Second Double Lung Transplant for Ray Grosvenor

Hello, my name is Ray O Grosvenor Jr and I received my second double lung transplant on June 14, 2024. For those of you who are unfamiliar with my story, here’s what’s been going on:

First I’m Ray, I am 48 years old and I have married to Heather for almost 17 years. Altogether we have 6 kids Ray III 26, Gabi 15, Nathan 13, Maya 11, Julia 8 & Jonathan 8.

I was diagnosed with IPF (Interstitial Pulmonary Fibrosis) in 2015. By June 2018 my lung disease had progressed to end-stage lung disease and my only option for survival was a double lung transplant. I received a double lung transplant on September 12, 2018 for which I will forever be grateful. Following the transplant I had a relatively speedy recovery and continued to do well for a little over 3 years. Unfortunately in October of 2021 I began to experience rejection. Since then I have been hospitalized multiple times for complications of rejection. Some of which include: multiple pneumonias, blood clots, multiple viral & bacterial infections and a collapsed lung. During all this I have been receiving photopheresis infusions at St David’s South Cancer Center, plasmapheresis, IVIG subcutaneous infusions at home and put back on oxygen 24 hours a day in an attempt to slow the progression of rejection.

Despite all the efforts of my wonderful transplant team at University Hospital in San Antonio I had a steady but rapid decline in my overall health and lung function over the last 2 years. My last lung function test showed me to be at 19% lung function. The transplant team in San Antonio referred me to Baylor St Luke’s in Houston and they agreed to accept me as a transplant patient thankfully. I was officially listed May 11, 2023 and was on the list for 400 days.

Although this isn’t my first time going thru this and I am somewhat familiar with what to expect, there are a few differences and obstacles we will experience. So that is why we were encouraged to start a GoFundMe. Being my second transplant I am fully aware that a repeat double lung transplant comes with increased risks, financial burdens and can be a logistical headache when you have a very active family of 8. For a little over a year we have commuted to Houston which is almost 3 hours away for testing, appointments and a few admissions. One big difference this time is that they are requiring that I relocate to Houston to be within one hour of the transplant center for a minimum of 90 days following discharged from the hospital for follow up appointments, bronchoscopies, pulmonary function testing and labwork to closely monitor my new anti rejection medication regimen. After the initial 90 day relocation I will be required to attend weekly, biweekly and monthly appointments in Houston for one year.

One of the many requirements in determining eligibility for a lung transplant like before is that I have a caregiver that attends all appointments with me. As my primary caregiver my wife Heather will not be able to work for 3 months following the transplant, this is also a requirement of the transplant team. I will be out of work for 4-6 months depending on how my recovery progresses.

The Go fund me funds raised will help with relocation costs, travel expenses, time off of work and medical expenses related to my transplant. There are so many other costs associated with this type of surgery that aren’t covered by insurance. The funds will afford us the opportunity to focus on recovery, family and getting thru this challenging time once again.

Please feel free to reach out and ask any questions about my condition or my journey with lung disease. We appreciate all the prayers, positive thoughts, encouraging words and support from all of our family, friends, church family, and our work families. Not only now but thru the years as I’ve experienced health challenges. Thank you for taking this time to read about my story and thank you for your help.

Forever Grateful,

Ray, Heather, Ray III, Gabi, Nathan, Maya, Julia & Jonathan