COTA for Heart Warrior ZACK

12/31/2023

It’s been a year!

One year ago today our lives changed forever after a loving and selfless decision of another family to share a heart for Zack.
Forever thankful for their sacrifice. Zack has done well this year and learned to be a “normal” pre teen.
He was scheduled for 1 year biopsies but we missed after friendly Covid visited our home. He is rescheduled for Jan 18.
Thank you to all our family and friends who encouraged and prayed for us.

09/07/2023

7 Sept:

Zack had a check up today at CMH. We are so thankful for his team -they are amazing!
Liver enzymes normalized. But his white blood count/ immune system took a hit. So we will adjust Anti rejection meds again and recheck in few weeks.
Over all he is doing well, the team couldn’t be happier! His echo is perfect!
Thank you for all the prayers, texts, check ins and encouragement. Forever thankful for his donor and their family!❤️

07/01/2023

30 June update:

Zack’s echo and cath pressures are all normal. The biopsies resulted at 1R. In past he has been 0R. 1R means there were some white blood cells noted on 1 of the 5 biopsies taken. Nothing is impacting his heart at that time. The team says this is fairly common to see so no change in treatment at this time but of course will continue to monitor. Thank you for all the calls texts messages of prayers and love!
Forever thankful!!! Boys enjoyed some time at union station and the Kc zoo.

06/29/2023

29 June:

Today is 6 month cath/ biopsy day. Zack continues to feel well. Forever thankful for his donor and their family! And for our wonderful friends and family! Prayers for normal pressures and negative biopsy- no rejection.

06/03/2023

Update June 3rd:
Zack continues to do well. Echo is perfect. Labs are improving. We will repeat renal (kidney) ultrasounds to ensure no scarring from use of meds prior to transplant as one of the anti-rejection meds are hard on kidneys.
He will have 6 mo biopsy/cath end of month. Forever thankful for our donor and their family!

04/27/2023

27 April Update:
Zack was featured as the screen saver at Childrens Mercy Hospital this month for organ donation.
His checkup today shows his heart remains strong with normal echo. His labs show his immune system continues to improve. Liver enzymes increased again- we will continue to watch. Forever thankful for our donor and their family. And for amazing friends and family!

04/24/2023

Join in the celebration of COTA patients who recently received their life-saving transplants! Do you know one of these sweet faces?

04/22/2023

From AmandaTroy Langford:

April is Donate life month - please consider talking with your family about becoming an organ donor. Our family is forever thankful for our donor and their family!!

Zack continues to do well- labs are stabilizing. He is enjoying school, playing at park, riding his bike and being with his friends!

04/08/2023

Zack’s heart continues to do well. Echo is normal. The labs we look at for immunity have decreased again and his liver enzymes are elevated. We will adjust meds again and recheck in couple weeks.
During his last cath/ biopsy his lip was pinched during intubation and he now has an ulcer that is not healing. We have tried various medications but not making progress- his immune system is too weak. He is not eating or drinking much and has lost 2 pounds. We started a new regimen on medicine on Friday and praying it turns the corner soon.

03/31/2023

03/24/2023

24 March:

Zack neutrophils have increased slightly so he is able to return to school still wearing a mask (he continues to be at risk for infection). He is excited to go back!!
I will also go back to work. Praying he stays well!!!! Monday will be a huge day for both of us!
We will repeat labs again next week at my office. We continue to be humbled by the amount of love, prayers, encouragement, calls, texts and messages.

03/20/2023

20 March Update:

Cath update….

Zack echo and prelim biopsy is wnl.
His labs are somewhat concerning. We are adjusting his medications and will come back to Kc later this week for more labs then make decisions of the treatment

Thank you for all the texts, calls messages and prayers.