My Brief Personal Story

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Ladybug

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I'm Ladybug. I'm a married 73 yr old grandmother of seven, with two sets of twins born in the same year. I was raised by my grandparents in the NC mountains in the 50's and they died of heart trouble. I was a devastated 10 year old that lost my grandmother, and somehow sunk even more when my grandfather died when I was 21. I want to stay around for my grands as long as I have a QOL that's not a burden on my family. I had rheumatic fever as a very young child. I've always had a heart murmur. I've been followed for 12+ years with yearly echo grams. Two years ago this was upped to twice a year, and in June of 2019, I was told that all of my numbers on the echo are over their gradients into the severe column. Severe symptomatic aortic stenosis.
I am a breast cancer survivor (2013), who has left lung complications from radiation. In 1990, as a newly wed, I lost both breast to severe fibrocystic breast diseases that turned into blood poisoning. I was implanted with polyurethane implants one month before the FDA took them off the market. The pathetic care I got in SC for subsequent problems caused me to seek help in Cleveland at Case Western. This included a 14.5 hr flap procedure to rebuild flesh onto my ribs. My husband had frequent flier tickets and we personally bailed out several women that needed help in SC, with whom we were in a class action device suit. All of those friends have died, but I am a survivor. The experience has caused me to become a street smart medical consumer. I am very distrustful of the sincerity and motivation of doctors, the FDA, device manufacturers, and the AMA. So here I am getting TAVR on
9-5-19 at Emory St. Joseph's hospital in Atlanta, GA. I very much wanted to go to the Cleveland Clinic, but it involved two trips and I'm circling a drain and don't have the energy to pack. I have found a good doctor that has done 700 TAVR. About 10 days ago, I thought I'd be getting the Edwards Sapien 3, but the FDA slapped a Class 1 recall on the deployment device. So, after poor communication from the dr office, I'm told I'm getting a Medtronic Core valve due to it's best fit, but ironically after I was led to believe I'd get the Sapien. I fear the new normal that awaits me. I am bracing myself for the worse and hoping for the best. I'm grateful to not be having OHS, but very apprehensive because I have lived through having my life ruined by a device. Bless all of us that are seeking peace and good care with our heart valve situations.
 

Ladybug

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Thanks so much for your good wishes. The doctor HIMSELF called this AM and changed the date to Thur, Sept 19th, 2019. This is so my regular cardiologist can be in the OR to help with using the Sentinel Filter that prevents stroke. Also they are going to use the very newest, just approved by the FDA in May, Medtronic Evolute Pro valve. I felt very calmed and relieved by his call because he said he has carefully figured out the exact size to use, and he explects it to go flawlessly. I felt validated as a patient. Enjoy your good health and youth. Old age is not for sissies! Kind regards.
 

Angie

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