Bill K's Story

Updated: May 7, 2020

I was born with a congenital heart defect (sub-aortic stenosis), I had my aortic valve repaired with OHS when I was four years old. When I was eight I needed the valve repaired once again, so I underwent my second OHS. A few days after that surgery I went into complete heart block which required a pacemaker implant.

When I was 18, I needed a third OHS but the aortic valve wasn’t repairable so they put in a prosthetic valve (St. Jude valve). After that valve was implanted I had three bouts of bacterial endocarditis in about five years which required IV antibiotics for about 12 weeks each time, the endocarditis not only affected the prosthetic valve but also the mitral valve.

After I recovered from the third endocarditis infection in 1992, I was relatively “healthy” for quite some years, though I was diagnosed with CHF, high blood pressure, mitral valve and tricuspid valve regurgitation.

Last August I was diagnosed with bacterial endocarditis once again, though by the time I was diagnosed the infection had already spread throughout my body, aside from my heart, my liver and kidneys also took a hit due to the sepsis. It was determined that I needed a fourth OHS to replace the infected prosthetic valve and repair my tricuspid valve while on high dose IV antibiotics.

I was transferred to the Cleveland Clinic since no surgeon wanted to take my case in the greater Buffalo, NY area. I had that surgery, they replaced the artificial aortic valve with a homograft valve and aortic root (cadaver) and repaired my tricuspid valve with a tricuspid ring. They also replaced and moved my pacemaker and took out several old leads that were left in over the years, in order to try and prevent recurrence of the endocarditis. In mid-September I was discharged home back to Buffalo – thank God for the surgeons and doctors at the Cleveland Clinic!

In the time since discharge it has been a rough road, I’m still not able to return to work as I’ve had several setbacks. I went into atrial fibrillation, have had four cardioversions and a cryoablation to try and fix that. I still need to have another cardiac ablation to try and repair atrial tachycardia that is new as well. With all of this I have also been diagnosed with stage 3 kidney disease so I am now seeing a nephrologist – since the heart and kidneys go hand in hand my doctors are trying to find a way to manage both. They’ve told me neither the heart or kidneys will ever be happy but they need to find the right treatment plan to keep them working together effectively.

That’s my story, as condensed as I could make it – I hope it can help anyone who is going through something similar – everyone has their own story and sometimes it’s good to share and have a strong support system. My family has been my rock through everything, I have a beautiful wife of 27 years and two wonderful, healthy kids (23 and 25 yrs old). Stay safe and keep fighting.

#congenitalheartdefect #subaorticstenosis #OHS #stjudevalve #bacterialendocarditis #fourtimeOHSsurvivor #kidneydisease #familysupport

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