1. < Heart & Blood Health

Aortic Valve Replacement with TAVR: What is it like?

Posted by karen1945 @karen1945, May 17, 2021

I am 75 years old with severe aortic stenosis. My doctor has recommended a valve replacement with the TAVR procedure. I had a heart catheterization two weeks ago that precipitated a “brain attack” that was terrifying. I spent that night on the neurology floor, and was released the next afternoon after completely recovering from the stroke. Now I am terrified of having them going into my arteries and heart again, for fear of another stroke that could leave me permanently incapacitated, or even kill me. I’m scheduled to have a CT cardiac angiogram exam to see if the TAVR approach is even possible. I don’t know whether to take my chances with the stenosis and let nature take its course, or risk the procedure. Before the stroke I was okay with it, but now it seems that I could be cutting my life short, rather than being able to enjoy what time is left. I cry a lot and pray a lot. I simply have no idea what I should do. My symptoms are mild. I was chalking them up to old age before I was told I had severe stenosis. I’m told the risks of the procedure are small, but if it affects you, it’s 100% 😞

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 19, 2021
In reply to @karen1945 "No. I’ve always had fairly low blood pressure, but lately it’s been erratic. Perhaps due to..." + (show)
@karen1945

No. I’ve always had fairly low blood pressure, but lately it’s been erratic. Perhaps due to the stress I’m feeling over this. I put on Kevin Kern music and it goes down.

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Music certainly does heal, Karen!

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | May 19, 2021
In reply to @karen1945 "My main symptom is fatigue. I run out of steam much earlier in the day than..." + (show)
@karen1945

My main symptom is fatigue. I run out of steam much earlier in the day than I used to, and I am a little short of breath after climbing a flight of stairs. I thought that was just a sign of getting old. Nothing dramatic. I was shocked to learn I have severe stenosis.

I have prior experience with Mayo Clinic in Jacksonville. I have total confidence in them. When the local cardiologist started talking about surgery, I knew that my best choice would be Mayo.

I will ask the surgeon about delaying surgery until my symptoms worsen, or if it is better to take care of it now.

Best of luck to you, Teresa. These decisions are not easy. We just have to get all the information we can, weigh the odds, and make an informed decision. Putting all our faith and confidence in the hands of other people is difficult!

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@karen1945 Hi! I’m new to the worry about aortic valve replacement. I have known that I have had mild aortic stenosis, but I have not worried about it until now. This year I was told I have moderate aortic stenosis- explains unusual fatigue and shortness of breath. The cardiologist pointed out that it will only get worse and explained that I can have TAVR when it’s time.
I know it’s childish but I’m angry to have another worry! I’d like to start up tennis again now after a pandemic year off. Will have to start slowly.
I also like Mayo in Jacksonville.

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1 reply
karen1945 | @karen1945 | May 19, 2021
In reply to @astaingegerdm "@karen1945 Hi! I’m new to the worry about aortic valve replacement. I have known that I..." + (show)
@astaingegerdm

@karen1945 Hi! I’m new to the worry about aortic valve replacement. I have known that I have had mild aortic stenosis, but I have not worried about it until now. This year I was told I have moderate aortic stenosis- explains unusual fatigue and shortness of breath. The cardiologist pointed out that it will only get worse and explained that I can have TAVR when it’s time.
I know it’s childish but I’m angry to have another worry! I’d like to start up tennis again now after a pandemic year off. Will have to start slowly.
I also like Mayo in Jacksonville.

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I hear you! We were planning to go to Maine this summer. Now those plans are on hold while we work through this new wrinkle in our life. It’s annoying to wake up in the morning, full of ambition, only to poop out by lunchtime! But oh well, at least I wake up! Look on the bright side!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 21, 2021
In reply to @karen1945 "I hear you! We were planning to go to Maine this summer. Now those plans are..." + (show)
@karen1945

I hear you! We were planning to go to Maine this summer. Now those plans are on hold while we work through this new wrinkle in our life. It’s annoying to wake up in the morning, full of ambition, only to poop out by lunchtime! But oh well, at least I wake up! Look on the bright side!

