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Post by Rima Manomaitis

Journey to a Lung Transplant: Part 2

After driving for thirteen hours straight from Colorado to Minneapolis, my sister Laima and I finally arrived at our Airbnb. With time not on our side, chaos began early the next morning. I was in end- stage Cystic Fibrosis, and about to begin my week-long evaluation for a double lung transplant at the University of Minnesota Hospital. Every day was busy, and every day had a schedule that was filled with tests and appointments. The tests included 25 vials of blood for an initial set of labs, X-rays, CT scans, bone density scan, in-depth lung function tests, heart catheterization, a GI emptying test, and many more. The appointments were usually with the nutritionist, social worker, infectious disease, transplant surgeon, transplant doctor, and pulmonologist. We were also required to attend a ‘class’ to learn about do’s and don’ts before and after transplant. Each day was very mentally and physically exhausting for my sister and me. There was a lot of information coming all at once in unknown territory, but not too foreign because I had a transplant evaluation in Boston 5 years prior.

Once our week at the University of Minnesota was over, we made the long trek back home to Colorado. We didn’t know if I was accepted until they called me two weeks later with their decision…which was yes! I had never been more excited about anything because I wanted to breathe, receive a second chance at life, and to get rid of my oxygen! The transplant team said it wasn’t urgent for me to be listed, so they allowed me to enjoy my summer which I had requested for if it was possible. Despite that freedom, my summer wasn’t as “enjoyable” as I had hoped for. I ended up needing a handful of hospital admissions with IV antibiotics and had also lost a lot of weight. Although I was very sick, I did make a trip back to Massachusetts at one point that summer to visit my family. Traveling with all my medical supplies as well as coordinating having an oxygen concentrator and tube feeding supplies delivered to my parent’s house was very stressful. Wondering if it was going to get there in time for me had everyone worried. To make the trip a little easier, I decided this would be the first time I utilized the wheelchairs at the airport. Having assistance and being wheeled through the whole airport, security (we skipped the line) made everything more comfortable. But because I was on oxygen and in a wheelchair, they needed to either take the O2 concentrator away for a few minutes or keep it on and get a full-body pat down. I chose the full-body pat down because otherwise I would be gasping for breath if I didn’t keep my oxygen on. 

When I got back from that trip to the East Coast, I had a cold that I most likely caught at some point in my travels. That cold was so awful that I begrudgingly admitted myself to the hospital while I had three friends in town visiting. They did not mind hanging out at the hospital with me, but they were also the ones telling me I should go in the first place.

The cold had turned into such a bad infection that I was coughing up stuff that looked like chocolate milk. My sister had gone on a trip and came back to a very sick Rima, not the way she left me! She would visit me every day and often slept over to keep me company. I ended up being inpatient for three weeks, and during that time we had completely changed our plan on getting listed for a transplant. While on my trip back to the East Coast, we had decided that once I was back in Denver, I would contact Minneapolis to let them know I was ready to get listed. But that was before I had gotten sick, so we had to fast track a plan. Originally, we were going to try and list me in MN while still living in Denver. We would either have to get the first flight out after receiving the call, or a med flight. Both options started to become a logistical nightmare which lead to a lot of stress and anxiety on our part. We then discussed what realistically made sense and decided we were going to move to Minneapolis ASAP. Both of my medical teams agreed that this was the best decision. Laima, being the type-A person that she is and a planner, dove right into finding us a place in the Minneapolis area. We also had to coordinate my homecare company for supplies for IVs, tube feedings, and oxygen to arrive at our temporary home before we arrived.

Once I was discharged from the hospital, Laima and I started to pack and get my car ready to drive back to MN. We made a few pit stops on our way including Mount Rushmore and the Badlands national park. The temporary home Laima had found for us was at a senior living facility. That might sound odd, but the U of M has a relationship with them allowing patients who need short or long-term living arrangements that need to be close to the hospital to rent an apartment. It was great because we could pay month-to-month or week-to-week. After three weeks of living there, we were miraculously told about a house that is specifically rented out for people in our situation. It was a non-profit called With One Breath who had donated a home to help patients with Cystic Fibrosis going through long term medical care and needed to be close to the hospital. They were our saving grace. Once we met the amazing woman who oversaw the non-profit and viewed the house, we quickly agreed that it was the best choice for our situation. We were so thankful to find this family and non-profit, and we are still very grateful to this day to have had that haven. 

Back during our senior living phase, the U of M had listed me for a double lung transplant on September 28th, 2016. I received a call on Halloween which was after we had moved into at our new temporary home. It was probably 1 AM when my phone rang, but because I had taken Ambien for sleep, I ignored my phone thinking it was just in my dream. Thankfully they called again and then I realized who was calling me! They asked me a series of questions like if I currently had a cold and stuff like that. Once I was off the call, I busted into my sister’s room, scaring the crap out of her. She thought there was a fire! We scrambled around the house to get everything ready. I took a shower with an antibacterial skin cleanser and cleaned up my room. I wanted everything to be ready for when I got home so there would be nothing to worry about. At the same time, Laima cleaned the whole damn house which goes to show how bad my lungs really were. She also didn’t want to stress about it after I got my transplant, there would be more important things to do. 

We headed to the hospital while it was still dark. We came through the Emergency Room because it was after hours, and then was quickly brought up to a different floor. My room was so busy with people coming in and out, taking blood from me, EKG, blood pressure, bringing me down for X-rays, and some other necessary tests. Time was moving so fast! They also handed me my first dose of anti-rejection medications that I threw back just like I had done with all of my other pills because I was ready! We ended up waiting for so long, and they kept pushing the OR time back because the donor lungs hadn’t arrived and still needed to be evaluated. Finally, after over 20 hours, they came to bring me down to pre-op. There, they went over some last-minute things before wheeling me away to the OR as I waved goodbye to Laima. To be continued…                                                                                                                                                                                                                             

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Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.