Hi Everyone- new here. Pre-surgery BAV

[Chuck C]

I am very happy to have found this forum- such a wealth of information and so helpful when others share their experiences.

About 18 months ago, at age 52, investigation into a murmur led to my diagnoses with bicuspid aortic valve with moderate aortic stenosis, near the severe threshold with aortic valve area of 1.0cm2. I have significant calcification, but no regurgitation. I was also diagnosed with LVH and very high Lp(a)- a very dangerous lipid, worse than LDL cholesterol. Aside from increasing the risk of cardiovascular disease, elevated Lp(a) has been shown to accelerate valve calcification, as much as two-fold, not good- and, unlike other lipids, Lp(a) is about 95% genetically determined. I thought I was living a pretty healthy lifestyle, but was also diagnosed at that time with prediabetes, with a fasting blood glucose of 108. This is another factor that can significantly increase ones risk of heart related diseases, especially when you combine the prediabetes with high Lp(a).

A little about myself. I have always been very physically active, lifetime runner and combat sports. I’ve done Brazilian Jiu Jitsu at a competitive level for many years and in the last 5 years have started boxing, kick boxing and MMA. I’ve had two actual boxing matches. It was the physical exam for one of my fights that detected the murmur and led to the discovery of my condition. Many of my colleagues believe that my combat sport adventures are not wise and tell me that at my age I’m likely to get killed participating, but ironically, they may have saved my life, because its thanks to the physical exam that I now know about my condition and how I need to be closely monitored.

I have no symptoms and can still spar 12 hard rounds with my teammates, so I don’t feel that the narrowed valve has slowed me down at this point. I also briskly walk up a steep mountain with a 1,200 foot elevation gain 5 days per week and feel that my performance has not much changed from when I was in my 20s.

When I learned of my condition, I started a very anti- inflammatory lifestyle and lost 25 pounds. I have been able to reverse my prediabetes but will forever steer clear of processed foods. The BAV and Lp(a) are a genetic hand that I was dealt, which I must live with, but I put it upon myself to do everything that I can to control the things that I can control.

My cardiologist believed that my LVH was due to my aortic stenosis, but I had a hypothesis that my extreme athletic activities might be contributing to the enlargement- something known as Athletes Heart. Also, I’ve had borderline high blood pressure for 25 years, about 135/85, which can also lead to LVH. So, I cut back on the more extreme athletics, dropping the MMA and BJJ and just do boxing now. I also lost 25 pounds by dropping processed foods and doing intermittent fasting. With the weight loss and without medication I was able to bring my BP down to 115/75, where it has stayed for the past 12 months. I was also successful in reversing my LVH- bringing my LV wall thickness from 13mm to 9-10mm. Can’t say for sure if this was due more to cutting back on extreme physical exertion, or lowering my blood pressure, but I’m happy I was able to get this back to the normal range.

On a bright note, my last two echos measured my valve area a little bigger at 1.1cm2. It’s not supposed to enlarge like that, and I expect it is most likely due to measurement variance. I’ll put up a post about this at some point to discuss some thoughts on it.

I’m looking forward to learning and sharing here.

 

[epstns]

Chuck,

I, too, was diagnosed at age 52. At that time, I was a "certified gym rat" and recreational runner since age 31. I had always been slender, never overweight, and tried to follow the fitness regimen taught me by the members of the US Army 101st Airborne Division who were my basic training Drill Instructors back in 1970. At time of diagnosis, I had no symptoms, and still enjoyed running and all that. My murmur was discovered in a physical exam taken to try to diagnose a different issue. At the exam the doc said something like "How long have you had that murmur?" When I said "What murmur?" He told me "I recommend that you see a cardiologist and have that evaluated -- sooner rather than later." Saw a cardio, and you can find the rest of the story in my posts from around 2002 through now.