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@astaingegerdm and @karen1945,

Yes, losing energy halfway through the day is one of the worst problems for me as I don't really have shortness of breath and do not have pain. The diastolic dysfunction (stiff heart) is what creates the problem for me. I've given up most aerobic exercise and instead do chair exercises (many are on YouTube).

I hope we can all get our courage up and get our valves fixed when it is needed and feel more energetic and better!

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ann16 | @ann16 | May 22, 2021
In reply to @hopeful33250 "Hello @karen1948 and welcome to Mayo Clinic Connect. I can certainly understand your concern about having..." + (show)
@hopeful33250

Hello @karen1948 and welcome to Mayo Clinic Connect. I can certainly understand your concern about having another procedure that might result in another "brain attack" and/or stroke.

I would encourage you to get a second opinion at a heart care center. Please know that it is always a patient's right to get a second opinion.
There are several of these centers in different parts of the U.S. I see from your profile that you are a resident of Florida. Are you aware that there is a Mayo Clinic facility in Jacksonville, FL?

Here is the link to get appointment information, https://www.mayoclinic.org/appointments?

Did your current cardiologist give you any reason in particular why you had this happened to you after the catheterization?

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I am sorry for your health challenges. My husband had his aortic valve replaced at age 77. The valve was leaking due to age and genetic defect. Surgery was successful but he was on the table for five hours. Immediately after surgery he had noticeable changes in memory. Heart surgery is very stressful on the body. No one ever mentioned that one of the possible side effects of heart surgery is the effect on the brain. Long story short: the Alzheimer's that was attacking his brain (and was unknown to us) kicked into high gear and he is now residing is assisted living. NO easy choices.

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2 replies
karen1945 | @karen1945 | May 22, 2021
In reply to @ann16 "I am sorry for your health challenges. My husband had his aortic valve replaced at age..." + (show)
@ann16

I am sorry for your health challenges. My husband had his aortic valve replaced at age 77. The valve was leaking due to age and genetic defect. Surgery was successful but he was on the table for five hours. Immediately after surgery he had noticeable changes in memory. Heart surgery is very stressful on the body. No one ever mentioned that one of the possible side effects of heart surgery is the effect on the brain. Long story short: the Alzheimer's that was attacking his brain (and was unknown to us) kicked into high gear and he is now residing is assisted living. NO easy choices.

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I’m sorry to hear this! Did he have open-heart surgery or did he have the TAVR procedure? There are always risks to any surgery, and however slight they may be on paper, they aren’t slight when they happen to you. You’re right, the choice is not easy and the risks have to be weighed against the potential benefits. I certainly didn’t expect a stroke to be a by-product of my catheterization. It’s given me pause to think about whether the TAVR is right for me right now, or if I should wait until I have symptoms that are life-changing before I submit to it. My heart goes out to you and your husband.

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1 reply
chud2 | @chud2 | May 22, 2021

I had a mini stoke in Dec 2019 and had a lot of diagnostic imaging done at the local hospital. After some discussion they told me I had "some blockage" in a carotid artery and they would "keep an eye on it" . My primary MD looked at the images and suggested I go to the Mayo in JAX (I had been there before for something unrelated) for further diagnosis. I did so and a whole batch of new tests were done and the diagnosis was "significant blockage in the right internal carotid" and it was suggested I have a stent put in immediately which was done by Dr. Tawk at the Mayo. He said after the surgery I had over 90% blockage. In late 2020 I was feeling tired and enervated much of the time. Again my primary suggested I see a cardiologist when I went for my stent follow up. They did the testing (angiogram, etc) and said I needed a new aortic valve and suggested TAVR as opposed to open heart procedure. I had the TAVR procedure on Dec 2 and it seemed to go well. I was released on Dec 3 and that evening in the hotel I felt very tired and week and was readmitted to the emergency room at the Mayo that evening. The next day I experienced a seizure and my heart "blocked" for about 30 seconds - basically it stopped. The staff decided I needed a pacemaker and put in a temporary one that evening, Dec 4. The next day Dr. McLeod put in a permanent pacemaker and I was released Dec 6. I have not had a problem since and feel great. I owe my life to the doctors and staff at the Mayo and feel I got the best care available anywhere. All this may seem convoluted but I hate to think of the results if I had not gone to the Mayo. They are the absolute best. The TAVR procedure is quite routine now and certainly better than the alternative. BTW I am 84 years old and in generally good health for my age. I think you are in the best possible place. Charles

