Potential New Therapy for AVS

[Nocturne]

This is from 2013, so probably old news here, but just in case -- intriguing:

https://www.sciencedaily.com/releases/2013/07/130718101242.htm

"A study conducted by the team of Dr. Jean-Claude Tardif, Director of the Research Centre at the Montreal Heart Institute (MHI), has led to the discovery of a new approach to treat aortic valve stenosis through the administration of a compound that prevents valve deterioration and can even reverse the progression of the disease."

 

[Paleowoman]

Hi Noctume - this study was actually only done on mice, here's the full study: http://onlinelibrary.wiley.com/doi/10.1111/bph.12236/full But it will have been done for the benefit of people who have what's generally known as degenerative aortic stenosis. After making the mice have a bad lipid profile and developing aortic valve stenosis, they gave them something which mimics HDL, the so-called good cholesterol (hey of which I have tons, currently 3.24 mmol/L or 125 in US numbers) and that, apparently, reversed the stenosis. The findings will not apply to those who have stenosis due to congenital heart defects, eg bicuspid aortic valve as the stenosis there is due to having been born with only two cusps instead of three which leads to stenosis which is not from degenerative disease. The same applies to damage from endocarditis andother illnesses that is not a degenerative disease process.

This also illustrates what I meant in your other thread on heart valve replacement and mortality when I wrote: "A person who has a congenital valve problem such as bicuspid aortic valve should be otherwise healthy, and once the valve is replaced there should be no more problems for them unless the valve faiis at which point it is replaced. If, on the other hand, a person develops heart disease or altherosclerosis or degenerative calcification of their aortic valve they have the added burden of the continuing "disease" process even after the valve replacement - hence they may have a shorter life span due to that continuing disease process. That's how I see it. You have to know the reasons for the valve replacement to correctly interpret post AVR mortality."

 

[Nocturne]

Yes, I was aware that the study was done on mice only, and that the treatment wouldn't be useful for people with bicuspid valve.

Maybe you can help me -- is there a separate forum for people with calcific aortic stenosis? People under the age of 55? Or am I just the only one online? :^)

 

[Paleowoman]

This forum should be suitable for you since it's to do with valve replacement. The issues you are raising would appear to do with people who have degenerative calcific stenosis and since there don't seem to be many on the forum with that it is probably why your worries are different from others' ? Try not to focus on he negatives - find out what you can do to help yourself to get healthier. Even those on here like myself who have or had congenital bicuspid valve try to focus on having a healthy lifestyle as that helps all round. Forget the fact that you didn't perhaps live your life to the best when you were younger and start now. You are not the only person to discover that they have developed something that they were unaware of - there are peope here who didn't know they had been born with BAV so that by the time it was discovered they needed it replaced - that is a shock to find out you were born with a dicky valve and had it all the time without realising !

 

[Nocturne]

Actually I'm not 100% convinced that I DON'T have a bicuspid valve -- it's just that it wasn't written on my echocardiogram that I did. It did mention "aortic sclerosis" but unless I'm mistaken that would appear on anyone with bicuspid valve who presented with aortic stenosis, too.

On the other hand, the lack of mention of valve deformity combined with my astronomical coronary calcium score would seem to point to "garden variety" calcific AS, albeit at a much younger age than usual.

It's worth noting that my testosterone levels were also shockingly low, which I learned about a year ago and have been working on my lifestyle and general health in hopes of improving (and with medication, T levels have improved quite a bit -- thought the meds give me mood swings and make me "weepy"). Medical science is just learning that low T in men is associated with accelerated heart disease; I suspect I got a multiple whammy with poor lifestyle, poor lipid genetics, and poor hormones.

I think I *do* hear you on positive outlook. But I only learned about my heart about 2-3 months ago. I'm still reeling, and it was a real kick in the teeth on the heels of putting in the effort to go from obese to within a pound of my ideal weight. I have hopes that things will settle in time; it's just that I've been hoping things would settle with the hormones for close to a year now, and instead I got a gut punch with the stenosis and then another gut punch with the calcium score. It's going to take time for me to get through this, and I'm not going to whip myself over THAT.

