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STROLO Star: Rosie Grossbaum

May is Cystic Fibrosis Awareness month. It’s a time to shine the light on cystic fibrosis (CF) and educate others. Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. CF is a complex disease, with many layers, and it affects everyone with the disease differently.

Swim to Live

It is hard to believe it is May 2021 and over a year since the COVID pandemic put us all in quarantine and we all have faced many challenges. May is also Cystic Fibrosis Awareness month and during this month the community comes together to help others learn about the disease, share personal stories, and unite behind our mission: finding a cure for all people with CF.

Life Beyond Transplant

Organ donation is the best gift. I wouldn’t be here today without my selfless donor. Almost 4.5 years ago, I was given the gift of life of new lungs. Getting there was the struggle of waiting almost three years for those perfect lungs. Living life before transplant was difficult. I was poked and prodded every few weeks and I was in the hospital for the majority of the years that I was on the waiting list. Lung infection after lung infection, it became the most annoying and frustrating cycle.

It is About: Time

Organ donation saved my life and has brought me the joy of living far beyond what I ever thought was possible!

I was not fully aware of how much I struggled in my day-to-day life until I began my life post double lung transplant. Explaining what organ donation means to me, is fruitless, because I could never describe how much I appreciate the gifts I have received from my organ donors. And since I have three organ donors, I have a LOT to be thankful for.

Transplant In Real Life

Three years ago, I didn’t picture my life here. After my double-lung transplant in 2017, every aspect of my life has changed. Not having Cystic Fibrosis in my lungs anymore is a completely new life devoid of congestion and difficulty breathing. One I couldn’t even imagine until I had new lungs.

Third Times A Charm

I wrote this blog post to kick off organ donation awareness month by sharing my journey to ‘new lungs’. I was sitting in a chair in a side conference room on the cf floor of Children's Hospital Boston. My mom was there along with a few of my doctors and nurses and my sister on speakerphone. My CF team wanted to have a serious conversation about my health. I had recently been admitted to the hospital for the fourth time in four months and this time it was a more serious admission.

34 Years

Very soon I will celebrate my birthday. It’s a big one, especially for someone with Cystic Fibrosis. At the end of March, I will hit the big 5-0. An age that most people dread, most people hide, and most people reach. Reaching 50 years old is never a given and that is even more so within the CF community.

If You're Reading This, You're Alive

I should preface this by saying that sometime over the last few years or so I started to have a really hard time writing these blogs. I would start writing one but then second-guess and doubt everything that I was saying. They all felt so “preachy,” like I had it all figured out, which couldn't be further from the truth. Everything I write in this blog are things, or advice, I’m still working on myself. So with that being said…

Getting Through This

When the pandemic started, I did not know much about Covid or how serious it was, all I knew was that it is something I did not want to get. After learning more about it I was nervous about what it could do to a person like me with cystic fibrosis. Watching the news reports and listening to the radio added to my fear and worry of contracting the virus. Being out of work and living alone heightened my anxiety towards this virus, if it were not for my emotional support animal Peanut Butter being by my side and taking my mind off the fears of Covid I would have lost it.

STROLO Star: Martha Garvey

The STROLO Star program is a quarterly spotlight of bright stars in the CFLF community. This program aims to share more stories from members of our CFLF community, including Recreation Grant recipients, volunteers, CFLF board members, CFLF Blog writers, STROLO-U instructors, sponsors, and more.

This Winter we had the opportunity to speak with the talented and inspirational, Martha Garvey.

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