I've crossed the line into severe and need to make a decision

[cldlhd]

Hi all.

I have really enjoyed being here on the forum for the past few months and appreciate all the shared experiences and knowledge. I’m 53. My BAV and moderate aortic stenosis was discovered 20 months ago. I’ve stayed in the moderate range on my echos, with AVA 1.1cm2 on my last two, but then last week it dropped suddenly to .87cm2, crossing the threshold into severe AS. Both peak jet velocity and mean pressure gradient appear to agree, at 4.2 m/s and 46mmHg. I’m being seen by a very competent team at a top valve clinic. My cardiologist has told me that we can operate now or wait for symptoms- my decision. I am asymptomatic and have not experienced any slowing down. I hike briskly up a 1,200-foot mountain daily and keep a very good pace. Occasionally my friends and I all push for time and I beat them all pretty handily, so I don’t believe that I am compensating by slowing down my pace. I feel great and have a lot of energy. On the one hand, I want to put off surgery as long as possible. On the other hand, I find the conclusion of the meta-analysis published last year in JAMA Cardiology very compelling, showing significantly improved long term outcomes when surgery was done for severe AS patients before symptoms vs severe AS patients who were symptomatic. “Early intervention was associated with a significant reduction in long-term mortality (hazard ratio, 0.38; 95% CI, 0.25-0.58).” I other words, the long-term mortality was reduced by 62%, if the surgery is done before symptoms present, in this meta-analysis of many studies- I find this result very compelling: Natural History of Asymptomatic Severe Aortic Stenosis and the Association of Early Intervention With Outcomes

My cardiologist believes that I will likely start experiencing symptoms within a year- of course, no one can say for sure when. So, if I wait for symptoms, I can possibly put it off surgery for months up to a year and possibly longer with some luck, but that day is coming soon enough in my near future. Put it off as long as possible or bite the bullet and go with the data from the meta-analysis finding better long term outcomes doing it before symptoms and get surgery now?

I welcome all thoughts, suggestions, and recommendations.

Much thanks to all.

We have a very educated board here that appreciate details, so I am editing to add the following information about my condition:
No aortic aneurism: Max aortic diameter is 3.4cm
Preserved ejection fraction: Consistently 73% to 74% per echo and MRI
LV wall thickness 1.15cm, with LV mass in the normal range

My situation was a little different than yours, my BAV was discovered when I was 44, I'm now 52. I didn't show any signs of stenosis or symptoms but I had an aortic aneurysm that was borderline. But even though our situations are different the decision on surgery was the same basically. I could wait I was told but this could result in sudden death if the aneurysm went or I could get the surgery now. I opted to wait 6 months to go over the options and then I got the surgery done. Almost everybody says better to get it over with but while that may be true it's advice that is a lot easier to give than take. My surgery went great and I'm glad I did it when I did but it's a tough decision, my son was eight at the time and I kept thinking what if I'm one of the ones who doesn't make it through the surgery? And I could have waited 10 years? But younger and healthier with no symptoms does make it much more likely you'll have a better outcome in my humble opinion

 

[Chuck C]

My situation was a little different than yours, my BAV was discovered when I was 44, I'm now 52. I didn't show any signs of stenosis or symptoms but I had an aortic aneurysm that was borderline. But even though our situations are different the decision on surgery was the same basically. I could wait I was told but this could result in sudden death if the aneurysm went or I could get the surgery now. I opted to wait 6 months to go over the options and then I got the surgery done. Almost everybody says better to get it over with but while that may be true it's advice that is a lot easier to give than take. My surgery went great and I'm glad I did it when I did but it's a tough decision, my son was eight at the time and I kept thinking what if I'm one of the ones who doesn't make it through the surgery? And I could have waited 10 years? But younger and healthier with no symptoms does make it much more likely you'll have a better outcome in my humble opinion

Hi,
Thanks for sharing your story.

" I kept thinking what if I'm one of the ones who doesn't make it through the surgery?"

