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Cystic Fibrosis Foundation

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Flying high

Flying high

The time in-between my last two month appointment was spent trying to gain weight back, getting rest so my body doesn't freak out again and hiking. My transplant team strongly suggested that I “take it easy” and not go overboard with doing things. By that, they really meant don't go hiking and adventures every single day. Hmmm okay I guess I could try that…

 Three sisters trailhead in Evergreen

Three sisters trailhead in Evergreen

 Eldorado Canyon state park

Eldorado Canyon state park

Gaining weight had been a slow struggle. I was mostly maintaining with a few small gains around Christmas but then lost it right after and was not able to gain much before my next two month transplant clinic and bronchoscopy appointment in Minneapolis. 

I did meet with the transplant team here in Colorado at UCH. The same place who didn't want to do my transplant originally. They wanted to be able to have me as a “patient” just in case anything was to happen they could take care of me properly since I go there to get labs done. It’s so funny the difference between transplant centers. I definitely prefer the U of M in Minneapolis without a doubt. But hey, at least I have someone here for just in case. 

The past two months went by pretty fast. My week with transplant clinic in Minneapolis has just ended and I just flew for the first time since transplant. Before flying last week to Minne I was pretty nervous/ paranoid just due to the whole germ aspect. This flu season is one of the worst so far. People have been popping into the hospital left and right for it and dying too, so clearly I’ve become a tad germaphobey.

 germy security line

germy security line

I even ordered airplane seat covers. I’ve seen other transplantees use them so I wanted to give them a try and see if it’s even worth it. I also had lysol wipes with me in a travel pack that I used to wipe down anything else I would touch. Those tray tables are just NASTY, dirtier than a toilet... just sayin. Along with that I wore a regular yellow hospital mask and then my vogmask on top of it as well and then lastly I had my hand sanitizer spray and alcohol wipes for my phone. Call me paranoid, over prepared or just a little crazy, I don't care! At least I won't be the sick one. People sitting in the row in front of me coughing, people in the row across and behind sneezing. All the air on the plane is recycled air... we’re all sharing the same shit.! So I'm not risking these shiny new lungs and your welcome for maybe now making you a little germaphobey.

 The airplane seat cover

The airplane seat cover

My flight to Minneapolis arrived around 10:20pm and on the way home I once again made Laima make a pitstop at Mcdonalds. It’s just going to be a common pitstop until I gain some pounds. The next morning we had to get up early for labs, x-rays and pft’s. When it was time for my pft’s (pulmonary function test) to check lung function and see how my new guys are doing, we were both surprised at the numbers I blew. Ninety fucking five!! Like whaaaaat!?! I don't remember ever being that high. Probably when I was a wee little child. So that was a very unexpected pleasant surprise. My weight at the pulmonary lab was about 125 lbs. I was trying to get to at least 130 beforehand but was unable to. Preferably my team wants me at 135-140lbs. My appointment with the team wasn't until about 2pm and we were already done before 9am so we went back to Laima’s place. Conveniently it’s less than 15 minutes away so I of course headed straight to bed for a nap. 

 Labs

Labs

 Pft's (pulmonary function test)

Pft's (pulmonary function test)

My appointment went pretty darn well considering. Since my pft’s were so good and I was feeling pretty good my doctor said I could skip my bronchoscopy for the next day! I was pretty surprised about that and quite excited. Another reason he wanted to skip it was because of my B.U.N and creatinine. Apparently having a high B.U.N is a bleed risk during the bronch. He said if I was to start bleeding inside from the biopsies it could not stop and I could bleed into my lungs and have them fill up…so yeah he decided against that risk which I appreciated.  

My levels were the highest they have been so far. B.U.N was 60 which normally it should be around 20 and below. My creatine which is kidney function was 2.7 and normally they like that level around 1 or "belowish". It probably didn't help that I flew the night before and was clearly very dehydrated. After my appointment we headed straight to the store and got gatorade, juice to mix with water and Pedialyte. The transplant coordinator wanted me to drink at least four of my blender bottle amount in fluids. All this fluid was not helping my appetite situation. Not at all. 

IMG_4227.jpg

One thought to why I was having trouble gaining weight was my blood sugar, so they scheduled me for a glucose tolerance test the following morning. Laima and I got there on time to the second floor, which we normally never need to go to and end up waiting quite a long time. Once we got to the back I was confused as to what they were doing. They wanted to just take one vile of blood for a “glucose test”. I clearly remembered my doctor saying I needed a glucose tolerance test which consists of drinking 10oz of a 75 gram sugar orange drink, which by the way is fucking awful. So I was like wheres the juice!?

The nurse said that all that was in the schedule for me was just getting the labs and that's it. I was confused and annoyed. We both were. So as soon as we got to the lobby Laima left a voicemail for the coordinator since mine was on vacation. They called me back a little while later and didn’t actually know themselves even though they were the ones to tell the scheduler what to schedule the day before. They eventually got back to me and said “someone must have scheduled it incorrectly”. Yeah no shit. So he was like don't leave without getting this test done. I was finally on the schedule to get it done Friday morning. What if my flight was leaving that day or even before that?! Well it wouldn't have been my fault or problem, anyways sorry for the slight rant. 

Friday 8am glucose tolerance test was on and correct this time. I was so sleepy I told Laima she could just leave me there since I had to stay for two hours and have them take blood from my portacath every 30 minutes after drinking the Glucola. They have reclining chairs and hot blankets so I was all set and ready for napville. Now the drink., to describe this drink to people who have never had to do it, its very unpleasant, and I am not over exaggerating when I say how awful it is. Most people agree with me. It doesn't sound like it would be too terrible to drink a sugary drink but it is. To chug 10oz of 75 grams of orange flavored drink in under 10 minutes is puke inducing. It just sits there in a place where it makes you feel so uncomfortable you want to hurl it all up but you can’t. If you do then the test is ruined and you'd have to either reschedule it or drink more depending how much you puked. I luckily was able to keep it down but the first hour was unpleasant. I mean yes, there are plenty of other awful things out there but I just felt like sharing, so people would know what to expect.

 At Minnehaha Falls

At Minnehaha Falls

 Koldunai

Koldunai

 Kimchi enjoying her first Koldunai, Lithuanian dumpling experience

Kimchi enjoying her first Koldunai, Lithuanian dumpling experience

That evening Laima had some friends over for dinner and she made Lithuanian dumplings (koldunai) and the topping of diced onions, bacon and mushrooms. None of them had ever had them so they were all pleasantly surprised by how much they liked it. Definitely food not for people on a diet. The next morning was my turn to make brunch. Kim, Laima’s bestie came over because she's been wanting to try the dutch babies I make. Also known as David air pancakes, which is like a baked pancake with apples on top but a different texture than pancakes. Each person gets a whole pie pan to themselves so I made three. I obviously was unable to finish mine, gilbert the grape my stomach was not having it. Later that day Laima and I went to some of our favorite places around Minneapolis. We stopped by Minnehaha falls because I wanted to see them completely frozen. After we went to our favorite place to get Kombucha at Gyst fermentation bar. That evening I had to pack because I was flying out the next day. For the first time packing up was a quick process! It helps to only have a carryon bag and no crazy amounts of medical supplies.

 Dutch Babies

Dutch Babies

 Frozen Minnehaha Falls

Frozen Minnehaha Falls

Captains Log, Mars

Captains Log, Mars

Life's fast, move with it

Life's fast, move with it

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