Christopher's Heart Valve Journal

After almost two weeks at the kennel, ole Charlie Hustle was happy to see me.

What a day yesterday was. Had my first doc appt since surgery yesterday. It was suppose to be next Tuesday, but they gave me a Rx for only half of the pain meds that I needed to get me until Tuesday. Thanks to our opioid abusers and knee-jerk laws, I had change my appt to Friday, travel to Cleveland, and obtain a double top-secret, little orphan Annie decoder ring needed, special piece of Rx paper to obtain the rest of my meds.

Well, the appointment went great! Labs, X-ray, and EKG were all great. Office visit went great as well. I even obtained my double top-secret, etc., etc. Rx. She even told me that once I was finished with the Rx painkillers, since I only had a mini-upper sternotomy, I was allowed to drive. Yay! I’ll take that.

So we trekked back to Appalachia armed with that Rx like I’d found Willy Wonka’s golden ticket. I ran a few errands with mom, picked my daughter up from softball practice, and eventually hit my local pharmacy to get my three Rx’s. They filled the two that the doc’s office had called in, but told me even though I held the special piece of government paper that made me the keymaster and made the pharmacist the gatekeeper, she sadly couldn’t fill that Rx until a week after I had filled first Rx for the same meds. I explained everything about how they didn’t give me enough initially and this was the rest of the order and how they had changed my appointment and how I’d trekked out of these here hills all the way to the Great Lakes just to obtain this special piece of paper and I had hand waving for visual aid and sound effects where I felt that they would apply and punctuate like Victor Borge and told it just like that all while clinching my heart pillow...and she said she was sorry but the law is the law and that neither she, nor any other pharmacist in Ohio, could fill my Rx until Tuesday.

So with that I returned home, overdue for my pain pills, but still having a few which would last me through Saturday. I ran through several options in my head and finally decided on a plan. I placed the remaining pills on the shelf knowing that they were there if the pain got bad enough. I took Tylenol and ibuprofen and decided to see how I could do with just that, coupled with a fresh supply of lidocaine patches. I wasn’t in very much pain and was already several hours past when I was scheduled for my next pain meds.

So here I am, 30 or so hours removed from Rx pain meds, 8 days removed from surgery, doing just fine with regular Tylenol and ibuprofen. Clearly remembering the words of my doc, no Rx pain meds=driving, I fired up my Jeep and drove to the boarding kennel to pick up my dog.

I’m not sure what I’m going to do with that unneeded piece of double top-secret government paper Rx. I live in an area that has been hit extremely hard by the opioid epidemic, so I don’t take it lightly. I jest only at the process that has been put in place and wonder how much, or if, it is even helping. The opioid crisis is alive and well, but the silly process has created a hindrance for those who truly need medication.

So anyway, every day if better than the last with more strength and abilities. One week out, so far, so good!

Fired up my tractor and watched my dad work. Turns out Massey Ferguson increased my lifting weight to 600lbs. 😂

Out to do some walking with mom at the mall. Here’s my other cow heart shirt. For those who asked, I bought them on Amazon. Where else???

Sorry I haven’t updated a lot. It’s been crazy busy since I was released from the hospital yesterday afternoon. Yep, I made it out on the projected date, four days after surgery. I think I wore down the floors with all the walking my daughter and I put in on the 6th floor cardiac unit. They said they want me on the move and they didn’t need to tell me twice.

I got home yesterday evening and by home I mean home home, where I grew up. I’m shacking up with my parents for the rest of this week. Turns out after my lovely girlfriend, Yolanda, updated you all about my surgery, she and my 4 year old son, Harrison, went back to their hotel room with flu symptoms. As I spent the night in the post-op ICU, Harrison got to check out Cleveland Clinic Children’s ER. He tested positive for the flu and Yolanda wasn’t far behind. So, they left for home on Saturday morning and I haven’t seen them since I was extubated. Per my doctor’s urging I came home to my parents’ house and will be holed up here until this weekend when the flu runs it’s course and everything in my house gets bleached or burned.

I did more walking yesterday once we got settled in and put in a 25min/1600 step jaunt around the local Lowe’s with my dad. I’m doing steps without a problem. Lots of up and down since they live in a split level home. The only issue I have is when my pain meds run out, I’m ready for more. My incision site is really sore and I suppose that’s normal since my sternum was partially sawn in half.

