Clay's Journal

Happy 1 year to me! On January 12, 2015 around 5:30 pm, I woke up in Duke ICU with a new aortic valve, hemi-arch aortic root job, and a maze procedure to solve some occasional afib. Here's how things can be a year out. My follow up cardiac MRI to check the valve performance was A-OK. Surgeon Dr. Chad Hughes says come back in 2 years. I wore a Holter monitor a couple of days to see if the occasional fluttering I have is afib. It isn't...great. My electrophysiologist (...rhythm guy...Dr. James Daubert at Duke) says I'm having annoying PVCs which are common and benign. My resting heart rate (which was below 60 pre op) is still likely to be 80-110 at any time...for no real reason. It seems hyper-sensitive to everything...eating, exercise, lying down, hot shower, whatever. Daubert's PA says not dangerous and could be due to premature atrial contractions overriding the sinus node...etc...not dangerous...try some magnesium supplements...or metoprolol (to which I seem immune as with warfarin)...go live life. A fellow valver (who was kind enough to talk to me pre-op) just told me that a cardio regimin has helped his rate...as did Paul Rose in a response to my last post. So...I'm gonna try it. I've been back in the gym for 6 months now. I don't sling plates around like before...and I'm conscious of bearing down...but I think I'm making progress towards getting back to where I was. I'm not sure the medical community would entirely approve but I'm gonna live life (within reason...call for hours of operation). So that's me a year later...irritated by an occasionally rapid heart rate, trying to lean out to a studly sub 10% body fat...clean bill. I'm more empathetic, more grateful, working on patience, and still get choked up thinking how far I've come. The photo is before and after...almost to the hour, of me a year after surgery 01/12/15. I'd had vague plans to be kicked back on a beach somewhere warm for my anniversary. But keeping my routine of fighting the good fight...getting stronger...back to normal...seemed more appropriate. That's how it really is. A year ago I was on a table with my heart stopped and held in the hands of my surgeon and God. A year later I'm in the gym working off a recent dessert binge...I'm never gonna be an underwear model for Depends without discipline (damn you cake...I wish I could quit you). As I've said before, everybody's experience is different, but this thing all of us are going through doesn't have to be as bad as we sometimes anticipate. God is merciful and he hears our prayers for each other. So many people are supporting you. Trust that God and your doctors will handle what you cannot, concentrate on recovering at your own pace, and reach out. We're strong together.

Just checking in to share my experience at 6 months after surgery. I hope it helps. The slight numbness in my left pinky and around my incision is pretty much gone. My only remaining issue is that my resting heart rate is still higher than before surgery (87 right now sitting on my couch...57 pre op)). I read that it can take up to a year to return to pre op. or...not. It seems like it's overly sensitive...eat big=rev up, lie down=rev up, whatever. It wouldn't shock me if I had to go back on the metoprolol. I'll do what I gotta. I had a maze procedure to combat some occasional afib. While I haven't had any episodes of chaotic rhythm since I self cardioverted after surgery (see previous post) I still occasionally drop a beat. Sometimes I can feel my pulse if I'm revved up, especially at night. My habit of wearing earplugs at night to muffle outside noise makes the heart noise louder (i have a bovine valve but I swear I can hear it some nights). I don't notice any unexpected fatigue walking up hills or in general. I'm struggling to find things to complain about here. Another benefit of this experience. So now I'm ready to move on to the next level and test my limits a bit. 12 months ago I was in the best shape of my life (ok...maybe my 40s)...traveling all over the country for the first time...taking pictures of Jeff Koons' Popeye in NY...caffeine. Then 6 months ago, January 12, 2015, I let a guy I hardly knew stop my beating heart to replace pieces of it. Thanks Dr. Chad Hughes at Duke. Sometimes, especially on the 12th, I look at whatever I'm doing at the moment and I think back to waking up in ICU at about 5:30pm, and I get overwhelmed with God's mercy and with medicine and the support from people I'll never meet...so many of them here on this site. It breaks me down and I'm enormously grateful. Another benefit of this experience. I chose yesterday afternoon, about the time I was on the table, to go back to the gym for the first time since surgery, 6 months to the day. Frail compared to 12 months ago...a miracle compared to 6...dead set on recovery again. Ask me for a beach pic in 12 months ha! So that's me right now. As I've said before to those who are about to go through this...so many people are supporting you. Trust that God and your doctors will handle what you cannot, concentrate on recovering at your own pace, and reach out. We're strong together.

