Ben's Journal

Someone told me on the eve of my surgery that now is not the time to be exceptional. Most people zoom through this surgery without any serious issues. Most people are also out of the hospital in five days. Today was my discharge. Quick math shows you I was in for way longer than that. What happened?

I guess I decided to be exceptional. I just can’t help myself.

When they rebooted my heart everything went amazing. Whirred right up. No issues, closed me up, and I was off to ICU.

Except my kidneys did not come back online.

Impossible to know why, for sure. Could be the 284 minutes on the bypass machine. Could be the 26 minutes I was in suspended circulation. Could be the five hours of propofol that kept me nice and asleep during it all. Nobody knows.

Ended up staying in ICU for five days. Kidneys continued to get worse and they almost had to pull the trigger on dialysis. Then on day five, they suddenly turned the corner. A very slow corner. But day over day they started kicking back in and as of today they’re borderline normal. Given the trend, the doctor was more than convinced I’m going to recover and was ready for discharge.

This is why the discharge day kept changing. It’s why I went in expecting to be walking the city streets by Sunday and here we are a week later than that.

I cannot express enough gratitude for all of the surgeons, doctors, nurses and other staff at Mount Sinai Hospital. Gratitude to my employer for giving me the time I needed to prepare to focus on healing for the next two months. My wife who is watching all five kids like the superhero she is. I can’t wait until I can see them all again. Grateful for my amazing mother who met me in NYC and sat with me all day every day even when I was mostly unconscious (and that was most of it). My dad for making space in his life to be alone for two weeks while my mom could be here. My friends who’ve cheered me on and prayed for me, those who’ve shared their personal experiences as well with this.

I absolutely believe your prayers helped carry me through so much of this.

I’m grateful to the various heart surgery support groups online who let me in the door and talked me through the whole journey. You are all doing the Lord’s work out there.

I know this is just the beginning of Ben 2.0. There’s a long recovery road ahead here but I got this. With all of you by my side through all of this, how could I let you down now?

Forty two more years. Let’s go.

All right folks, this is it.

In just under twelve hours, I'll be sitting in a waiting room, probably in a gown and very little else, getting ready to have my heart refurbished. Forty two years I've known this was coming. And in all that time it never really bothered me until the last few months. Both physically and emotionally. Physically, I've started getting a bit short of breath when I walk upstairs, and the first hints of chest pain started just today. Emotionally, I panicked when the cardiologist told me it was time. I've had a good run these past forty two years. A wonderful family, imperfect in all the right ways. I've lived on three continents*, visited four**, climbed five or six mountains, visited forty seven states (someday, Nebraska--someday), and had a pretty good career. But the thing that scared me most was the thought of not getting to see my kids grow up. Of not seeing grandkids someday. But in the past few weeks, after deciding on a plan of action and a phenomenal surgical team, I'm at peace. I know that if I do nothing, I won't see next Christmas. No matter how scary that six hour nap and the recovery afterwards look from this side of it, I *know* that on the other side of it I've got about forty two more years ahead of me. Plenty of time to get to Nebraska, Alaska, Maine. Plenty of time to get to Africa, South America, Antarctica. Plenty of time for grandkids, and maybe even some great grandkids.

They're going to be doing some major work tomorrow--Ross procedure with an aneurysm repair. It's going to be a tough recovery. I've been through all of this once before but I was barely two weeks old--I don't remember any of it. And after my six hour nap tomorrow, I've got a tough job ahead of me. A lot of breathing exercises, a lot of walking--but walking is something I'm pretty good at. I was made to do this. Am I scared? Oh yes--but mostly of waking up intubated. My gag reflex is legendary. I hope I'm so drugged up I don't remember any of the ventilator. That's it, that's all I'm worried about. And even that I know I can get through--I have to--because on the other side of all of this is forty two more years with my family.

Surgery starts at about 9 AM Eastern. I probably won't be awake until 5 PM or later. I doubt I'll be in any way capable of posting anything or updating anyone. I'll post something as soon as I'm able to. I'm staying in Mount Sinai Hospital on 5th Avenue for at least five days. They're hoping to discharge me on Monday, God-willing. And then a follow-up a week after that, then I'm headed home to family.

Prayers appreciated, as usual. I'll be back in no time.

* I'm counting Japan as Asia
** And New Zealand as Australia. Look, I landed there for a few hours!

Boarding my flight to NYC, Ross procedure at Mount Sinai on Wednesday the 11th. Had to say goodbye to family at the airport, but I’ll have my mother meet me at the hospital to help out. Absolutely wild time to have to have such a major surgery. I’d be lying if I said I wasn’t nervous at all, but I’m in good hands and well, if I DON’T have this surgery, I definitely won’t see next Christmas with my kids. So here we go...

Thanks to everyone for all of your support so far. Looking forward to being on the recovery side of this thing and starting a whole new journey...

Yikes, that's me over there in the Upcoming Surgeries list!

Less than two weeks until the big show. I'm oddly at peace about it all right now. Feeling pretty good with my medical team, and the recovery plan. I'm sure my nerves will tick up as I get closer to the date.

If any of you traveled for surgery, what did you take along with you? Aside from a coat and walking shoes (flying to NYC), is there anything you brought along with you that you'd recommend I take as well? Or anything you really *wished* you'd brought?