Weather was very nice here today, so I got to spend a little time outside and even rode with my dad to pick my daughter up from her softball practice. People are floored that I’m not laying in a hospital bed 5 days after open heart surgery. I’m loving it and giving it all I can to get back to healthy and having a better heart than I’ve ever had!

I owe a lot to so many people, but I have to say that this website and the people here have to be at the top. This has been my number one spot for support, education, and guidance since I found it. I couldn’t have felt better or more confident when rolling into surgery last Friday than I did. I have a long way to go, but think I have a pretty good head of steam on and I’m still shoveling coal.

Dad and I went to Lowe’s for a walk today. Rocking my cow heart shirt in this sweet selfie!

This pic shows my mini-upper sternotomy scar. I’m still puffy and full of fluids, but I’m getting back to normal.

It’s hard to find a a spare moment to post between doing tasks for recovery and how I feel like I could sleep standing up.

I guess I’ve not yet mentioned the details of my surgery. Doc decided to go with a mini-upper sternotomy since he needed to add a root enlargement to my AVR. Turned out that in addition to the severe calcification, my bicuspid aortic valve was also extremely small for the size of me and my heart. At the time of surgery, my valve opening was about the size of a pencil and should be between the size of a quarter and a fifty cent piece. Not good! But all is well now. He enlargedy arortic root and placed nice big ole 25mm Imspiris Resilia bovine valve. I didn’t get the smaller side incision I wanted, but more and most importantly, I did get the great result I wanted! Thank you to Dr. Johnston and your team!

I was able to get into my own room on Saturday evening. From then, through Sunday, I had some speed bumps with drawing my blood and IVs. Due to the fluids that I’ve been holding (at least 30lbs worth since I’ve been admitted), my veins have been tough, deep, and unwilling to cooperate. I think we’re past that now due to ultrasound sticks and fluid coming off, but it sure made for a rough day on Sunday. The highlight of the day was taking my first couple of walks. They’re hard the first time, but I’ve found I can at least double the time and distance with the next walk.

Monday was a great day! Walks increased, I weened off of some of the pain meds, my chest tube/pacing wires were removed, and I got to shower!!! I feel like I’m on more of a normal daily schedule now with eating and sleeping, but I’m still really tired and I don’t have much of an appetite. I do have to say that as grateful as I am to be at the CC, I’m that much extremely disappointed in the food and food service department here. Small price to pay, I guess.

Goal for today is more walking, increased strength, and having a healthy 💩💩💩! If I can do those things, especially the last one, I just may be busting outta here. Everyone join hands and give me a good luck grunt! 😳

I love being on the recovery side!

It’s me. I’m still in ICU waiting for an available room. I am sore. Feel like a truck hit me. And very very very sleepy.

We visited with Chris several times in ICU after we spoke to his doctor. The first visit when he was still out and intubated, then when he was awake, and finally after he was extubated.

He was understandably groggy and we agreed to take a food break and come back later this evening.

I will let Chris give more details later but he will be feeling so much better in ways that we didn’t fully realize at the start.

Glad to see him awake and they tell us he will look even a million times better tomorrow.

- Yolanda

Page: “Major portion underway” at 9:16 a.m. while we were in with the patient family group meeting with the nurse coordinator.

They prep families and keep updated very well here in Cleveland.

- Yolanda

This is Yolanda. We’ve all had an early morning... but the man of the hour is handling it like a champ. We got to see him off, give kisses and hugs, and hear a wonderful prayer by the chaplain.

They paged us at 8:14 a.m. “incision time”. Dr. Johnston is doing his first work of the morning on our Christopher. No turning back now. He’ll come out even better than before... (if only they could take out the cranky bit ☺️). We’ll take him as he is - with a new valve hand picked by himself.
Thanks for all of the supportive words you’ve shared. You’ve helped him prepare for this point and more.
We’ll update more later. Now, for more waiting! ♥️

Early morning waiting...

It’s go time! Enjoyed my theee whole hours of sleep. Had to be here at 5:15. As of 5:13 the shuttle bus from the hotel to the hospital hadn’t arrived. I walked out front and could see where I needed to be. Google maps said .3 miles. Went back in the lobby and told my daughter to saddle up! Nice brisk walk on an 18° Cleveland morning is just what I needed to give that ole aortic valve one last hurrah. Checked in at 5:18. Not too shabby. Who else can say they borderline jogged to their open heart surgery? Needless to say, my parents weren’t impressed with me. 🤷🏼‍♂️👍🏻😂

Long day today. Finished all the pre-op testing and appointments. Finally got to meet my surgeon, Dr. Johnston. I’ve read and watched so much of his work that I felt like I already knew him. It was kinda like meeting a celebrity. Well, I guess it was. Haven’t met too many of them. The guy who voiced Papa Smurf for a few episodes of season two and a cereal commercial came to my Jr High for an assembly, so I guess he counts. I think I still have his autograph somewhere.

