Myjourney2breathe

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Myjourney2breathe

This page is about Avery Monet, a 21 yr old, who has Cystic Fibrosis, received a Double Lung Transplant, and was diagnosed with CF Related Diabetes.

This is about her journey to breathe! This page is about Avery Monet, a 17 yr old young girl, who has Cystic Fibrosis (CF), which is a genetic disease that has ultimately destroyed her lungs. On a daily basis, she spends hours a day taking medication, breathing treatments, pounding or cupping of her back, IV antibiotics around the clock, oxygen and many hospitalization stays. She is currently on h

er way to St Louis, Missouri to begin her journey for a new set of lungs (WE HOPE). Her journey will begin Tuesday with her first surgery there in St Louis. She will be getting a G Tube, which is a feeding tube that will be placed in her abdomen to feed her thousands of calories a day, Once she gains 10 lbs, she will then be placed on the double lung transplant list where she will be the recipient of a new set of lungs.

15/08/2022

Covid 19 made its way on over 😭🚨

After escaping covid for 2 & 1/2 years, I finally got it. Its been about 2 weeks now since I tested positive and I am super lucky to have recovered incredibly. Day 1 and 2 were the hardest. I had fevers, chills, aches, headaches, sore throat and breathing problems. My team at Tampa General immediately sprung into action with a game plan that they have been using with all their transplant patients to make sure we stay as healthy as possible. They changed many of my medications including holding one of my main immunosuppressants and changing my daily steroid, prednisone, to an extra extra strong steroid. In addition to that, I also was able to get the monocolonal antibody infusion. Between that and the extra steriods, I immediately felt a difference in my lungs and have been able to completely recover!! Due to being immuno compromised, my team asked that I quarantine for three weeks to ensure I don’t catch anything else while recovering. With only one week left, I can actually say that I’ve actually really enjoyed staying inside with my fiancé getting lots of time to plan our wedding together and hang out with our doggie! Heading back to Tampa next week to see how my lungs are doing post rejection and Covid. Will keep everyone updated! ☺️☺️

18/07/2022

My Therapy Boy 🐶

Happy Summer! Sadly, I found out a few days ago that I have another bout of acute rejection in my lungs. Luckily, it is still the most minute stage and caught early! My hospital has recently started taking samples of a new lab test, called Allosure, on lung transplant patients, that was mainly used on kidney patients prior. This lab does not directly tell you if you have any rejection, but more shows a trend in your cells that helps indicate if something could be wrong. Due to my levels over the last month being elevated consistently, they decided to schedule another bronchoscopy to check on my lungs. Luckily for that test, they caught the rejection early! Yesterday I had a wonderful home health nurse come out and put my IV on so I can administer the IVS. Just 3 days of IVs and 2 weeks of oral antibiotics and hopefully life will be all good again! Tampa wants to do some additional testing to see if they can find a trend in why I am having rejection again. Although there might not be any answers, it doesn’t hurt to check it out. Besides an iffy week or two I’ve had a wonderful summer traveling to Siesta Key, Philly, NJ, Michigan and heading out to Utah in a week or so! I just became a travel agent so hit me up if you have any needs! Sending my best to everyone! 😁💗

01/07/2022

Thank you Tampa General Hospital for sharing my story! 🥰

21/04/2022

I’M ENGAGED 💍💗😍

Yesterday was the most amazing, memorable day ever!! I surprised my girlfriend and proposed on the top of the Smoky Mountains in Tennessee. So thankful for the most amazing photographer who captured this moment perfectly!

We are currently on a road trip vacation to celebrate Rachel’s 25th birthday…. AND now our engagement!!! We are both over the moon and enjoying every minute!

Thought I would share the good news with you all🥰❤️

11/04/2022

Happy April!! I cannot believe how fast the time is going!

Today was a wonderful day volunteering at JDRF (Juvenile Diabetes Research Foundation) in Orlando! As a child, I was heavily involved in the (Cystic Fibrosis Foundation), (Make a Wish Foundation), and (Mid- America Transplant) because those organisations were apart of my health journey thus far. Since my diagnosis of Diabetes -11/11/19, I have yet to be super involved in that world. Now that we are “post” pandemic I was so happy to get out there and meet a bunch of families, children and young adults with Diabetes like me😁

I have said this before and I will say it again, out of all the ups and downs and pain I have been through in my life and the challenges of managing diagnosis’s, Diabetes is one of the most painful, stressful and difficult DAILY disorder’s I have been through. Although most of you know what diabetes is and just think “oh yeah diabetes, its not cancer, I know so many people that have it…” Until you, a family member, or a close friend have it, you don’t know the daily challenges it entails. I am excited to continue my involvement with JDRF and sulphur Florida to help bring awareness and funds to the world of Diabetes. We need so many advancements and am hopeful for new Diabetic technology in the future! I am grateful that my A1C is extremely well at a level 6 and I have been able to manage my diabetes with my CGM, Dexcom and my insulin pump, Tandem! 💉

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