By Lara Govendo
This month we’re celebrating Donate Life month by highlighting personal stories of those with transplants. One of our directors, Lara Govendo, interviewed Maria Urrechaga about her unusual transplant story.
Q: What’s your history with cystic fibrosis?
I was always sick growing up—everyone thought it was just asthma and allergies. There was no history of CF in my family and at the time, checking for CF was the last resort. I grew up in Baton Rouge, Louisiana. I wanted to start college early, so I began classes as a freshman at LSU when I was sixteen. During that year, I got really sick and started coughing up an abundant amount of mucous. One day, I fainted and was sent to the on-campus infirmary. The doctor took x-rays and started me on antibiotics. Back then, there were no cell phones, so the doctor had to call my house when he couldn’t track me down during my classes due to illness-related absences. He told my dad that I had the “lungs of an 80-year old”. The pulmonologist admitted me inpatient and did an open lung biopsy. The lung specimen they captured was the diagnostic proof that I had CF. My grandparents are from Spain—we didn’t realize there was a large percentage of CF carriers that ran in my Basque family heritage.
This opened up a whole new world that was challenging to navigate as a sixteen-year old. I didn’t know anyone with CF. The doctor sent me to the “better breather’s club” that was filled with 80-year olds with COPD lifting cans of peas. I couldn’t relate to this group, so I left.
Q: Tell me about the early years after your diagnosis.
I graduated LSU and moved to Miami at twenty years old. I found a specialist there and began meeting others that had CF. During this time, my insurance only covered 80% so I had to take out bank loans in order to pay for treatments. Between the ages of 22 and 30, I experienced a rapid decline. I lacked the self-discipline for consistent treatments because I never learned as a child, given my late diagnosis.
I married my first husband at 25. We adopted a son together when I was 28. We had friends that knew of a mother that was going to give her baby up for adoption, so we were able to have a newborn. Such a miraculous experience! Six months after, I was listed for a double-lung transplant in August 1994.
Q: What was it like being thrown into the transplant process?
My CF doctor had come from UNC, Chapel Hill to open an adult CF center at The Medical University of South Carolina in Charleston. I had heard of a few transplants in the early 90’s when they started. We talked about the possibility of transplant and explored it because I had a newly adopted son. I did the evaluation at UNC and it just made sense to go through it. I’m glad we did it at that time. It was hard seeing other patients going through what I too was experiencing at a quicker rate and not being listed or not having explored the option. I had my funeral planned, but I never thought I wouldn’t make it. My last words to my doctor before he put me on a ventilator were: “don’t give up on me”.
Q: What emotions did you experience during this time?
Throughout the process leading up to my transplant, I vowed that I would keep a journal. My Mom died of cancer when I was 14, so I remember little about her thoughts and feelings about life. I kept that vow and wrote in my journal frequently so that my son would know who I was if I didn’t make it. I wrote about my thoughts and feelings during this process. It was a very therapeutic tool for me.
Q: What was your life like, while waiting on the transplant list?
The criterion for getting listed for a double-lung transplant was different during that time than it is now. It was first come, first serve rather than taking into account severity and progression of illness. At the time, I began attending The Citadel Military College in South Carolina for my engineering degree. This was an all-male school and had very strict physical requirements to be a cadet, so those who were not cadets had to attend classes at night. I went to class while on IVs and oxygen, as well as working full time at an engineering firm. After being on the list for 28 months, I had two failed transplant attempts. One because of my increased steroid dose at the time and the other because the lungs weren’t a viable option. I graduated in 1995 and began to experience a rapid decline. In June 1996 I was in the hospital often and went into respiratory failure on October 13, 1996. I was 30 years old at the time and was quickly put on a vent. I woke up five weeks later to discover I had a transplant, and that my new lungs came from two living donors.
Wait, what? This is insane!
While I was unconscious my UNC doctor was willing to perform this cutting edge procedure, so he was orchestrating the details. Word got out and sixteen people volunteered for testing. Six were viable options. Through blood type, size, PFTs, and psychological exams it was determined that my husband at the time and his brother were perfect matches. They each donated a lower lobe of their lungs to me on October 25, 1996. It was an emotional time and brought me closer to a lot of people that weren’t even blood-related.
How was your recovery?
On the operating table I had two strokes. I was in a medically induced coma for five weeks. All I can say is the power of prayer is real. After five months in the hospital, I came home in February of 1997. I had to learn how to walk all over again. It was a long road of recovery, but I’m so grateful to have had such strong support the whole time.
Three years after my transplant, I went back to work as an engineer. I also went back for my master’s degree in engineering. It was a lot to handle. It felt like I was always trying to balance work, family, and taking care of myself. All three were full-time jobs.
I’ve had several complications throughout the years proceeding my transplant. I’ve had a double mastectomy, hysterectomy, and meningitis to name a few. Part of me worries; part of me says everything will be okay. It’s always a juggling act.
Q: What advice would you give to those that are considering a transplant?
Based on my success, it’s hard to say no. I’ve had trials of course. Was it painful and difficult? Absolutely! But having the opportunity to watch my son grow I knew it was the absolute right decision for me. I just love life so much! I’ve always had a clear vision of what I want—I can see grandkids running around and I can see a white house with a red tin roof (like the house I have now). I always created vision boards with God in the center and me creating the life and energy I want. It’s important to be accountable to yourself. It’s your job to take care of yourself and advocate for your needs. When you can’t, you need people that will speak up for what you want. It’s important that others know how much you love life and appreciate what you have. Connection is a huge part of my success; I wouldn’t be here without the posse of people that have my back.
In the second half of this interview, we learn about Maria’s experience with a COVID-19 diagnosis. Subscribe here to get updates when the next segment is released!
About Maria: Maria Urrechaga is 54 and lives with her husband and family outside of Charleston, South Carolina. CF, and her double‑lung transplant, has shaped Maria into the person she is today, but by no means defines her life. Maria is grateful for the opportunity to get married, watch her son grow into an adult, and pursue her interests. Her passions include engineering, church ministry, and working on cars with her husband. She inspires the world with her tenacious spirit and she’s determined to persevere no matter what she faces.