Outdoors
Sponsored by

Experiences with aortic stenosis?

3,653 Views | 41 Replies | Last: 9 mo ago by chocolatelabs
AggieChemist
How long do you want to ignore this user?
Got some lousy news recently. Looks like my pumper is faulty. My stenosis is already moderate/severe based on pressure gradient, valve area, and regurgitation. I'm waiting to get in to see structural heart/cardiac surgery. I'm starting to think that I'm not as fat and old as I feel and that my decreased work capacity and lack of wind is my heart.

Has anybody else dealt with this *****

This blows.
HockeyAg07
How long do you want to ignore this user?
If you're gonna need a heart surgery it's a relatively easy and quick one nowadays. There is also a Cath lab trans catheter avr where they go in through your groin and inflate a new valve in place. Keep us posted.
AggieCrew44
How long do you want to ignore this user?
What is your age? If you're more like 50-69 you likely have a bicuspid aortic valve which is an anatomical abnormality you are born with and runs in families (kids should get screened). If you're otherwise pretty healthy an open heart valve replacement is the way to go.

If you're older 75+ it's probably just age related wear and tear. Open heart is an option but obviously not everyone that age is an ideal surgical candidate so a TAVR (percutaneous valve replacement) may be an option. Easier to do on people with comorbidities but shelf life is shorter which is why it's usually given to people with shorter life expectancies after

Source: internal medicine doc
AggieChemist
How long do you want to ignore this user?
I'm 49. my transthoracic echocardiogram was unable to determine whether or not my valve is bicuspid. Was initially found via heart murmur at my January checkup (much love to my black female primary care physician! DEI hire, my ass). I also have ascending aorta dilation. And constant chest pains.
steve84
How long do you want to ignore this user?
I had severe stenosis and had a TAVR valve installed this past mid December. My condition was first noted by my family doc who heard the murmur. Referred me to a cardiologist who kept monitoring and watching my condition via echocardiograms and other testing. Over a couple of years, the aeortic valve progressed from mild to severe stenosis.

I am normally an active person, but once the stenosis became severe, it absolutely killed my energy and I was short of breath. Really felt bad the last couple of months before surgery and spent most of my time in a chair. Didn't feel like doing anything. After about a month, I started the cardiac rehab program and now feel back to normal.

The procedure is relatively easy on you, and I only spent one night in the hospital before going home. Would have been much tougher with a much longer recovery if I had open heart surgery.

Don't delay. Both my surgeons involved told me I would not have lasted 6 months if I chose not to do it.

Let me know if you have any questions. I would be more than happy to let you know anything you would like to know about my experience.
AggieMPH2005
How long do you want to ignore this user?
TAVR is the way to go if you are a candidate but there are some exclusion criteria.

The recovery time is much faster and you'll feel better right away from what I have been able to observe
Scotty88
How long do you want to ignore this user?
I was recently diagnosed with moderate aortic stenosis after my heart murmur was heard by my GP to be louder than last year. I am 58 and in good shape (ran a half marathon this year in Oct and last year).

I am pretty much symptom free for now...they tell me not a thing I can do about it. Just a matter of wait and see.

I'm trying not to stress out about it...I have talked to a couple of people who have had the open heart procedure and they say that they have been fine ever since.

ttha_aggie_09
How long do you want to ignore this user?
Don't have any medical insight but hope you get better! Miss seeing your fishing pics and hope to see many more in the future
dr_boogs
How long do you want to ignore this user?
ttha_aggie_09 said:

Don't have any medical insight but hope you get better! Miss seeing your fishing pics and hope to see many more in the future


I'll second this. AC is one of the OGs of the OB. Miss having all those guys around. It's a different board now for sure. Keep us posted AC!
unclefish
How long do you want to ignore this user?
My Dad had has three aortic valve replacements. The first was open heart when he was 59......that one lasted 16 years. The next one was done via the TAVR procedure when he was 75. The valve replaced via TAVR lasted 8 years and he just had open heart surgery to replace the valve again at age 83. He came through just fine and is home doing rehab.

Most hospitals won't do a TAVR procedure if you are under 60 years old.....because they usually can only do it once because there is only so much room inside the aortic valve area. During the TAVR they don't remove the faulty valve they just place a smaller valve inside the faulty one.

I will tell you a brief story of a dear friend of mine that just had valve replacement surgery three weeks ago at St. Lukes in Houston. Too young to have the TAVR so they did open heart. He got through the procedure ok but an hour after surgery he "coded". They tried for an hour to revive him and finally got a pulse.....but the damage was done. His organs started failing and they took him off life support the next day. He was 57.....just tragic. He was one of the 3% that don't make out of the hospital from that open heart procedure.
Bonfire97
How long do you want to ignore this user?
I just wanted to chime to to let you know that your not the only one dealing with this sort of BS. Last year, at 49, I found out I have a leaking/regurgitating aortic valve and 5 coronary artery blockages, 90% blockage in the LAD/Widowmaker.

