Katie's Profile

Hello fellow heart-valve-surgery-friends! My name is Katie, I'm 48, and live in the magnificent Pacific Northwest between the Pacific Ocean and Cascade Mountains. Despite being on Coumadin since the age of 18, and with the help of Lovenox, I have 3 healthy grown kids. I used to be an avid hiker and kayaker, but have slowed down in the past 2 years. Maybe due to my heart condition, maybe due to poor life choices. I haven't decided yet. I was born with a bicuspid aortic valve. A nurse in the delivery room heard a murmur and the rest is history. I was followed by a cardiologist at Oregon Health Sciences University (Dr. Sunderman). She followed me my entire childhood and decided my heart was finally needing surgery when I was 15. I was so young, and a female, so it was decided that I would have a Ross Procedure. In theory this would buy me enough time to grow up and possibly have children before either valves would need replaced. I had the Ross Procedure done at UCLA in '94. Just a couple days before the big Northridge Earthquake hit. Fun Fact- I felt a before shock while we were checking in. I remember panicking and asking the nurse helping me if he felt it and asked if there had been any signs of an earthquake. He said no and dismissed it. I was certain there would be an earthquake and told my dad he could not stay in my room because the TV up on the wall would fall on him. I vividly remember waking up to that earthquake. The TV did not fall, but my vase of Birds of Paradise did. They survived. My roommate slept through the entire thing. I was one of the lucky 1% of patients who had valve failure in a matter of 2 years. My own pulmonic tissue valve in the aortic position had calcified. The cadaver valve was fine. I had my aortic valve replaced with a St. Jude mechanical valve in '96, right after I graduated from high school. I was able to have 3 children, naturally. I gave myself Lovenox Injections 2-3 times a day to avoid a high peek or spike. My belly wasn't cute and adorable, it was black and blue, but it successfully held the most precious beings. All 3 of my children had echo/ultrasounds in utero, and all 3 were very healthy babies. My last was 9lbs12oz and induced 2 weeks early!! When I was 30, the cadaver valve in the pulmonic position had finally succumbed to age and needed replaced. I had what was thought to be my last heart surgery in '08, replacing my pulmonic valve with another St. Jude mechanical valve. I have the classic valve tick. I call it my party trick and sometimes freak people out if were sitting close and it's very quiet- "what is that ticking sound? Is there a clock somewhere?" Or if I touch their arm and the sound transfers. You have to have fun with these things. However, it was very annoying when I paid good money to lay in a sensory deprivation float pod..... tick, tick, tick, tick...There was no relaxation or meditation happening in there. Since my aortic valve was replaced so long ago it is technically too small for me now, and I've had a developing, but stable aortic root aneurysm for years. I started getting low grade fevers and really awful chills in the evening, and night sweats 2 months ago. But I would wake up feeling like a million bucks, go to work, then hit that same wall around 4:30-6:00. It took some time to decide to see a dr. They drew blood cultures in the ER. A week later I was in the hospital, diagnosed with a bacterial blood infection- CutiBacterium Avidum. No one knows how I got it. It's a bacteria that resides on our skin but doesn't typically enter the bloodstream. I do remember having a bright glossy red rash under my breasts that caused an old surgery wound to open up. I thought it was a bad heat rash and thought nothing else of it. It's a slow growing, slow spreading bacteria that took a week to begin growing in the culture and another day or 2 to grow enough to know what it was. They call it a "smoldering" infection. The little bugger made itself at home on my pulmonic valve and covered itself with a cozy biofilm that makes it hard to cure with the IV antibiotics I've been on for the last 6 weeks. I've had 2 echos, 1 CT, 1 PET/CT, and 1 Gated CT over the last 6 weeks. There has been debate back and forth over the findings- "is it bacterial vegetation or is it a shadow or is it....?" My Infectious Disease Dr. says the only way to "cure" it is to remove the infected valve. I see him for a follow up July 8th. I go in for another echo July 9th and meet with my cardiologist immediately following. I am praying for answers and a plan. I'm sure many of you can relate to this limbo stage that comes with any serious heart condition. The waiting. Hearing multiple conflicting ideas from different doctors. And if you're anything like me- the task master, the planner, the cut-the-fluff, kind of person, you're ready to stop dilly dallying and just move forward. I'm learning patience through this. I'm learning to trust the process and have faith, while also strongly advocating for myself and my needs. Life with this condition is the wildest ride that no one else can possibly understand. I've always felt very alone. Nothing is ever "normal". Having to go to the ER at the slightest hint of a heart attack, and then feeling like an idiot because, per usual, it's nothing. I don't talk about it much with my friends, my family, or my children. It isn't relatable. Thank you for reading my rambling. I'm glad I stumbled upon this group. I've watched some of your YouTube videos and can I just say THANK YOU! Those made me feel like I belong somewhere and I am not the only person going through something like this.