Rob's Journal

Hello Fellow Heart Warriors! It’s been awhile. All good here. The 5 year anniversary milestone has come and gone without issue. I’m fervently working on going “pencils down” on the career as (an early) retirement is fast approaching. I’ll be in better touch with more time on my hands but I wish you all well! ❤️💪. (Adam, it seems we can update our email address in our profile but it doesn’t seem to feed your newsletter distribution list. Can you ping me directly in email to get those synched up? My old email has to go…. Thx, Rob. Go Blue!)

HW’s, I have been away for far too long! The implicit truth is that things are going well if I am not thinking about my heart valve, right? And that is the truth. (But it can always change.) On September 26th, 2021 marked my 3rd valvaversary! Still tickin’. Covid — and Michigan winters — have conspired to make it harder to get footsteps and exercise. But everything else has been pretty normal! Work is a pretty heavy burden, too, so I have to remind myself to manage that. (Tips and tricks welcome.) We lost the originator of KOKOPOR on August 15th. My father passed away. Cancer is brutal, but he fought. And he tied, he didn’t lose. Because when cancer loses a host, it too loses the fight. So Dad was 1-0-1 against cancer, having defeated prostate cancer and playing to a draw against lung cancer. His persistent optimism was his secret weapon. I bought his pulmonologist and oncologists monogrammed surgical hats. You guessed it : “KOKOPOR”. Keep On Keepin’ On Press On Regardless What did I learn that is helpful for us? Heart valve issues are challenges. But there are worse things. Truly. Be happy, folks. The recovery side is there for you, so hire the best “black ops” team you can hire to get you there. Experience matters! A person (or team!) will *literally* have your heart in their hands. Make sure you invest as much into your care as they do and do high fives with them every chance you can! Including the trip down to the OR. Your attitude will infect them and it may just empower them to perform the best surgery they’ve ever done. Do everything in your power to carry your portion of the load and bring your best game! Face recovery with determination. As soon as possible after your surgery get MOVING. Positivity and faith. Secret weapons for us all. Take Care! Keep grinding. Moshi Moshi. Oh, and Go Blue!

Hey HW’s, I hope all are well and have climbed the wall of worry and lept over it or are getting a boost on the backside to get over it now! This heart valve thing is scary and it makes everything stop. Until it all starts again! And you can do amazing things after you make it from the waiting room to the recovery side. I am 2.5 years into my journey and got 4 miles of walking in yesterday and 45 mins on the bike today. According to my FitBit, my second one since OHS, I’m on day 16+ of a walking 10,000 steps or more. This valve thing ain’t fair but, you know, there are people who have it much worse than us. KOKOPOR And moshi moshi to everybody who knows what that means (as it relates to valves, that is). For those among us who celebrate it, have a blessed and happy Easter!

Hey HW’s. All is well on this end. I reached my two year anniversary on Sept 26th and meant to post everybody. Here it is Oct 26th and my only excuse is that time flies! To all those on the recovery side we need to welcome The Terminator to the club. He and Mick Jagger and the rest of us. We are all human beings finding our way! Cheers to us! (At least for now, anyway!) To all in the waiting room, go forward with determination and research. Know surgical skill, science, prayer and positivity are powerful forces. Bundle all of them together and give high fives all the way to the OR. Ridiculously talented surgeons (and their special staff!) at some of these phenomenal institutions do their magic 30-40 times per week. To them, this is like replacing a “check valve”. Invest at least as much as they do in your planning and aftercare. Level the playing field and put odds in your favor as much as possible. You will be walking and exercising before you know it, glad you had the strength and courage to take the step of saving/extending your life. That is the plan, anyway. I hope we all stretch out our timeline. Good luck to you in your journey! 2 years down. Decades more to follow? That’s the plan. KOKOPOR (Well, that and Moshi moshi.) (Oh, and Go Blue!)

Shannon was asking how things were in CC this week. To say “ghost town” may not be accurate because they were staffed up. A good number of people were there but all behind desks, in exam rooms, in the lab, etc. But those visible were only the folks greeting patients and the prospective desks. But the ratio of staff to patents was probably 20:1 when normally it is 5x or more the other way. Easier and safer than going to the grocery store.

