Herb's Journal

Closing the loop on my surgery – my wife's perspective... https://www.themodernpostcard.com/notes-from-home-when-travel-becomes-a-medical-destination/

A bit of an update: Got home yesterday. Flight from CC to LAX was uneventful. CC encouraged me to use the airport's wheelchair service on both ends, and very glad I did; walking would have been WAY too stressful on my body, and it was great for my wife to have that extra help with the luggage.

I'm learning to listen to my body. I overdid it on Friday, for reasons I'll explain in a moment. Later that day, and early Saturday, marked the first time I did not feel as good as I had been feeling. I've been telling people that I don't feel like I had major heart surgery, which included an aortic valve, a root, an ascending aorta and a single bypass. That swift in-hospital recovery obviously led to a false sense of security, which as I’ve read here can be a common trap. My heart clearly does NOT like pushing the boundaries, especially burning the candle at both ends.

A little background…

In normal times, my situation would have had an extra level of stress. While recovery from the actual heart surgery has been fairly straight-forward, there was a wrinkle: Like many people, my bowels did not want to cooperate and “wake up” the way they should have post-surgery. This is called ileus. That led to some bowel discomfort and a night from hell (for me AND the poor nurse who was charged with clean up) during the first night in the step-down unit.

During a scan of my abdomen to rule out a bowel blockage, they noted a “possible” abscess, or tiny infection (<2 cm) near my prostate. That set off all kinds of alarms and visits with a urologist and infectious disease doc. After a day of trying to figure out the right solution – either remove the abscess immediately and culture the infection, to determine what drug should be used to treat it, or treat with multiple antibiotics NOW – the surgeon (who is the final arbiter) ruled to start treating with antibiotics. He felt it would be best to wait to treat the abscess until after six weeks post-surgery, which is the most sensitive time for an infection to occur.

To treat NOW meant I would need a picc line inserted in my arm but more importantly, that my caregiver – AKA my already stressed-out wife – would need to learn how to attach the IV. This is not something she is wired to do, and it's a tricky process that requires compete sterility. As a result, every 12 hours, for three sessions, a nurse came to our hotel room in Cleveland to teach us how to do this on our own. Each drip takes an hour, with prep taking another 30 mins. That meant less sleep, which triggered Angry Heart.

Combine that with an early flight back on Saturday and I was extremely fatigued.

So was my wife. We typically split chores. I ALWAYS do the grocery shopping and know where everything is in the various stores. After ANY trip our routine is that I go to the store, she unpacks.

This time was different. I couldn’t help. That meant the burden for EVERYTHING was on her. After a two-hour drive from LAX, and jet-lagged, to boot, she had to get to the store to restock our bare cupboard.

BUT… these aren’t normal times. Thanks to the coronavirus, the shelves were empty. She was able to find basics. By then she was exhausted. I was exhausted. We skipped the day’s IV treatments (doctor said it was fine to do.)

By 6 pm – 9 p.m. Cleveland time – I was exhausted. I turned in for the night, knowing full-well I would be awake by 1.

That got me to wondering what the word "rest" after surgery means, and I think I’m starting to figure it out. Let’s just say I told my biz partner I’ll be on reduced bandwidth for at least another week or two, if not longer. Then again, in an odd twist of fate, so will everybody else.

Greetings from @ClevelandClinic, Day 4 post-op!

Quick note. Still in the ICU. Surgery went well. The biggest surprise - no bicuspid but a unicuspid. Surgeon was surprised. Said usually found in people half my age; I’m 67. The heart compensated by expanding; it apparently is like an athlete’s heart. I’ll post more once I’m in step down. Thanks again Adam for this site.

As others have said the angiogram was a piece of cake. They found one blockage; it was a surprise but as with all of this I’m thrilled we found this before there before it found me. onward....

Headed to Cleveland today for the Main Event (valve, composite root graft, ascending aorta) on Wednesday. I bought Adam's book a long, long time ago – probably in 2007 or 2008, as I started to ramp up interest in my situation. As things progressed, and at some point after this site was launched, I became a regular visitor and, more recently, Adam's Heart Valve FB page, which I only recently discovered. (If you haven't been there, you should. Lots of real-time discussion.) All of this has been invaluable in connecting with others who have been through varying degrees of valve/aorta repair/replacement. Just knowing potential complications, and interacting and reading experiences of those who have dealt with them – and how, in general, their lives have gone on – has been inspiring. I can't imagine going into something like this without having had this level of peer-to-peer contact. Thanks all and, as they say, stay tuned for updates.

