Third Times A Charm

Posted by: 
Rima Manomaitis

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. Laima, my sister had to drive me in at four in the morning to the emergency room because I was having a very hard time breathing. It was scary. She drove as fast as she could. From there I was admitted for three weeks amidst my move date to Colorado. During that meeting in the conference room, they told me that I needed to find a transplant center out in Colorado ASAP and get myself on the list for lungs. They told me Boston wasn’t the best place for me for transplant anyways. I had previously been evaluated at the Brigham and Women's hospital for transplant but was ‘too well’ at the time, well before this whole health debacle.

My sister, who was living in Brooklyn at the time, would take the train up to Boston to visit me a lot while I was in the hospital. During this last admission, she had decided that she was going to help drive me out to Colorado since my health was poor and I was on oxygen. On our way out there she also decided that she wanted to become my caregiver for my transplant and the time leading up to it. She was going to move to Colorado to help me. I am forever grateful for her.

While adjusting to life at a higher altitude and my sister saving up money in NY to move, I had an appointment with the transplant center here in Colorado. It was to see if I could join their transplant program and get an evaluation. My brother, who I had moved in with, came with me to my appointment. At the end of it, they said they could do my transplant. The very next day I get a call back basically saying “just kidding” but they didn’t actually say that, they said "no." Apparently, the bacteria my lungs were growing was something they weren’t comfortable going through with transplant because of how resistant they were to all antibiotics. They said that if I was to get an infection of some kind after transplant that the outcome would not be good. Basically, I was a risk that they weren’t willing to take at the time, which is fine now, but then I was upset and frustrated.

The director back then has since retired and no longer is a part of that transplant center, thank goodness!

After being disappointed with their decision my sister didn’t skip a beat and dove right into researching other transplant centers and weighing the pros and cons. Her best friend’s mom suggested checking out Minneapolis because they had some personal experience there and said it was worth trying. Once I had a call with the transplant coordinator we scheduled the evaluation for that April! (2016). I had made sure they knew which bacteria my lungs were harboring.

There was a week-long evaluation followed by two weeks of waiting for their decision, of whether they were going to accept me into their lung transplant program or not. And it was a YES!

I wanted to enjoy my summer before needing to be listed but when does that ever go according to plan? I was in the hospital almost every month on IVs, so not very enjoyable. I got very sick after a trip back to Massachusetts to visit family and friends. That trip landed me in the hospital for three weeks and that did it. I decided I needed to get listed ASAP. The initial plan was to get listed in Minnesota but still live in Colorado but the logistics became anxiety-inducing and frustrating so in the end, my sister and I decided it would be best if we moved to Minnesota right away.

About a week after moving there I got listed! And then about after a month, I got a call, on Halloween! We waited in a hospital room for over 24 hours having the OR time moved several frustrating times. She french braided my hair, we said our goodbyes and then I was wheeled away. I counted back from one hundred and fell asleep. I woke up groggy and sore throat, didn’t know what day it was. I asked the nurse nearby if I got new lungs and she said no. That call ended up being a dry run, which means that it was canceled for one reason or another. Unfortunately for me, they canceled once I was already asleep and intubated. I was very upset and disappointed when I found out. The days following I started to develop a fever. Due to being intubated, it stirred stuff up in my lungs which made me get sick which in turn I had to go to the emergency room and get admitted. I was in the hospital for almost three months after that incident.

My second call about available lungs came when Laima and I were having a picnic outside on April first. We told ourselves not to get too excited in case it was another dry run. After my first disinfecting shower and before my second, the nurse came in and said it was canceled, luckily it was only seven hours of waiting before we found out it was a no-go, also thankful I wasn’t put to sleep or intubated.

By May we were getting pretty restless and frustrated with it being the eighth month waiting on the list (I know some people wait much longer than that). The weather was amazing, things were blooming, there was more picnicking to be had. I received another call for lungs on the evening of May 13th. We again did not get our hopes up too high and treated it like the last call. We slept at the hospital, I don’t think I actually slept. Luckily the OR time wasn’t moved too many times. I was wheeled down to pre-op once again and had my hair french braided. Said our goodbyes and away I went, hopefully for the last time!

On mother’s Day, May 14th, 2017, I finally got my shiny “new” lungs, and man it was a rollercoaster getting to that point.

I am so very thankful for my donor every day. Their selfless gift has given me a second chance at life. This is why I am so passionate about organ donation and educating others on the importance of signing up to be an organ donor. You could save a life, like mine!

 

Help Others Live STRONGER and LONGER- 

 

Rima currently lives in Aurora Colorado and has become an avid hiker and snowboarder post-transplant. She received her double lung transplant in May of 2017. Now with the ability to breathe without struggling, Rima is able to do all the things she couldn’t before. Camping in the middle of nowhere without needing breathing treatments or the vest is one of her favorite activities. She graduated with a bachelor’s degree in Environmental science from Franklin Pierce University in Rindge NH. Rima is an enthusiastic advocate for Cystic Fibrosis. She has been involved with the Cystic Fibrosis Foundation for years, she’s even on the advisory board for the Rocky Mountain Chapter in Denver. In her spare time, she spreads awareness online through social media accounts to educate others on cf and post-transplant life. Rima is also a pizza enthusiast and enjoys making pizza from scratch and trying random crazy toppings sometimes.

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

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