Well HW’s, I made the trip to Believeland earlier this week for a semi-annual visit. Tire rotation, oil change, many of you know the drill. This is the third semi-annual visit, the last being in November, but it was the first echocardiogram visit! Finally. Some raw data, right? Amen. Prior visits were stethoscopes and BP cuffs and this one was all that plus pictures, video and audio from almost all angles. I am quite sure full feature length movies can be done more quickly and with less effort. But the outcome is a good one. “Pristine.” My aortic valve is doing well! My cardiologist was very impressed. Next he said: “Come see me next year.” These are semi-annual visits for a reason but I am completely pleased to listen to the new instructions! The tech doing the echo had never seen my valve set-up and didn’t know what it was. She was not really able to tell from the images that I *have* an artificial valve. That evidence tracks with my cardiologist’s comment from a year earlier which you can scroll back and find in my journal. For those of you who have not read my story, I was diagnosed with a bicuspid aortic valve with severe regurgitation. I was 51 years old at the time. From there, the story gets more interesting. Remember, at the advice of my cardiologist, we “never plant the flag of victory”. So I will stop myself from saying more. We never, ever know how things will progress. The title of my post today is a clue long-time friends will recognize. For those who are new, I’ll simply refer you back to two places: (a) my journal at the 9/25/2018 marker and (b) my review of Dr. Gosta Pettersson in the “surgeon finder” section of this site. One important comment: we all make our own decisions and select what we think is the right valve for us. But a thought to weigh and balance: there is at least one additional alternative to consider beyond either a mechanical or bioprosthetic valve. I am very happy — at least so far — with my choice and hope my story helps others. If anybody wants to reach out to me personally with questions please find a way to signal me here and we can email. Join me in making the cockroaches and twinkies scared that we will outlive them. ❤️💪 KOKOPOR P.S. The hospital was extremely quiet and nearly empty. Now would seemingly be an ideal time for OHS. The added complexity and hassle for pre-quarantining and the subsequent restrictions on visitors notwithstanding, it would be easy to imagine recuperating at home during lock down as one way to get out of the waiting room and life headed in a positive direction! Pivot and look at the positives of this crazy time!

Folks, I have been away from the site for several months. I thought long and hard about how to offer an update on Christmas Carol and just lacked the words. Plainly put, she didn’t make it. I struggled because we rarely (never?) mention bad outcomes in this community. During my time here, I remember only a couple of times we lost a HW and mentioned it, so I was quite reluctant to say anything here and potentially dilute positive energy we all work hard to create and maintain. It didn’t feel right to be prompt in updating folks with that kind of news. She fought like hell to jump higher and higher hurdles every day. Eventually, the obstacles piled up and overwhelmed her. We lost her January 10th. We had a difficult holiday period. The months of January and February rocketed past us. We are only now getting a handle on what is “normal” and now even that has changed. We are doing well. Today marks my 1.5 year vavlaversary and it feels very good. Moshi moshi. Hopefully all HWs are continuing their journey with success and find a way to maneuver through these difficult times. You can do it! We will be stronger on the other side of this pandemic. Let’s all make it! KOKOPOR

Well my fellow Heart Warriors, it has been an eventful week! My mother-in-law — let’s call her “Christmas Carol” — will make it out of Ann Arbor tomorrow (?, fingers crossed) with a mitral valve repair and other bells and whistles. Thank you, Dr. Steven Bolling and Team! UMich has some awesome features, one of which is the attached “menu” for an experimental process of providing Comfort Coaches. Novel! Inspiring. Relaxing. Another feature of the stay was bedside art/music. Last night, a musician came by with an acoustic guitar and played three songs and sang. Great to get our minds elsewhere! In the halls today I saw a harp (and harpist, of course) when heading to the cafeteria. Dr. Bolling was awesome. Merry Christmas, HW’s. We keep getting gifts aplenty. ❤️💪 🎄

