Rima has had a roller coaster of a year. Scratch that, the last 28 years of her life. She was diagnosed with cystic fibrosis at four months old. Born and raised in Boston, Rima grew up running around outside, camping, biking, exploring and never sitting still. Two years ago she decided she was going to move to Denver, Colorado from Boston. She was not going to let CF stop her from living out her dream of living near the Rocky Mountains.
Unfortunately in the midst of her relocating, she was told she needed a double lung transplant within the next year and a half. Denver turned out to not be the right spot for the transplant. That’s when I (her older sister, Laima) jumped in as her partner in crime. I moved from Brooklyn, NY to Denver to become her caregiver and start our quest for new lungs for Rima.
We were very lucky in finding the U of MN for Rima’s transplant. We relocated to Minneapolis in the fall of 2016. We thought we would only be waiting for the call for new lungs for a couple months. We are very active and love to adventure and explore. We did not let her limitations hold us back from exploring this new city and state. Even though Rima was on oxygen 24/7, and had a hard time walking short distances, we made the best of it. Rima has never let CF stop her - and she was not going to now, in a new city.
On Halloween eve, we got a call for new lungs for Rima. After spending a long 19 hours in the hospital (even after Rima was intubated), it turned out to be a dry run. A week later, she ended up in the hospital with fevers. So began her three month stay at the U of MN hospital. All the while her amazing medical team tried to get her lung function up and ready for the next call.
During her three month stay, we explored the hospital and school campus. She made friends with all the staff, naturally. She’s such a friendly and bubbly person it’s hard not to be captivated. She gained muscle and weight. She got her PFT’s (or lung function) up as much as she could (from 15% to 18%). Finally, her care team let her out of the clinker and sent her home.
Our second call for new lungs came on April Fools’ Day. After seven hours of waiting in the hospital, it turned out to be a second dry run. Rima did not let this dampen her bright spirit; the next day she was back at the gym. We continued life as “normal.” Nothing a good pizza from Young Joni couldn’t mend.
Finally on May 14th, Mother’s Day, Rima got a third call for new lungs. Thankfully, this was the real McCoy. After a nine-hour surgery, she came out with a “brand new” pair of airbags. The next two weeks she impressed medical staff and blew expectations out of the water with her amazing recovery. Her team was floored at how dedicated she was with the goal of being able to go home. She pushed through all the pain, tubes, and wires, and got to go home two weeks after her double lung transplant!
The next three months we focused on her recovery at home. Making sure we got a handle on all her new meds, and her new life. A second chance at living it to the fullest. We’re so lucky to have been able to call Theo’s Place home during this whole quest for new lungs. It made all the difference to us. It was a huge burden off my shoulders knowing we had a beautiful, warm, inviting place to call home during the hardest year of our lives. Hardest year; but also the most rewarding and memorable one!
Written by Laima Manomaitis