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Bee

VR.org Supporter
Supporting Member
Joined
Jan 8, 2024
Messages
7
Location
Exton PA
Hi, My name is Bee, 72, and I have been in the waiting room for at least 7 years. I have a bicuspid aortic valve with stenosis and an aortic bulge which we monitor every year with ultrasound. I was very fearful in the beginning but recognized I needed information and found this site. Thank you for creating this excellent meeting place to help us understand what our possibilities are in having successful surgery and outcomes. My numbers have not changed for 2 consecutive years but because I am aging my doctor wants to watch me more closely. I still score moderate, but very close to severe. I am thankful that I live in a great area for health care, (outside of Philadelphia,) and know when the time comes I will be in good hands.
 
Hi Bee and welcome.

The two guys who did the most on this site were Hank and Ross, hats off to both of them for what they did.

My numbers have not changed for 2 consecutive years but because I am aging my doctor wants to watch me more closely. I still score moderate, but very close to severe. I am thankful that I live in a great area for health care, (outside of Philadelphia,) and know when the time comes I will be in good hands.
the numbers not changing are good news for you, and as you're already 72 it may just be that a TAVR could be the ticket for you.

Much work is happening in that real and all facets of it (from the valves themselves to the insertion methods) are improving year by year. If you're technical I can give you a good read on that.

I agree with increased monitoring, mostly because "nobody likes surprises" and the body is good at adapting.

Personally I have no idea what I'll be like at 72, but then I said I'd have no idea what I'd be like at 60 when I was 48 either.

Best Wishes
 
Thanks for your welcome pellicle, I’ve been lurking here since 2018, but decided it was time to support the organization. I am open to any good reads and am able to understand most technical jargon. Thanks for your input.
 
Welcome Bee!

Glad that you found us. I like your physician's plan to monitor you more frequently. As you probably know, echos are just ultrasound with no radiation and no negative side effects, so there is no harm in frequent monitoring.

I am thankful that I live in a great area for health care, (outside of Philadelphia,) and know when the time comes I will be in good hands.
That's great. Knowing that you're in good hands is a huge peace of mind.

I hope that this site is as helpful to you as it was to me. I found it a few months before my aortic valve surgery and it was an enormous resource for me. You are not alone.
 
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I am open to any good reads and am able to understand most technical jargon.
cool ... so, the topic is not actually "on the button" with what you may research, but the content is good (pacemaker potential is not IMO what you may have searched for)

https://pubmed.ncbi.nlm.nih.gov/25011716/
lots of good little bits (like mentions of names of players and inferences you can make from that)

full text link
https://www.sciencedirect.com/science/article/pii/S073510971402436X?via=ihub
Best Wishes
 
I am looking for studies on BAV replacement and either women included in the study equally or a 100% woman study. Because we react differently concerning heart health I am assuming we are unique concerning valve replacement and what works best for us.
 
I am looking for studies on BAV replacement and either women included in the study equally or a 100% woman study.
almost every study I've ever read is quite high in female inclusion, I've certainly never seen one that excludes one sex or the other. Interestingly BAV is more common in males

https://pubmed.ncbi.nlm.nih.gov/32599025
Bicuspid aortic valve (BAV), the most frequent congenital heart disease, is characterized by an uneven distribution between sexes. BAV is three to four times more frequent in men than in women which could be associated with a reduced dosage of X chromosome genes. In addition, BAV has a multifactorial inheritance, low penetrance and variable phenotypes that may lead to different form of valve degeneration and dysfunction over time as well as different incidence of aortic valve and vascular complications between men and women.

So it would seem to me that an "all female study" would be a rather narrow view as far as a surgeon is concerned. Despite this natural advantage I indeed see frequently its about 1:2 or even 1:1 in terms of inclusion of male and female

This study shows that like so many other aspects of life having XX chromosome confers benefits over XY for longevity