Anyway, Doc was great. He was very confident and made me feel the same way. I have to be there for surgery at 5:15 in the AM. I asked him if he was a morning person. He side-eyed me with a smirk and said he was a morning person, an afternoon person, and a night person. I’ll take that. Dudes like that always win.

I’m excited to say that I’m getting the valve that I want, the Inspiris Resilia! It’s the latest and greatest. He said that although trials look great so far, only time will tell if it has the extra longevity that they’re expecting. When he analogized that to buying a car in the first model year, my mom said, “well, as long as it’s not an Edsel...” Thankfully, Doc liked her reference and gave her a no-lemon guarantee. It was classic! Only my mom...

As for the approach, I’m getting the mini-sternotomy. They'll only saw about three to four inches of my sternum for a minimally invasive approach instead of eight to ten inches. I was hoping for them to go through the ribs, but turns out I have a small aortic valve and Doc said this approach will give him more room to work if he needs to enlarge the area to put in a bigger valve. For all my fellow car peeps, looks like I’m getting my heads ported!

Dinner with the family was yummy (they tolerated me) (I’m anxious and irritable) (more than usual) (I’m allowed to be this time) Anyway, we went to the Little Italy neighborhood for a second night in a row. I love steak, but couldn’t bring myself to eat beef on the eve of receiving a bovine valve. Those are my peeps and who in the hell needs that kinda karma? I’m covering all my bases. They told me I could have one drink with dinner, so I selected a shot of Jameson - ‘‘Tis the season for all things Irish.

Ok, time to sign off from the waiting room side of this experience. My next post will be on the recovery side! My lovely girlfriend, Yolanda (Yoi), will update things here in the meantime.

Heart cath showed arteries are completely clear! Nobody more shocked than me, knowing what kinda greasy crap I’ve filled them with.

All prepped for Heart Cath. This is as pleasant as it gets. I’m hangry and need coffee!

Rolled into Cleveland a couple of hours ago. As a kid born in Cincinnati and raised in SE Ohio, Cleveland has always been thought of as a place with 14 months of snow-cover, rust, burning rivers, rust, and bad sports teams. Believeland? Really? I used to laugh, but I dont need that kinda karma at the moment. Allow me to pay homage to the greatness of Bob Feller and where can I buy one of those cool hats Jim Brown’s been sporting this century?

Of all the trips I’ve taken, I must say that this was the easiest one when it came to packing. The majority of my stay will be in the old hospital where I’ll be sporting a standard-issue assless gown (And yes, I’ll wear it well). However, I did have to pack for a couple days testing prior to being admitted and something to wear home. It didn’t take too much thought to decide on comfort. I already have the robe and jammies, so why not go with a Hef motif? The man who exuded comfort, amongst other things! Not sure if Cleveland ever had a Playboy Club, but I’m bringing a little bit of Hef’s memory with me from Appalachia.

Anyway, back to why I’m here. Big week ahead! Heart Cath and other tests tomorrow. More tests and appointments on Thursday. On Friday, the big day! If all goes well, in a few days, I’ll be part cow. But as for now, it’s time to start fasting at midnight. I’ll have a long day of being uncaffeinated, hangry, and generally unpleasant tomorrow. I’ll be fine, so please pray for those who have to deal with me.

So far, I’ve seen plenty of snow and rust, but not a single drop of burning water. It’s not too bad of a place. Not sure I’ll ever root for the Browns, Cavs, or Indians; but when it comes to matters of the heart, I’ll proclaim Cleveland to be Believeland.

My reminder picture (see journal post)

Now that the snow has melted for the moment, I had to get a picture of this reminder. Normally leaves and heart valves have little in common. However, if you notice the pile of leaves surrounding the maple tree, they tell a chapter of my heart valve story. Late last fall, I decided I had waited long enough to rake the leaves out to the street to be sucked up by the city vacuum truck. I started with the smallest portion of my yard, which is the little corner pictured between the sidewalk and the driveway. As I raked from the house toward the street, it didn’t take long before I had to stop to catch my breath. After a minute or two, I started again and had to stop before I had even raked what was between the house and the tree. I couldn’t believe I was this out of shape, but I also knew something else was wrong. With a couple other rest breaks taken, I abandoned my plan to rake to the road and just piled what I could around the tree. I was exhausted, frustrated, and worried as hell.

