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

Backtrack for a second

Backtrack for a second

So a little back track to the last 4 weeks. Three weeks ago I was finally able to go home from the hospital after three weeks and two days. My PFTs didn't move up from 19% at that point and I was not going to let that keep me from going home. They agreed to let me go even though they didn't really want to because they're paranoid I'm going to get worse again. But, I'm not fully free, I'm still on IVs. This past Tuesday marks 5 weeks being on IVs and will still continue in Minneapolis. 

The last week I was in the hospital Laima and I had a few adventures. Everyday I would check the air quality with an app I have, called State of the Air, its by the American Lung Association. It tells you the ozone and the particulate pollution and whether people in sensitive groups such as myself should limit themselves being outdoors (maybe I should construct myself a bubble..). If it ended up being really crummy then we wouldn't go outside. But if I was desperate then I would just wear my mask outside. Such as when my brother came to visit and we had a little sushi date in the courtyard. On the days of nothing holding me back, I would make my great escape. With Laima as an accomplice, we would make trips to City Park which is only about a mile away. Sometimes we would go eat somewhere (please sir can I have NO more hospital food)!

 Sushi date with the broski

Sushi date with the broski

The farthest trip so far that we've made was to Boulder on Labor Day...we were only able to make that trip was because I had gained an additional hour of freedom. In Boulder we had made plans to meet up with one of my best friends Kate, since she lives there. I decided that I wanted to have a picnic at a spot partially up Flagstaff mountain. Luckily there was one parking spot open just for us! Not too far down the dirt path next to some large rock formations there was picnic table, but we decided we wanted to sit on blankets on the ground since the table was in full sun. We had quite the spread! Laima had gone to Trader Joes, her most favorite store ever and got some cheese, grapes and charcuterie for a cheese plate. She also got hummus, veggies and crackers. Kate had made orzo salad and brought apples to eat with peanut butter and honey. Of course a yellow jacket found us...I hate bees! It's like ants at the picnic, but bees! Which is worse!

 Picnic spread

Picnic spread

Since being at home, I was still struggling. Pretty slow moving about, needing naps here and there, I'm a part sloth I swear. I wanted to do/see people as much as I can before I left but it was tricky. I also wish I could have indulged in all the craft breweries out in Colorado before I left but I'm still on antibiotics and I want them to actually work. Technically I'm not supposed to drink after transplant... Two Mondays ago I had a follow up appointment at National Jewish Health to do PFTs and see my doctor. My PFTs surprisingly went up a little, they went up to 20-21%!! Woo!! I'll take it! But it's confusing because I didn't feel like they were better. I also was able to gain some weight, couple pounds!!!

 Air quality App

Air quality App

Last week I had one last follow up appointment before we left. My PFTs went down again to 19% and lost some weight too...(wahhhhh! sad face). It's probably from the stress of before leaving for Minneapolis. Trying to get set up for another state is a pain in the ass. My o2, the tube feeding supplies, IV supplies, prescriptions to make sure I would have a specialty pharmacy that would work. I needed to makes sure I refilled basically all of my prescriptions before leaving because there are always issues when using a new pharmacy that I haven't been to. Then there was all the packing. Because of the fact that we were moving before the transplant I needed to pack a bunch of my CF stuff that I need now but will not/probably need after. Moving sucks, anyone who says they don't mind it is a liar! Fibs and lies! 

 Kate and I    

Kate and I 

 

New city, new perspective

New city, new perspective

The update of updates

The update of updates