Last week I made it down to Cleveland for a “one year” check up. I expected an ecg, echo, stress test and/or blood work and found out that none of that was happening for me. A stethoscope, BP cuff and blood oxygen sensor was all that was on the docket. Shocked, I was blissfully annoyed I made it all the way there (300 miles one way) to find out everything is fine. Really, simply “fine”. (This is me *not* planting the flag of victory.) Dr. Menon commented once again that without any backstory, a cardiologist might not know I have an artificial valve. (Sadly, he broke the uninterrupted streak by not referencing some kind of automobile or race car analogy this particular visit.) I am blessed. So far, so good. Those in the waiting room put your faces toward the sun, straighten your back, breathe deeply, walk forward and seek answers to the questions you most fear. Unpack them, demystify and decompose those things that are known (or suspected? perceived?) complications for you and design a solution that works for you. Be strong, be confident. Pray and pray but make good on the science, too. Find the team you need and high five your way down the hall to the OR. Positivity can be a difference maker and might be the thing that saves/extends your life. Then work hard. Do what these gifted and dedicated professionals tell you to do. Walk, walk, walk. Walk, walk, walk. Two news worthy things for Adam and the broader community: 1) Dr. Gosta Pettersson is apparently still doing surgeries — he was in a complex surgery on Tuesday and I could not drop by to say hello and give him my thanks — but he is also mentoring/coaching/strategizing other CC surgeons to further develop the team. 2) Dr. Shinya Unai, a protégée of Dr. Pettersson, is apparently performing the Ozaki procedure with increasing frequency. Check it out. Moshi moshi. Thanks to all here! Appreciate your support and all the informative posts. You helped me, I hope I am paying the favor forward. All is good. KOKOPOR.

It was 6am today exactly one year ago that Dr. Gosta Pettersson and his team at CC began their day’s work to give me the biggest gift! All went well that day and it continues to go extremely well. I had some concerns in the past year that were really me taking some extraordinary precautions: trip to the ER on New Year’s Eve and a trip to the ER last week to wrestle with a mysterious and slight fever and a couple of days after cardiac rehab that I just didn’t feel “right”. But all is fine, then and now. (Listen to your body, know your body’s natural equilibrium.) Earlier this month, I left metoprolol behind and am on a low dosage of a statin and one baby aspirin daily. I’ll see my cardiologist in November for an annual check up including a battery of tests. I’ll know more then how good things are going. (More race car analogies, I hope.) For those in the waiting room: 1) do not be scared 2) visualize the future, do the most homework you can do, find the solution that works for you 3) find the cardiologist first, surgeon comes next after recommendation of cardiologist 4) be positive, at all times if possible 5) find ways to measure your progress — FitBit and BP cuff or other tools — so you can be very sure you are improving but *also* so you know what your body is capable of so you can notice more easily when things are not exactly right 6) read our journals; find out that you too can “do this” and probably do it even better! For those on the recovery side: 1) thank you, Adam for this wonderful site. A true game changer! (I hope you day in Ann Arbor today goes well!) 2) thanks to everybody ahead of me who helped answer my questions and alleviated so many concerns! I could not be where I am without the guidance and candid feedback and coaching. 3) Thanks to those both ahead and behind me who have taken comfort in what I have written and shared here. You have inspired me and I hope to have helped you get through your journey! You are all courageous and caring people worthy of living a ridiculously long life. Let’s make that happen! Year 1 down. Years 2 through 30 now on deck! Rock and Roll. KOKOPOR.

My fellow H-Dubs, As I sit here and imagine the post I hope to make to celebrate my one year “valve-a-versary”, the real update is that my mother-in-law is laid up in the hospital waiting for an opportunity to heal enough to get to the next stage: open heart surgery. Her aortic valve and mitral valve each are experiencing significant regurgitation. She falls into and out of a-fib at least a few times per week. She is handling all in stride — an amazing feat, to be sure — and is wearing an “angel” vest. All necessary tests have been done, and surgeon was scheduled for a consult this past Monday to schedule OHS. But, as of yesterday, surgery is at least 3 weeks out. Her oral surgery is now two weeks ago. But recovering from that was bumpy and involved several trips to the ER. That situation may have complicated matters because now — after a severe bout of dizziness we thought was vertigo — she has received a blood transfusion and is being treated for a a stomach ulcer, which must heal before attempting anything on the heart. She is not yet fit enough to risk the surgery. As of this morning, we engaging a back-up plan — a “self-referral” — and planning on getting her to UMich on Sept 30th to see Dr Bolling. Prayers, please. KOKOPOR. ❤️💪 and 🙏

