Not Sure How To Feel - But Mostly Fear, Shame, Selfishness And Guilt Right Now

[Guest]

So glad to have found this site. I won't bore everyone - because I know every "newbie" has their first "I'm scared" post - it's only natural. But I'll try to get the relevant details and nuance yet keep it short.

Was diagnosed with a "murmur" when I was 12, but frankly, it rarely ever was even noticed by other doctors. I am now 49 and relatively healthy. I do have another chronic condition that is well-controlled; 6'1" tall, around 225 pounds - lots of body building but have gained some fat in a the past few years (a 48" chest and 38" waist).

Had an echo 2 years ago at the request of my GP because the murmur seemed louder - showed BAV with some regurgitation, but a "see me every 2 years" direction from cardio. Recently have been feeling symptoms - not really tired, but have cut back weight training and other activity, and now noticing perhaps a little bit lost capacity (also, have LOTS of extra beats - almost every 5th beat and a BPM of 100-110 despite decent, if sporadic, cardio workouts). So, went to a new cardio for echo/stress/EKG, and the results weren't great. He said moderate stenosis, but my area is 1.1 cm2 and gradient is 54 mm hg, regurgitation and some thickening. I do take replacement T so guess I probably need to cut that out now.

I don't have chest pain, but do often have a flutteri-ness and slight tightness - am constantly "aware" or my heart - especially trying to sleep. At times it feels like it wants to jump out of my chest - like when I am eating.

Current cardio basically said my job eventually would be deciding between TAVR versus surgical replacement - implying that I could "wait-and-see" long enough that TAVR would develop and make a lot of advances.

I outwardly look very healthy - buff but with a little extra gut. My diet is, however, atrocious (I should mention that my bad cholesterol bad has always been very low [around 90], but my good has also tends slightly low [around 37]). The stress-test technician "got me to "96% of what I wanted" during the stress test and saw no problems there aside from the extra heartbeats (though I was only taken to a very fast long-stride walk that was a real burner).

I know everyone is terrified or surgery - and I ma not immune,. With my underlying systemic health issue, I ave always been very aware of mortality (and had to be, frankly). I assume I am a great candidate for surgery but was surprised after doing some research that TAVR was even on the possibility list. a 50 YO bodybuilder seems like a good OHS candidate to me. From what I can tell, I prefer the slightly higher risk now if I can avoid future procedures knowing your success rates go down the older you get. Still - I am just terrified of the OHS and am having a tough time visualizing a positive outcome. All I can see is either "I'm sorry, we did all we could, he just had a bad reaction..." or taking forever to recover, wasting all my lean body mass away only to be able to take short walks the rest of my life.

The other part of me wants to see a fast recovery because I am a robust guy, back in the gym with a better sense of health and feeling better, not realizing the valve was making me feel worse than I thought.

Sorry for all this - there isn't even a question in here - just rambling. I guess I'd like to know what everyone thinks of the numbers or if I am overreacting. I really want someone to say "don't worry, you won't die, and you will feel so much better and look and be much healthier." But sadly, we all know no one can say that.

Part of me is also wanting to get this over with - to take on the surgery while in the best possible shape and while I still have health insurance, but then realize I don't want to hasten my execution date if the outcome is destined to be bad. Also - another random fact - I have had sever sleep apnea for 20 years, and know that every night I go to sleep I am making my heart worse (I can;'t tolerate CPAP, and had UPPP which, par for the course, made my sleep events per hour WORSE). A tiny little optimistic cell deep in my body secretly hopes that the surgery will somehow improve my sleep (if for no other reason that I'll waste away by 60 pounds and have no lean body mass).

I suppose I really just need a hug - but also am ashamed and guilty because I should be grateful we have any treatment at all, that I have options, and were I in another country in different circumstance, this would be the least of my concerns, and quit feeling sorry for myself with vanity and sense of entitlement.

But I am still scared. Though I feel like I should have roughly 20 good years left, ceasing to exist personally, while terrifying, is not inconceivable to me - it's leaving my spouse alone at an early age that wracks me with guilt and fear.