I had similar thoughts. If I was one of the very few who did not do well in the surgery, what if I had a few more years before surgery. As it turned out, my valve was rapidly calcifying. My surgeon visited with me after surgery and showed me photos of my valve, indicating that it was not only severe, it was in critical condition. So, I expect that I likely would have started feeling symptoms soon had I waited, and the idea that I might have had years to delay was just not the case. He said that with that level of calcification I was a ticking time bomb. Very glad that I decided to move forward and not wait.

 

[tezza]

Hi.
It sounds like you are doing most of the exercises on the list that they gave me. 1) shoulder rolls 2) side bends 3) trunk twist 4) 1/2 squats- I do a lot of these for leg and core strength 5) calf raises they also have me do 6) side kicks - lifting each leg as far as I can to the side 20x each and 7) shoulder retractions- inhale as you bring your elbows back and exhale as you bring the elbows forward. 10x

I think that they help work out some of the pains and get things moving and lubricated again.

Thanks Chuck, there are a couple I can add in. Even though they can be uncomfortable to do, they sure do help to get things moving and lubricated as you say.

 

[pellicle]

" I kept thinking what if I'm one of the ones who doesn't make it through the surgery?"

my view on this is that I'm just not that lucky ...

 

[cldlhd]

Hi,
Thanks for sharing your story.

" I kept thinking what if I'm one of the ones who doesn't make it through the surgery?"

I had similar thoughts. If I was one of the very few who did not do well in the surgery, what if I had a few more years before surgery. As it turned out, my valve was rapidly calcifying. My surgeon visited with me after surgery and showed me photos of my valve, indicating that it was not only severe, it was in critical condition. So, I expect that I likely would have started feeling symptoms soon had I waited, and the idea that I might have had years to delay was just not the case. He said that with that level of calcification I was a ticking time bomb. Very glad that I decided to move forward and not wait.

As they say you never know.... I kept thinking if I didn't make it my son was only 8 and I'd miss watching him grow up and, more important, he wouldn't have a Dad. The thought that I'd inadvertently "voluntarily" put him through that was difficult to think about.
It turned out my aneurysm was a little bigger than they thought (4.99cm vs 4.8cm) and the surgery went well tells me I made the right call. We all know it's better when you're healthier and under controlled conditions but when the choice is 100% yours as to when it's tough. At the time I was sort of envying those who were told they had no choice.
I'm glad it worked out for you

 

[Chuck C]

I kept thinking if I didn't make it my son was only 8 and I'd miss watching him grow up and, more important, he wouldn't have a Dad

I totally get this. My kids are a little older, but one of them is in a situation where she might need assistance for many more years, possibly the rest of her life. The thought of leaving 100% of that burden to my wife was a tough pill to swallow.
Yeah, it is easier often when there is no choice in the matter to face our situation. When the choice is left 100% to us there always room for second guessing ourselves. This was where I took comfort in the literature which seemed to overwhelmingly support my decision to move forward with surgery rather than wait for symptoms.
That and the fact that the recommendations that I heard from those who suggested moving forward, from the surgeon and from this board, all seemed to make very good sense. Interesting that my cardiologist recommended to wait for symptoms, but it was a soft recommendation. He did not put up much resistance when we went over the literature which pointed towards getting it done now and he also has great respect for this particular surgeon's view. There is a saying that goes something like "Surgeons want to cut." It is often the case that they lean towards surgery now vs waiting. This particular surgeon is not that way and, from what I observed, he was not one to be eager to move forward unless it truly was time.

 

[cldlhd]

I totally get this. My kids are a little older, but one of them is in a situation where she might need assistance for many more years, possibly the rest of her life. The thought of leaving 100% of that burden to my wife was a tough pill to swallow.
Yeah, it is easier often when there is no choice in the matter to face our situation. When the choice is left 100% to us there always room for second guessing ourselves. This was where I took comfort in the literature which seemed to overwhelmingly support my decision to move forward with surgery rather than wait for symptoms.
That and the fact that the recommendations that I heard from those who suggested moving forward, from the surgeon and from this board, all seemed to make very good sense. Interesting that my cardiologist recommended to wait for symptoms, but it was a soft recommendation. He did not put up much resistance when we went over the literature which pointed towards getting it done now and he also has great respect for this particular surgeon's view. There is a saying that goes something like "Surgeons want to cut." It is often the case that they lean towards surgery now vs waiting. This particular surgeon is not that way and, from what I observed, he was not one to be eager to move forward unless it truly was time.