For those in need of some inspiration, especially if you are concerned about the scar – especially if you are having the full regalia – I highly recommend this story by the NBA's Jeff Green, who had aneurysm surgery a few years ago. It's fantastic. I'm having similar surgery by the same surgeon soon. I stumbled on it today and posted it on Adam's FB page. I figure some here might not be there, so here you go: https://www.theplayerstribune.com/en-us/articles/jeff-green-the-scar

A few weeks out and this arrived yesterday from Cleveland - the "just in case you were wondering if this is going to happen" pre-surgical pack, which includes my schedule for the two-days prior, a few check lists and other goodies.

After years of sitting patiently in the waiting room, they called my number!

Flew to the Cleveland Clinic to meet with Drs. Griffin (the very kind and well-regarded cardiologist) and Svensson (the equally kind and by reputation exceedingly talented surgeon.)

I had a battery of tests: Echo, Stress Echo, Echocardiogram, Chest Xray and CT w/contrast. They showed a radical change in my valve: Stenosis, mild for years, went to severe; regurgitation to severe from moderate-severe. Plus, my mitral valve is now leaking.

Dr. Svensson suggested we get this done "soon," largely to avoid any damage to my left ventricle, which is slightly dilated, and any further issues with my mitral valve. If done soon, he believes the ventricle and mitral valve will repair myself.

The good news is that my heart muscle is considered in very good shape, which barring complications should result in a good outcome.

The bad news, if you can call it that: Because of the root, which will be a Bentall procedure with a composite root and bioprosthetic Edwards 2700 valve, I will have a full sternotomy.

Dr. Svensson said it could be done with a more minimal incision, but that the results tend to be better for this type of procedure with a full viewing area. As a bonus, it helps make sure the calcium from my valve doesn't go where it isn't supposed to be. As it relates to the wayward calcium, Dr. Svensson looked at me in the eyes and said, "I'm meticulous." At which point I thought, "Where do I sign up?" Surgery date: March 4.

Reading this forum for many years had paid off. It has helped give me a realistic view of complications, but also good results. I'm very much at peace with this and looking forward to getting on with my life.

Cheers,
Herb

Headed to CC in two weeks for a series of tests and a consult with Drs. Griffin and Svensson. I'm really looking forward to the stress echo mid-morning on an empty stomach and no caffeine. Oh, and since they're three hours ahead of California – and since arrival time at the clinic is equal to my body clock's usual wake-up time, I expect a fascinating experience. Even better: No food until the CT scan, which is close to noon. But seriously ... I'm actually looking forward to all of this, especially a comparison of measurements done here, because I need clarity and want to get on with my life. With an AA and root supposedly at 4.9cm (and the root supposedly having expanded by 3cm over 6 months) I feel it is time to shift to the next level. Plus, we have our first grandchild arriving in early July and this ain't messin' with that! The trouble with these kind of measurements is that you know you're close, but you don't know when – and neither do the docs. Short of them saying, "Now," it's either check back in another three months...and another...and another. Except, we have our lives planned out (trips, etc) so this now becomes an asterisk to all of that. Like many of you, I consider myself lucky to know what I have, lucky to have found Adam's site (I'm so old that I bought his book when it was FIRST published), and with time on my side have had the opportunity to have read any and every study and seen any and every video I have been able to get my hands on. Will report back.

While I am still in the waiting room, I thought I would it would be worth sharing this one point: Knowing that surgery is sooner rather than later, and that baby aspirin apparently is part of the post-op regimen, it got me to thinking: I'm allergic to aspirin and have been since my teens. (I'm almost 67.)

Long story short: No, I'm not or no longer am. (Much like Peter Eglinton mentioned in another post about his one-time allergy to penicillin.) Aspirin desensitization was pioneered here in San Diego at Scripps. It is now down at many facilities around the country. I thought it would be a good idea to get desensitized pre-surgery.

As it turns out, they gave me an aspirin challenge, and determined that while I may have once been sensitive to aspirin, I no longer am. (And if I was, they would have been able to desensitize me so I could take the baby aspirin. The catch with sensitization, if you truly are allergic, is that to remain desensitized you would have to take (in my case the baby) aspirin every day until you no longer need or want to take aspirin.

Apparently, it's true what they say: Some people really do grow out of their allergies. This story in the NYT about penicillin says it best. https://www.nytimes.com/2019/01/22/well/live/allergic-to-penicillin-you-may-not-be.html

I figured I'm not the only one thinking they are allergic to aspirin and Peter isn't the only one concerned about penicillin.

