now it is the only thing that is on my mind.

Thanks Heart Warriors!

Surprise visitor is Dr. Pettersson — he just walked in. Gotta go!

(Subsequent update: Yessss! Discharged! Wheels are in motion.)

Rob

So a lot of important sh!t was accomplished yesterday, literally. I have to hand it to Jill with her post from yesterday. Funny, funny, funny. I am now credentialed to use poop emoji at will.

CC team was all geared up to spring me today and that was the feeling last evening jumping into bed. But some small/weird readings in some blood panel tests, one reading of a temp higher than 100.5F added to worries I might have an infection given my own physical reaction last night with chills and shivering. A new layer of tests kicked off at 3:23am this morning.

In the real world, if some body enters your bedroom at 3:23am wearing a mask and brandishing a needle things would get messy. In a hospital, you throw your arm out and say “thank you sir, may I have another”. So that is how my day started.

Echocardiogram was done by 9:30am and we are waiting for those results as well as results from urinanalysis and second round of blood tests (both arms, same time, 9:30 am) to confirm I didn’t pick up an infection while here. Good to be sure. I am pleased they are following up on my feedback.

So getting discharged today is not likely, the team has already shifted to a tomorrow mentality. Ok with me as it makes for one more day of recuperation behind me before my wife leads the charge home!

For those keeping score at home, a 5-night hospital stay was the Aetna pre-approved plan.

Also, interesting and powerful to be checking test results on MyChart from hospital room as soon as those show up and share them with your caregivers. Apparently, I now have an aorta which is “tortured”. Must have had that all along but they didn’t give a poop emoji because the valve was so leaky! Weird, right? Life.

They cut off my yellow “Fall Risk” bracelet and my color coded yellow socks. I am now free to walk around at will and have already done a lap around the floor today, the longest tour of any the past three days. I expect to do 4-5 more laps later today as well as get a wheelchair ride to the top floor pavillion overlooking the city. (Anybody who has seen the movie “Spinal Tap” please join me in a rousing chorus of “Hallo Cleeevelund” in your best British accent.)

The team has taken preemptive measures to get the bus from Pooptown to arrive at the station. Thus far, only false alarms.

I am watching the reports on each day’s x-rays of my lungs to see if everything is falling into place. So much liquid, etc.

Have a great day all! Those teed up for this week please do not lose more sleep — you will, I did, we all do — but this is a do-able project! Kick it’s ass.

Day 3 (before tubes and wires were pulled).

There are so many posts on the HVS site it is hard to keep up with everybody! Wow! Lots of progress for people.

So the Achilles Heel for CC seems to me to be tbe transition from ICU to Step Down. It was my first day/night in step down and the amount of attention and effort I have had to invest has spiked.

The pain management and frequency of meds was easy and frictionless until Step Down. Managing the transition from patient managed painkillers to that of nurse-managed is causing me problems. Rough night!

I am happy with my progress physically and how strong I feel, but yesterday i made 5 requests to my nurses and only a fraction of it was well-managed/responsive. I asked twice to go for walks and was told twice somebody was on their way down to help and yet nothing happened. (Finally went for a walk at 7:30 as shift change occurred.).

Food ordered for dinner for whole floor was wrong! They delivered the dinner orders and they were exactly the same as what folks ordered for lunch. They repeated it (and didnt catch it). Not a big deal, right? But still was frustrating.

Sharing only for those who are making their decisions about what treatment they will pursue and where.

Onward and upward!

Big improvement today! I am still sitting in ICU but only because there are no regular beds available. Yesterday I ate lunch and dinner (dry turkey) and had two blood sugar tests to make sure I am not at risk for infection (<150 mg). Last night was pretty good!

Watched the football game last night and had my first chance to urinate. Success! Arterial line came out.

This morning I have had a wipe down, new socks, brush teeth and mouthwash. Waiting for breakfast. Stool softener is taking effect and they gave me Lasix to get more fluid out of my chest cavity. (Daily x-rays. Today looked a little “wet”.)

Neck line and chest tubes to come out today when they get a bed for me!

Could not be feeling better!

(No pics possible in ICU, otherwise I would post. )

To those in the waiting room:

“Baseball is a game which is 90% mental. The other half is physical.”. - Y. Berra

It turns out baseball and OHS have a lot in common.

❤️💪

Made it! I just want to let you all know I came through just fine.

Realtively easy night. Sitting in a chair watching TV right now.

More later!

Today’s the day. You are ALL courageous, loving and determined people. Thank you for being you!

Time to make this happen. Will check back as soon as I feel up to it!

Rock ‘n’ Roll.

👍❤️💪

Heart warriors, please help ASAP. I need research on the Ozaki procedure. Anybody have good solid credible research on it?

It was proposed to me today by Dr Gosta Pettersson. He calls me “an ideal candidate” and has done 15. (He did first one in US.). Several hundred folks in the world have had the procedure and ~25 surgeons in US perform the procedure — a procedure which uses my own pericardium and a template for the pieces to construct my own tri-leaflet aortic valve.

I have to decide today. Surgery tomorrow at 6am!

Otherwise I pick something more conventional (which is my original preference).

I am in the waiting room (the physical one) seeing if I can quickly talk to my cardiologist for his input.