Breathing is the greatest pleasure in life. – Giovanni Papini.
Most of us breathe without thinking, as our body does it for us automatically. It’s so easy that we barely pay attention to it. But for many people with lung disease, not such an easy task.
We are here to share an inspiring story of one of them. She is a survivor of Pulmonary Fibrosis and celebrates in June her 6 grateful years as a double-lung post-transplant. Read on and meet Terri Pilawa!
Meet the double-lung transplant & CEO of One Breath Foundation
Terri Pilawa was a working professional and at the tip-top shape of her life when she started with shortness of breath. After being misdiagnosed for the first four years with asthma at the age of 40, she was diagnosed with Pulmonary Fibrosis, a disease with no cure. With the fast progression of this disease, she would shortly also need a life-saving double lung transplant.
Feeling hopeless, Terri was looking for a support group, someone to talk to. She did not understand the disease, she lost her job and moved with her husband and son from Las Vegas to California to live with her mum. As the disease progressed, she was put in a wheelchair, living on oxygen and her life was going away…
Thanks to her family member, she found out about the One Breath Foundation. A support group for lung diseases ran by double lung transplant survivor Gloria Rodriguez.
Knowing there is someone who survived this disease, her mum packed 3 oxygen tanks and took Terri to the support group. Seeing all these survivors gave her inspiration and hope she is going to survive too.
“Gloria not only ran the support group but also raised funds for people struggling with these diseases as they are financially strained. She helped with paying post-transplant and pre-transplant housing, prescription payments, medical equipment. She would do anything to relieve your financials. Give gift cards for fuel, grocery stores, buy air filters, pay the electricity bills, and so on. All the members are volunteers and they run strictly on donations only, so I would give her even the little I had after I lost my job. She helped to raise the funds for me too.”
Getting a second chance for life
In 2014, Terri was hospitalized because she needed so much oxygen support on the high-flow machine. The same year she was placed on the double lung transplant list. After waiting 8 long months, some of that time in hospice, she received the call. On June 24, 2015, a week after her birthday, Terri had transplant surgery. Thanks to her donor Maria who tragically passed away at the age of 22, she was given a second chance for life. She is very grateful for her donor giving her a chance to breathe without an oxygen tank and being bedridden.
After rough recoveries and multiple surgeries, she celebrates life and continues sharing her journey with others. If you want to find out more about her personal story, visit Stories at One Breath Foundation’s official website.
Taking over the foundation
When Gloria, unfortunately, passed away, the board wanted the foundation to continue Gloria’s legacy. Terri received a call from one of the board members asking her if she would like to take over the foundation as a CEO. Without hesitation, she said:
“Of course, I will! I can’t let this go! I have to continue her journey and continue to help others because there is so many people out there that have this rare disease. And they are saying it’s not even considered rare anymore because people are getting diagnosed. They are looking to what is it besides misdiagnosing it as asthma. So we transferred all the paperwork in my name, and then I got my new board, and that’s when I said I need a website!”
Using WordPress to get the word out there
In the past, One Breath Foundation did not have a website. The founder Gloria Rodriguez, would go and reach out to people in hospitals. She would pass out flyers, business cards, and other materials. Terri wanted to start reaching out to others and put it on the web. So she hired her best friend and they decided to go for WordPress and start searching for some plugins.
They needed to collect donations, but also to reach out to others to help them out. She needed a form so people can write down their information especially when they need assistance. She needed a form so people can sign up if they want to join their support group to receive information such as brochures, phone numbers, business cards, where to go, references, and others.
“That was the purpose of getting this website going and I wanted to make One Breath Foundation bigger and brighter, and healthier. It’s not like I wanted it to be the biggest thing because I am still very small, but I wanted to be out there.”
Having a website helps Terri to give back to others who are going through this horrible disease. It gives her a chance to create a connection between people affected by the disease. So they don’t feel alone as she did during her most difficult moments.
“I want people to know the One Breath Foundation is here for you, going across the United States. And we are now known across the United States. When we signed up for Ninja Forms, and we designed everything and put it on, we are helping more people than ever! People are signing up because it’s so easy to use and so simple to put on. It’s so very simple for my clients, our members, and our patients. They’ve got so many things to do on their minds. They get to take medications, they get side effects from medications, they got the hospital appointments, PT, home infusions, and nurse visits.
There is so much going on in their lives. With this coronavirus going on, a lot of our members stay home. They don’t go out. It’s so easy for them to go on our website if they need assistance, to get on that form and fill it out. Then it comes to me. I can easily read it, get with my board, and help them out.”
Connecting with patients through Ninja Forms
“When my best friend Cheryl said let’s do the Ninja Forms, I said let’s just do it! When we were designing the website together, I was telling her what I just needed on the form. It was so easy. Everything simple, especially for my patients and members, It’s pretty awesome.
It brings a connection to me. That’s what is all about. My Ninja Forms is a connection to my One Breath Foundation, to those members who are suffering from lung diseases, a connection through support. And we get them that connection they need. Whether it’s funds, whether they need to just talk, we do Zoom, and they want to talk and cry. Whether they just want to pray, talk about the illness, whether they need suggestions, or talk to somebody else who is going through it. It’s a connection that One Breath Foundation did not have before, and we have it now.
I am so grateful for the Ninja Forms. For making my life simple. And not only that. My patients, when they go on there, it’s simple for them. It makes that connection they need. It’s a great feeling to give the support and have that connection. Just bringing and putting the One Breath Foundation out there. Getting us to recognize. So thank you so much for Ninja Forms. For being there for us and making my life, and the life of patients so easy!”
We are very humble and thankful for Terri’s kind words, and it gives us a wonderful feeling that we can be a part of this extraordinary story.
Learn more about One Breath Foundation
We are so thankful Terri shared with us her life-changing journey with One Breath Foundation, where she, as CEO, gets the opportunity to give back and inspire others battling with the disease.
Impressed by all the work this non-profit organization does, we wanted to share this story with you, hoping you’ll spread the word too! Keep it up Terri and all the volunteers who run this awesome foundation!
To learn more about the incredible work they are all doing, visit their website or follow them on Twitter, Instagram, and Facebook.
