15 year anniversary of #1!!! Why is it still a big deal?

Firstly, thank you so much to the 5 people who left comments on my last post.  Your words touched me so much that I started crying.  It means so much to me.  And Deneen: one of these days I'll get things together enough to start officially putting all this into a book format, even if only an eBook.

Will refer anyone new to a few previous posts: July 28, 2007 brief explanation of all 3 surgeries.  Oct 16, 2009: 5 yr anniversary, trip to England, climbing Tor.  Oct 15, 2014: 10 year anniversary.  Obviously there are hours of reading should you wish!

Anniversary dates obviously lead to reflection.  With the 15 yr anniversary approaching I started asking myself why this Oct 15th date affects me so much when July 12, the date of the third and last surgery, should be a more important date.

Oct 15th was more than just the first open heart surgery; what the surgeon did that day has and will continue to affect every day of my life until I die.  It is the day which had more impact than any other single day, and that's why it's such a trigger of unhappiness for me.

Surgery #1 was extremely complicated.  When the first repair didn't work the surgeon stopped my heart a second time and changed that repair, and when that didn't work he stopped my heart a third time and basically did the same thing a third time. (This would be the definition of not learning from experience.)  This is why the lung hernia happened (having my chest open for 10 hours during the 3 repairs), and made the mental changes more severe because of being on and off cardiac bypass 3 times, even worse it didn't make me feel any better.  And neither the cardiologist or surgeon believed me that there was still something wrong. 

Other posts explain how I ended up going to Brigham Hospital in Boston, which is a Harvard hospital, for all subsequent surgeries.   When opening my chest for #2 the damage done from repeated surgeries during #1 was so severe that scar tissue made my lungs stick onto my heart, prolonging my time on cardiac bypass to separate them.  Once Dr Cohn got into my heart he found so much scar tissue that he couldn't see enough to know exactly what the problem was, and I was getting unstable, so he did what's called an Alfieri stitch.  My one valve leaflet was so large that it was swinging across and blocking blood from going through the aortic valve.  The Alfieri tied down that big leaflet straight through the middle, so instead of one big opening of the mitral valve there were two smaller openings.  Because I was getting unstable they couldn't fix the lung hernia, so back to Brigham six weeks later for the thoracotomy. Then, after the thoracotomy I just kept going downhill.  In less than a year massive scar tissue developed, narrowing those openings, which was why surgery #3 was only 11 months after #2.  And #3 was when the entire mitral valve was cut out and replaced, which was what lead to the discovery of the small size of the annulus, or opening where the valve sits.  Hence the pediatric size mechanical valve, leading to my current pulmonary hypertension and heart failure.

Why go through all that to explain the significance of Oct 15?  Because all three of the following horrible complicated surgeries (heart #2, thoracotomy, heart #3) were because the surgeon doing #1, when there was no scar tissue and he had a clear view, did not recognize the small annulus and put in a mechanical valve from the beginning.  It would have been one open heart surgery and done.  And while there is no way to absolutely know, I am certain that the horrible stress and from all these surgeries, plus the four years I was critically ill, having to give up being a paramedic and drop down to part-time as a PA lead to the autoimmune diseases. 

Why didn't that first surgeon change from a repair to a replacement?  I've read through all the reports from that surgery, nothing is noted.  The obvious explanation is that he didn't recognize the anomaly, in all fairness Dr Cohn had never seen my physiology despite having done over 10,000 valve surgeries, and it may be as simple as that.

But there are other things that raise the hairs on my neck.  Several years ago I was told that there is a national database of some sort, and heart surgeons register when they will do what.  Apparently if a surgeon schedules a mitral valve repair and it then becomes a replacement there is some sort of 'black mark' put on his surgical record, which makes zero sense.

And here's something I've never written about:  the cardiac surgery PA on Oct 15th was someone I knew, and went to school with.  T & I had gone to Hahnemann together, and had done at least 2 six-week rotations together.  I saw him when at Presbyterian for my cardiac cath, he promised to be in my surgery.  He came to see me in pre-op, waved, told me he was going to scrub and would see me later.  I never saw him again.  It didn't even occur to me, in my brain muddled state, that he hadn't come to see me, despite being in the hospital for 8 days.  The most obvious explanation to me is that things went so horribly wrong during the surgery that he couldn't face me, feared my questions.  I think it's time to at least try to find him and hear what happened.  It's long past any statute of limitations, I just need to know.  (Side note:  I did consult 5 different law firms, my case is too complicated plus unique physiology gives first surgeon an out.)

While my world rattled on February 16th 2004 when I found out about my heart, Oct 15th was when the fall down the long, dark shaft began.  I've found some handholds over the years, and now even have a shelf to stand on, but that shaft is still there, right beyond the edge.

And that, my friends, is why October 15th is such a difficult day for me.

Thanks to my friends Rosemarie & Bill for spending today with me, keeping me distracted and entertained.

Thanks for reading, and please leave a comment, even just a 'hi' to let me know you visited.