At the time I was diagnosed, I, too, had an estimated valve area of 1.0 cm2 (IIRC), and was graded as "moderate to severe AS." I was so asymptomatic that my cardio and I used to play a game we called "Stump the Fellow." As it happened, my cardio at the time was a department head at a teaching hospital. Whenever he would get a new cardiology fellow on staff, he would invite the new fellow to examine me and interview me, then to diagnose me and recommend treatment. We had so much fun! The fellows would invariably "under-diagnose" me due to my demeanor, my reported exercise tolerance and my discussion of life experience at the time. They were all flabbergasted when presented with the actual labs, echo's, etc. They couldn't believe that a man with my valve wasn't dragging an oxygen tank behind his wheelchair, much less accept that I could out run them and probably out lift them, too. I am not relating this story to toot my own horn. Not by a long stretch. I am telling my tale to let you know that there may yet be many years before you are in need of surgery, and those years do not have to be at a drastically reduced quality of life. I went just about 11 years from diagnosis to surgery, and I didn't really note any significant reduction in exercise tolerance until mere months before surgery. Heck, I was out running just the week before I hit the OR.

OK, my surgery was almost 10 years ago now. How has it gone? Well, I am not running any more -- but NOT because of my valve. I attribute it to mainly the fact that my knees "just say NO." Hurts too much to be worth it. So, I power-walk and jog intervals instead. Also, I am taking metoprolol - a beta blocker, which caps my max heart rate at about 155-160 BPM, which doesn't seem to be high enough to support any distance running for me. Those limitations aside, I am still at the gym (or now with Covid, at home) doing cardio and weight training 5 or more days a week. At age 73, I think I'm well ahead of the curve. If things go well for you, that's what you can look forward to.

I'm not around here as much as I once was. Sometimes I fear that my valve replacement experience is out-dated due to newer techniques and technologies. The part of my experience that remains relevant, though, is that of "what it's like." The first few months post-op were rough, no doubt, but now, 10 years later, the memories fade. I never did lose the attitude that "Life is Good."

If you want to chat "one-to-one" just PM me here. Welcome to The Waiting Room, the virtual room where many of us await our own turns at valve replacement. Hope you are able to wait quite a while.

 

[Chuck C]

Chuck,

I, too, was diagnosed at age 52. At that time, I was a "certified gym rat" and recreational runner since age 31. I had always been slender, never overweight, and tried to follow the fitness regimen taught me by the members of the US Army 101st Airborne Division who were my basic training Drill Instructors back in 1970. At time of diagnosis, I had no symptoms, and still enjoyed running and all that. My murmur was discovered in a physical exam taken to try to diagnose a different issue. At the exam the doc said something like "How long have you had that murmur?" When I said "What murmur?" He told me "I recommend that you see a cardiologist and have that evaluated -- sooner rather than later." Saw a cardio, and you can find the rest of the story in my posts from around 2002 through now.

At the time I was diagnosed, I, too, had an estimated valve area of 1.0 cm2 (IIRC), and was graded as "moderate to severe AS." I was so asymptomatic that my cardio and I used to play a game we called "Stump the Fellow." As it happened, my cardio at the time was a department head at a teaching hospital. Whenever he would get a new cardiology fellow on staff, he would invite the new fellow to examine me and interview me, then to diagnose me and recommend treatment. We had so much fun! The fellows would invariably "under-diagnose" me due to my demeanor, my reported exercise tolerance and my discussion of life experience at the time. They were all flabbergasted when presented with the actual labs, echo's, etc. They couldn't believe that a man with my valve wasn't dragging an oxygen tank behind his wheelchair, much less accept that I could out run them and probably out lift them, too. I am not relating this story to toot my own horn. Not by a long stretch. I am telling my tale to let you know that there may yet be many years before you are in need of surgery, and those years do not have to be at a drastically reduced quality of life. I went just about 11 years from diagnosis to surgery, and I didn't really note any significant reduction in exercise tolerance until mere months before surgery. Heck, I was out running just the week before I hit the OR.

OK, my surgery was almost 10 years ago now. How has it gone? Well, I am not running any more -- but NOT because of my valve. I attribute it to mainly the fact that my knees "just say NO." Hurts too much to be worth it. So, I power-walk and jog intervals instead. Also, I am taking metoprolol - a beta blocker, which caps my max heart rate at about 155-160 BPM, which doesn't seem to be high enough to support any distance running for me. Those limitations aside, I am still at the gym (or now with Covid, at home) doing cardio and weight training 5 or more days a week. At age 73, I think I'm well ahead of the curve. If things go well for you, that's what you can look forward to.

