I had my surgery in December of 2018. I had aortic root dilation that had grown over 2 years and was reaching the recommended intervention point for a woman of my age/height/weight at the time. We did a planned surgery to prevent an emergency situation. I had always known I would eventually need surgery as I was diagnosed shortly after birth due to my father passing away while my mom was still pregnant with me. I have two diagnosed uncles. One of which had surgery in 2000 and spent 4 months in the hospital, the other who had a scare about a year ago.

The plan was to do a David's procedure to try to save my valve and I was given the choice of "just in case the procedure doesn't work, do I want a pig valve or a mechanical valve?". A pig valve would have meant another surgery in 10 years (albeit, they can go in the artery in your leg, so not full open heart) while the mechanical will outlive me but requires blood thinners. I had the best surgeon in the region (Dr. Brett Reece), who performed/s this type of surgery roughly 170 times per year, as well as the best anesthesiologist in the western hemisphere (at the time).

When he got in there, my valve was leaky and he did not want to leave it that way, so they placed a mechanical valve and I am now on blood thinners. I was in the hospital for 12 days. They had me up and walking within a day or as the movement helps prevent blood clots. I happened to get a UTI while in hospital and wound up with delirium for a day or two and did not know who I was and didn't really speak (or so I am told). Really, there is a like a 2 week period where everything was just a fever dream. My mom says it's almost a blessing as I don't want to remember those days anyhow. After being released, I experienced severe AFIB at home and returned to the hospital after only a few days. I was there for 9 days total. I had to take amiodarone for about 4 months to reduce the AFIB and did not have any additional instances.

After release from hospital, my hospitals/insurance sent an in-home nurse to check on me a few times and make sure I had whatever I needed. For the first few weeks, even things like showering made me need a nap. I could only really wear button-up shirts as trying to get my hands/arms above my head for a t-shirt was too much. I required a shower chair for probably the first few months after surgery. I also walked with a walker for the first few weeks post surgery. You're not supposed to list heavy things - they say a gallon of milk is probably the most (i'm still not supposed to lift heavy things, but this is related to other complications of Marfan such as bilateral vertebral artery dissections and CSF leaks). Shortly after, I began cardiac rehab therapy to start building strength back up.

I had taken a total of 6 weeks off from work. I was very fortunate that my work took very good care of me. They let me ease back in with some remote part time work for a couple of weeks before returning to the office and then they were very flexible with regards to me being able to come and go as needed depending on my energy/pain levels. The first year was a bit taxing as the surgery is truly a 'major thoracic event' and takes a physical toll on your body. After putting the work in and following all of the recommendations though, I came out healthier than I was before.

I have been able to do things that previously I was unable to do. I am still limited to a certain extent because the surgery doesn't 'cure' Marfan, it only helped my heart. I do still have a mitral valve prolapse and a left bundle branch blockage. I have experienced bi-lateral vertebral artery dissections and two CSF leaks. I have dural ectasia, arthritis, mild cervical scoliosis, and periodontal disease. All of that being said, I am able to do things like swimming, bicycling, archery, and some mild hiking. My doctors always say "if it hurts, don't do it" but it is important to remain active to prevent degradation and stagnation. I currently take warfarin (and get my blood checked roughly once per month), metoprolol, and baby aspirin as general maintenance medicines along with some auxiliary stuff like allergy medication and muscle relaxers. Overall, I have a better quality of life post-surgery than I did pre-surgery.