 

[Paleowoman]

Welcome to the forum ! Not sure why you should feel guilt, shame and selfishness ! Fear yes, that is only natural.

Not sure why your doc thinks TAVR is an option in a 49 year old, even if you don't need surgery for many more years you'd probably have to wait till 75 or 80 to make the benefit of TAVR outweigh the benefit of OHS unless you are in extremely poor health. And you do body building - I can't see that a TAVR valve would be suitable if you do body building. I personally wouldn't touch TAVR until I'm a little old lady sitting in a home ! unless they change TAVR significantly. But that's my take on it as it is at the moment - TAVR has no long term studies, wait anohter 20 years to see if anyone has had one last 20 years. I'm sure though they are trying to develop a TAVR which will stand the test of time.

It sounds like you are feeling the normal fear most of us get when the reality of surgery on the horizon appears. It's natural to feel sorry for yourself too, afterall we were born with this, we didn't get it thorugh lifestyle or choice ! My murmur was first heard when I was 25 but I didn't need surgery until I was 60 just over three years ago (I might be looking at a re-do soon but that's another story). I aim to make it until I'm at least 85 as long as I feel fit and with it still !

How often will you be having echos now ? I would have thought with moderate stenosis about once a year or once every six months so the cardio can see the trend of the stenosis and see when surgery would be right for you. And if you are having symptoms then getting a new valve should see the end of those and a new lease of life for you !

 

[tubaman]

Thanks Paleo!

Good advice .

I do like my current cardio, but the TAVR comment did give me pause. Also, I did the echo 2 years ago with another doc, and he seemed disinterested i getting those results (I thought that the directional nature would also be useful) - he said "it's just another data point." I think that is weird because he has really good healthgrade ratings, etc.

One quetion I have for everyone: I know heart-healthy diet is of course good for general health (and the rest of the heart, BAV be damned), but do dietary changes have a material effect on disease progression of teh stenosis itself? My doc seemed indifferent to diet in that sense - he admonition was to quite with testosterone replacement.

 

[mikeccolella]

http://www.mdpi.com/1422-0067/16/4/8861/pdf


Abstract: Cardiovascular (CV) calcification is known as sub-clinical atherosclerosis and is recognised as a predictor of CV events and mortality. As yet there is no treatment for CV calcification and conventional CV risk factors are not consistently correlated, leaving clinicians uncertain as to optimum management for these patients. For this reason, a review of studies investigating diet and serum levels of macro- and micronutrients was carried out. Although there were few human studies of macronutrients, nevertheless transfats and simple sugars should be avoided, while long chain ω-3 fats from oily fish may be protective. Among the micronutrients, an intake of 800 μg/day calcium was beneficial in those without renal disease or hyperparathyroidism, while inorganic phosphorus from food preservatives and colas may induce calcification. A high intake of magnesium (≥380 mg/day) and phylloquinone (500 μg/day) proved protective, as did a serum 25(OH)D concentration of ≥75 nmol/L. Although oxidative damage appears to be a cause of CV calcification, the antioxidant vitamins proved to be largely ineffective, while supplementation of α-tocopherol may induce calcification. Nevertheless other antioxidant compounds (epigallocatechin gallate from green tea and resveratrol from red wine) were protective. Finally, a homocysteine concentration >12 μmol/L was predictive of CV calcification, although a plasma folate concentration of >39.4 nmol/L could both lower homocysteine and protect against calcification. In terms of a dietary programme, these recommendations indicate avoiding sugar and the transfats and preservatives found in processed foods and drinks and adopting a diet high in oily fish and vegetables. The micronutrients magnesium and vitamin K may be worthy of further investigation as a treatment option for CV calcification

 

[Juli]

Tubaman - I think I know how you feel - were at the same spot one year ago at the age of 58. I don't think I was in bad shape prior to surgery but can say that I only realized afterwards how much my heart function was affected by my defective aortic valve. I experienced quite a bit of sleep apnea prior to surgery which completely disappeared immediately post surgery. I was able to be active (walking for 1-2 hours) as soon as I came home and returned to work in less than 3 weeks. Based on my experience I would recommend to not wait until a point where your heart is severely affected/compromised - our conditions will never improve, however, they will get worse sooner or later. Luckily these valves can be repaired - I would say back to 100% performance. The recommended TAVR procedure at your age does not seem to make sense. As intriguing as this technique is, it also comes with its set of problems and shortcomings which is the reason why older patients are currently the target.