I was purposely waiting for the 12 month mark before posting, but I have to ask for some input. (An update on me will fall into September, if I play my cards right.) My mother-in-law was diagnosed today with regurg in her aortic and mitral valves. Her need is somewhat urgent, so there is a need to stay local. Fingers crossed! (Prayers needed, too.) Questions: 1) Since I was only ever researching AVR, the mitral valve is new territory for me. From posts I’ve seen here over the last year, repair seems to be the preferred approach. True? Clips? Other? What info or advice do you have on approaching that? 2) Pig valve for AVR is the recommendation. I only ever researched the bovine. What is the state of the art pig valve? Manufacturer? Model? What should we expect for the choices? Anything to avoid out there? 3) Also needs some oral surgery before being a candidate for OHS. Seems like a tricky amount of stuff to sequence and to do so quickly. She will be on blood thinners. Do-able? Any experience here for anybody? 4) My wife will go nuts (and divorce me) if the after care becomes her responsibility. How do we get advanced/skilled nursing for my MIL? Medicare/Medicaid offsets the cost? Strategies for how to maximize her benefit are ___________ . Thanks in advance to all! Hope everybody is doing well and finding your own way to make the twinkies and the cockroaches scared. ❤️💪

Now targeting (at least) 29 years and 11 months of runway..... Remain calm and climb stairs, my friends. ❤️ And ❤️💪 to all of you out there, whether in the waiting room or on the recovery side!

Well HW’s, my seven month post-op marker came and went and I completely forgot about it. That sums up how things are going overall. BP is averaging 115/74 for each of the last three months (taken twice daily, average of 3 readings each time) and my resting heart rate has steadily declined to about 62 bpm this month. The downer — if I can say that — in the last few months is that I have plateaued somewhat and improvement is harder and harder to come by. But I know I am blessed and am quite reluctant to say anything. But this is the story, and I am sticking to it. (See paragraph near the end below.) But today I saw my cardiologist for a “6 month” follow-up. It really comes a bit more than 6 months after my “6 week” follow-up the first week of November 2018. So roughly 8 months since surgery (Sept 26. 2018). All is just fine! No tests — he is saving those for next time — so simple stuff like a discussion, blood pressure (2x), pulse, blood oxygen reading and a good ole fashioned stethoscope. Thumbs up! Apparently, the new aortic valve is doing quite well. He continues to draw analogies between all things of the heart and automobiles, this time race cars. (Always entertaining to try to predict where he will weave in a story about treadlife, carburetors, torque, airbags, seat belts or even crash test ratings). Today he said “the valve is running like an F1 Formula race car”. Having *heard* F1 race cars several times in my life, I believe I am a bit quieter. 😜. But I take the compliment and will avoid — you guessed it — planting the flag of victory (one of his other signature comments!). Makes it worth the 300 mile trip (one way)! The gig now is all about longevity of the valve. He is (once again) very impressed and the comparisons to tissue valves are — to this point — favorable (but we all have different fact patterns and we ALL make the choice which is perfect for ourselves). The real mystery in this experiment — and it is just that, an experiment — is what happens in another 10 years (or longer!). I know there is probably going to be a need for a re-do surgery at some point. By then, I will be older (i.e., seeking a shorter term solution than at age 51), tissue valves will be even more impressive than they are today and TAVR is going to be commonplace for the second (third?) tissue valve. For those of you who are 50 years old (+/-5 years?) there may be options for you that you have never heard of. Please do your research! If you want/need 30 years of runway and can’t find a combination of treatments to get you there, getting as many trouble-free years as possible *up front* might be exactly what suits you. For those of you who don’t know what procedure I am referring to, please see my journal on Sept 25th and my review for Dr Gosta Pettersson at Cleveland Clinic. Next (scheduled!) visit is in 6-7 months. More to follow! Keep grinding, friends! ❤️💪

Though he never became part of this community, my next door neighbor is undergoing OHS tomorrow for mitral valve repair along with a double bypass. Tonight and tomorrow, please pray for Mike, his family, his surgeon and the surgical team in Traverse City, MI. (He had it scheduled for last week but he got bumped due to a heart transplant. Once again, the “patient patient” rule came into effect!)