Just make sure you get multiple opinions. I went to 4 different cardiologists, who were affiliated with major Houston hospitals, and found them wildly variable in their knowledge and how they wanted to manage this. Keep making doctor's appointments until you find two that somewhat agree on the path forward for you. And, make sure that advise matches your research.
AggieChemist
How long do you want to ignore this user?
unclefish said:

I will tell you a brief story of a dear friend of mine that just had valve replacement surgery three weeks ago at St. Lukes in Houston. Too young to have the TAVR so they did open heart. He got through the procedure ok but an hour after surgery he "coded". They tried for an hour to revive him and finally got a pulse.....but the damage was done. His organs started failing and they took him off life support the next day. He was 57.....just tragic. He was one of the 3% that don't make out of the hospital from that open heart procedure.


This is extremely comforting. Thank you.
WC87
How long do you want to ignore this user?
Prayers up for AC. Keep us posted.

FYI That Sneed call you sent me…found it absolutely shattered in my vest last season. Dang it. I have another one inbound however.
AggieMPH2005
How long do you want to ignore this user?
AC these get done safely all the time. With either approach you should have an excellent outcome.

Try and do this at a place that does a bunch if you can. I believe you are in WV so I don't have any recommendations for you there but the Baylor Plano Heart Hospital does more of these in a week than some programs do in a year and is well known for having excellent outcomes.

Their volumes and outcomes were better than the St Luke's program referenced above when I was involved in cardiology 14 years ago for example.
AggieChemist
How long do you want to ignore this user?
WC87 said:

Prayers up for AC. Keep us posted.

FYI That Sneed call you sent me…found it absolutely shattered in my vest last season. Dang it. I have another one inbound however.


He has now retired from making calls. I saw one go at auction last Saturday night for $175. Glad I have three or four stashed away, including two custom one-offs.
WC87
How long do you want to ignore this user?
Hmm, my VA buddy said he could get one for me but perhaps not. I still have a slate version.
AggieChemist
How long do you want to ignore this user?
He may still have some stock, but I got my info from Lonnie, Jr
AggieChemist
How long do you want to ignore this user?
ttha_aggie_09 said:

Don't have any medical insight but hope you get better! Miss seeing your fishing pics and hope to see many more in the future


Thanks for the kind words. I haven't taken a lot of pics lately but here's one if it works.

https://instagr.am/p/DHXIadZNIf2
ttha_aggie_09
How long do you want to ignore this user?
Hey, that's not a fish
AggieChemist
How long do you want to ignore this user?
Smell the finger…
ttha_aggie_09
How long do you want to ignore this user?
Ahhhh, WV River tuna
AggieChemist
How long do you want to ignore this user?
https://instagr.am/p/DHwDQ9IJ-ho

Still cold af. Winter hangin on
Mr. Dubi
How long do you want to ignore this user?
I second the notion of going some place that does volume. Do not go to an outpatient carh lab to have a TAVR!

Also make sure the aorta is worked up. An ascending aorta can be repaired using an endovascular technique, but no idea if it can be done in conjunction with a TAVR

Best of luck to you
aggiedent
How long do you want to ignore this user?
I was diagnosed with BAV (Bicuspid Aortic Valve) at age 50. I've made it to 62 and I've only just transitioned from mild to moderate stenosis and just a touch of enlargement. But still no symptoms………..probably because I became addicted to working out after I found out 12 years ago.

My cardiologist's best guess……..surgery in 2 years. I'm not in the least bit concerned. Done a hell of a lot of things in life more risky than valve replacement surgery. Positive vibes!!!!! Only way to approach it.
YokelRidesAgain
How long do you want to ignore this user?
AggieChemist said:

I'm 49. my transthoracic echocardiogram was unable to determine whether or not my valve is bicuspid. Was initially found via heart murmur at my January checkup (much love to my black female primary care physician! DEI hire, my ass). I also have ascending aorta dilation. And constant chest pains.
With that history I would be quite surprised if you don't have a bicuspid valve at your age--the ascending aortic dilation is a common co-association. Cardiac MRI can be done to confirm--as noted above, this is often hereditary and first degree relatives (siblings, children) should be screened if you have it.
eric76
How long do you want to ignore this user?
unclefish said:

My Dad had has three aortic valve replacements. The first was open heart when he was 59......that one lasted 16 years. The next one was done via the TAVR procedure when he was 75. The valve replaced via TAVR lasted 8 years and he just had open heart surgery to replace the valve again at age 83. He came through just fine and is home doing rehab.

Most hospitals won't do a TAVR procedure if you are under 60 years old.....because they usually can only do it once because there is only so much room inside the aortic valve area. During the TAVR they don't remove the faulty valve they just place a smaller valve inside the faulty one.