I'm not around here as much as I once was. Sometimes I fear that my valve replacement experience is out-dated due to newer techniques and technologies. The part of my experience that remains relevant, though, is that of "what it's like." The first few months post-op were rough, no doubt, but now, 10 years later, the memories fade. I never did lose the attitude that "Life is Good."

If you want to chat "one-to-one" just PM me here. Welcome to The Waiting Room, the virtual room where many of us await our own turns at valve replacement. Hope you are able to wait quite a while.

Hi Steve,
Thank you so much for sharing your story and for your words of encouragement. Your story has really had an impact on me, in that your situation is so similar to mine. I would be thrilled if I am able to put off surgery for 10-12 years from discovery, as you did. At the same time, if I wake up tomorrow with symptoms and need to get it done soon, your story and the story of so many others here about coming out in one piece on the other side of the operation, reduces the level of anxiety for all of us that have not yet faced that day.
My local cardiologist, after looking at my echo and seeing the results from two stress tests, one with and one without echo, told me that he felt I was years away from surgery. He said he sees nothing structurally problematic at this point and that given my stress test performance, he said it could be 5, 10 even 20 years away, although there is no way to know for certain. When I did my own research I was not so confident that my surgery was likely to be years away. I mean, my valve area was 1.0cm2 (same as yours although the last two both have it at 1.1cm2) and the studies that I read said that you can expect about a 0.1cm2 narrowing every year. That puts me at .8cm2 in 2 years.... .7cm2 in 3years...... I did seek second and third opinions. It appears that there is good evidence that the biggest risk for outcomes is waiting too long and I wondered if he is one of those cardiologists that Lars Svensson at Cleveland Clinic talks about, who hold onto their patients too long before referring them to surgery, which often results in a heart that is too far down the pathway to heart failure to recover.
Although my cardiologist felt it was way too early to consult with a surgeon, I decided to refer myself to a surgeon for his opinion, and met with a very well respected surgeon at one of the top clinics in the country. This surgeon, who has completed over 4,000 valve surgeries, after looking at my echo told me that he would recommend getting the surgery now. Gulp! His argument was that my heart had already changed structurally and this would only get worse as time passes. He pointed primarily to my LVH- with LV wall thickness of 13mm, indicating that , while this was still mild LVH, this would only get worse and I should get it now before there is irreversible damage. He did say it was also ok if we wait 6 months and have another look, but that it would probably be best to get it done now to be safest. Having researched the LVH extensively, I gave him my hypothesis that my extremely vigorous fitness training and my 25 years of borderline high BP of 135/85 could also be contributing to my LVH and asked what he thought. He would have none of it. He was adamant that my LVH was due to my AS and would only progress in severity. I'm glad that I did not take his recommendation. I've now consulted with 3 more cardiologists, two at Scripps and one at UCLA and none of them feel that I need to get it replaced soon. When I told the Scripps cardiologist about the surgeon's recommendation, he laughed and talked about how to a hammer everything looks like a nail and apparently surgeons have a reputation for more often than not pushing for surgery soon. Still, I value their input greatly and will continue to consult other surgeons.
I began my plan to see if I could reverse my LVH. For the next 4 months I dropped all exercise, except for brisk walking10-20 miles per day. All the walking and not lifting weights anymore enabled me to lose 25 pounds and brought my BP down to 115/75 where I have managed to keep it for over a year. The next echo my LV had reduced in size such that I was no longer in the LVH category- being downgraded to LV concentric remodeling- still larger than average, but my LV mass was now in the normal range, albeit at the high end of normal. The LV walls were about 12mm now, which is thicker than normal- I think 10mm is about the upper end of normal. My next two echos my LV continued to decrease in size until my last one, 3 months ago, which showed wall thickness of 9mm and 10mm. I had put off the vigorous training as long as I could stand, so after 4 months of walking I went back to some kick boxing once or twice per week. I have a feeling that the reduction in LV size had more to do with my lowering my BP, because for the past 14 months I've boxed and done other somewhat vigorous exercises and my LV has continued to decrease as I added back these exercises, although I make sure not to push it as much as I did in the past. So, perhaps it is hard to say for sure, as I used to push my HR to the max several times per week and now I almost never go above 80% HR max. So, the reduction could still theoretically be partly due to dialing back the intensity.
I dropped the Brazilian Jiu Jitsu, the wrestling, MMA and the weight lifting, as these all involve strain and my cardiologist does not want me lifting or straining. This has been really hard for me, especially not doing the BJJ. But, I just can't put myself at significant risk of a severe or fatal event. Although, after digging into the research, it is not clear to me that this is well supported, unless the patient has aortic aneurism. But for now, I'm sitting out those more intense activities involving strain.
I can say that as far as how I feel, I feel great. The last several months I have been hiking a very steep mountain every day, 14.2% grade, and I zoom right up it. Everyday I pay close attention to my pace and try to detect any hint of slowing down. My times are actually getting better and I'm going up faster.(Could that mean that my valve really has opened up a little??) I am aware that things could turn and I might suddenly slow down, but perhaps feeling this good in a cardio sense does count for something and perhaps it does mean that maybe I do have several more years left in the Waiting Room, as was the case for you when you found out at age 52.

