For the four years since we learned of Anthony’s heart failure in 2020, Anthony has been stable on cocktails of heart failure medicines, and he worked very hard to be as normal of a teenage boy as he could be. Anthony’s journey has been marked by strength and perseverance, but now, the fight has intensified. Despite trying to live his life as fully as possible, Anthony’s declining health is forcing him to focus on seeking a heart transplant.
After four years of battling cardiomyopathy and congestive heart failure and enduring multiple hospital stays and treatments, Anthony’s heart has reached a critical point. His diagnosis was upgraded to end stage heart failure on 8/3/2024, and he was hospitalized at Froedtert Medical Center in Milwaukee where he is currently awaiting a heart transplant. Currently, he’s listed as Status 2e for a heart transplant, a position that brings hope but also uncertainty as he waits for the life-saving procedure.
Updates (8)
September 19, 2024
Update on Anthony:
Whew, what a week it has been. Anthony's officially 9 days post transplant!
On Sunday we had some complications and Anthony started having some siezures. The immunosuppressant drugs he has to be on for anti-rejection have been putting some stress on his body, and he developed a condition called PRES. We caught it very early (mostly because mom watches him so closely and notices any changes right away) and they believe it will resolve in time without causing any major issues later on. He had to be monitored by EEG for a couple days, is now followed by Neurologists and has to take a couple anti-siezure medicines for a while but he has been siezure free for days! Thank the heavens. Of everything we have gone through on this journey, the images of him siezing have not left my brain space. That was definitely the hardest of all for this mom to handle.
He has been recovering smoothly since then though, and other than some fatigue and mild hallucinations (the shadow people scale the walls) he hasn't felt too shabby. If anything, he's feeling the best he's ever felt in his life and we know that will continue and get even better as time goes on as his body adjusts to the new heart and all the medicines it takes to keep it beating strong.
And it IS BEATING STRONG!!!!! I had the pleasure of getting to watch his first echocardiogram and his ejection fraction with the new heart is 54%! From less than 10 to 54... just an incredible feeling. He's worked so hard to survive in active heart failure.... to be told his heart is NORMAL, and healthy, and working perfectly... to not be in active heart failure anymore... it's music to our ears. We've spent many days experiencing all the emotions - but mostly pure joy.
Yesterday Anthony walked in the hallway for the first time since transplant and today, we got to get outside for the first time in weeks. It's been a week of "firsts" again, and each day brings more things he can do and accomplish.
He's still struggling with swallowing food and water safely - being intubated 4 times in less than 2 months is very traumatic to the esophagus and pharangeal muscles. He has been working hard with speech therapy and has high hopes to graduate into small amounts of food and water soon. Right now he's limited to one pureed food item a day and just ice chips. He's not a fan of any of it, especially the NG tube, so please keep fingers crossed that he can pass his swallow study either tomorrow or Saturday! This is the last tube left in his body and he's really ready to be free of all the restrictions and tubes.
The word on the floor is we might graduate out of ICU and go back to the step down floor in the next couple days (could be today yet also). This would mean better sleep, more freedoms, and less poking and prodding so he's super excited about this news. Being in ICU for months is very tough on mental health. It will be really good for him if this happens soon.
All in all, we are taking things one day at a time, and are just so darn grateful he's alive and doing well. He's getting stronger every day and the gains are big and noticeable. It's so great to watch him recovering instead of diminishing.
There's no words to express my gratitude towards the hidden hero whose heart now beats in his chest. We will honor them forever.
Thank you for continuing to follow our journey and for all the support. We've still got a long road ahead of us, and it will have its ups and downs, but we're here for it. I'm so glad to have all of you here for it too. Love yas.
September 10, 2024
Update on Anthony:
Anthony is out of surgery, and his new heart is beating!!! There were a couple minor complications during surgery (primarily some bleeding) which led to the decision to leave his chest open for the time being.
He's currently back in ICU, sedated, intubated, and most importantly...stable.
They are hoping to keep him sedated and intubated with his chest open for a couple days to allow time for his body to do some clotting and adjust to the new heart. They will work to close his chest within the next day or two.
The surgeon we spoke to truly believes he will pull through this and be okay but may face a couple additional problems later on in life. He's just got very friable and frail vessels that made surgery more challenging than they were expecting. We will be working with additional specialists and geneticists to determine future needs prior to leaving the hospital.
I'm a mess today, full of all the big emotions. I will do my best to update everyone and respond to all the love and support we are receiving, but I ask for your patience as we navigate the next 24-48 hours.
Photo Galleries (4)
Guestbook
September 5, 2024
Saying prayers for Anthony and his family.
Jodi Schwalbe
August 28, 2024
Get well soon! We got some more DnD to play! -Jaimie and Collin Klemm
Jaimie Klemm
August 21, 2024
You Got This!
Bailey Tran