Thanks in advance.... here we go!

November 11th I'll be having my heart re-plumbed at Mount Sinai, barring any surprises on my upcoming scans. It's weird how I was panicking about this a couple of months ago. I've found a lot of peace knowing I'm in great surgical hands, and that it's all finally scheduled and on the books. Now to just focus on preparing for the trip, and all of the recovery that comes afterward.

It's also a nice time career-wise, since my job is fairly slow in November/December anyway. I won't have to miss too much!

Bonus: My 18th wedding anniversary is November 12th. Thanks, 2020! Guess we'll have to celebrate early this year! But I'll never be able to forget my heart anniversary!

I had my remote consult with Dr Stelzer today. He agrees I’m a candidate for a Ross procedure. I’m going to have a CT done locally here in Seattle next month and then it’s scheduling time. Looking like a late November/early December date.

Dr. Stelzer was such a great doctor to speak with. One of the few times I’ve felt a doctor actually cared to get to know me and I was more than just another case/procedure.

So before end of year I’ll have my “second” birthday in NYC! It’s getting very real!

Well, yesterday was the surgical consult day. Got me penciled in for mid-November to get this BAV replaced and my aortic aneurysm repaired. Went into the consult after doing a lot of research, settled on going mechanical with an On-X. The surgeon thought that was a great idea, then threw me a curveball: he asked if I'd ever considered the Ross procedure. To be honest, I'd discarded that option pretty early on because of how infrequent it's used. But he got me thinking about it.

He seemed quite confident that I'm a great candidate for it, and he's been doing about one every other month. He always has another surgeon from a local renown children's hospital assisting him, someone who does more of these.

I'm torn, for a few reasons. I love the idea of being free from blood thinners, and potentially free from another operation for decades. However, my surgeon, while an extremely skilled valve specialist, obviously doesn't have a high volume of Ross procedures. I'm not terribly keen to travel for this surgery as I've got a wife and five kids at home.

One minute I'll find a report about how Ross procedures in adults my age are better than mechanical valves for any number of reasons. The next minute I'll find a report about how mechanical valves are superior in every way to a Ross procedure. I see stories of people who have gone 20+ years without complications from either procedure. I see stories of people who've barely gone 2 years without complications from either procedure.

This part of the decision-making process is the worst. I thought I had my mind set, and now I'm almost back to the beginning.

How did you all make your decision on this crazy issue?

I'm meeting my surgeon next month, September 21st. It's all getting very real very fast. I'm at the point where I'm ready to get this over with and be on the other side, recovering!

Quick question--for those of you who were monitored long term for your bicuspid aortic valves, how long did it take from the cardiologist saying "it's time to meet the surgeon" until you actually met your surgeon? One month feels like a long wait, but I guess if it was more urgent she'd have flagged it as such...

Thanks in advance!

Meeting with the surgeon next week. Oddly not overly anxious anymore. I'm sure it'll come back at some point. But having an answer after that stress test took a lot of my anxiety away.

Cardiologist said she suspects I'll have surgery scheduled in the next 2-3 months, tops. The surgeon will make the final call there. He's a younger guy, but has a good record and I think others here have had him do their surgeries. Will keep everyone updated as I go along.

I'm nervous, but almost in a giddy "about ready to have a better heart after 42 years of this busted one" kind of way. Is that weird?

Welp I’m fairly certain I failed that stress test today. Felt great the whole time, but the nurse was very concerned about my ekg at times, asked me to confirm I’m not on any heart medications, and asked me while I was cooling off if I really didn’t have any symptoms (I really didn’t).

She then went to try and find my cardiologist while I was preparing to leave, but she was with a patient and said she’d get back to me.

So... it’s probably getting close to “go” time on this aortic valve replacement... will hear more from cardiology in the next 24-48 hours.

The waiting really is the worst, isn't it?

Wondering if anyone’s had OHS who uses a CPAP machine. Would I be able to bring that with me to the hospital? Could I even wear it with all the rest of the stuff going on? Curious if anyone’s faced this issue before.

No scheduled surgery date yet but every month it inches closer. Wanting to prepare as heat as I can! Thanks!

Stress test scheduled for the 18th of August, though I can absolutely tell you that I'm stressed out! Not in the way they mean, though :)

My bicuspid aortic valve finally crossed the threshold into severe stenosis about a year or two ago (after being moderate forever) but I haven't had any symptoms. Aortic aneurysm also started enlarging for the first time in years. My cardiologist ordered the stress test, to see if I really am asymptomatic. I'm getting to a point where I just want to get it over with--as scary as the thought of OHS is, I see all these great recovery stories here and I know objectively it's a very safe and successful surgery nowadays!

I'm going to take my cardiologist's recommendations and do as she advises. She's been great so far, and seems to be fairly well-respected in her field. What's funny about the asymptomatic thing is that now I know she's concerned, I think every tiny thing may be a symptom!

I guess it's just hard to be only 42 and staring this surgery in the face, right in the middle of the best years of my life with five kids, a strong career... so much uncertainty and fear about this, even though, again, I know it'll all be okay.

Thanks to all of you for sharing your stories along the journey--it's really helped me out a lot. I'll keep you posted as things progress!