Well I agree with the saying about surgeons wanted to cut to an extent, I mean I don't have a lot of experience with them but like they say when you're a hammer the whole world looks like a nail..... Interestingly my cardiologist wanted to wait also. She wanted to monitor my aneurysm and go from there because I wouldn't have any symptoms or as my surgeon said my first symptom would be my last..... My blood pressure is fine I'm normally like 115/75 at rest but she wanted me on blood pressure medication to make sure it didn't spike when I got angry or somebody cut me off in traffic or something like that. But it was lowering my blood pressure too much. My surgeon didn't necessarily recommend surgery he said it was up to me but I was definitely in the area regarding aneurysm size where I could justify surgery but didn't necessarily need it as an emergency situation. My cardiologist trained under the surgeon and he is a bit of a rock star at the University of Pennsylvania I guess when it comes to heart surgery so she didn't really put up any resistance when I choose to get it done. The only logical reason I saw for possibly waiting, besides the chance of dying during surgery are having other complications, was that there would be some sort of technological improvement in the next few years that would be beneficial if I had waited. As always it's a personal decision but seeing that the surgery turned out well and who knows it was 6 years ago at this point If I had waited maybe I would have been gone by now?

 

[Chuck C]

Correct me if I’m wrong: you had your surgery on March 22nd! You have two mechanical valves?!
in my case with two mechanical valves (or just me) it took over two months to start seeing a stability in my INR. I was even kept 13 days at the hospital (for that reason, as I was told)! I had mine at UCLA too.

Don’t fret, you’ll be ok. One night I took my 10 mg warfarin twice. I panicked and called the poison center at 11pm. They calmed me down that I’d be ok. And I was ok.
Were you on Amiodarone at the hospital when you were discharged? If you were was the dose changed since your discharge. Did they give you discharge instructions?
My UCLA Electrophysiologist warned me to check my INR more often than once a week when I was put on Amiodarone last April because of its effect on INR!
stay healthy and safe.

Hi Eva,
I just noticed that I never replied to your question, sorry.
I actually had just one mechanical valve installed on March 22, replacing my aortic valve.
per my updates, INR was back to normal in a few days after the 9.7 reading, caused by amiodarone, and has been very stable ever since.
Amiodarone is nasty stuff and causes INR to go through the roof. I’m really glad to be off of it, as it has many other dangerous side effects as well, including drastically higher risks of cancer with long term use.

 

[Amy]

How’s the recovery, Chuck? Feeling good as new? Notice feeling better than you did before surgery in any situations? Hope you’re doing well.

 

[Chuck C]

How’s the recovery, Chuck? Feeling good as new? Notice feeling better than you did before surgery in any situations? Hope you’re doing well.

Hi Amy,
I'm just shy of 9 weeks out from surgery and feeling great.
I would say I do feel good as new. I felt really good before surgery, so I can't say that I feel better than before surgery. I messaged my cardiologist yesterday and asked him if I could go off of Metoprolol, if I monitored my BP closely. He gave me the ok, so I am very glad to be off the beta blocker.
I have felt that the metoprolol was holding me back in my cardio, as it keeps pulse and blood pressure low. However, I was not sure if it was the beta blocker or something else. But, now that I have been off it 24+ hours I did some limited testing today, running up and down the stairs 5 times and a few other things and my cardio felt very good. No shortness of breath or anything. I did not push it too hard, as I want to take it slow, but it looks like my suspicion was correct in that it was the metoprolol that was holding me back.

