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Rima's take on the evaluation

Rima's take on the evaluation

So Laima is making me write this post. She told me to write a post on my view of the transplant evaluation. She strongly suggested that I put down in writing my thoughts, feelings, and emotions aka my take on last week. When I say strongly suggested, I mean she shoved her laptop in my hands and made me go to my room and write this. I told her it was going to sound  like a bunch of complaints, but she said people would want to know my side of how it went. "Truth comes in all shapes and forms. Not everything can be as happy as a clam." Laima trying to be Yoda.... 

So here's my take on the transplant evaluation week...welp let's see. It was a week with a full schedule everyday. All of the days besides one we had to wake up super early. The first day started with labs, so I couldn't eat or drink anything. I don't mind blood, I don't mind needles, so this was easy peasy lemon squeezy. The only part I was concerned with was whether one arm would be able to supply all the vials that needed to be filled. Once I saw all the vials when I sat down I thought to myself  "damn I should have drank more water...." (whoopsie). Surprise...surprise, my left arm ran out. Onto the right! Once the labs were done they wanted to do a glucose tolerance test. They wanted me to drink a super sugary drink. It tasted like flat warm orange soda with extra sugar in a short amount of time.  Pretty gross actually.  

  Before the blood bath...

Before the blood bath...

Later on they needed to do a bunch of imaging, Dexa scan and X-rays. "Just stay put and don't move! Hold your breath, okay breathe". Now for the transplant support group. Completely different building so we had to rush there because our schedule got screwed up.... Basically it was a room full of old people. Okay I guess not everyone in there was old, just older than me, by like 30 years though. There were mostly people who have had transplants done a long time ago. A few recents and one really recent within 7 weeks out from getting a transplant. Most of the people there received a transplant because they had COPD. Which means they use to be smokers. Sorry no sympathy for them, or for anyone who smokes and is having medical issues. Like just don't smoke, damn it! If anyone I know smokes, I know you've heard me scold you before that you should quit. I will always preach to stop smoking.

  Hallway ninja

Hallway ninja

By the time that meeting was over I was starving so we went and had lunch in the cafe before we headed back to the first building we were in for an appointment with my future pulmonologist. That appointment ended up being about two and a half hours of listening to the rundown of pros and cons of a double lung transplant for a CFer and us asking him like 500 questions. Within the first 10 minutes my eyes started to glaze over because I was super tired from waking up early and because we had just eaten lunch (food coma). Luckily I had a can of  Guayaki yerba mate in my bag (one of my favorite drinks and like the only caffeinated drink that works for me). Once we were done with that we had one more random appointment and then we were home freeeeee!

Tuesday was another early day, starting off with being injected with a radioactive material. I don't remember ever having this test done before. The syringe was kept in a lead tube like container to protect the technicians handling it. In order to do this test they had to put in an IV in my arm. I haven't always had the best luck with getting IVs put in, so I guess my arms and hands are a little shy. Luckily there were no issues and it went in wicked easy. The next few tests I've had done many times before. The echocardiogram and cat scans of the chest and sinuses. Next was transplant class with Megan the pre transplant coordinator as well as two other patients with their caregivers. I felt like I was back in school again, sitting in a room with a projector screen and video clips about transplant, while following along on a guideline. Yeah, I'd say we learned a lot... Enough to make our brains into squished grapes, like those grapes in large buckets being stomped on for wine, yeah those were our brains. So many things we'll have to worry about pre and post. So many things to remember. 

A few more things after class and then it was time for PFT's and the six minute walk test. If I had a quarter for every PFT I've done in my life... I'd have a very heavy sack of quarters. Along with these PFT's there were a few other lung volume tests. One of them I had to inhale some carbon monoxide...weird right? Anyways that was the one test I had to redo so many times because for some reason I couldn't for the life of me get the timing right with not inhaling too deeply or else a valve would shut. But there was only a certain amount of times I could redo this test because of the whole inhaling of carbon monoxide.

Wednesday was the only day Laima and I could "sleep in". I still had to wake up earlyish because all my nebs and chest PT takes for f***ing ever!!! Wednesday was the heart cath. I already went into detail for this test last week, so I'll spare me repeating it all again.

  FREEDOM!

FREEDOM!

Thursday morning came way too soon.  Earliest day of the week, had to be there by 6:45am, therefore I had to wake up at around 4:40am to start my nebs...and I wasn't allowed to eat! This was the gastric emptying test, which was to see how fast my stomach digested a meal. A meal which they provided, of radioactive scrambled eggs and toast with jelly on it. They usually schedule it as a four hour long thing but my stomach (still a grape, almost earl) digested in about three hours. At each hour they take an x-ray to see where in the stomach the food had gotten to. The first hour I took a nap. Once that was over we went to a random appointment, then one with the ears, nose and throat doc. I was pretty excited that I didn't need to spray an awful tasting spray in my sinuses. That spray, I think its called Afrin or something, it's a numbing spray for the sinuses to make the process of looking deep in the nose not painful. I'm having sinus surgery soon so they didn't need to go all in depth with an examination since we already knew they're inflamed and stuffed. The following appointment was with the social worker. Very important. Laima and I basically asked her how people afforded things and what people did when they were from out of state and where people stayed. Laima has been my scribe the entire week as well as my info paper holder and business card collector (woohoo!). Another super important appointment was with the nutritionist. Nutrition is extremely important for transplants. I need to stay above a certain weight to even get a transplant. The more weight I gain the better (Laima's goal is to get me chunky). We got a lot of good information from her. A lot of  "do's and don'ts". I'm quite sad that I won't be able to eat sushi anymore (insert sad face emoji here, insert tear face emoji here). 

  Just chillaxin

Just chillaxin

Last and final day! Yayyyyy! We had to get up fairly early to pack up our stuff and tidy up before we left the Airbnb. First appointment of the day was with the pulmonary rehab lady. She went over why staying active before a transplant is so important (Boston Marathon here I come...ha!). After, was a meeting with the transplant coordinator to go over all the tests and what not. I kept bugging her even though I know she couldn't really give me a real answer on what my transplant score was (oh well, I can only hope). The last appointment of  the day was with one of the thoracic surgeons that possibly could be doing the surgery.  She went over the dangers of the surgery and how they do it.  A quick EKG and then we were free to leave! Outward and onward back to Colorado we go! Laima of course needed some Chipolte before we left on our 13 hour drive. 

  Dirty looks and flower crowns

Dirty looks and flower crowns

May is CF awareness month!

May is CF awareness month!

Winner winner...where's my chicken dinner?!

Winner winner...where's my chicken dinner?!