https://pubmed.ncbi.nlm.nih.gov/18653574/
Setting: Postoperative aortic valve replacement (AVR) or mitral valve replacement (MVR).
Patients: 3118 patients (1261 women, 1857 men) who underwent AVR or MVR between 1976 and 2006 (2255 AVR, 863 MVR), with mean follow-up of 5.6 (4.5) years.
Main outcome measures: The independent effect of gender on the risk of long-term complications (reoperation, stroke and death) after valve replacement surgery using multivariate actuarial methods.
Results: After implantation of an aortic valve bioprosthesis, women had a significantly lower rate of reoperation compared to men (comorbidity-adjusted hazard ratio (HR) 0.4; 95% confidence intervals (CI) 0.2 to 0.9). In contrast, if an aortic mechanical prosthesis had been implanted, women were more at risk for late stroke compared to men (HR 1.7; CI 1.1 to 2.7). After adjustment for age and co-morbidities, women had significantly better long-term survival compared to men after bioprosthetic AVR (HR 0.5; CI 0.3 to 0.6), but there was no survival difference between genders after mechanical AVR. Trends existed towards better survival for women after bioprosthetic MVR (HR 0.6; CI 0.4 to 1.0) and mechanical MVR (HR 0.8; CI 0.5 to 1.1).
Conclusion: The long-term outcomes after valve replacement surgery differ between women and men. Although women have more late strokes after valve replacement, they undergo fewer reoperations and have better overall long-term survival compared to men.

According to population spread women are over-represented in this particular study. Also this may suggest that women would be better off being on ACT no matter what valve they choose.
 
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I am looking for studies on BAV replacement and either women included in the study equally or a 100% woman study. Because we react differently concerning heart health I am assuming we are unique concerning valve replacement and what works best for us.
Hi Bee.
I think that it's great that you want to read up on the medical literature. Also, in my view, you're doing so at the right time. We've seen members still in the mild or early moderate stages of severity overwhelm themselves with all the literature. A person who has mild AS could easily be 15+ years away from surgery and the decisions one might face could have a very different landscape by then. You're moderate, but near the 'severe' threshold, so you are not likely facing immediate surgery, but could realistically be facing it in the near future. Having said that, I certainly hope that your echos continue to show no progression. All this to say, the timing is right to take your time and digest some of the medical literature at a comfortable pace. I started my due diligence when I was moderate, near the severe AS threshold, as you are now. Ok, truth be told, I could not have started studying up any sooner because I was moderate/severe when first diagnosed, lol. I think I'm probably glad that my condition was not known until then- gave me plenty of time to read up and make informed choices but did not have anyone trying to get me to live life in a bubble growing up, nor take on any pointless anxiety.

There are hundreds, if not thousands, of studies that have been published regarding valve disease; mechanical vs tissue, specific valve brands, TAVI, TAVI vs SAVR, full sternotomy vs minimally invasive and so on. The amount of literature can be overwhelming. Also, per your comment about studies on women included equally or 100% women, you will find that the vast majority of studies in this area will have both men and women. There may be others, but the only area which comes to mind where there is a difference between men and women is with patient/valve mismatch. This would be where a valve was put in place which is too small, leading to a higher-pressure gradient and possible earlier valve failure. Mismatch occurrence is higher for women. But, this is not really an area where you will be making a decision. You will be asleep on the operating table when your surgeon decides on the valve size to insert.

My suggestion would be to narrow your focus to the areas in which you are likely to face choices.

-Mechanical vs tissue: It is not likely that this is an area for which there would be debate. At age 72, the guidelines call for a tissue valve. Probably every consult you receive from your cardiologist or surgeon will firmly place you in the tissue category, as a tissue valve will likely last you the rest of your life at age 72. Perhaps the only argument to go mechanical would be if at the time of surgery you happen to already be on warfarin anyway for something else, thus eliminating the main reason why people choose tissue.

SAVR vs TAVI (aka TAVR): At age 72, this is likely to be the choice that you will face. In my personal view, if I was 80+ years old, and eligible, I would go TAVI. If I was <70 years old, I would go SAVR, assuming I did not have any comorbidities which made me a high risk patient. 70-80 is probably where it gets a little tricky to decide which is the right choice and this is where being on top of the latest medical studies would be of benefit. I'm just sharing my view, if it were me, and you and your medical team might come up with a different view. Also, this is an area in which new studies are being published, so I would keep up with any new developments. The studies I have read pointed to a TAVI survival benefit in year 1, but not after year 1, and by year 5, SAVR had surpassed TAVI in terms of being lower risk. Also, when I looked into it, there was virtually no data on low risk patients, but there is one newer study since then, which I am aware of. There was a 2023 study, sponsored by Ewards Life-Sciences, the leading TAVI manufacturer, which looked at low risk patients in SAVR vs TAVI. Even though there was a 22% higher 5-year mortality for the TAVI group, the study somehow concluded: "there was no significant between-group difference in the two primary composite outcomes." It makes one wonder what it would have taken for them to conclude that there was a statistical difference. I'll let you decide if who funds such studies sometimes plays a role in how the data is interpreted. I've linked the study at the bottom of this post.

