Daniel's Journal

Ran my first ultramarathon, 20 months after my Ross Procedure from Dr. Christopher Burke at University of Washington.  I really appreciate the excellent outcome from Dr. Burke and the UW Heart Institute Team.

One year ago today I received the Ross Procedure from Dr. Christopher Burke at the University of Washington Heart Institute to treat my severe aortic stenosis.  I am so grateful for all the support I received from family, friends, co-workers, and fellow heart warriors on this forum.  Thank you Dr. Burke for fixing my heart and enabling me to return to my active life style.  Walking was my immediate post-surgery activity but I was able to return to running through cardiac rehab last fall and resume trail and track running in December.  I've run 870 miles and walked 370 miles since my surgery date.  Top pictures are from a group track workout this evening and from my last check-in with Dr. Burke in February 2023 (CT scan and echo showed excellent results).  Bottom pictures from the hospital stay including just hours post-surgery and then a few days later when a very kind nurse let me go outside.  Best wishes to all of you!

Returned to the University of Washington Heart Institute this week for a 7-month post-Ross Procedure check up.  Echocardiogram, then a CT Scan with contrast, then a meeting with my Ross surgeon Dr. Christopher Burke (who had received and studied the Echo and CT results).  I've been feeling great and I've resumed running 100 miles/month and assumed everything was OK but it was reassuring to have the Echo and CT confirm that all is good.  Dr. Burke wants to see me annually for the rest of my life - I'm so appreciative that he fixed my severe aortic stenosis and is committed to my long-term care.

I received a 4 month post surgery follow-up echocardiogram today and was happy to see all of the normal findings.  So thankful to have my severe aortic stenosis fixed through the Ross Procedure!

It’s been a while since my last journal entry so I’m sharing a new update.
It is common for heart-valve surgery patients to have A-Fib problems and this was the true for me. Some people can feel A-Fib episodes - I cannot - but I knew when I was having an episode because the heart rate display on my Garmin fitness watch would start going crazy (Garmin devices can't yet detect A-Fib so irregular beats translate to a display of an elevated heart rate). I verified my Garmin detected A-Fib episodes using the Kardia Mobile device and sent the Kardia Mobile reports to the Univ of Washington (UW) Heart Institute.  UW had me wear a 7-day continuous heartrate monitor from 7/30 to 8/6, which showed that my heart was spending over 4% of the time in A-fib. My worst episode occurred on 8/11 and lasted 5-hours and was followed by a 2-hour episode on 8/12. The severity of my A-Fib problem raised my stroke risk and doctors put me on a blood-thinner (Eliquis) in addition to two heart rhythm drugs (Amiodarone and Metoprolol) and blood pressure medicine (Lisinopril).
Fortunately, as predicted, the A-Fib issues subsided - my last documented episode was the 2-hour one on 8/12. On September 6th, I started Cardiac Rehab visits at the Saint Joseph PeaceHealth hospital in Bellingham.  The hour-long sessions include EKG monitoring while running on a treadmill. The EKG data while exercising showed no heart rhythm issues and this gave me a green light to start shifting from walking as my primary form of exercise to running.  The following chart shows my transition from hiking/walking to running.  It has been wonderful to return to trail running and I've rejoined one of my weekly group run events here in Bellingham.
UW had me wear the 7-day continuous heart monitor device again from 10/19-10/26 and no A-Fib events were recorded.  This led to the decision to start phasing out my heart medications.  I discontinued Amiodarone on 10/24 and Eliquis on 10/31.  I'm scheduled to discontinue Metoprolol (a beta blocker) on December 5th.
The UW is still doing some follow-up testing (I'll return to Seattle in February for a CT scan and to meet with my surgeon) but I'm also seeing a cardiologist more frequently here at the PeaceHealth Hospital in Bellingham.
Thanksgiving this year has me filled with gratitude for the excellent medical care I've received in diagnosing my serious heart-valve problem, the 6-hour open heart surgery procedure to fix my heart, and the diligent monitoring and treatment I've received over the past several months.  I'm also very grateful for all of the love and support I've received from family, friends, and co-workers throughout this whole experience and from so many of the thoughtful heart valve surgery patients on this wonderful forum.

Sharing another one of the Kardia report graphs - this one showing BPM over the 30-second data capture session. Like my last post, showing both Normal Sinus Rhythm as well as A-fib.  The report from each 30-second Kardia data capture fills 7-pages, which I can send to my cardiology team as a pdf.

It is wonderful to be home! I'm using my fitness HR tracking equipment to monitor HR during my walks but I'm also gathering some resting HR data. Sharing a graph of a 1-hour recording while sitting comfortably in a chair doing no activity. While in the hospital, my A-fib episodes, which I cannot feel, were always associated with an increased HR so this hour-long graph likely shows normal sinus rhythm for the first half-hour but then A-fib activity during the second half, including some peaks that cross the "call the clinic" threshold. I'm hopeful that the days & weeks ahead will show data more like the first half-hour portion of the graph vs. the second half-hour portion.

Adam - this video interview was a life saver for me this morning, after several days battling post surgery A-Fib issues. Thank You! https://youtu.be/ydZBp4B8KOY

I had my Ross Procedure on 7/19. The surgery was deemed successful. Unfortunately, I've developed A-fib complications that are proving difficult to address using chemical cardioversion techniques. A couple of approaches have put me back into normal sinus mode pattern only to have it revert back to A-Fib, the last one after a 26 hour period of normal HR  We discussed and decided on a treatment plan. I will rely on medications, including Metoprolol and Amiodarone, and probably others, to manage my A-fib condition for the weeks and months ahead with the hope that the A-fib problem gets better over time as the heart recovers from my surgery. Hopefully, the amount of medication needed over time will decrease. Electrical cardioversion it's not a good A-fib treatment option for Ross patients because the nature of the Ross procedure introduces a much higher risk of blood clotting and stroke than in typical aortic valve surgeries. My A-fib condition is a less than ideal complication of the surgery I had this week but that's what happened and I will move ahead  and treat the problem with the best practices being presented to me. I will have my second chest drainage tube removed in the next few hours.  Then I need to wait 24 hours before I can shower and be discharged. So my discharge might happen tomorrow or on Monday. Everyone is hoping that I don't fall back into A-fib during any portion of the remainder of my stay.

My daughter got me out on a hike to a beautiful lake in the Cascade Mountains (good pre-surgery distraction!).  Can't wait to get on the other side of my surgery!

Photo from running in the Boston Marathon (2014). Can't wait until I can start running again after my Ross Procedure on July 18th. I haven't run since February 28th on advice of cardiologists to keep my heart rate < 140 bpm. This is my longest break from running in 20 years. I've been walking 3-5 miles a day wearing and monitoring my HR through a chest strap heart monitor connected to my watch.

I've been running for 5 years with a fitness watch that includes heart rate data for 1,000 runs.  This graph shows the first set of 500 runs showing slower pace but lower HR.