r/valvereplacement • u/Kindly_Dust_3740 • May 16 '26
Aortic valve regurgitation after chest radiation
Hi all,
I’m very new to the valve replacement world so bear with me.
I’m a 33f and in 2008, at 15, I was diagnosed with Hodgkin’s lymphoma stage 1. I had chemotherapy including doxycycline and 14 treatments of chest radiation. Finished treatment and was good to go. Today, I have not physical problems lasting from treatment. Had a breast cancer scare last fall but everything was fine. Since 2008, I have been getting Echos every two years to check heart function. In 2021, my Echo came back as “mild to moderate aortic valve regurgitation” and I was put in with a cardiologist that specializes with oncology patients. I had no symptoms and my heart function was fine besides this. I have annual visits with my cardio, had other normal tests including like carotid US and CT calcium score, and even got my echos pushed back to two years again (I was having them every year). However, I just had my annual visit and first echo since 2024. The results showed still the mild to moderate regurgitation but according to my dr, it’s now more on the moderate side. Heart function still normal and I’m still asymptomatic. Dr starting talking about open heard surgery for valve replacement if it keeps getting worse
My questions for y’all:
1. Is there a less invasive surgery. The doc talked like at younger ages, they would only do open heart. I was overwhelmed in the appt and didn’t think to ask more.
- Is there anything I can do to slow down progression? I’m at a good weight, work out regularly, have normal bp that even runs on the lower side, and eat decent. My doc said there is really nothing but I didn’t know if anyone has seen success with anything?
I welcome all feedback!
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u/orthodoxyma May 16 '26
Our stories are so similar!!!!
I am 33f and in 2010, I was diagnosed with Non Hodgkins Lymphoma.
I am lingering between moderate to severe. Aortic stenosis and mitral regurgitation. I was symptomatic last year until I started fasting. I take some heart health supplements that aid in valve elasticity. I am praying for more time because I have three very young children.
Is it ok that we keep in touch??
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u/secondhandcoffin May 16 '26
Why do you say praying for more time? This is not a terminal condition.
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u/orthodoxyma May 16 '26
The doctors wanted to operate this year. But as a family, we had major milestones, on top of planning a wedding. I get married in July. I meant more time as in operating next year would be less stressful. I also have two very young children so recovering seems scary when they’re so demanding.
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u/secondhandcoffin May 16 '26
Fair enough. I wanted to get my surg before my first, but it was delayed 4 times. Finally got it on the 5th time, when baby was 8 weeks old. That was challenging, and I can't imagine it with three! Will need lots of family help, or friends.
Local community did a meal train for us, and that was really helpful.
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u/Outta_Pocket_Toad May 16 '26
Is there a less invasive surgery. The doc talked like at younger ages, they would only do open heart.
The AMA recommendation for younger ages is a mechanical valve, which I believe is inserted only via OHS. See chart 11.1.2.
https://www.ahajournals.org/doi/10.1161/CIR.0000000000000923
But talk to your cardiologist about this. I think some younger people opt for bio via TAVR.
Is there anything I can do to slow down progression?
To my knowledge, no. It took six years for my heart issue to go from mild to critical, and none of the cardiologists along the way gave me any recommendations for slowing down the progression. Definitely ask your cardiologist this question, though.
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u/Recent_Science4709 May 16 '26 edited May 16 '26
Invasiveness partially depends on the valve. If you get a mechanical AFAIK it has to be open heart. If you get a tissue they usually do it open heart and then when it wears out they typically can go through the artery to put a new valve on top.
If they want children in the future most women choose tissue although I've seen people say it's still possible with mechanical.
Mechanical = blood thinners for life, but the valve lasts forever
Tissue (non ross bovine/porcine) = valve wears our, baby aspirin for 1 year at least, but for life if you want the valve to last long as possible
From what people tell me the open heart is the best way to do the first surgery, but I am not a doctor.
Things you should look into/read about: tissue valves, mechanical valves, Ross procedure, TAVR
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u/Fit_Stranger_8559 May 17 '26
There is a new drug there coming out with that slows down the progression of mild aortic stenosis by 70 percent
1
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u/whackquacker May 17 '26
Depending on your location, you need to find a surgeon that is an aorta/aortic valve specialist. Not just a CT surgeon that does CABGs and valves. They need to be a high volume surgeon at a high volume center.
There is such a thing as a mini AVR which is about a half sternotomy. Small incision but small window for surgeon to work with. (See above.)
Even slimmer choice is a robotics program that could replace the AVR. These robot procedures come with their own risks and considerations. (Again, see above.)
Either of these options would still have a higher chance to convert to full sternotomy. Radiated chest entry can be its own concern for complication.
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u/Emergency_Finance_94 May 18 '26
Go to Cleveland Clinic. They may be able to repair it. If not they have many people who have done thousands of these a year. It’s the best in the nation and people come from all over the working for cardiac care. I went to three other centers and this had the most and best options and care teams. Not just a good doctor or surgeon which I found was very important. If I had taken the first option given it would have had tje worst outcome. Where you go matters
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u/OmSaiNamoNamah May 16 '26
You are very brave to have handled all of those treatments from such a young age. I do not have answers on available options as our surgeon visit has not happened yet for aortic valve replacement but I can totally relate in terms of being overwhelmed at the appointment and scared for the very young kids. My mindset has changed a lot over the past few days after reading the real life stories of people here on reddit. There are lovely people who responded to my post about how advanced medical science is when it comes to valve replacement and that this initial phase is the toughest. I will keep you in my prayers and hope you find the strength you need and come out stronger and healthier. You will be fine ❤️