Destination, collaboration
Our new trend is only posting once a week or so. I wish we had more to post about, but until the weather gets nicer and allows more outdoor activities, or the transplant happens, this is the new norm. We really hope the latter occurs before spring time weather hits us up here. It's March and we're still waiting for the call... It's a strange sensation to know that this time last year, I was starting to pack up my belongings in my Brooklyn apartment. I was starting to set last hangout dates with friends. I was researching double lung transplants like it was my third job, which it basically was. I was so stressed out that I didn't even realize it, until after arriving in Colorado.
This was right around the time that we landed on the U of M for Rima's double lung transplant. After getting word from the transplant center in Denver that they would be unable to preform the transplant, we were left heart broken. We had been under the impression from doctors back in Boston and at National Jewish in Denver that the transplant center there would be able to take Rima. Not until after Rima moved and I had already committed to moving, did we get the bad news. It took a few days to recover from the anger and resentment, truth be told I was visibly angry for a few days, sorry old roomies! That's the thing that's so tricky about CF and transplants. You don't officially know if a transplant center will accept you till you jump through all their hoops.
Don't get me wrong, I fully comprehend the process that's put in place and followed by all transplant centers. They can't just accept you over the phone or with a doctors referral. Each center has different strengths and weaknesses. Some are better than others, some by miles and miles. We learned these facts quickly. The transplant center in Denver, excuse my bubble bursting, but it's well below the bar. How, I don't understand. Denver is home to the largest CF adult hospital in the US but their transplant center, specifically for lung transplants for CF patients is "not the best". You would think it would be at the same level as Cleveland or Duke, because of the proximity to the largest CF adult hospital. Apparently the two hospitals are not related, and the transplant center is difficult to work with, or so we were told from a few medical professionals at National Jewish. I will never understand why a center would not want to better themselves, if all it took was a little team work and collaboration.
It's really a shame that the Denver transplant center is not on the same level as others. Since there are so many CF patients in that state who will or have needed to get lung transplants, but have to go out of state. Some move permanently, some relocate temporarily, like us. Some patients are able to get transplanted in Denver but, it's because they don't have very specialized cases, like Rima. When they rejected her from the transplant program, her team at National Jewish told us that it was a "blessing". That she deserved the best and to be at a center where they had full confidence in the team. Denver, you need to work on your game, and hard, because it's lacking, and it's embarrassing, I'm embarrassed for you. Just like any normal person makes a New Years resolution to better themselves, you should do the same, and collaborate or bring in new staff from better transplant centers to improve your national standing. No, but seriously, get your shit together.
After the rejection from Denver, Rima and I were at a loss. We were not sure how to proceed. Where should we look? So, instinctively I buried myself in research. With help from my bestie Emily and her amazing Mother we landed on the U of M. Cleveland and Duke were in the running also, but there were a few ground rules with those centers that didn't tickle our fancy. For both we would have to relocate there to be listed and live close by for at least a year post transplant. That didn't go over well with either of us ladies. The U of M was close enough that we could drive there, 14 hour drive or a couple hour flight. We would only have to live close by the center for three months post transplant. We could also stay in Denver while being listed and take a med-flight to the center when the call came. All this was just what the doctor ordered!
Clearly the notion of us staying put in Denver till the call happened went out the window when Rima got sick this summer. Good thing we moved up here before she got the dry run call this fall or else I would have been running around like a chicken without a head. I would have had to fly back to Denver from Minneapolis. Leave Rima in the hospital alone, while I packed up our belongings and drove the car up north, while trying to find a place to live and tying up loose ends. We're so happy we decided to come when we did and skip the shit hitting the fan part. That's when my producing skills really come in handy, anticipating needs before you even know they exist. Getting settled in a new city before your world is turned upside down. FYI, we're still waiting for that to happen and we're waiting with open arms.
Last Tuesday was still quite nice outside. Rima and I took a little trip to Minnehaha falls. Rima had a bit of a leg workout with the stairs, which was the main point of us going. While taking in the falls and in between snapchats we noticed a young man wearing short sleeves and tropical print shorts with boat shoes. Sir, young man, where are your parents? It's not 80, it's 54. You're also not in Hawaii or Orlando Florida, like your shorts suggest. Please take your pale legs and zero traction shoes off the ice before I have to come to your rescue, because you wanted to get the "perfect insta" picture. Maybe he runs hot, or maybe he just runs stupid, we'll never know.
The following day, after Rima's pulmonary rehab class we decided to go on a bit of a street art chase. Rima and I love street art, aka urban art, aka graffiti art, aka hooligan art. For about two hours we drove all over Minneapolis peering around street corners and across intersections for brightly covered brick walls. We found some pretty cool ones. I'm not going to lie, Brooklyn and San Francisco are known for their street art, so standards are pretty high with me. It's not my fault that every day on the way to work for years I passed by some of the best street art in the country. Bushwick collective, rocked my eyes!
This past Tuesday Rima and I finally got our acts together and went to the Saint Paul Science Museum. We didn't really have any expectations, except for the Mystical Creators exhibit. All in all, the museum was nice, but, haha there's always a but with us, sorry about that. But, we both agreed that the science museums in San Fransisco and Boston take the cake. To be fair it's really hard to compete with those two, I doubt many can. This weekend Rima and I plan to go chase a couple of waterfalls around Minneapolis. No offense to TLC and all, but chasing waterfalls is pretty fun, I feel like they need to write a retraction letter to all the waterfalls that they never saw.