But, before you get too far down the SAVR vs TAVI road, you might ask to be referred to an interventional cardiologist specializing in TAVI, to be evaluated. When I was moderate/severe, this is exactly what my cardiologist did- his idea just so that we knew if TAVI was even on the table for me. Even though I had just completed an echo, Dr. Curtiss Stinis, one of the interventional cardiologists at Scripss who does TAVI, directed another echo for me, in which very specific measurements were focused on. As is often the case for BAV patients, it was determined that I was not likely a good candidate for TAVI, due to uneven distribution of calcium. He told me that to be more certain, we could do a CT scan. I declined, as by then I had read enough to feel that TAVI should not be done for low risk patients.

So, if you get evaluated and they determine that you are not eligible, you can further narrow your area of focus, with respect to your due diligence. Also, discuss with your cardiologist your relative risk. 72 years old would still put most people in the low risk category, but there are other factors which determine surgical risk. There is a formula to calculate patient risk and your cardiologist might be able to assess your score to determine if you are low, moderate or high risk for surgery. The higher the risk, the more TAVI is favored.

If and when your stenosis becomes severe, if you are asymptomatic, you may face another choice. Some cardiologists will wait for symptoms and will not present you with the choice and some will. This was the situation for me, as it is for many, in that when I crossed the severe threshold I was asymptomatic. My cardiologist said the choice was mine; get surgery now or watch and wait for symptoms. I chose not to wait for symptoms. If your cardiologist is of the mindset that one should wait for symptoms and not give you the choice, you should be aware that many cardiologists recognize the growing medical literature in support of not waiting for symptoms and will give you the choice.

Wishing you all the best on your journey and the choices which you may face!

Here is the study which I referenced above:

Transcatheter Aortic-Valve Replacement in Low-Risk Patients at Five Years​


https://www.nejm.org/doi/full/10.1056/NEJMoa2307447
 
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Thank you for your input. My one problem is I am over weight, which I believe will put me in the SAVR camp. These last seven years have slowly taken away my ability to exercise at a strenuous level. No more weight lifting, no more walking steep hills, no more gardening and cutting brush for 2 hours straight. My doctor has slowed me down so I don’t force an ascending aorta tear due to a measurable bulge. I have come to acceptance that my activity has changed to get as much time out of my parts as possible. So I walk daily on gentle hills, and only garden 30 minutes at a time. And no more shoveling snow! My husband does all the heavy lifting now, and I am so thankful for his efforts! I look forward to reading up on as much helpful research and member experience as I can and hope I have another year to digest everything to prepare me for a successful outcome. Great to be a member of this group!
 
Hi
Thank you for your input. My one problem is I am over weight, which I believe will put me in the SAVR camp. These last seven years have slowly taken away my ability to exercise at a strenuous level. No more weight lifting, no more walking steep hills, no more gardening and cutting brush for 2 hours straight. My doctor has slowed me down so I don’t force an ascending aorta tear due to a measurable bulge. I have come to acceptance that my activity has changed to get as much time out of my parts as possible. So I walk daily on gentle hills, and only garden 30 minutes at a time. And no more shoveling snow! My husband does all the heavy lifting now, and I am so thankful for his efforts! I look forward to reading up on as much helpful research and member experience as I can and hope I have another year to digest everything to prepare me for a successful outcome. Great to be a member of this group!
reading this makes me think that your Dr has not addressed your needs for surgery in time. Perhaps this related to a COVID type 'deferral' decision
¯\_(ツ)_/¯

with respect to the bulge, its the diameter in mm (or cm) that matters.

Surgery is recommended for patients with aneurysms of aortic root and ascending thoracic aorta with a confirmed growth rate of ≥0.3 cm per year across 2 consecutive years or ≥0.5 cm in 1 year.

as @Chuck C alluded to, this has had "the ring studied out of it" for decades and there is a lot written. For instance my first OHS was in 1974, so that's like 50 years of hundreds of thousands of surgeries and examinations (just in Australia).

PS: I have memories of my first surgery and being in a ward that was only paediatric patients and a bit less than half of us were girls.

