Update:

It’s been a few weeks since we last updated but things have been going pretty well for Frankie. 

After the last Cardiac Cath Biopsy, Frankie spend three days in the hospital getting heavy doses of IV steroids for the rejection. Wednesday we had another Cardiac Cath Biopsy and I’m happy to report that the steroids WORKED!   His biopsy was classified as a 1R; which means there was barely anything.  In most transplant clinics they don’t treat for 1R.  It’s most likely the rejection is still being treated from the previous episode.  

At our last office visit, we did learn some interesting news regarding some additional pathology reports from Frankie’s old heart. The reports indicate that Frankie has ARVD.  “Arrhythmogenic right ventricular dysphasia/cardiomyopathy is a rare familial disorder that may cause ventricular tachycardia and sudden cardiac death in young, healthy individuals.”  ARVD is usually caused by a genetic mutation, however, it can affect individuals with no family history. Since Frankie was identified as having ARVD it was recommended that all first and second degree family members (parents, siblings, children, uncles, aunts, nieces and nephews get an EKG and Echo.  

This new diagnosis has everyone puzzled. ARVD usually affects the right ventricle; whereas Frankie’s left ventricle was originally the issue before they both failed.  We still have a lot of unanswered questions at this point.  My main question would be “Does Frankie still have Giant Cell Myocarditis?”  This would be a blessing if he doesn’t since Giant Cell Myocarditis can potentially affect his new heart. In the meantime, we will take the precautionary measures and start some genetic testing and discuss the Giant Cell Myocarditis with our cardiologist.  

Since getting out of the hospital, Frankie completed his evaluation at Ranken Jordan and had his first outpatient physical therapy session.  He will go twice a week for the next couple of months. Right now they are keeping his heart rate under 140 to keep as much stress off his heart. Overtime, he will be able to increase this and get back in the gym lifting weights.  He also received the green light to get back on the ice and do a little bit of light skating.  To say he is thrilled is an understatement. Although, he’s been cleared to do some light skating, playing his senior year will still be a far stretch, but in the meantime, he cannot wait to join his teammates at the next summer skate.  

Frankie’s medications are still a balancing act. We continue to go down to Cardinal Glennon once or twice a week for labs, EKGs, Echos and clinical visits.  We love these visits and it gives us the opportunity to see our Cardinal Glennon Family!  

Cardinal Glennon is also hosting the SunRun on Sunday, October 16th.  We have created a Frankie Strong Team if anyone would love to join us or donate to his team.  Since physical therapy is still a challenge, we opted with the 1 mile walk instead of the 5K. For more information, you can visit Cardinal Glennon’s Facebook page and read the article referencing Frankie and St. Louis Blues radio analyst Joey Vitale.  Or you can go directly to https://sunraise.glennon.org/event/2022-sun-run/e389769  

Thank you all for your continued support and prayers.  ❤️🙏