Currently, mountain time.
As I write this I'm sitting in a bedroom in Colorado. I've been living in Brooklyn for almost the past four years. I moved here Tuesday afternoon after a long but not hard decision of relocating to be with my favorite person ever. Rima, sitting in the other room, charging her oxygen machine so we can go see some wild buffalo at the nature preserve. After not living in the same zip codes or time zones over the last nine years, I'm finally able to spend all the time in the day with her. No more phone tag or missed late night texts because I'm two or three hours ahead or behind her. No more looking at social media to see what her new hair cut looks like. No more just seeing her for a few days every four to nine months. No more feeling helpless when I hear her cough. No more being frustrated about not being able to visit her in the hospital. No more feeling like a bad sister. No more.
At twenty eight I've inhabited more cities than most people can say they have at the age of sixty. Clearly I love change and thrive on new experiences. I've collected amazing friends from the windy city to the cali cost and back to the empire state. I've had countless adventures and accumulated one of a kind stories. To say that I've led my life so far with laughter and great times, would be close to accurate. It's time that I'm able to be a part of Rima experiencing all this and more in her new home in Colorado.
A brief synopsis of Rima's history: Rima, a twenty six year old animal loving enthusiast, jokester,green thumb, cheese connoisseur, Cystic Fibrosis fighter. Born with Cystic Fibrosis (CF for short) a genetic disorder that affects the lungs, pancreas, liver, kidneys and intestines. She has been in and out of the hospital all her life. Taking more than 30 pills a day, countless nebulizers and physical chest therapies. She has not let this disease dictate her life as best as she could. She's traveled to Costa Rica, held a baby Margay, zip-lined through the rain forest, driven across the country, played with stingrays, camped at the Grand Canyon. I could go on and on but I'm sure you get the point. She is a fighter and a passionate being.
In the last year a few large life events have set current reality into existence.
- Rima and Dennis (her amazing boyfriend) decided to say goodbye to the east coast and move to Colorado.
- Rima's doctors informed us that her health is at the point that she needs a double lung transplant, within the year (this was in December 2015).
- She has certain bacteria or "bugs" that live in her that make the aftercare of a transplant tricky and not every transplant center is capable in giving her the care she needs.
- Having limited transplant centers has made planning for the before and after care quite difficult. After lots of research and help we landed on MNU in Minneapolis Minnesota.
- Regardless of where she gets the transplant, having a trusting and reliable support system is key to a successful outcome. Knowing this, the decision to move to be with Rima wherever she receives the transplant was without question.
So after countless phone calls, hours of planning, packing up my belongings in a shipping container, and a one way flight, I'm here in the rocky mountain state ready to kick this adventure into high gear. There is so much up in the air. When the transplant will happen, where we will live, how long we will be there for, what’s covered by insurance, it goes on and on and on. I’ve spent hours researching double lung transplants, pros, cons, what to expect, what to do and what not to do. Shockingly there is a limited amount of information about this subject from people and families who have gone through the journey. I started to get frustrated with all my unanswered questions. I turned to the Cystic Fibrosis Reddit community and asked them what to expect before, during and after the surgery. I never expected the outpour of information that followed the post, hours and days after.
The majority of the responses were from CF patients who had gone through the process once, sometimes even twice. Nothing was sugar coated. Questions were answered, reality set in. This was going to be the hardest thing we had ever gone through and probably would. I regretfully read the posts during work and had to escape to the restroom a few times to hide my tears. Even though all the information was scary, almost all the survivors who responded said that their quality of life was exponentially better. After the surgery and recovery Rima will be able to go hiking with me and keep up!
When talking to my friends about moving and putting my life on pause to go take care of Rima, writing was brought up. Documenting what we were going to encounter, to create a space for firsthand information that would be available to other CF families. But, also to inform and spread awareness to people who are outsiders to all of this. I realized after having the same conversation with almost everyone that the transplant world is pretty unheard of, unless you or someone close to you has to get one. I also found out that a majority of my friends were not organ donors! (tsk, tsk!)
So, after touching base with Rima, we have decided to start a blog together about this whole messy, unexpected, crazy quest. Our goal is to document all the good and bad that we encounter (mostly good, we laugh too much). We don't want this to be a sob story or a pity party. We don't want this to be a depressing part of your day. We don't want people feeling sorry or sad for us. What we do want is to share what we experience and learn about through this whole process. We want to share our story with you. We want to update you on the day trips and adventures we take here in Colorado and other states. We want to break down the stereotypical medical blog persona. Like I said we laugh too much, Rima often ends up in coughing fits after. We love trying new things and going out into nature. As corny as it sounds we love living life and we refuse to let CF or this transplant get in our way.
With this being our first post of many, we welcome you into our new life here and what's to come through large french door windows, with mountain views. In two weeks we go to MNU for a week for her transplant evaluation. We will get answers to hundreds of questions, most importantly the question of when it will occur. They can't give an exact date or time, but they can estimate. We will then move forward from that point. Until then, my goal is to have as much fun with Rima here in Colorado. Fattening her up with home cooked meals, getting her body in better physical shape for the surgery and also laughing with her, even if we both end up in a coughing fit.