 

[Paleowoman]

http://www.mdpi.com/1422-0067/16/4/8861/pdfAbstract: Cardiovascular (CV) calcification is known as sub-clinical atherosclerosis and is recognised as a predictor of CV events.....<snip>....

Calcification on a bicuspid aortic valve does not have the same cause at that from atherosclerosis. From what I understand the narrower the bicuspid valve is to begin with the more turbulence there is which leads to calcification and further narrowing - the calcification in this instance must be the body’'s response to “injury”. A lot of studies have been done in cause of the progression of bicuspid aortic valve, for example here: https://www.ncbi.nlm.nih.gov/pubmed/8427176

The rapidity of progression of aortic stenosis in patients with congenital bicuspid aortic valves, and its relation to aging and valve anatomy are not well known. To elucidate these aspects, 75 patients aged 15 to 76 years were examined by echocardiography. Aortic valve sclerosis began from the second decade, the sclerotic index progressing with age (r = 0.72; p < 0.0001). Aortic valve calcium was noted from the fourth decade. Aortic valve pressure gradient increased approximately 18 mm Hg each decade, concomitant with progression of valve sclerosis (r = 0.78; p < 0.0001). Progression of cusp sclerosis was faster in patients with anteroposteriorly located cusps than in those with right-left-located cusps (p < 0.005), and was faster in those with eccentric cusps (width ratio of major and minor cusps > or = 1.2) than in those with symmetric cusps (p < 0.05). In patients with eccentric and anteroposteriorly located cusps, aortic valve pressure gradient increased 27 mm Hg per decade. In patients with congenital bicuspid aortic valves, the progression of aortic stenosis is rapid, and the rapidity depends to some extent on the position and eccentricity of the cusps.

Obviously a healthy lifestyle is very important too but it doesn't seem to halt the progression of bicuspid aortic valve.

 

[Agian]

You can't actually treat the calcification. Once it's there,it won't budge. Most of us learned that the hard way.
There is nothing sub-clinical about calcification. It is an indicator of atherosclerosis (see definition).

 

[Agian]

Ah, red wine. Great article LOL

 

[Paleowoman]

There is nothing sub-clinical about calcification. It is an indicator of atherosclerosis (see definition).

The calcification in bicuspid aortic valve is not athersclerosis though, that's for sure. My bicuspid valve was mildly calcifed when it was replaced but scans of my coronary arteries showed, and still show, that I have absolutley no athersclerosis at all. I've now had three angiograms over the past nine years, all absolutley clear coronary arteries, no calcification and no soft plaque or blockages at all. The calcification in my bicuspid valve was due to turbulence.

 

[cldlhd]

Also not sure why your cardio would towards TAVR unless it's the "shiny new thing" effect. Your thoughts are normal and like a lot of others here I can relate. I opted for the get it over with route and had surgery 2 years ago at the age of 45. My aneurysm was the cause of my surgery as my BAV only had trace leakage and no stenosis. I was told I could wait possibly up to 10 years but didn't want to worry every time I felt a pain so I took the advice that's easier given than taken. My son was only 8 at the time so the idea that maybe I was "hastening my end" as you say was a big concern but,alas, I'm here. I might look for a second opinion just in case
So if I read that right Paleowoman than the turbulence can cause endothelial damage that the body repairs with calcium deposits? Maybe that would explain why at 45 I had no stenosis as I'm fully mutated and have a 'sievers 0' bav with equal size leaflets with no hint of a 3rd. I have read that they are a little better in regards to flow and my gradient has always been low. However my ct angio one year post surgery showed some calcification of the annulus. My surgeon did a nip and tuck of the annulus so I was told it could be scar tissue or I guess the damage from the surgery could have allowed calcification in that area.