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2 replies
karen1945 | @karen1945 | May 22, 2021
In reply to @chud2 "I had a mini stoke in Dec 2019 and had a lot of diagnostic imaging done..." + (show)
@chud2

I had a mini stoke in Dec 2019 and had a lot of diagnostic imaging done at the local hospital. After some discussion they told me I had "some blockage" in a carotid artery and they would "keep an eye on it" . My primary MD looked at the images and suggested I go to the Mayo in JAX (I had been there before for something unrelated) for further diagnosis. I did so and a whole batch of new tests were done and the diagnosis was "significant blockage in the right internal carotid" and it was suggested I have a stent put in immediately which was done by Dr. Tawk at the Mayo. He said after the surgery I had over 90% blockage. In late 2020 I was feeling tired and enervated much of the time. Again my primary suggested I see a cardiologist when I went for my stent follow up. They did the testing (angiogram, etc) and said I needed a new aortic valve and suggested TAVR as opposed to open heart procedure. I had the TAVR procedure on Dec 2 and it seemed to go well. I was released on Dec 3 and that evening in the hotel I felt very tired and week and was readmitted to the emergency room at the Mayo that evening. The next day I experienced a seizure and my heart "blocked" for about 30 seconds - basically it stopped. The staff decided I needed a pacemaker and put in a temporary one that evening, Dec 4. The next day Dr. McLeod put in a permanent pacemaker and I was released Dec 6. I have not had a problem since and feel great. I owe my life to the doctors and staff at the Mayo and feel I got the best care available anywhere. All this may seem convoluted but I hate to think of the results if I had not gone to the Mayo. They are the absolute best. The TAVR procedure is quite routine now and certainly better than the alternative. BTW I am 84 years old and in generally good health for my age. I think you are in the best possible place. Charles

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Thank you so much for that, Charles! From what you said, it sounds like staying in a nearby hotel for a night after being released is a good idea. I know from previous major surgery at Mayo in Jacksonville that they are the absolute best place for me to be for this surgery. I had a liver transplant there in 2018. I hope that after my angiogram and consult with the surgeon that I can have more confidence in this procedure. Hearing positive stories like yours is very helpful! Thank you again. Karen

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 22, 2021

Hi @karen1945

I see that you also had a liver transplant three years ago. Congratulations on your new liver and your new life!

While I know that your main interest right now is regarding your aortic valve treatment, have you had an opportunity to share in Connect's transplant discussion groups? The mentor of that group, Rosemary (@rosemarya), is also a recipient of a liver and kidney at Mayo Clinic in Minnesota. I'm sure she would love to have you post about your experience sometime. Here is the link to those discussions, https://connect.mayoclinic.org/group/transplants/,

I'm glad to see that you are getting lots of responses to your posts from other members on Connect regarding the TAVR procedure. I hope you are beginning to become more comfortable with the idea of this procedure. It seems to me like you would be in surgery for a shorter time and probably the recovery time is much shorter because they are not opening up your chest.

How are you feeling about it now?

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 22, 2021
In reply to @ann16 "I am sorry for your health challenges. My husband had his aortic valve replaced at age..." + (show)
@ann16

I am sorry for your health challenges. My husband had his aortic valve replaced at age 77. The valve was leaking due to age and genetic defect. Surgery was successful but he was on the table for five hours. Immediately after surgery he had noticeable changes in memory. Heart surgery is very stressful on the body. No one ever mentioned that one of the possible side effects of heart surgery is the effect on the brain. Long story short: the Alzheimer's that was attacking his brain (and was unknown to us) kicked into high gear and he is now residing is assisted living. NO easy choices.

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Hello @ann16 and welcome to Mayo Clinic Connect. Thank you for sharing your husband's experience. I'm thinking that since his surgery was five hours long that he must have had the open-heart surgery. How unfortunate that his brain was affected by this medical procedure. You are right when you say that there are "no easy choices."

Was your husband's surgery recent?

We have a caregivers' discussion group that you might find helpful. Here is a link to those discussions, https://connect.mayoclinic.org/group/caregivers/.

How are you doing with all of these changes in your life? Do you have support for yourself from family and friends?

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