Hi All...just checking in to add my own experience at 3 months to the others who've written. Just this week, my rhythm specialist officially declared I was out of Afib (I self converted 2 months ago after being in Afib 24/7 for a month after surgery). SO...I'm off the Warfarin...moooo! Speaking of which... In the 3 months post op, I've only had 1 PT/INR reading that was within my "therapeutic" range of 2.5-3.5. They couldn't get me above 1.8 until the dosage was jacked up to 20mg a few days a week...15mg others. Then came the blood in my urine...which I believe is on the "Top 10 Most Disturbing Symptoms" list. Next was the urologist visit, kidney CT, and cystoscopy which I believe is on the "Top 10 Most Disturbing Prcedures for Men" list (look it up). All clear on that front. My heart rate is still higher than pre-op but my doc and others in our group say this could resolve. SO...he said I can drop the Metoprolol too. No more meds. The fatigue is gone now...I guess my hemoglobin is back. I've been walking inclined trails with no problem and I want to do a few sessions of cardiac rehab (monitor me while I exercise) before going back to the gym by May 1. Maybe I'll be back in shape by the Summer...in Australia. My outside left fingers are still a little numb as is around the incision. I can feel my heart at the top of a deep breath but usually not otherwise. I'm doing great...God is merciful. I was walking around today at the Azalea Festival in Wilmington NC...stuffing a brisket sandwich in my mouth...when I remembered where I was 3 months ago today, Jan 12. That kinda sums it up. We have to trust that on the other side of this huge mountain we're all climbing is the rest of our lives...miraculously normal...going to festivals and eating sammiches and being grateful. As I've said before to those who are about to go through this, so many people are supporting you. Trust that God and your doctors will handle what you cannot, concentrate on recovering at your own pace, and reach out. We're strong together.

Hi all, Happy Valentines Day...coincidence that it's next to Friday 13th? No...I think not. Just a quick update of how things can be one month after surgery. So I was opened up on January 12. This week, Monday, I started driving again and returned to the office. I feel really good. I'm still a little tired just after I start stirring around from a dead rest...but I quickly "charge up" and I'm ready to go. My big issue has been Afib. I slipped into irregular rhythm after coming home. Expected. My Metoprolol kept my heart rate from racing away, but my INR still isn't at target so the risk of stroke was a concern. So, my "rhythm specialist" and I agreed to cardiovert (shock) me back into rhythm...after I'd reached my target INR for 3 weeks. Wow...3 more weeks of my heart banging around...tiring. But then...at bedtime that night...I converted into normal rhythm on my own...woke up normal on February 12...my 1 month mark. God is good. My outside left fingers are still a little numb and so is the area around the incision...but I'll take that. I'm ready to start climbing a few stairs or walking inclines. Like I've said before to folks about to go through this...so many people are supporting you. This "thing" can be so much smoother than you anticipate. Expect "wierdness" along the way. Be greatful for the good days and trust that your docs and God will handle the things you cannot. Concentrate on recovering. Thanks again to all for the ongoing prayers and support. We're strong together.

Hi All, just wanted to let folks know how things can be at this point. 3 weeks ago on Monday 12th I was waking up from an aortic valve replacement, Hemi-arch root replacement, and maze procedure. The clock on the wall said 5:30...that's when recovery started. I had my post-op follow-up today. I walk 3-4 miles in a mall every day...walking laps...I have them all in rotation...still can't find anything to wear. The PA likes my walking...despite my being in Afib LOTS of the time. It's expected and meds keep my rate down. I'm sleeping flat on my back and on my sides in my bed all night this week...the smothered feeling is gone. My heart doesn't pound outta my chest anymore (it would rock my torso when I was on my back). Outside fingers on left hand still numb but expect to resolve. 40 seconds after getting out of car and walking, it feels like my pressure drops and I'm tired for about 40 seconds...then I feel the well filling up again and I'm good to go in about 40 seconds. PA says it could be the beta-blocker and lasix...no worries. All swelling around ankles is gone for days...so I'm now off the lasix and potassium. Hemoglobin is returning to normal. My INR is stuck on 1.5 despite recent warfarin increases. I will snack on Rat-B-Gone to resolve on my own...my docs will be impressed. I've been sneaking into my work email and doing small tasks...i might work from home this week. My staples came out today, 47 total...I kinda miss the zipper...it was great for show-n-tell. I feel great...God is merciful. Everyone has a different recovery, but for those of you who are as apprehensive about it as I was, know that it can be so much better than you anticipate. It has been for me. As I've said before, the information, prayers, and support from this community and others around me has made all the difference. We're strong together.