It sure turns one's world upside down when you first get the diagnosis. For me it has really led to a re-evaluation and refocus on what is important in life; family, friends and helping others.
Thanks again. It is very much appreciated.

 

[pellicle]

Hi Chuck

Welcome Aboard

I'm one of the few on this forum that probably can't imagine how you feel, especially with respect to the shock of diagnosis. I was diagnosed with a murmur very young and had my first open heart surgery at about 12. So as a result I've pretty much spent my whole life in and around this stuff.

What I can bring to the table is that everything done today is much better than my first surgery, better than my second and probably some improvements in tech since my third in 2011.

No matter what you feel now, the fitness you bring and that you are largely asymptomatic will stand in good stead for your recovery.

Its important to remember that as we age (I'm 56 now) things that we spend our lives building up gradually go away. This is pretty obvious when looking at top sportsmen who seldom stay at the top of their game into their 40's. So there is always "something" which forms that first shock to tell us "we're aging".

Its a good place to meet and rub shoulders with other patients, get viewpoints and more to chew on the feed into your views of how things should change. I'm sure you'll find the journey interesting.

Best Wishes

 

[Chuck C]

Hi Chuck

Welcome Aboard

I'm one of the few on this forum that probably can't imagine how you feel, especially with respect to the shock of diagnosis. I was diagnosed with a murmur very young and had my first open heart surgery at about 12. So as a result I've pretty much spent my whole life in and around this stuff.



No matter what you feel now, the fitness you bring and that you are largely asymptomatic will stand in good stead for your recovery.

Its important to remember that as we age (I'm 56 now) things that we spend our lives building up gradually go away. This is pretty obvious when looking at top sportsmen who seldom stay at the top of their game into their 40's. So there is always "something" which forms that first shock to tell us "we're aging".

Its a good place to meet and rub shoulders with other patients, get viewpoints and more to chew on the feed into your views of how things should change. I'm sure you'll find the journey interesting.

Best Wishes

Hi Pellicle,
Thank you for the encouragement. I've read dozens of your posts as I've tried to catch up on many of the current and past threads and I really appreciate the incredible experience that you bring to the table, having had multiple surgeries. I also like that you dig deep into the research and come with a perspective grounded in science, but also with the benefit of your vast experience in this area.

This site is really a special place for the sharing of experience and knowledge!

"Its important to remember that as we age (I'm 56 now) things that we spend our lives building up gradually go away. This is pretty obvious when looking at top sportsmen who seldom stay at the top of their game into their 40's. So there is always "something" which forms that first shock to tell us "we're aging". "
Words of wisdom. So true.

Take care and Happy New Year!

 

[pellicle]

This site is really a special place for the sharing of experience and knowledge!

it sure is and my participation here has helped me along the journey too

Happy New year to you too mate

 

[epstns]

Chuck,
You've run into a major example of the "surgeons wanna' cut" syndrome. If you are concerned that he may be right, consult with another surgeon or two. You may get some better insight (or you may not).

When it came to timing my surgery, I had such a great rapport with my cardio that he confided in me that "I never have to tell my aortic stenosis patients when it is time for surgery. They all tell me when they are ready."