Best Wishes
 
My last test was June 2023 and measured:
  • Dilated ascending thoracic aorta: 4.0 cm
    • No significant change from 6/2/2022. So as I said I am in a holding pattern. On June 2017 I was 3.9 cm, I went to 4.0 in 2018 and thankfully it is not growing. Plus all other measurements held to the same numbers as 2021. I will see where I’m at this June when we test again. I’m just creeping along…
 
My last test was June 2023 and measured:
  • Dilated ascending thoracic aorta: 4.0 cm
    • No significant change from 6/2/2022. So as I said I am in a holding pattern. On June 2017 I was 3.9 cm, I went to 4.0 in 2018 and thankfully it is not growing. Plus all other measurements held to the same numbers as 2021. I will see where I’m at this June when we test again. I’m just creeping along…
from what I've read a valve replacement (by SAVR) can result in a stabilisation of the root.

https://www.ahajournals.org/doi/full/10.1161/01.cir.0000087385.63569.79
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10248904/
given that apparent stabilisation (perhaps driven by behavioural changes) of your ascending aortic aneurysm its possible that you won't need to have an aortic aneurysm changed out.

As I understand it, the basic principle is considered to be a result of scar tissue (which is not something which is just on the surface).

Well worth a listen to fold into your decision making process

https://www.medscape.com/viewarticle/838221
Best Wishes
 
Hi and welcome. Nice to see another septuagenarian on here. (y)

With respect to Aortic Aneurysm, I am puzzled by your Dr. advising you to slow down due to risk of a tear at a measurement of 4.0. Are you seeing a cardiologist? Is there some other factor than the AA that's driving that advice?

I do not pretend to know better than your Dr. what is the best course of action for you. However, my layman's understanding is that until the AA (or AVA) is in the severe range, exercise is highly recommended as long as it is not extreme - e.g. bench pressing massive weights, shoveling snow, etc.

If you do a search online, there is a multitude of studies showing the risk of dissection or rupture based on the size of the AA.

My experience which could be completely different than yours, was that my cardio encouraged me to be as active as possible even at age 70. YMMV
 
With respect to Aortic Aneurysm, I am puzzled by your Dr. advising you to slow down due to risk of a tear at a measurement of 4.0.
That's a good point. It is puzzling to me as well. Certain exercises and strain should be avoided, but getting sufficient exercise is so critical to long term health and also improves surgical outcomes. I would expect that significant amounts of mild/moderate exercise would be encouraged. I think it warrants a second opinion.
 
Hi

reading this makes me think that your Dr has not addressed your needs for surgery in time. Perhaps this related to a COVID type 'deferral' decision
¯\_(ツ)_/¯

with respect to the bulge, its the diameter in mm (or cm) that matters.

Surgery is recommended for patients with aneurysms of aortic root and ascending thoracic aorta with a confirmed growth rate of ≥0.3 cm per year across 2 consecutive years or ≥0.5 cm in 1 year.

as @Chuck C alluded to, this has had "the ring studied out of it" for decades and there is a lot written. For instance my first OHS was in 1974, so that's like 50 years of hundreds of thousands of surgeries and examinations (just in Australia).

PS: I have memories of my first surgery and being in a ward that was only paediatric patients and a bit less than half of us were girls.

Best Wishes
So I suppose this would put me in that camp, as in 2022 my AA was 3.6cm and now am supposedly 4.1cm..
 
Hi, My name is Bee, 72, and I have been in the waiting room for at least 7 years. I have a bicuspid aortic valve with stenosis and an aortic bulge which we monitor every year with ultrasound. I was very fearful in the beginning but recognized I needed information and found this site. Thank you for creating this excellent meeting place to help us understand what our possibilities are in having successful surgery and outcomes. My numbers have not changed for 2 consecutive years but because I am aging my doctor wants to watch me more closely. I still score moderate, but very close to severe. I am thankful that I live in a great area for health care, (outside of Philadelphia,) and know when the time comes I will be in good hands.

Welcome. I'm also in the Philly area, not too far from Exton. There does seem to be a lot of cardio Drs & Surgeons/Hospitals in this area. Don't be afraid to "shop around" for a surgeon who you feel comfortable with if it looks like you will have to pursue that - but you may just be fine as is!

I had my surgery in Phoenixville 10 years ago, that surgeon seemed like a real "pro" but am not sure if he is still practicing. I did not have the luxury of doing any research or prior investigation of Drs or options though, as I had collapsed & was in an emergency situation out of my control. If I had the time I probably would have chosen Lankenau Hospital near Philly since they have a good heart surgery reputation (and I used to work there a very long time ago).
 

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