Hi all. 2 weeks ago, on Monday 12, I was cracked open for a Bentall, Hemi-arch replacement, and maze procedure. Today I met some friends for lunch before walking over 2.5 miles inside a local mall. I climbed the staircase from 1st to 2nd floor. Had to take a short break leaning on a bench afterward but then tottered along again. Didn't over exert...felt good. Nothing for pain for days now. Finally sleeping in my bed propped up on a bunch of pillows. Still numbness in left hand but expect to resolve. Still being patient when i have to rest a moment after getting out of car and going into store. I believe I have episodes of Afib, which I and my team expected, and for which I'm on meds anyway. The maze could take 3months to be fully effective. I think the puffiness in my legs and ankles is subsiding. I have a follow-up with the surgeon on Feb 2. Everyone's recovery is different...and I could hit a wall tomorrow. But I want folks to know that the recovery doesn't have to be as rough as we sometimes anticipate. I believe the prayers and support I've received here and elsewhere has made a huge difference in my peace of mind. I don't worry about the things I can't control...they'll resolve if meant to be. I'm free to enjoy walking and getting stronger and this Ben & Jerry's Chubby Hubby ice cream I'm eating that should be classified as a controlled substance. Now ask me tomorrow. I'll keep you up to date.

Hi all, I had a good walk around the mall a few times on day 9. I'm learning that I have to rest a moment after getting into the building from the car...like having to adjust to changing gears...but then I'm good to amble around. I'm focused on staying upright and moving instead of speed. I climbed the escalators for a challenge a few times which made me a little winded at the top but Ididn't have to stop. So good to get out and off the couch. I'm on Lasix but still having puffiness in lower legs n feet and belly looks a little bloated. Day 10: Good visit with my new primary care doc (didn't really have one prior to this...never sick...then boom). He's unimpressed with swelling and Says I'm looking good. Says I'm in Afib at the moment (i kinda felt it) but is not unexpected. I'm on meds for it and my surgeon already told me the maze procedure could take months to be effective. My INR is still a little low so I'm bumping the Coumadin one dose and checking again next week. Lungs are clear despite my having to clear them throughout the day. Good report. Walked laps around Wal-Mart before meeting friends for dinner and bingo! Good to get out.

Hi all, just checking in. I'm over a week out now and still feeling good. The discomfort is between my shoulders...I think I'm gonna get a massage. I went into this with a mild cold and congestion...still having to clear my lungs throughout the day. However...I haven't needed the pillow...no big discomfort...just annoying. Still sleeping in the recliner where I can cheat on my side a little. Getting more sleep past couple of nights. I talked to the PA yesterday regarding being tired sometimes when I get up or when I start to walk. The takeaway is "you're still anemic and it's normal that you have to rest sometimes because you just had open heart surgery...stupid". OK. Vitals are good...INR on track. Got a good walk yesterday. So...coughing isn't horrible for everyone, you might be tired and have to take it slow, sleep is tricky, find someone to rub your back.

Hi all. Not much good sleep over night 5. Heart rhythm is steady but likes to pound HARD when I'm flat or move...then I feel breathless. Called doc again in the evening and got cleared for an extra lasix.he thinks the fatigue is probably normal for someone who's had, you know, open heart surgery. I walked to the end of my street and back but felt like I'd run a quarter mile. I guess I'm pushing it because I feel so good otherwise. No sternum pain, zipper looks good, appetite is good. I've been coughing up a little clear stuff...but no big discomfort (i went into this thing with a minor cold). I'm finding that clearing my lungs is easier done on knees n elbows in bed...seems easier to move stuff on a horizontal than standing upright. Hughes must have wired my sternum tight because I've felt no movement or pain...thanks doc! Cousin's family brought lunch...got to use leaf in the kitchen table! Rode errands with mom. Stayed in car because everyone in North Carolina is sick. day 7 will be treadmill day...gonna get on it every other commercial (or so ha). Time to get to work. I'll keep all posted on the winded thing. For those about to go this, everyone has a different experience and recovery, but take comfort that mine has been good so far. I know the prayers and support has made the difference. We're strong together.

Hi all. sleep was hard last night. My bed was comfortable but my breathing was labored...like being smothered a little. At least I got some deep diaphragm exercise. My heart pounds like a hammer when I'm on my back...read about that here. I called the doc's office and they upped the lasik. I'm thinking some drainage is accumulating around my lungs. Kind of expected. Low hemoglobin doesn't help. Wish me luck for tonight. I really want to be strong enough to walk around. On that note, a family friend delivered a treadmill to my house today. People are awesome. Visit from another friend...Chick-fil-a with mom...Target for a bit. Other than winded...I'm doing great. Gotta tell it. We're strong together. Time for a few meds now.

