So my background is congenital heart disease I was born with a Bicuspid aortic heart valve, VSD and needed a Coarctation of the aorta repair to save my life at 11 days old. I'm 32 years old now. Living in the UK.
I became unwell this year around May time before finally being diagnosed with endocarditis in August, I spent 7 weeks in hospital getting IV antibiotics for this. The final scans of the heart at the end of September seemed okay allowing me to be discharged with close follow up appointments with my doctor. However at the end of October part of the dead vegetation came off the heart valve causing a small hole in the Aortic valve this caused me to have a TIA (lost sight in left eye for a few minutes) I went straight to hospital. After a few days of tests it was decided the best treatment for me would be a mechanical heart valve and they will close the VSD while they're at it.
I found out today the surgery will be next Thursday so it's starting to feel very real now and scary. I will be honest and say this is the most scared I have ever been in my life and still can't believe this is happening. I'm trying to be positive but I'm struggling with it all.
I have extreme anxiety about the surgery itself, as if it won't successful, dying and other complications that may disable me. I know these fears all come from the unknown and overthinking but its hard to relax. I also fear my life with the valve will be one that will hold me back from traveling, being active, enjoy food and having a long happy life. I start to worry about needing a new valve down the line too.
I have been reading this forum for the past few days and its been very helpful in easing some of my fears but now it's getting real with the date my anxiety has gone up. My hands started to shake uncontrollably when my doctor told me today.
I just hope I can have a normal healthy life after this. I guess I hope to hear everyone's experiences and maybe it can help me relax more and embrace this next chapter in life.
Hi there,
I hope your OHS went well! You can live a full and active life once you are recovered!
Grandma here is almost 17 years post-op from my bicuspid aortic valve (BAV) surgery with stenosis (narrowing of the valve). I had my chest opened up 3 separate times in 4 days (first St. Jude valve clotted, then they put in a Carbo-Medics, then excessive bleeding). 6 days after my second OHS, I had a pacemaker placed.
For the last 16 years, I have had a mid-ascending aortic aneurysm caused by my OHS; I may or may not have another OHS for that (depending on if it grows or not). The magic number for surgery is 5.5 cm (about 2") and I’m at 4 cm (about 1.5"). My ribs are messed up from my chest being opened 3 times and I used to wear a compression band on my upper ribs to help my breathing. I discovered wearing a tight bra works the same way as the compression band; it just holds my ribs together (I’ve had tests and they found two ribs closing in on each other when I do a crunch).
I’ve also had a PFO procedure 21 years ago (hole in my heart), Brock procedure (left ventricular, mini heart surgery, 6-8 weeks recovery), an ablation, 5 cardiac catheterizations, 5 chest angiograms, 5 TEEs (trans esophageal echos), 24+ intubations, 30+ chest x-rays, 21+ ECHOs, 17+ EKGs, and CTs.
I stay active and just live my life until the good Lord calls me home. I do a Zoom exercise class with weights twice weekly (I’m up to 50#), play Pickleball once a week, bike, hike, snowshoe, have fun with the grandkids, painted my house in and out several times, finished our basement, do chores… the list is pretty endless. I focus on what I can do, not what I am unable to do.
If you have any questions, please don’t hesitate to ask.