 

[epstns]

tubaman - A belated welcome to our family. I am another patient who had some rhythm issues but nothing more from my 20's onward. . . until at 52 I was finally diagnosed with aortic stenosis and a "probable" bicuspid valve. I was able to stretch out the life of my native valve until I had surgery at age 63, but this was only by staying in good physical shape and "living right." From what I've read, nothing can be done to stop or slow the progression of stenosis due to bicuspid valve structure. Some patients experience progression, a few don't. We all progress at different rates, and that's the way it is.

I'm not a body builder, but have been a 5 days a week gym rat for almost 40 years. Yes, I was afraid that I would lose all of my conditioning after surgery and might not regain it. . . but I was more afraid of what would most likely happen if I chose not to have surgery. Odds are that had I not opted for surgery, I would not be here to write to you today. My father died at age 68, most likely from untreated aortic stenosis (never diagnosed, but the symptoms were all there). It is not a question of whether or not to have the surgery. Life is too precious. It is, however, a question of when to have the surgery. You need to build a good rapport with your cardio and keep an open dialog, make sure doc is aware of all symptoms - even sub-clinical ones like fatigue. You and your doc can decide when is right, but my cardio deferred to me. He said "My aortic stenosis patients always tell me when it is time to operate. You will get tired of feeling the way you will, and that's when we will move ahead." Finally, at age 63, I told him that I was ". . . tired of being tired." That was my only symptom - probably because I was in good shape compared to my cohorts.

When I had my valve replaced just over 6 years ago, TAVR was just becoming available, so it was not considered an option for me. It was mentioned as a future possibility should I require a second replacement, though. Were I in your place, I would go for conventional surgery this time. So far, the valves implanted via catheter don't seem to have the longevity of those surgically implanted, and you may be able to do this just once (assuming you opt for a mechanical valve).

Anyway, I didn't mean to write a book. Welcome to The Waiting Room, the virtual room where many folks await their own turns at valve surgery. Read and learn, as there is a wealth of knowledge and experience among the family here. Ask all the questions you want. We're here for you.

 

[Paleowoman]

So if I read that right Paleowoman than the turbulence can cause endothelial damage that the body repairs with calcium deposits? Maybe that would explain why at 45 I had no stenosis as I'm fully mutated and have a 'sievers 0' bav with equal size leaflets with no hint of a 3rd. I have read that they are a little better in regards to flow and my gradient has always been low. However my ct angio one year post surgery showed some calcification of the annulus. My surgeon did a nip and tuck of the annulus so I was told it could be scar tissue or I guess the damage from the surgery could have allowed calcification in that area.

That was the first study I found this morning regarding progression of stenosis in bicuspid aortic valve, I've read others before and they all seem to say that it's unknown exactly what causes the progression of the stenosis in bicuspid aortic valve, but definitley increased turbulence is important. It would seem from that study I stumbled upon, above, that if the bicuspid leaflets are in that direction or whatever that there is increased calcification - on the leaflets - because there would be more turbulence. It's the turbulence of the blood going through the small space that the doctors hear as a murmur, even years before surgery. I know there are other studies which have looked at what can be done to slow the progression of stenosis in bicuspid aortic valve, things like statins, but none of the interventions have been successful.

The body repairs, or rather misrepairs, lots of things with calcification. I have an osteophyte (calcium/bone formation) in a joint in one of my toes which is caused by my body laying down calcium at the point of a previous injury. And I also have osteophytes in some finger joints where I apparenty have osteoarthritis.

PS - Dr William Davis managed to reverse aortic valve calcification with vitamin K2 BUT that was with someone with degenerative calcific aortic valve disease which IS related to atherosclerosis.

 

[honeybunny]

Just some hugs (((((((((tubaman))))))))) We're here for you~

 

[Agian]

The calcification in bicuspid aortic valve is not athersclerosis though,

Fair point. But there is some talk that the process might be similar.
All we can hope for is slowing down progression.

 

[epstns]

Fair point. But there is some talk that the process might be similar.
All we can hope for is slowing down progression.

We can hope, but AFAIK so far there has been nothing proven to slow this progression. A few years back they tested statins in the hope that progression would be slowed. I was an informal participant (my cardio and I followed the study's protocol, but I was not formally enrolled), but the study ultimately found no impact on progression due to the statin dosage.

