Unfortunately, for the past few years I've been battling a rare lung disease called Idiopathic Pulmonary Fibrosis, or IPF. IPF is idiopathic meaning a condition which arises spontaneously or for which the cause is unknown. I have never smoked or done any type of illegal drugs. In 2015 I was diagnosed with IPF, sadly the survival rate from diagnosis is 3 to 5 years. From that time, I was placed on a medication used to slow the progression of the disease. There is no cure for IPF, it is terminal. I was referred to University Medical transplant center in San Antonio to be evaluated for a double lung transplant since that is my only option for survival. I have been visiting the transplant center since then to monitor the progression of my disease.
On June 18, 2017 I was placed on supplemental oxygen 24 hours a day. In May on Mother’s Day I was hospitalized for a week for RSV (Respiratory Syncytial Virus) although rough I was able to recover and return to work. Then on July 1st, Heather took me to the emergency room and I was hospitalized again for a week but that time with pneumonia. Unfortunately, during that admission Heather and I were informed that I was in end-stage lung disease and we should move forward with getting listed for a double lung transplant ASAP. I have not been able to bounce back from the pneumonia and haven’t been able to return to work since the end of June. I got out of the hospital in the beginning of July and we have been traveling to San Antonio almost daily for testing, bloodwork, classes and procedures to be cleared for the transplant list.
After years of battling this disease, several hospitalizations, a lung biopsy, being on oxygen for over a year and now using a wheel chair to get around we have encouraging news. As of Friday August 10th, our 11th wedding anniversary, I was officially listed for a double lung transplant. Now we wait for a phone call telling us it is time and to report to the transplant center in a matter of hours. I take a regimen of medications and breathing treatments to attempt to give me some relief but as of my most recent spirometry appointment my lung capacity has deteriorated to just 36%.
One of the many requirements in determining eligibility of a lung transplant is that I have a care provider that attends all appointments with me. Once I receive my new lungs I will be required to attend weekly transplant clinic appointments at the University Transplant Center in San Antonio to check my anti-rejection medication levels, other blood levels, to have bronchoscopies, pulmonary functions tests and doctors visits for the first 3 months following the transplant after that I will be required to attend these appointments biweekly/monthly for a year. As my caregiver Heather will be required to attend all these appointments with me. Which means we will need childcare for our 5 younger kiddos Gabi 9, Nathan 7, Maya 5, Julia 2 and Jonathan 2. I will be out of work for 6-12 months, and on and on. This is where the GO FUND ME comes into play. All money raised will go toward travel expenses, childcare, and medical expenses related to my transplant. Heather will not be able to work for 3 months following the transplant. She will be required to be with me 24 hours a day 7 days a week as my caregiver, this is a requirement by the transplant center. There are so many other costs associated with the surgery that don't get covered by insurance. Double Lung Transplant is not without its risks and its financial burdens. After transplant l will be in the ICU and then later in the hospital doing rehab for up to several weeks. I am fortunate to live about 2 hours away from the University transplant center. University Transplant Center is one of the best facilities anywhere to perform the operation.
These funds will afford us the opportunity to focus on recovery, family and getting thru this tough time.
I am incredibly motivated to survive this--my goal is for Heather and I to watch our 6 kids grow up and to be as active in their lives as possible. We appreciate all the prayers, good thoughts, and encouraging words from all our family, friends and church family. Thank you for reading my story and thank you for your help. I look forward to sharing my progress with you and posting pictures of me after I recover from the surgery.
Ray, Heather, Ray III, Gabi, Nathan, Maya, Julia and Jonathan
Please feel free to ask any questions about our family or my condition. Please share this with everyone on your social media pages and ask THEM to donate and share as well--the more people who see this, the better our chances of hitting our goal.
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