 

[Paleowoman]

Actually I'm not 100% convinced that I DON'T have a bicuspid valve -- it's just that it wasn't written on my echocardiogram that I did. It did mention "aortic sclerosis" but unless I'm mistaken that would appear on anyone with bicuspid valve who presented with aortic stenosis, too

No, aortic sclerosis doesn't always appear with anyone with bicuspid aortic valve who has stenosis. I had BAV which became stenotic but wasn't sclerotic. Here is a link explaining about aortic sclerosis and aortic stenosis: http://www.differencebetween.com/dif...rtic-stenosis/

I'm still reeling, and it was a real kick in the teeth on the heels of putting in the effort to go from obese to within a pound of my ideal weight.

I think the reeling and kick in the teeth when you learn you have a problem to do with your heart, or any other 'dangerous' illness, can be viewed as a wake up call to doing more to help yourself. I really do. I was diagnosed with osteoporosis, diabetes and discovered that my bicuspid valve would need surgery at some point, all within the space of two months nearly ten years ago ! I then looked at all the things I could do to help myself avoid complications from the diabetes, fractures from the osteoporosis, and delay the date of cardiac surgery as long as possible. I changed my eating, I added a lot of exercise, I looked at supplements that might be helpful - this was a huge wake up call even though I hadn't lived life unhealthily before then ! My diabetes is not due to junk food or overweight - I've always been skinny and eaten the kinds of foods avocated for good health, but they weren't good for "me". The osteoporosis was due to ill health many years earlier, and the BAV I was born with. You can always turn things around by doing your very best - I'm sure you will, but don't focus on the negatives as that doesn't help your frame of mind. Ha, even when I knew cardiac surgery was imminent I found out as much as I could about it so that I was not a passive recipient of this but a partner with my medical team - even if they didn't want a partner LOL

PS - I'm healther now than I've ever been my whole life. I had my AVR when I was 60 and I plan to live to 85 and be healthy till the day I die.

 

[Nocturne]

You're right, of course. For me, that wake up call came about a year ago when I learned that I had a pretty severe hormonal problem that was aberrant enough that the docs said it couldn't have been caused by obesity alone, but that the obesity certainly contributed to. Average T levels for a man my age are around 650; mine was 125, which would be aberrantly low for a 100 year old man. The effects were nothing less than traumatic, and the drug they put me on to help gave me wild mood swings and made me weepy all the time. In addition, I learned that my lipids were wildly bad, with dyslipidemia of LDL 185 and HDL 35.

So what did I do? Wallow in self pity and do nothing but spiral into oblivion? No, I started exercising every day, eating right, and doing what I could do to help my body recover. It was hard, but I did it. I went from an obese 220 pounds to being just one pound overweight at 160 pounds, losing 25% of my body mass. I went from wearing XL tee shirts to Medium tees. I went from being in the highest 10% weight category for men my age and height to the lowest 40%. My blood pressure came down from pre-hypertension to normal, and my lipids got better -- although they are still pretty crap, which appears to be mostly due to genetics at this point.

I look and in many ways feel better than I have in many years. And the whole time, as I researched more about my condition and learned the chilling news that medical science is just beginning to see the link between low T in males and cardiovascular disease, I thought -- "Well, this hormonal thing is bad, but at least I got a wake up call and am fixing it before anything happens to my HEART..."

I wanted the coronary calcium scoring test done months ago, based on recent studies I had read about the link between my condition and heart disease, but both docs I asked pooh-poohed the idea because "at my age" there would be no significant findings. That changed when one of them heard a heart murmur and the followup echocardiogram revealed aortic sclerosis and stenosis. As I said, we learned that my coronary artery calcium level is 156, which you might expect in a 65 year old man. At my age, docs will say you've got trouble ahead if your score is in the teens.

So I get the bit about the wake up call. I got mine a year ago, and I responded not only with tears but with blood and sweat as well, and got results. And then came the second and third punches. Seeing them as mixed blessings due to their being wake up calls is pretty hard to do given that I'd already gotten my wake up call and responded to it rather well indeed.