And, in my case, he was right. We both knew that with my test results, all the docs and the insurance companies would have approved surgery for me a couple of years or more before my valve was replaced. When I finally told the doc that I was "tired of being tired" he said that was pretty much what all of his aortic stenosis patients told him.

I never did develop any of the "cardinal" symptoms of shortness of breath, fainting or chest pain. I just experienced reduced exercise tolerance and general loss of stamina. At the end, by the time I got home from work (office job, but 10-12 hour work days), it was all I could do to eat supper and crash on the couch. It sure doesn't sound like you are anywhere near there, so there is time yet.

One of the techniques I picked up somewhere (may have been from another member here) was to begin keeping an exercise and activity diary. I literally kept written records of the times, distances, weights, reps and all the statistics of my daily workouts for quite a number of years. That way I could scan the data for trends. I quickly learned to discard outliers - the occasional super day or bad day, and just monitor the trends. That way I could assure myself that nothing was changing. . . until it did change, and then I was all set to proceed to the next step.

There will be those here who will say "surgery - the sooner the better," but it is a personal/individual choice. If you can wait longer for surgery, you may cross over into the age group where they feel that either tissue or mechanical valves are fine. When I had my surgery, IIRC, they recommended mechanical valves for patients under 55 years of age, and either tissue or mechanical for older patients. (Research shows that as we get older, our bodies do not attack the tissue valves as vigorously, thus they last longer.) Also, the older you are at time of surgery, the fewer years your valve has to last to cover the rest of your life. These facts were important to me, as I did not really want a mechanical valve. 10 years ago we did not have the newer mechanical valves that require less anticoagulation.

Any way, it sounds like you're doing your homework well. Stay healthy, and stay around here with the gang. The Waiting Room will be open as long as you need it.

 

[Chuck C]

Chuck,
You've run into a major example of the "surgeons wanna' cut" syndrome. If you are concerned that he may be right, consult with another surgeon or two. You may get some better insight (or you may not).

When it came to timing my surgery, I had such a great rapport with my cardio that he confided in me that "I never have to tell my aortic stenosis patients when it is time for surgery. They all tell me when they are ready."

And, in my case, he was right. We both knew that with my test results, all the docs and the insurance companies would have approved surgery for me a couple of years or more before my valve was replaced. When I finally told the doc that I was "tired of being tired" he said that was pretty much what all of his aortic stenosis patients told him.

I never did develop any of the "cardinal" symptoms of shortness of breath, fainting or chest pain. I just experienced reduced exercise tolerance and general loss of stamina. At the end, by the time I got home from work (office job, but 10-12 hour work days), it was all I could do to eat supper and crash on the couch. It sure doesn't sound like you are anywhere near there, so there is time yet.

One of the techniques I picked up somewhere (may have been from another member here) was to begin keeping an exercise and activity diary. I literally kept written records of the times, distances, weights, reps and all the statistics of my daily workouts for quite a number of years. That way I could scan the data for trends. I quickly learned to discard outliers - the occasional super day or bad day, and just monitor the trends. That way I could assure myself that nothing was changing. . . until it did change, and then I was all set to proceed to the next step.

There will be those here who will say "surgery - the sooner the better," but it is a personal/individual choice. If you can wait longer for surgery, you may cross over into the age group where they feel that either tissue or mechanical valves are fine. When I had my surgery, IIRC, they recommended mechanical valves for patients under 55 years of age, and either tissue or mechanical for older patients. (Research shows that as we get older, our bodies do not attack the tissue valves as vigorously, thus they last longer.) Also, the older you are at time of surgery, the fewer years your valve has to last to cover the rest of your life. These facts were important to me, as I did not really want a mechanical valve. 10 years ago we did not have the newer mechanical valves that require less anticoagulation.

Any way, it sounds like you're doing your homework well. Stay healthy, and stay around here with the gang. The Waiting Room will be open as long as you need it.