I'm now on the three-month plan for scans/imaging for my bicuspid AVR/aneurysm, which has hit that gray area. The overall view from my scan of last week: No change, with a few slight improvements. This was with the top cardiac stenographer at Scripps and it was without question the most thorough echo I have had in the 40 years I have been getting echos. Result: Left ventricle function still good; ascending aorta is stable at 4.9cm. (Cleveland cuts at 5.) Next stop: An MRA w/o contrast in June, to get a clearer view of the AA. (They have ONE specific machine they use for those scans) Will decide then whether to schedule a visit later in the year with Dr. Svennson at CC, per his recommendation, or continue to wait.

It has been awhile since I have written, having been hanging out in the waiting room – alternating an MRI and echo every six months. The most recent echo, in December, had the kind of change that gets your attention: My left ventricle size. I’m bicuspid with a (now) 4.9cm ascending aorta (though, if done by an MRI, it could still be 4.7cm – there seems to be a variance.) Either way, the aorta is still within the not-yet stage.

However, the big change that caught my doc’s attention was the left-ventricular ending systolic volume (LV-ESV), which has slightly exceeded the 50mm level, which puts me at Class 2a, which is technically surgical. (Or, as my cardiologists say after uttering the word “intervention” – “it’s time to start putting together a plan.”) The initial read on this past echo was very close to the alarming 60mm. But my cardiologist and the chief stenographer at Scripps both remeasured and came up with the revised, smaller measurement.

The goal, of course, is to fix this while it is still reversible and while still asymptomatic. (I can still walk straight up a half-mile long steep hill quickly without being out-of-breath. But as I’ve learned, while that’s a blessing, it’s also a curse, especially if you aren’t constantly getting rescanned. Being asymptomatic can be a false-negative.)

That gets into a highly nuanced situation of timing, with a personal twist: My daughter is getting married on June 30. What’s a father to do? (Question for all: I’m curious how long it typically takes after surgery to get up and running, if there are no serious complications. I’m considered in good health and fairly fit. I know there is no one-size-fits-all.)

My primary cardiologist’s opinion is to rescan in three three months, at which point if the LV-ESV has expanded he said he will push hard for surgery. He also explained that these measurements, as evidenced above, are highly subjective and can bounce around.

Key to me is to make sure this caught before there are symptoms and permanent damage.

After reading these forums, it is obvious that there are exceptionally great surgeons and facilities around the country, including in my own backyard. Still, given that this is not just a valve or aorta, I’d like to go someplace where they do aortas in their sleep, which is why we probably would fly to Cleveland. (Never mind that the only non-stop is on cramped Frontier or an hour-and-a-half up the road for a broader selection from LAX.)

Next step is to send my images off to CC for a review by Dr. Svensson. Last time we shot our data his way, via another cardiologist I consult with – Eric Topol, is a CC Alumnus – the view was not surgical. That was 2 ½ years ago. My how time flies!

Oddly, having been monitoring this for 40+ years, I’m very much at peace with the prospect for surgery. Certainly, more at peace than my wife! ;-)

I have done enough research and reading (personal stories on Adam’s forums have been an invaluable part of the process) to know the good, bad and ugly. Will report back and add to the experience database of this valuable feed, when I know more.

A tale some of you may find interesting: Now that I'm in the waiting room (I hope for a long time) I'm supposed to get imaged every six months, with an echo and a "scan." I have a bicuspid valve, aortic regurgitation and an enlarging ascending aorta, which at last check was around 4.5-4.6cm. The surgeon at Scripps would have preferred a CT scan but I opted for an MRA, to avoid the radiation - especially if I have to have these done fairly routinely. I have had echos for years, but ever since they discovered my enlarged ascending aorta several years ago a scan has been added to the mix. So far I've had one CT, which discovered the enlargement (at UCSD) and multiple MRAs in traditional 1.5T machines at Scripps, each MRA taking around 20-40 minutes.

Here's the interesting part: I learned Scripps had a new 3T MRI machine, so figured I would ask for that, instead. Thought it would be that much better of an image. And I'm sure it will be, but this head's up: The entire scan, on a very hard surface, took 1 and a half hours. You read that right 1 hour-30 minutes. That is a LONG time for an MRA.

I had read up on 3T machines, and from what I read I thought they would be faster. But before I got on the machine I was advised that it would be 90 minutes. Wow.

The good news: The bore is larger, nowhere near as claustrophobic. And your head is toward the opening. Bad news - that's an almost intolerable time to stay in one place, which countered the bigger bore. Even the techs agreed it's too long. Oh, and there is no music because a computerized voice gives you breathing instruction the entire time.

