Support Michelle's Double Lung Transplant Journey

Hello everyone! We are writing this on behalf of our mother, Michelle. We would like to share her story with you. Michelle is a mother of 4, grandmother of 2 and the glue that holds our family together. Michelle is one of the most selfless, kind hearted and genuine people, always going above and beyond for those around her. At the very young age of 36, she was diagnosed with a rare lung disease, known as Alpha-1 (Alpha One Antitrypsin Deficiency) that has no cure. This disease prevents her body from producing a protein (AAT) in order to protect her lungs. The latest testing has shown that her lung function is at 32%, a steady decrease over the last 12 years. Due to this decrease in function she is on a constant flow of oxygen, making even the most simple tasks for you and I, a major task for our mother. 10 years ago, she began weekly infusions that are meant to slow the progression and worsening of her lungs. Unfortunately, there is still a decline in function as these infusions have not been successful at slowing the progression and have had no positive effect on her health.

Michelle has been hospitalized numerous times since the diagnosis of Alpha-1 for pneumonia and respiratory failure, all taking a harsh toll on the overall function of her lungs. She was placed on a ventilator in October 2021, Mercy flighted and hospitalized for a month, all due to the severity of this disease. Without a cure and due to the steady decline in lung function, the only option for a better quality of life, is a double lung transplant.

Recently, Michelle went through a week’s worth of testing and consultations at The University of Pittsburgh Medical Center (UPMC) to see if she would be a good candidate to be placed on the transplant list. After meeting with the transplant team, they have determined that it is time and, she is a great candidate to be listed for a double lung transplant! Michelle is required to coordinate a care team, consisting of friends/family that will support her throughout this entire process before, during and after the surgery. The transplant itself will require her to be hospitalized for 2-4 weeks and she will be required to stay in Pittsburgh for 3-4 months following the transplant, along with her care team. Her care team will need to provide 24 hour care, assist with taking her to and from appointments and must stay within 30 minutes from UPMC. Following the transplant and post operative care, she will return home to her loved ones. She will then need to visit UPMC every 3-4 months for an evaluation.

Insurance does not cover the cost of any living arrangements for her care team and the list of medications is costly. Lodging alone is estimated by the transplant team to be around $8500 for 90 days. That does not include co-pays for medications, travel expenses and food. Our mother truly deserves this life saving transplant. She deserves to enjoy life with her friends and family all while being able to breathe with ease.

Our family can’t thank you enough for all of your support! Whether that is through donations, kind words, thoughts and sharing this with your friends and family, it all goes a long way!

Thank you from the bottom of our hearts,

The Rhodes family