Kathy’s Story – Part 1

65_RedRoses is Eva’s story, but we know there are thousands of other transplant recipients with compelling stories to share as well. One such recipient is Kathy Meier, who received a double-lung transplant just over two years ago. She is doing well, and got in touch to share her story of living with CF and receiving her new set of lungs. Do you have a story? Contact us at outreach@65redroses.com

65_RedRoses: How did you hear about the film?

Kathy Meier: While I was waiting for transplant there was always people around talking about different stories and Eva’s name came up. One day when I was feeling up to going on the computer I decided to check out her blog, and from that day on she always had a place in my heart.

65RR: What did you feel when you first watched the film?

KM: When I watched her film it moved me to tears of course. She was truly an amazing woman. The ups and downs that she overcame were inspiring and I was really happy to see the friends that she was able to communicate with. The film was really well done and can’t wait to see the updated version on OWN.

65RR: How did you relate to Eva’s experience of building relationships with other CF patients through her blog and online, since those living with CF are discouraged from spending time together in person at the risk of infection.

KM: That is one of the really difficult things when dealing with CF, not being able to spend time with others having the disease. These are the only people that can completely relate to what you’re going through. I have two other siblings with CF and I think we became immune to one another’s germs so it was wasn’t as much of a burden within our family, but come on, who really gets along emotionally with their siblings when they’re young, am I right?

I lived in a small town growing up and cystic fibrosis wasn’t a very well known disease as it is now. I was diagnosed at the age of 9, my sister at 4 and brother at birth. We were pretty healthy kids other than unable to gain weight and myself having quite a lot of chest infections. The community wasn’t fully aware of what our family was going through at that point, but as we grew older they began to realize what my parents were up against. I know if at that point they had of asked for help, people would of gladly done anything for us. The advantages of living in a small town!

65RR: What was your support community while you were awaiting a transplant?

KM: Once I began having complications with my CF and was placed on the transplant waiting list, my friends (with the help of four area communities) came together and to my surprise had organized a silent auction and benefit dance to raise money to cover the costs that were accumulating everyday while living away from home. It was truly amazing. To this day, I still cannot believe how lucky I am to have so many supportive people in my life. Everyone is still asking how I’m doing and always roots for me. It’s incredible.

65RR: When you were born in 1978, the life expectancy of a person with CF was 11. Today it’s 35. As so much progress has been made in improving the health and quality of life for people with CF, are you hopeful for the future of CF treatments?

KM: I am so amazed at the treatments they have found to help treat cystic fibrosis. I can still remember going to my clinic appointments when I became an adult and looking around at the different people and wondering how old they were because they looked pretty darn good. I talked with one woman and was very bold in asking her age. She replied that she was 48. I was so thrilled to hear that. It gave me hope.

Life expectancy has always been an issue in my mind for me. I really thought it would get me in the end. But when I see and hear of so many people doing so well it really gives me hope for my siblings, and hope that one day CF will stand for Cure Found.

I can remember as a child my dad saying to me that hopefully within 10 years they will have a cure, as at that time they were finding out more and more information about the defective gene. Sadly that was about 20 years ago, but I will never give up hope!