Hello Miracle Makers! It’s been a little while since our last big update on Alicia. I figured it was time to fill you in on her current well being as well as her newest battles and concerns so that you all can join us in praying for her and supporting her in so many ways!

For one, Alicia is HOME! After a 4.5 month stay in St. Louis, Alicia and her family are back home. Alicia had her bi-lateral lung transplant in late March and then stayed 3 months post op in St. Louis for lots of appointments, follow ups and check-ins. Do you know the doctors’ feedback? Alicia’s new lungs look GREAT! I don’t know if you’ve seen any video or photos of our girl since she’s healed from surgery, but she can RUN! And she is no longer carrying around oxygen either! Talk about a major life change! Alicia is having to adjust to life without feeling exhausted or winded in minutes simply from a stroll to the couch from her room. Her lungs can now outlast her legs so that’s what she’s doing these days – training her body to keep up with these new lungs! That is cause for major celebration. Another celebration is that her whole family is now HOME in Spring Hill and able to relax in their OWN space. The Ronald McDonald apartment they lived in was a HUGE blessing, and now it’s time for someone else to get to use it. Our Berkey crew is BACK HOME!

So what does life after transplant look like for Alicia? Well, she starts her day with 17 pills. These are pills that help her body to not reject her new organs and keep her as healthy as possible. She has 4 more pills she takes at night. And all these medications are not without side effects. Currently, Alicia is experiencing both blood pressure issues and blood sugar issues. She is being closely monitored for the suspected development of diabetes. She checks her blood glucose 4 times a day right now as they wait for results of her glucose tests. She takes her blood pressure twice daily as doctors monitor her case because her BP is also very high.  Her high BP is a direct result of the anti-rejection medications, so she has additional meds to combat that. As these blood sugar and pressure issues get sorted out, those numbers of daily medications will fluctuate. As you can imagine, there is nothing simple about navigating blood pressure and blood sugar complications while learning how to properly care for her new lungs.

Alicia also has lab tests and blood draws 2 to 5 times a week right now. Doctors are hopeful that they will be reduced to once a month when they see all the ways in which her body is responding to the anti-rejection medications and get Alicia on the combination of meds that will best work for her.

Remember pre-surgery when Alicia’s lung function ranged from 17 to 21%? That’s ROUGH! These days, she’s ranging from 85-89% which is a HUGE improvement and her reason for RUNNING! She CAN!

Right now, Kansas is under a mandate from the government to wear masks in public. This may seem like a major inconvenience to some, but to Alicia, it’s just life. She wears a mask every day, COVID 19 or not, because that’s a major precaution to keeping her safe. Imagine how much safer SHE is when YOU wear your mask, too. Alicia had her surgery in the early months of COVID19 shut downs and all the unknowns. Her doctors have been very honest about how dangerous a respiratory thing like this could be for her. AND, Alicia is choosing to live life joyfully and with precaution. She is asking YOU to do the same. Wear your mask in public – not because it’s a loss of perceived freedoms, but because it’s a simple way to protect Alicia and others like her.

All these meds, all these labs, follow up doctor appointments in KC and STL… those costs add up. Her million dollar surgery gave her a shot at some super great new adventures and it gave her some new complications as well. Let’s help to reduce the financial impact these things have on the Berkey tribe. In January, we set a goal of $100K in 2020. We hare already half way there. Let’s see what more we can do alongside Alicia learning what more her body can do in 2020. All of you that have helped get us this far in fundraising…. Just wow. COTA calls you miracle makers for a reason. I’m so incredibly appreciative. Overwhelmed with gratitude. So is the Berkey family. THANK YOU!!!

And if this is the first time you are reading about our Alicia, please check out her COTA homepage and profile to learn more about her full story and to see photos of her journey through surgery. She’s a BOSS. There is also a direct link there for donations if you feel so led. 100% of donations to COTA in honor of Alicia go directly to assisting with all transplant related expenses – and there are LOTS of expenses!