Hi Steve,
You said: "When it came to timing my surgery, I had such a great rapport with my cardio that he confided in me that "I never have to tell my aortic stenosis patients when it is time for surgery. They all tell me when they are ready." "

This is almost exactly what I was told by the cardiologist I consulted with at Scripps, whom I have great respect for. The data suggests that outcomes are better if surgery is done before any of the classic symptoms show up. I'll follow the data and I'm good with that, but the question then becomes "when?". I always tell those I consult with that I would rather get surgery done 6 months too early than 6 months too late, but, just not years too early. His comment to me was that because I am so physically active, that I would know when it is time before anyone else knows it's time. This is also consistent with what Doug Johnson at Cleveland Clinic has said, in a video he did with Lars Svensson, in which he said the ideal time is probably when you can no longer physically do the activities that you are used to doing, but ideally before symptoms.

And excellent point about waiting long enough that it helps with valve choice. I very well may change my mind, and I am certainly going to take very serious the surgeon's recommendation, but at this point, assuming I have a say in the matter, I am deciding between the Edwards Resilia tissue valve and the Edwards Perimount, and leaning towards the Resilia, as I think I have mentioned. Data is a little thin on the Resilia, 5-6 years on people + some sheep data, but every year there is additional outcome data and the decision becomes a little more clear. My local cardio wants me to hold out long enough for TAVR to catch up to calcified BAV for low risk patients. BTW, I have been evaluated for TAVR at Scripps. Although they are starting to do TAVR on some low risk BAV folks, it looks like I am not a good candidate, due to the amount of calcium on my valve and in that my calcium distribution is not uniform. Per Dr. Curtiss Stinis, their TAVR specialist: "This is where it becomes more of an art than a science."
But, there is a newly approved valve for TAVR, being used in a limited way in Europe, which may overcome this, so who knows. I think I will need to see many more years of TAVR data before I would feel comfortable going that direction at my age, but given enough time the data may be there eventually.
Take care,

Chuck

 

[tom in MO]

Beware, a significant number of people with a BAV are asymptomatic, myself included. Based upon my echo, I was told surgery was needed...soon w/o any symptoms I could notice. I didn't quite believe it, my cardio said I needed it in two months or I might "suffer the symptom known as sudden death." A few weeks later I had my first symptoms. A month later they replaced my valve. I asked the surgeon how long I could have waited and he said no longer. Trust the echo and other imaging even if you don't have symptoms.

 

[Chuck C]

Beware, a significant number of people with a BAV are asymptomatic, myself included. Based upon my echo, I was told surgery was needed...soon w/o any symptoms I could notice. I didn't quite believe it, my cardio said I needed it in two months or I might "suffer the symptom known as sudden death." A few weeks later I had my first symptoms. A month later they replaced my valve. I asked the surgeon how long I could have waited and he said no longer. Trust the echo and other imaging even if you don't have symptoms.

Thanks Tom.
I'm curious what it was about your echo that told them you needed surgery immediately? Aortic aneurism? I agree that we need to watch for symptoms, but to be guided by the imagery from our echos as well.

Chuck

 

[kentuckyed]

These posts always remind me of the runner Jim Fixx who just up and died one day. While not strictly related to heart valve replacement it is a reminder that you can feel pretty good and actually not be that good. Not meaning to influence anyone one way or the other, Just surfacing some more information.

 

[bizinsider]

Regarding asymptomatic....

I'm among the many here who thought I was asymptomatic. But one theme I've seen in my years of lurking and then participating in these and other forums (pre and post-surgery) is that after surgery we feel better than we did pre-surgery, which suggests we were somewhat symptomatic.

In my case, Type-AAA that I am, I was like a thorn in my cardiologist's side, always questioning what he said and prescribed. I considered myself, for better or worse, an actively-participating patient. I was happily "asymptomatic" even though my supposed bicuspid valve was moderately progressing to moderately-severe stenotic. I walked several miles a day, including some steep hills, fairly quickly (14-16 min miles) with no noticeable symptoms.

But then....

I started noticing some things - paying very close attention to MY body.

1. I've always had ocular migraines several times a year. But they became more frequent...often more than 1x a month.

2. There was an increased frequency in broken blood vessels in my eyes, from several times a year to monthly.

Neither of those are considered symptoms, and my cardiologist usually just listened patiently when I mentioned them.

Then...

