Rocky Mountain Way or No Way at All: A CF Journey

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The night of my going away party, for my upcoming move to Colorado which I had been dreaming about since my early teens, I became extremely out of breath. No amount of Duoneb, which is a super form of albuterol, was doing a damn thing. It was time to go to sleep, but I just couldn’t catch my breath. I was worried and anxious that this was happening. Luckily, I had a portable oxygen concentrator, but even that wasn’t helping much. I had one of my friends wake up my sister, Laima. We immediately planned for me to go to the ER in Boston. When I got to the hospital, I was put on a high amount of oxygen, upwards of 15 liters as I recall which is a stark contrast to 1-3 liters of Oxygen they typically start patients on. It took a while for my breathing to slow down. The next few days in the hospital I was exhausted and stressed out. My doctors set up a conference between them, my mom, and my sister.

They talked about the realities of how sick I was and what my plan was because I was still intent on moving to Colorado despite the risk.

They agreed I could move as long as I found a transplant center ASAP and got myself on the transplant list for new lungs.

Closeup of Rima's (and Liama's) tattoo which sports her CF markers.

Once I was in Colorado, and on full time oxygen (3 liters), I contacted my local transplant center and set up a meeting. The appointment appeared to go great, but the following day, they called me to tell me that they had changed their minds… they didn’t realize how resistant the bacteria I had growing in my lungs was. It wasn’t anything crazy, but the pseudomonas that had colonized in my lungs was resistant to allot of antibiotics. They said that if I was to get an infection right after transplant the outcome would not be good and that they basically didn’t want to take the risk. The risk, meaning that if I was to not do well with the transplant and die then that would affect their overall success rate nationally.

Thank goodness for my sister, who decided to become my caregiver. She did a lot of research into the different transplant centers and her and her friend came up with the U of M in Minneapolis which is where I ended up.

Fast forward a year later…I woke up in a dim room, super groggy, sore throat from the breathing tube that had been put in. I felt someone near me so I asked if I had gotten new lungs, and they said no…not thinking that I might be in some pain waking up from surgery, I assumed I may have gotten my transplant. I was quite upset that it didn’t happen. Laima and I definitely had gotten our hopes up even though we told ourselves not to.

It was a dry run. A dry run is when you get the call that the organ you are waiting for has arrived but for one reason or another it gets canceled. And unfortunately for me the decision to cancel happened after I was anesthetized and intubated. Another unfortunate thing that occurred was being intubated stirred up some stuff in my lungs and had caused an infection causing fevers. At that point I was at 16% lung function and putting someone under anesthesia with that level of lung function can be risky, meaning that the lungs slow down during surgery and so it’s hard to wake up the lungs again and have them oxygenate again, the person might not be able to be extubated. Within a week I was admitted to the ER due to the fevers that signaled an infection which I spent the next three months in the hospital recovering from.

Several months later, I received a second call on April 1st, which was fortunately called off just seven hours later before they had a chance to intubate me. We had learned our lesson from the first dry run so we didn’t get our hopes up that time. But of course, it would occur on April Fool’s Day, Why…because the universe had a sick sense of humor.

After eight months on the list and two dry runs one of which cost me three months in the hospital, I received the third and final call. This time, being rolled down the hallway towards the OR, I was crossing my fingers that it wasn’t going to be another dry run while waving goodbye to Laima. I counted back from 100 and then I was asleep. When I woke up it was very obvious that I had finally received my double lung transplant, on Mother’s Day. Breathing for the first time with new lungs was not as glorious as it would sound. It felt like there was an elephant sitting on my chest for the first week but knowing I had new lungs and that the surgery went well made me forever grateful and so so happy no matter how I felt.

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Rima currently lives in Colorado. 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. 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.