Check out the below links to learn more about Cystic Fibrosis, organ transplants and how to become and organ donor! 

Cystic Fibrosis Foundation

Transplant info

Become an organ donor

Life's fast, move with it

Life's fast, move with it

Continuing on from the last blog post. We were leaving for my transplant clinic appointment and bronchoscopy in Minneapolis. We were driving there in one day, about 14 hours. We left around 4:30-5am and watched the sunrise on our way. One thing that broke up the trip was that we picked up one of Laima’s besties Kim, in Iowa at the airport. So we had a nice little road trip buddy. The drive seemed extra long for me because the day before I had to do one of those Neupogen injections and so the pain from that made sitting so incredibly uncomfortable. I was squirming around like worm in the front seat. Had my feet up, had my feet down, sat cross legged, and in every strange way. I was going bananas! We didn't arrive until about 8pm. I had Laima make a pit stop at Mcdonalds. Yes, I am ashamed but hey when you need weight asap thats where you go. 

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The next day I had my clinic appointment. It was early and I didn't want to get up. It felt nice to be horizontal after sitting like an ever moving pretzel. Labs, x-rays and pft’s and then an appointment with my transplant team. We were nervous because my weight was quite a bit down, like ten pounds down which is no bueno. They definitely weren't pleased and of course gave me a talk about how I REALLY need to gain back the weight I lost. As for all my funky levels and feeling weird they wanted to run a bunch of labs on me to make sure nothing weird was going on. The bronchoscopy the next day would tell us more.

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My bronchoscopy the next morning was at 9am so we had to be there an hour before. It was nice that they were pretty much on time this time. The bronch before that one they were running pretty late so I was just sitting there forever, and I also felt pretty crumby after. By crumby I mean as in migraines and nausea, so I was a bit nervous that I was going to feel that way again. Luckily I did not feel like poo after this bronch, just a sleepysaurus for Laima to deal with. That evening we had an invite to go over a friend’s house and help “cleanup” pieces from a skinned deer that Kim’s hubby had shot. We can say that was our first time doing that and we didn't really mind. We even got to try some for dinner. I had to have them cook my piece a little longer since I can’t eat pink meat. That piece of venison even tho it had to be cooked longer than recommended for venison because of taste; it was pretty damn good.

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There were a few other tests that the team wanted me to get done due to random symptoms that I had. The first was an ultra sound because of my legs. I had been have strange very uncomfortable pains in both my legs for a few days and they wanted to make sure it wasn't a blood clot. The second was not a test but just something that I had to drink due to having high potassium. It’s called Kayexalate. It’s not the most pleasant tasting drink to most people but to me it was whatever. I guess I would compare it to if someone had made a smoothie out of cherry Rolaids.

Anyways, no one told me about one of the things that it does. Not my doctor, transplant coordinator or the pharmacist when I went to go pick it up. Not until one of my CF transplantee friends said to me, “yeah make sure you're near a bathroom”. Um excuse me? What do you speak of…? She's like yeah you don't want to shit yourself… ha! Um, okay thanks for telling me everyone! So apparently Kayexalate moves things along and makes to have to go to the bathroom. Of course after this point I’m paranoid that I'm going to have bathroom emergencies all night. Well I didn't end up having any which I guess is weird. The third test they wanted me to do was an MRI of my brain due to the persistent headaches I had been having for the past month or two. Prograf can do some weird shit and I'm not down to get weird with Prograf.

A few things that we did get done while we were there was find Laima an apartment and get her a vehicle! A car of her very own and so we didn't have to share anymore as much fun as that was, plus we’d be in different states now. After my last appointment with the clinic we were allowed to go back, which they had requested to see me one more before we went back to Colorado. During the drive back I had decided fuck this shit, I didn't want to drive to the next appointment, I was gonna fly!

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Thanksgiving was the next day after arriving. We were invited to go to our “god parents” house. They have been family friends since I was a wee baby. Connie went to nursing school with my mom, and that's how I had originally fallen in love with Colorado by visiting her for my first time in middle school and then almost every spring after that.

It was only a few days later that Laima was pulling a box truck in the driveway to pack up all her stuff. It was happening all so fast, my momma bean was leaving me, well not completely. I was going to see her about every two months and be staying with her. Her plan was to leave early Sunday morning and by early I mean at 3am. This time changed so many times, so anytime she would tell me what time she was going to be leaving I would just go uh huh… finally departure time ended up being before 12am. She had taken a nap prior. She didn't want to be driving too late in the day and unpacking the truck in the dark so she figured to drive through the night.  As I watched her box truck pull off down the street into the night I knew the next chapter of our lives was starting. 

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Flying high

Flying high

Catch up or ketchup?

Catch up or ketchup?