Now, I just have to watch my BP close and hope that it stays reasonable so that I don't have to go back on it. I took BP 4 times today and the highest reading was 133/80, which is probably low enough to not need meds. My resting pulse is definitely higher than pre-surgery, ranging from 78 to 90, but did some research on the boards today and it sounds like this is very typical in the months following surgery. If any others can comment on this it would be great. Metoprolol kept it at about 78-82 BPM, at 50mg slow release. So, it may have gone up a little bit since going off of it, but I don't think it is so high that I need to be medicated, but will check with my cardiologist.

How are you doing this week? Did you ever find a local cardiologist that you like?

 

[Amy]

Chuck,

That’s great! I have heard that one should come off metoprolol slowly, taking a half tablet for a week or so before stopping completely. I don’t know if this is true, but there it is.

My incision is still open in one spot on the very bottom. At 7 weeks post-op!! Very annoying and worrying. The new cardiologist said I shouldn’t have been doing arm exercises, as that pulls the skin there and makes it hard to heal.... no arm exercises though? That would’ve been crazy!... Well, he also had a nurse pull him out of my appointment after a mere two or three minutes, ostensibly to help out in the ER, but I THINK because he just wanted to leave early, as there were no other patients at the end of the day. It was a bit too sketchy. So I’ve about given up on finding a good one. I mean, what I’ve seen and heard from doctors would really be funny if the episodes weren’t true and happening to me when I really need a competent person’s help.

Running up stairs?! I’m so jealous. Good for you!! : )

 

[Chuck C]

The new cardiologist said I shouldn’t have been doing arm exercises, as that pulls the skin there and makes it hard to heal.... no arm exercises though?

Sorry to hear that your wound remains an issue in being stubborn about closing. My arm exercises don't seem to pull on my suture, but everyone is different in terms of how tight their skin is and other variables.

This would be an issue that I would really want to run by my surgical team. I believe you've shared that Cleveland Clinic won't talk to you any more and told you to see a local doctor. I know that Lars Svensson does not do telemedicine, but what about trying to set up a virtual appointment with a nurse practitioner on his team. The top clinics, at least in my experience, charge the insurance about $ 500 for these consults, so I would think that Cleveland Clinic, who seem to be very motivated by the dollar, would be eager to monetize such consultations. If not a nurse practitioner from the team, what about a video consult with one of their cardiologists who works closely with the surgeons? If surgical glue can be used to close a wound, I would think that they could use similar glue to close a small opening such as yours, but you would, of course, need to travel for that.

 

[MdaPA]

This would be an issue that I would really want to run by my surgical team. I believe you've shared that Cleveland Clinic won't talk to you any more and told you to see a local doctor. I know that Lars Svensson does not do telemedicine, but what about trying to set up a virtual appointment with a nurse practitioner on his team. The top clinics, at least in my experience, charge the insurance about $ 500 for these consults, so I would think that Cleveland Clinic, who seem to be very motivated by the dollar, would be eager to monetize such consultations. If not a nurse practitioner from the team, what about a video consult with one of their cardiologists who works closely with the surgeons?

Amy,
I agree with Chuck. Check your discharge papers from CC and call the nurse hot-line number. It might just be a simple email to one of the nurses with a picture that will determine if it's something that requires any action.

I also just posted a reply to your related question in another thread.
Incision on chest not healed completely.

 

[Amy]

You guys are nice, but you don’t know what hell it’s been trying to get help with anyone on that ‘nurse-line’ - they refuse to look at photos, they’re mean, every time you try to talk to them, it’s a fight, & I end up actually wishing I hadn’t called.

 

[MdaPA]

you don’t know what hell it’s been trying to get help with anyone on that ‘nurse-line’ - they refuse to look at photos, they’re mean, every time you try to talk to them, it’s a fight, & I end up actually wishing I hadn’t called.

hum....perhaps it's too far out from your surgery and they want/expect you to have it checked out by your local doctor.

As I think I read you were having issues with you local doctor(s), if you think it's really an issue then go to a Medic/Emergency Clinic, or even the ER. You don't want to risk having an infection if you think it could be infected.