Knowing that this wasn’t just being out of shape or getting older (I’m only 45), it had to be my heart valve. Even though I had recently had my yearly echo, and it wasn’t much different; my body had been telling me a different story for the last couple of years. The symptoms were getting worse, and now I couldn’t ignore them. I knew I needed help. My family doctor gets a report from “the staff cardiologist of the day” every year following my echo, but it was time to find a heart doc.

My weekend task turned from leaf removal to cardiologist/hospital research. I’m fortunate to live a couple of hours from one of the best heart hospitals in the world, so I started there and didn’t feel the need to look any further. I chose a cardiologist and requested an appointment which was confirmed a couple of days later for late January. Even though it was over two and half months away, I had peace of mind knowing that I was going to get some answers. The answer turned out to be referral to a surgeon for aortic valve replacement ASAP. I had already researched and picked out a couple of surgeons and was happy when my cardiologist recommended one of the two that I had already chosen. And so I have a date for surgery on March 8th.

As for those leaves, they never got a second thought. The rest of the yard was never touched. My neighbors probably love me more and more every time the wind kicks up, but they’ll get over it. The leaves are hidden when it snows and eventually they’ll be mulched up by mower blades. Looking outside at that pile today made me think I should take a picture to have as a reminder of what I couldn’t do. I can look at it for inspiration once I’m on the recovery side and getting stronger and healthier by the day. I can’t wait until next autumn when the leaves fall again. I’ll probably be able to rake my entire lawn without breathing hard or even breaking a sweat. But to hell with those leaves. Life is too short for such nonsense. I’ll hire the neighbor kids to rake ‘em and I’ll spend my regained energy on something fun!


p.s. - props to anyone who recognizes the title to this journal entry without using “the google”

While enjoying a lazy holiday off work with the kids, my last Amazon order of surgery prepping supplies was delivered. I’m now the proud owner of a bathrobe, house slippers, and old school jammies (the kind usually not worn by anyone born after the 1940s). I’m officially now able to dress like my grandpa. What’s up with the pocket on the pajama top? I remember my grandpa using it to tote around his dentures before bed. I have all me teeth, so I guess it can be an iPhone pocket. Speaking of teeth, I hit the dentist’s office last week to be screened and cleared of any mouth infection, so that’s good I guess. And speaking of my grandpa, he gave me the bicuspid aortic valve. His lasted longer than mine, though. He was about 70 when he had his replaced with a pig valve about 30 years ago. I’ll never forget sitting in the waiting room for over four hours while he was having his surgry. I was a teenager in the pre-interweb days with nothing to occupy time other than a word-search booklet and the occasional cert or tic-tac from my grandma’s purse. Unlike Scarlet O’Hara with a handkerchief, through any of the toils of life, my grandma could always reach into her purse and produce a mint. Even so, It seemed like that surgery took forever. Leaving my family out there to wait like that is one of the worst parts of this to me. But I guess my Mom and Dad are old pros at this now. Running herd on my 4 year old son should help them pass the time, and they’ll all have the interwebs...ahhh they’ll be ok. Grandma has been gone for a few years now, so somebody had better bring the mints! As for grandpa, coincidentally, he would’ve turned 100 last week. He didn’t make it there by a couple decades, but it wasn’t the valve that did him in - so there’s that. I’m hoping to hit the century mark with fake valves, upcoming technology, and whatever other assortments of bionic parts I might need. I already have a remanufactued tibial plateau made of cadaver bone and titanium, thanks to a car accident ten years ago. Like Johnny Cash and his Cadillac, I reckon I’ll get it “one piece at a time”. Right now, an aortic valve. Anyway, I think I now have everything that was recommended to take with me to the hospital. Two weeks from tomorrow will be my last pre-surgery day at work before driving to Cleveland to check-in to the hotel for a couple of days of tests and appointments. For now, I wait. I’m glad I found my way here. This website, the people, and their stories are very helpful. Well done, Adam. Ok, I gotta go order my family some mints...

My sugeon’s office called this afternoon to schedule my aortic valve replacement. I have a date with Dr. Johnston at the Cleveland Clinic on 3/8/19. I’m almost completely sure I’m going bioprosthetic and really like what I’ve read about the Inspiris Resilia valve.