Jill's Guestbook

Hi Jill, I hope you are doing well after your surgery. As I was reading the posts your last name caught my eye. I had a 6th grade student a couple of years ago with the same last name, living in Michigan, whose dad was going through the exact recovery you were describing of your brother. I am thinking this is an example of an extremely small world. Tracy

Hi Jill, We share similar stories. I found out in May 2019 at age 56 that I had a heart murmur which turned out to be a bicuspid aortic valve with severe stenosis. I was preparing for surgery by late November 2019 and was scheduled for a January surgery date. At that time my son and daughter were on waiting lists for echos to check for the same condition. On December 11, just a month before my heart surgery was scheduled my 26 year old son woke up in the early morning hours with a severe headache and blindness in one eye. We rushed him to emergency six blocks from our home and he was incoherent by the time we arrived there. As it turned out he had suffered multiple brain bleeds due to, what we later found out was, infective endocarditis. The neurosurgeon told us things did not look good and he did not expect that my son would survive the surgery. He had been diagnosed with a small blood clot in his calf a few days earlier and was put on Eliquis (blood thinners) for which they do not have a reversal medication. They had no choice but to operate though as he was continuing to bleed in his brain. They told us after the surgery that they had removed a fairly large part of his brain from a fairly important area of the brain (the cerebellum) and that we should be prepared for disabilities if he did survive. He was in an induced coma afterwards for about three days but then they woke him around day four. They learned days later that he had contracted the endocarditis from an abscessed tooth that he had been unaware he had. Long story short while he was there they performed an echo on him after I told them I was scheduled for surgery and they determined that he too had a bicuspid valve. Unfortunately the endocarditis had damaged his bicuspid aorta and he had severe regurgitation. They told us he would need to have an AVR as soon as possible. He was in hospital for about a month then on home IV antibiotics for about six weeks after that. They waited eight months before doing that surgery so that he could recover from the brain surgery. In the meantime I pushed my own AVR back by one month and had it in February 2020 just as covid was hitting. My son's heart surgery followed six months after mine. What a year I tell you, ... then throw a world pandemic into the mix of it all *smh. My son was scheduled for three different types of rehab and just as each one was to start, one after another they all got cancelled due to covid. Amazingly he has done fine, you would never know today that he has gone through all he went through. He did not suffer any kind of brain damage or any disabilities from what he endured, a very different outcome from what the surgeon had told us to expect and that was if he survived the brain surgery. If that is not a miracle I really don't know what is. Today we are both doing well, we both have mechanical heart valves and both tick quite loudly LOL ... I rarely ever hear my own and was probably six weeks out from my surgery before I noticed it the first time. My son had to have his surgery in August and could not have any visitors. We dropped him off at the door to the hospital and picked him up five days later. That was hard not being able to be with him. But the first moment I saw him after picking him up I could not believe how loud his valve ticked. He sounds like a Timex watch. Luckily neither of us are bothered by the sound of our new valves. My daughter eventually got her echo and I am happy to say that she does not have the same condition. My sister and two of my cousins also got checked and my sister's four children are still on waiting lists to get their echos. I pray no more people in our family have this condition. All the best to you for a good surgery outcome. I am sure you will do well. I was surprised at how good I felt after surgery. I honestly think the worst part of it all was the long months of waiting and wondering and worrying before the surgery even happened. All the best. Mary Jewett

Make sure you ask about valve sparing. They will try to spare your valve first before replacing it. That was one reason I was originally sent to Cleveland by a top surgeon in the Columbus area. To try and save my native valve.

I was trying to find out if you can DM here, but figured it doesn't really matter :) Here is my contact info, lets stay in touch and see if we can connect in Cleveland. I just booked our flights we will get in on the 8th. Nancy Sells: 912-220-0963 njsells@me.com