Also, check your health insurance as they may have a nurse hot-line as well. Many insurers offer this service to reduce costs so people are not running to ER when it's something minor or nothing to worry about (I know certain CIGNA and AETNA plans have this service).

 

[Chuck C]

You guys are nice, but you don’t know what hell it’s been trying to get help with anyone on that ‘nurse-line’ - they refuse to look at photos, they’re mean, every time you try to talk to them, it’s a fight, & I end up actually wishing I hadn’t called.

It sounds like locally the pool of competent physicians may be very shallow. If Cleveland Clinic will not talk to you, I would not give up on locating a competent cardiologist who is willing to do a video consult with you, even if not local. In the past 14 months the country has shifted towards video medicine and you should be able to get a competent consult from one of the major clinics in the country. If you want, I can email you a few cardiologists and surgeons from UCLA, Scripps and Cedar Sinai that I have found to be very competent. I would think that one of them would give you a consult by video. Does your insurance allow you to self refer, or do you need to get referral first to consult with a surgeon or cardiologist?

 

[tezza]

You guys are nice, but you don’t know what hell it’s been trying to get help with anyone on that ‘nurse-line’ - they refuse to look at photos, they’re mean, every time you try to talk to them, it’s a fight, & I end up actually wishing I hadn’t called.

wow Amy, so sorry to hear that you having such a hard time getting some decent aftercare and also that your recovery doesn't seem to be as fast as you would like. Makes me appreciate my health care team here in Australia much more. Our systems seem quite different. I would keep persisting, even though it is so frustrating, I'm worried for you about infection in the open wound. I would second the advice of maybe even a trip to the ER just to get it checked and advice on how to care for it to avoid infection. Good luck with it, thinking of you x

 

[Chuck C]

Update- 9 1/2 weeks post surgery- Back on top of the mountain!

I've been feeling about 100% back to normal for several weeks now.

A week ago I messaged my cardiologist and asked if it would be ok if I went off of Metoprolol, if I agreed to closely monitor my blood pressure and get back to him. He agreed. My BP numbers, while not as good as pre-surgery, have been good enough for me to stay off of it. I'm usually about 125/75. Very glad to be off all of the surgery related meds! My pulse is still high, at rest its about 78 to 88, but my cardiologist says that this is normal post surgery and will come down in time. I also did some research on VR and found that over the years almost everyone shares that their post surgery pulse was elevated, so I am not concerned about it and expect it to normalize in time.

Back to the top of the mountain.

As I have shared earlier in the thread, pre-surgery I was briskly walking up a mountain 5 days a week. It is a challenge with a 1,200 foot elevation gain and a very steep 14.2% grade. Well, today was my first day hiking back to the top of the mountain! I felt great during and after the climb. I purposely held back and took it slower than normal, making sure to keep my pulse under 140, but felt like I could have charged up it if I wanted to. I'll wait for clearance by cardio before I attempt that- looking forward to trying to beat my own PR soon!

This thread was started with a question seeking whether I should get surgery or wait for symptoms, having crossed the line into severe per my February echo. Thanks to all who gave input. I'm very glad that I decided to get surgery immediately and not wait for symptoms. I suspect that this has played a role in my speedy recovery. And, as I've shared previously, after opening me up, Dr. Shemin indicated that my valve was actually beyond severe- it was critical. So, this is another reason that I'm glad that I did not wait, as, per Dr. Shemin's words, I was a ticking time bomb and I might not be here had I waited.

Back on top of the mountain!

 

[pellicle]

Back on top of the mountain

good to hear!!

 

[Amy]

Dang! 9 1/2 weeks post op and climbing a mountain? I’m gonna totally use you as inspiration and motivation to try and push myself to exercise more, starting the moment this dang incision closes up. Wow!

Metoprolol also is prescribed for arrhythmias/supraventricular tachycardia, which is why I’m still taking it.. but I guess you don’t have any of that? Awesome. : )