I Have New Lungs and I Still Have CF

I had a lung transplant earlier this year and, although I'm able to do more physically than I could before my transplant, I still have cystic fibrosis. I still need support -- support from the CF community, from the CF Foundation, and from you.

| 4 min read
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Rima Manomaitis
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The past year has been eventful for me, to say the least. If you read my previous blog posts, you know that I was on supplemental oxygen and went through a couple of dry runs before I had a double lung transplant in May.

Life post-transplant has been both real and surreal. The fact that I can now breathe without needing the assistance of oxygen coming through a tube has been strange in a good way. The fact that I can laugh without going into a coughing spell, walk around without becoming winded, or go on a hike in the Rocky Mountains is pretty darn surreal.

Right after transplant, doing basic things for myself again was the first step before hiking the Rockies -- like cooking, washing dishes, and making my bed. While these are small tasks for most people, for someone with cystic fibrosis, with as low lung function as I had, they were a big challenge. Just standing to wash my face was hard. On some days I would race to wash as fast as I could before the typical gasping for breath started.

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Post-transplant life has vastly improved, and I wouldn't trade anything to go back to how it was before. The possibilities of what I can do now are beyond exciting. I can live out my travel goals for the most part, with more freedom to just get up and go. I can pack one suitcase instead of multiple cases by not having to fit all of my medical supplies into one bag. And, the destination is of my choosing, with maybe just a little bit of restriction due to germs and access to medical care. One place I'd love to visit outside of the United States is Madagascar. I have always wanted to go there because it's one of my dreams to see the baobab trees, chameleons, and lemurs.

I am more connected with the CF community than I ever have been. It is a huge support system and I am so lucky to be connected with it. It wasn't that long ago that I had minimal contact with other people who have CF. Once I explored the social media world and found other people with cystic fibrosis, my world changed. I've made amazing friends who I talk to on a regular basis. I'm even part of group chats with others that have become like a family and serve as a wonderful support system for all of us. It's incredible to see how each person who has CF lives their life with this disease. We may need to live our lives with limitations, but we decide how to deal with them.

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Many people believe that people who have lung transplants don't have CF anymore, but I still have this disease -- just not in my new lungs. In addition to things like taking anti-rejection medications and regularly following up with my transplant team, I still have to take enzymes before I eat, try to gain and maintain weight, and I still see my CF care team four times a year.

The CF Foundation supports individuals like me -- helping people with CF to live out our dreams and encouraging us to spread our wings and reach for our goals. The Foundation supports research and care so people with CF can climb the mountain, go to college, or even go to Madagascar and see the lemurs. That's why I'm asking you to join me in making a donation to the CF Foundation this holiday season.

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Topics
Lung Transplantation | Fundraising
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Rima was diagnosed with CF at 4 months old. She went to school for environmental science but now works part time for the Cystic Fibrosis Lifestyle Foundation as their development coordinator. She also volunteers her time on the CF Foundation Rocky Mountain Chapter Advisory Board as well as volunteers for Make-A-Wish Colorado. She spends her time hiking the mountains of Colorado and snowboards during the winter season. Follow her adventures on Instagram, YouTube, or on her blog.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.