 

[Nocturne]

There is some evidence that lowering Lp(a) might slow down progression of CAVS, and perhaps AVS that results from a BAV as well. There is a study wrapping up at McGill University right now that is looking into this.

IMO anyone with AVS should get their Lp(a) checked, as well as coronary artery calcium and several other heart health factors. In recent years it has been learned that Lp(a) has a large role to play in the development and progression of AVS (as well as boring old CAD). Sadly, most docs are still unaware of this.

OP: You are almost 50, in good shape, and probably won't need surgery until at least the age of 50. I'd recommend you get your Lp(a) checked, get a coronary CT scan and learn your CAC score, and maybe get on some supplements like Vitamin K2, Aged Garlic Extract, and Magnesium.

I understand well how freaked out you are about potential lifespan. Too many of the people here will try to give you some airy-fairy feel good rainbow crap about how "you're gonna be fine", "your replacement valve will last you a LIFETIME", "barring any complications, you'll have a normal lifespan", etc. -- which may be exactly what you need, I don't know. But me, I needed to know something concrete. The truth is, your odds won't be what they would have been if you'd never needed the surgery in the first place -- you'll be less likely to make it to 80 (or any other point of old age). That sucks, but what does it mean, exactly? Well, for you as an individual, we can't know, of course -- we don't have a crystal ball.

But we do have some studies.

This is the most recent long-term study I have found dealing with relative survival after AVR:

http://icfjournal.org/index.php/icfj...load/138/pdf-2

It was completed in 2016 and examined patient survival after AVR for up to 20 years.

There's a lot of information there, but note that their youngest group ("Group A") consisted of patients in a range of 15-59 years of age, but who were on average about 50 years old. If you look at the charts, you will see that 80% of these patients were still alive 20 years later. Those are not as good as the normal odds, but they are not too shabby either.

If you're almost 50 now, and had your surgery tomorrow, it looks like you'd have a roughly 80% chance of seeing 70 -- and beyond.

Get your Lp(a) checked because they are on the verge of coming out with medicine that can lower it (by a lot). Get a coronary CT scan so you can at least know your risk besides AVS. Take care of yourself. And best of luck.

 

[Nocturne]

And JESUS, Tubaman, why did your doc advise against testosterone replacement? TRT is known to lower Lp(a), and Lp(a) accelerates the progression of AVS!

Too many docs have no clue about TRT (mine was down to a near-castrate 135 when we caught it and put me on clomid therapy, which brought it up to the high 400s), and there was some issue with studies that indicated it increased the odds of heart attack. More recent studies are indicating that low T is in fact the culprit, and TRT actually ameliorates this somewhat. A recent study was done with the VA that showed that men who qualified for TRT but did not get it had a higher rate of heart events than men who qualified for TRT and DID get it.

Are you in the states? Either way, you need to go here:

www.peaktestosterone.com

Ask the good men there about TRT and heart disease. They can at least point you to some docs who don't have their heads up their butts with this stuff. You have to assume that a doc is clueless when it comes to TRT until they prove otherwise. Sad, but that's how it is.

 

[Agian]

I understand well how freaked out you are about potential lifespan. Too many of the people here will try to give you some airy-fairy feel good rainbow crap about how "you're gonna be fine", "your replacement valve will last you a LIFETIME", "barring any complications, you'll have a normal lifespan", etc. -- which may be exactly what you need, I don't know. But me, I needed to know something concrete.

Can I buy you a balloon?

 

[Nocturne]

Can I buy you a balloon?

Nah, just keep repeating that everything's fine.

https://m.youtube.com/watch?v=g3qkbc28R_I

 

[dick0236]

........but what does it mean, exactly? Well, for you as an individual, we can't know, of course -- we don't have a crystal ball.
.

Thank you Nocturne.......that's the answer. We CAN'T know, and that is a very good thing.

Remember......"the glass is either half full or half empty", take your choice.

BTW....don't stop saving for retirement, you may live a helluva lot longer than you thought probable....I have!