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Jim Moodyposted a journal

19 hours ago

It's been almost a year since our last CT scan to monitor her abdominal aorta. She is still being treated for her autoimmune disease Giant Cell Aortitis. Low ...Read more

It's been almost a year since our last CT scan to monitor her abdominal aorta. She is still being treated for her autoimmune disease Giant Cell Aortitis. Low dose prednisone. We have decided to not try Biologics like Rinvoq as we prefer the devil we know to experimenting with another pharmaceutical with questionable efficacy. We will have the CT scan in Oklahoma City with her new vascular surgeon consult via zoom. Dr Oderich is at Baylor Medical Cardiovascular Center in Houston.

She was diagnosed with anemia this fall after being chronically fatigued short of breath. They believe it is caused by malabsorption due to her blood supply restrictions to her mid gut with her Celiac artery blocked by the EVAR stent placed last year. She has responded to iron supplements. However, my older cousin a retired Internal Medicine physician says we may need to explore Mechanical hemolytic anemia. It's caused by red blood cell shear and destruction by the valves themselves. It's a rare complication of mechanical valves. Yet another reason to reconsider mechanical valves. Debbie has had a difficult time with keeping her INR in range.

Anemia causes inaccurate INR readings as well as interfering with the Warfarin dose, so her INR was extremely low until her anemia improved. Then when having a dental procedure and being given Amoxicillin as a prophylactic her INR shot up to dangerous level of 7.9. So she has had a difficult time scheduling a follow up procedure. The Corticosteroid has played havoc on her teeth.

Dr Kapravinac at Cleveland Clinic thought she needed mechanical valves because she had porcine valves fail at 3 years and again at 5 years. He said her body doesn't appear to like them but in hindsight it could of been the autoimmune condition. Giant Cell Arteritis is a condition they don't fully understand. She has had a rough time with the chronic nature of her health problems and is really exhausted by the constant medical issues it just never seems to end. The doctors locally here just seem as baffled as I am by the inability to stabilize her INR and control her inflammation to keep any further damage to her aorta from causing failure of her aortic stents that would require intervention and the next EVAR procedure.

Hopefully 2026 is a better year.

Peggy Petersonposted a journal

2 days ago

Rose Madura, Pamela Gregory, Grace Mason reacted to this

Putting this ALL behind me now (honest!), but thought it might be beneficial to others if I “shared” one last time.
It’s been a rough few years, ...Read more

Putting this ALL behind me now (honest!), but thought it might be beneficial to others if I “shared” one last time.
It’s been a rough few years, but here I am! 2026 - let’s all make it our best year yet, no matter what our chronological age.
I wrote this initially as a reply on a mitral valve replacement group, but I feel that a comment might help more people, so . . .
Metoprolol made me feel horrible. Verapamil CAUSED my left ventricular heart failure I truly believe (read the small print always). All statins give me horrible leg cramps. Wegovy - not for me thank you.
Please research your meds. I went to three separate cardiac “groups” that put me on so many meds that I did not “need” and I believe made things worse. I was in worsening heart failure as they continued to push more meds. with the “let’s wait & see” approach. What, wait and see how quickly I will die?!
Knowledge is power & self advocacy is KEY.
Get 2nd, 3rd, 4th opinions if it feels right to you. Don’t let them blow you off.
You know your body. You are talking quality of life as well as life itself. Too many seem to push all the pills the pharmaceutical companies can push & profit from their sales.
I had my mitral valve replaced ten months ago. Took a good 6 months or more for my body to adjust to my new heart, but now I feel better than I have in decades.
The valve was severely damaged at age 12 from rheumatic fever. Knew way back when I might need a new valve in my “old age”. I will be 70 in April (yikes!), but now I feel so much younger.
I still have symptoms related to coronary artery disease in arteries they cannot stent. Had 3 stents placed in 2024 including in the “widow maker” artery.
I had cardioversions and an ablation to treat a-fib before the right team realized my a-fib was valve related & replaced the valve.
The teams that did the cardio versions & ablation MISSED the severe coronary artery disease for 3 years. I was so close to having a fatal heart attack.
When they replaced the valve they also clipped my left atrial appendage & did the MAZE procedure to prevent further a-fib.
I have been given a fully refurbished heart & I am so thankful. Beyond words.
I hope this helps others. ❤️❤️❤️

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