I was back home today around 4pm. Ham sammich with parents. Mom fills my prescription list that could supply a rest home. I feel great but tire very easily. No walking around the block for me yet. My goal tonight is a good sleep...wish me luck. Nothing is assured for any of us. We read the heartbreaks of people who fight hard and get knocked down...it's part of the story all of us here share. But for everyone who's as afraid and uncertain as I was before finding support and comfort on this board...know that I got cracked open Monday morning...and I'm sitting on my sofa Friday...eating brunswick stew. I've ached more from a hard gym work out...I'm on Tylenol only for pain. I just want some good sleep and the strength to walk down my block tomorrow. God is merciful and he hears us pull for each other. I know this tonight. Now...ask me tomorrow!

Hello Heart Family. Sorry for the delay in posting but just getting time to do so. God is good. 7am Monday surgery...woke up at 530pm. chest was uncomfortable so they started working on my pain meds. Got the pain under control. Dry mouth...no water for you. Chest tubes out. Finally water.I walked that night. Glimpses of family. Day after (?).Pain under control...two large chest tubes pulled. Back is aching lying in same position for so long. feeling nauseous...didn't yak...strip on my nose smells like rubbing alcohol. Removed the leads from my head...cold acetone feels nice on my head. Removed the tube from my neck. Time to step down. Want to walk a little ? Yeah. I walked all the way from ICU to my room about 10 minutes. Felt great n strong n victorious. all say remarkable...maybe a first...rock star. No real pain. In room calling friends and talking to family. God is good. The truck hits. From nowhere I get lighthearted and nauseous. Back in bed...squirming...gimmie meds. We think I was crashing comming off the anesthesia and maybe too much oxy. lots of folks in and out. Sleep is off and on due to achy torso. 0Wednesday Day 2 after. Zombie head...nauseous..revolted by food. Everything tastes amplified...too sweet...too salty...ughhh. I'm near catatonic...spacey. I take a chance and go on Tylenol only...ditching the oxy. Outside fingers of left hand a little numb...doc say normal. You gotta poop...drink this fizzy lemon stuff...uggghhh. Removed Foley cath (that was something new). Only one chest tube now. Finally got some "digestive relief". Doc says I'm doing remarkably well. I think so too. Thursday day 3 after. Another kinda achy night but not as bad as before. Only taking Tylenol for pain...which is essentially none. No pain from incision or around heart. All normal or better than says my team. visit from buddy. Sent mom to recover at my house and pulled dad for nurse duty. Good lunch today...still eating light but...appetite is returning. Feeling weak today but gonna cut myself a break. Docs say my hemoglobin is low and lack of hydration and nutrition didn't help. All tubes are out now. Visit fRom buddies. Resting. Doc days discharge tomorrow. My take away To date: Pain is mostly muscle ache...lying in one position..under a truck tire. I slept on my side last night for a bit. I really have no pain from the incision or around my heart. Nausea and zombie head has been my bane. Anti nausea meds are my friends. Get softeners and stimulants early to move your digestion...else face "more aggressive measures". My heart pounds like a hammer. Prayers for me and the support from our community and the faith that God has a plan has made the difference for me. I'll keep posting as I go along. Pic is me last night.

Hello Heart Family. Early tomorrow morning I have open heart surgery. They wheel me behind the curtain about 5 a.m.. Before... and after. I checked into Duke today. Everyone has been great. Wheeled to my room. Family in tow. Hospital gown and sweatpants. IV in place. visit from nurse Casey.blood drawn.visit from anesthesiologist. Hang out with family. Dad brings me a sandwich.visit from friends.P sample. Hello cousin. Final consult with surgeon.goodnight dad see you early tomorrow. Family prayer with cousin.shower with antibiotic soap (have I ever been this clean?). Mom sleeps on flat recliner. Waiting for skull to be wired for brain monitor. Sheared tomorrow. I'm calm...and grateful. I'm grateful for my family...friends...this group...the prayers...and the opportunity to know faith...to relinquish to it. Lots of before and after for me. now ask me tomorrow...ha. I'll share the rest of my experience with everyone as soon as I can. Until then please keep me and my family in your prayers. I know it has made all the difference.

Hi all. Thanks to everyone who continues to post well into their recovery. I know everyone has a different experience, but it's a comfort to have some idea what to expect. So I'm wondering if any of you have already had a redo of your tissue valve. What was your age when you received the first valve and how long did it function properly? Any regrets getting the tissue that requires a redo? Did anyone switch to a mechanical for the redo? Anyone had a TAVR as a redo?