I will tell you a brief story of a dear friend of mine that just had valve replacement surgery three weeks ago at St. Lukes in Houston. Too young to have the TAVR so they did open heart. He got through the procedure ok but an hour after surgery he "coded". They tried for an hour to revive him and finally got a pulse.....but the damage was done. His organs started failing and they took him off life support the next day. He was 57.....just tragic. He was one of the 3% that don't make out of the hospital from that open heart procedure.
I used to know a guy who had his first aortic vale replacement when he was in his early teens and had to have them replaced periodically. He said that the shortest time between replacements he had was about two months.

When I took the Navy physical in the spring of 1974, they found an issue with my heart that caused me to flunk the physical. The first diagnosis was a bad valve.

That summer I entered the Texas Heart Institute at Saint Luke's and Dr Denton Cooley changed the diagnosis to an atrial septal defect -- a hole in the heart. He told me that without surgery, I had about five years to live and last year of that I would be in a nursing home and unable to get out of bed. He said that with the surgery, there was a good chance that I would live longer.

He operated the next morning and I am still here 51 years later.

milner79
How long do you want to ignore this user?
February 2024, on my 67th birthday, I had OHS to replace aortic valve, do double bypass and repair an aneurism. Excellent surgeon, excellent care at Houston Methodist. Eight days in the hospital. Recovery and rehab went well. Honestly, one of the worst parts I remember (aside from the horrible hospital bed) was my inability to sleep comfortably at home. I spent a lot of nights in the recliner that first month out.

By August I had summited a 13er (Sniktau) in Colorado and hiked up Enchanted Rock. In November, my daughter and I hiked Guadalupe Peak. I ran out of time/opportunity to try a 14er ... that is the goal this summer.

Stay active and in your best possible shape leading up to your surgery. Watch your weight. After surgery, get up and walk ASAP (they won't give you a choice, so embrace it). Then when you get home, keep walking. And get into your rehab protocol as soon as they will let you.

As others have said, reach out if you have questions. You will do well. All the best!
maroon barchetta
How long do you want to ignore this user?
Cooley and DeBakey. The top two in the world, working right next to each other for decades.

Glad he was your guy.
The Fall Guy
How long do you want to ignore this user?
I was born with a hole in my heart they didn't find until I was 33. Had open heart surgery in 2006. My heart is enlarged and had no problems until 2021 when I had hernia surgery my heart went in AFIB the day after I got out of the hospital and went straight back to the hospital for 3 more days. Since then my heart would skip some beats which is normal they said. I was sick with something over a month ago. Just cough, congestion. 3 weeks after that my heat was going out of beat all the time. Had a pain in the center of my back and radiated to my jaw. Wife took me to the ER and they said my heart was fine but needed a stress test. So I did the nuclear stress test and treadmill. I passed the stress test they said for my age group of 51. Now have to wear a heart monitor for a month. I am now realizing it is the caffeine. I stopped all caffeine and any alcohol. My heart will skip a beat now and then while exercising but not like after I was sick. Lofe changes are happening.

It is scary with the ticker but as others said technology has really advanced even since they cracked my chest open
reineraggie09
How long do you want to ignore this user?
I'll keep this short. Don't waste time and go to Houston. My mom travels from the panhandle to Houston multiple times per year for check ups and procedures for the past 25 years. She has obstructive cardiomyopathy. Even doing simple echos in Amarillo has proven a waste of time and she has them redone in Houston. She goes to St Luke's with Dr Seger. I have my check up (I carry the gene) next month.
BwdAg
How long do you want to ignore this user?
The start for me was dizzy, low energy etc. I was in good shape, but started being tired, stopped running (had run 4 marathons). At 55 I had avr, felt great after recovery. About 3 years later started having dizziness, so started entrestro. Great drug, felt great again.

I have had other heart problems (SCA) but are genetic related, not bad plumbing.

Good luck. If you are in BCS, I recommend Laura Pugh /dr wigley with central tx heart for plumbing and cj Wilson/ dr h with ut health for electrical.



eric76
How long do you want to ignore this user?
Back in the 1990s, someone told me that a heart is like a house. When you have problems, they are either plumbing, electrical, or structural.
AggieChemist
How long do you want to ignore this user?
Well to update the thread I saw the surgeon today. Will be getting a mechanical valve and aneurysm repair. I've got to get a CT and heart cath first and then they will proceed.

On the bright side, I got RIFed today, with no notice, after 21 years of faithful public service. I told the doc do whatever you're doing before the insurance runs out in June.
maroon barchetta
How long do you want to ignore this user?
Dammit
WC87
How long do you want to ignore this user?
Sorry to hear that.
Page 1 of 2
 
×
subscribe Verify your student status
See Subscription Benefits
Trial only available to users who have never subscribed or participated in a previous trial.