I just kept telling myself we'll get the best pictures, yet. We'll find out soon enough.

Hope this was helpful.

Herb

Saw surgeon Jeff Tyner today at Scripps. Very nice guy. He said his measurements were different than the radiologist on my MRA - 4.5, maybe 4.6 on the ascending aorta, NOT 4.7-4.8. That would suggest NO change over the past two years, assuming the MRA two years ago was correct. (Surgeons do NOT like MRAs.) With no known family history of bicuspid and/or aneurysm, come back in six months, get a CT scan with contrast. Into the waiting room, I go! His view was that, at the time of surgery - if my valve makes it until then - my bicuspid valve would clearly have to be replaced, as would my aortic root. Arch and onward are fine. Stressed that my adult kids really should get their valves checked. Thanks to all for listening and best wishes to those headed for surgery at this time.

First, I'd like to thank Adam for this tremendous site. I've been lurking for years. I bought your book MANY years ago.

My stats: I'm 64. In good shape. Exercise regularly. Controlled high blood pressure.

My story, bear with me: I was first diagnosed with a "murmur" in the late 1970s. Since then, I've monitored it closely over the years, with an echo (often a stress echo) annually for more than 20 years.

In most of those scans, because of my body structure, the techs had a hard time getting a clear view of my valve but I was often told have a "probable" bicuspid valve. That was confirmed with an MRA in 2005 that was conducted for something totally unrelated to my valve.

Here's the interesting part: it wasn't until a few years ago, when we moved back to San Diego - after having been gone for three years - that I learned I had an aneurism of my ascending aorta.

In the short span of time we were gone my cardiologist had retired, so I went to UCSD and saw the head of cardiology. He suggested I get a baseline reading of my aorta. I had a CT scan (without contrast, at my request) and the results came that I was the lucky holder of a 4.6cm ascending aorta.

I find it pretty remarkable that over the years nobody suggested getting a better picture of my aorta, especially given my bicuspid valve. Glad I did! And I'm grateful to the UCSD doc for suggesting it. BUT... I subsequently switched doctors because the UCSD cardiologist left it to a fellow to break the news to me, with no follow-up by the cardiologist - even after I had ticked off a list of obvious questions the fellow couldn't answer. (Told me all I needed to know about that cardiologist!)

I then consulted with Eric Topol, a pretty well-known cardiologist who had moved to the Scripps Clinic from the Cleveland Clinic a few years ago. If anybody should be arrogant and unapproachable, it's Eric. But he's not. At the time he was no longer a full-time practicing cardiologist, and suggested I shift to one. I chose Chris Suhar, who runs the Center for Integrative Medicine at Scripps, whose late father had a bicuspid valve.

Given the size of my aneurism, Chris suggested a six-month rotation for an echo and then an MRA. I had my most recent MRA a few weeks ago.

Therein lies the story, and why I'm now posting here: It showed 4.7/4.8cm. Chris, who like Eric is not an alarmist, said it's time to see a cardiologist. Eric, who has become a friend, agreed.

Which is where I am now: I'm starting with a consultation this Thursday with Jeff Tyner at Scripps. A 70-year-old friend had bypass surgery by Tyner recently and bounced back within weeks as if he had just had a tooth pulled!

Scripps is a fine facility, and probably perfect for a bypass. And I'm going in with a fairly open mind but when it comes to a bicuspid valve AND an aneurism I'm likely to be pickier.

I'm interested in surgeons who do NOTHING but hearts. And then, those who not only replace aortas, but appear to have a focus or at least a passing interest on bicuspid valves.

It has been suggested I get an opinion from Lars Svensson in Cleveland. (He did the ascending aorta replacement on someone I recently was put in touch with; this person couldn't stop raving about CC, and called it the "McDonald's of aortic surgery.") There are a few other docs and programs I've run across that are impressive.

As is often the case, the decision to travel rather than have something like this done locally is paramount. (Do I really want to sit on a plan for 4 and a half hours from Cleveland to LAX and then drive down to San Diego? There are no non-stops.) But in the end the goal is to get the very best procedure possible, with the lowest chance of complications. (I realize there's no guarantee for that anywhere, and that many people have very successful complicated surgeries in hospitals throughout this country.)

There are quite a few good options/surgeons in California. I LOVE the very concept of bicuspid valve center created at Northwestern in Chicago. One thing I like about CC is the setup for family stay next door.

I may be six months away from surgery. I a year. Two years. Or two weeks. I have no idea, and hoping it's not the latter!

I'll post updates. I find the patient stories to be very helpful. The more detail, the better. I intend to add to that conversation.

Onward...