I was walking up a REALLY steep hill and I noticed a bit of chest tightness. And I was huffing/puffing more than usual and it took around 30 minutes for me to recover. Shortly after that, I was moving a few 20lb bags of water softening salt (don't ask!) and I got winded with the same tightness in my chest. It was...weird.

I chalked all of it up to my valve acting up.

Keep in mind, at this point, because of my aneurysm, I was on the every 3-month scan plan (alternating an MRI - no contrast - with an echo.)

At my final scan I was as borderline as I've ever been - valve, LV and ascending aorta all stable - and my cardiologist suggested I wait another three months and then reassess. I decided that I didn't want my life/travel plans to be reassessed every three months. I had been getting a second read by Dr. Svensson at the CC 1x a year for 2 or 3 years. He always agreed with my local docs, but this time suggested I fly out for an in-person consult and tests.

That was January last year. In Feb I was in his office with a separate consult (via their protocol) with a cardiologist, in this case, Dr. Brian Griffin. I also had a stress echo and and angiogram - the latter required for all OHS.

It was fascinating.

Dr. Griffin said the increase in oculars was likely the result of small pieces of calcium breaking off and traveling to my brain. He explained the pieces were not big enough to cause serious problems. But I viewed the increased frequency...as a sign. He suspected I would need surgery within a year, and was relieved that I was well-versed in all of this and didn't need arm-twisting.

He had no explanation for the broken blood vessels.

Then I met with the surgeon, who had reviewed the CT scan. I had asked if we could put off surgery until August. I had a grandchild due in July, I had a meeting in NY in May and we had a trip planned to Asia in December. (All pre-Covid.) His deadpan response: "I would do it soon."

As it turns out, the CT showed that my valve was severely stenotic. Svensson said the risk when removing a severely stenotic valve is that bits of calcium can break off and travel to your brain and cause a (likely recoverable) stroke. He then looked me squarely in the eyes, very seriously and said, "I'm meticulous."

He also said the angiogram showed I had an 80% blockage of my marginal obtuse1 artery...whatever that is. So I would need a bypass. My first reaction was: More time on the HL machine. He said it would add a mere 7 minutes to the operation.

Surgery was in March.

As it turns out my bicuspid valve was a unicuspid and I was deemed as having an enlarged (athlete's) hear) that the surgeon said would remodel down to normal size over time with the new valve. Usually these are found and replaced in people by the time they're 40. (I was 67.) His theory is that with the unicuspid valve, my heart grew to compensate for its deficiencies, which is why I felt asymptomatic. (The body truly is amazing.)

Fast-forward to today: The frequency in oculars has sharply decreased; I've had 3 or 4 since surgery. I've had a few broken blood vessels.

But the best part: There is no more chest tightness or "recovery" time on sharp hills and I can walk up them very quickly at ease. I always thought my walking was great (between 14-16 min miles, depending on my mindset) but I always slowed toward the end. I always chalked that up to boredom. Now I can easily do 4-5 miles at 15 min miles, with steep hills intertwined. It's crazy!

My cardiologist thinks the chest tightness and long-recovery periods I was having on the steepest of hills was more valvular than blockage, though they also think the blockage I had – while not as bad as having an LAV blocked - would have caused angina and a possible heart attack.

All of this is a long-winded way of saying: I was probably more symptomatic than I thought I was, just not as symptomatic as many people get. My heart grew to compensate.

I have always struggled with blood pressure and have always been on a cocktail of meds. I still am and I still do. Like Chuck, I'm considered borderline. I also take Crestor, though it will NOT impact the re-calcification of my valve. No statin can help with that.

One other thing: When I realized surgery was getting closer, I started my own form of pre-hab - making sure my body and core were in great shape. My lungs were already good from years of aerobic exercise.

I think all of that went a long way to a speedy, uneventful recovery.

End of sermon ... and story!

 

[Superman]

A few long testimonials in here that I won’t quote. Suffice it to say, just because we know people with normal hearts that are in worse shape than us, doesn’t mean it isn’t time to fix a problem.

 

[tom in MO]

Thanks Tom.
I'm curious what it was about your echo that told them you needed surgery immediately? Aortic aneurism? I agree that we need to watch for symptoms, but to be guided by the imagery from our echos as well.

Chuck

I had stenosis from a BAV. The echo showed the opening was dangerously small.