I’ve imagined writing this post for a long time. In my head over the past six months I thought up so many things that I thought would be funny, interesting and helpful. But when the time comes to put them on “paper”, I am really at a loss. So here goes with a quick version: 1) To those in the waiting room, you are suffering the hardest part *right now*. The wait is horrible. It messes with your head. Be strong and recognize how strong you are. 2) Seek out information. Absorb it from all the (reputable) sources you can. You never know when you will face a new twist or a curve in the road and the info you had before is not going to help the new challenge. 3) Avoid sodium. It is evil. 4) Walk. (I’ve worn out a pair of Nikes already.) 5) The support here is AMAZING and one reason I am succeeding. People here are so caring and so supportive. I hope I am contributing! 6) There are more options out there than pigs, cows and titanium. It depends on your situation, obviously, but for those of you who are 50 years old (+/- 10?) you have to do some research. I would refer folks back to my posts in my journal to see my whole story. I am a recipient of an AVR that is not your normal set up. (Greg, I cannot get golf club covers like yours, for instance. Christopher May, I can’t match your fashion statements!) But we are stretching the boundaries and it is working well! All is good on this end! I hope to write (at least) 60 more semi-annual updates! Moshi moshi!

I saw an article from CNN for those monitoring cholesterol and tried to post it here but couldn’t get the link to stick. They measured the impact on heart disease, coronary events and risk of stroke per egg yolk consumed. Several studies, 29,000 people in the US over an average of 17.5 years. Northwestern University did the analysis. Single digit percentages of increased risk for each half of an egg yolk consumed. Yikes. Granola and fruit it is! I’ll see if I can find the actual JAMA article. It might be easier to post a link.

It is so easy to get swept up in our own sagas while going through the heart “refurbishment” process we need to take a step back and realize, recognize and reward our rocks — those people who form our foundation of support — our spouses/partners. I could not have done any of the things I have done without the support of my wife, Michelle. ❤️ So with that, yesterday being her first birthday since my OHS, we spiked the needle and made it about HER. Hotel suite, champagne, chocolate covered strawberries, dinner, snuggle in bed watching “A Star is Born”, in-room dining this morning and, for the next act — drum roll, please — SHOE SHOPPING. What a trooper! She deserves all of it and more. Be sure to take time out and visualize what life would be like without them and — deep breath — how their lives might be without yourself. Ugh, right? Keep it real. We aren’t permanent. Hold hands and take a walk today! (Even with sleet, ice and wind like we have in Michigan.)

Well, the timeline got stretched out due to a variety of reasons — none of which are related to my health (or anybody else’s) — but I finished cardiac rehab today! The holidays, a few business trips and several ice storms made it challenging at times! For those who doubt cardiac rehab, DON’T. Please do go and please do the whole tour of duty. There were several times where I was glad to be wearing the monitor and the safety net the whole set-up provides. I walked out today having an established routine and confidence that I can go anywhere and get the heart pumping! I did read a few articles that were interesting and inspiring that demonstrate the improvement in the “6MWT” and your “6MWD” as well as your improvement in METs are highly correlated with lower cardiac risk and fewer hospital admissions. What are the acronyms, you may ask? I am tempted to leave them for you to search out! OK, so I’ll end the suspense..... 6MWT = Six Minute Walk Test 6MWD = Six Minute Walk Distance METs = Metabolic Equivalent of Task Bottom line: we want improvement in these measures and cardiac rehab helps these! In November, my 6MWD was 2,034 feet. Today, it was 2,234 feet. Calc that out and I went from 3.7 mph to roughly 4.2 mph, an improvement of 8%. At the end of this whole deal, I am confident taking my heart rate up to 150 bpm, walking 4 mph at 5 degree incline for 30 mins and found my limit on certain other machines. I often went 10-20% longer on each machine and got 45 mins of exercise when I was only expected to do 40. It becomes addictive! It was WELL WORTH IT and I highly recommend. This is even though I didn’t like the added complexity of scheduling the visits during the workday and I was not as blessed as some of you who had a lot of commeraderie and high fiving compatriots! My shop was pretty bland. If prescribed CR, please go and don’t stop. If you were not referred to a CR, you should definitely inquire! Not much else to report, folks. All is good on my end and I hope the same is true for you, too!

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.)

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

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!).

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!

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). ❤️💪