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Cystic Fibrosis Foundation

Transplant info

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Doctors & Dough

Doctors & Dough

Wednesday was an interesting day. It had it's ups and downs. Rima, was going to get her vest. A vest that would shake her and help her breath better. In her, *Hi there, I'm Rima* post she wrote about getting chest PT, which is us beating on her back to loosen up the the phlegm in her lungs. This machine, the vest, is going to do it for us. Unfortunately the company sent her a vest that was too small for her. Shocking, I know. Her rib cage runs larger than most people her size. As small as Rima is, our rib cages are pretty much the same size, I swear!!!! This is how I get away with eating 4 pieces of pizza. "Oh, it's okay Rima and I fit into the same shirts, sometime!!" Yeah, normal sister stuff. 

  sputum sample...grosssss

sputum sample...grosssss

She is getting a bigger size this Friday. Which is perfect because we leave Sunday for a week for her transplant evaluation. Get ready for a week of fun posts, us harassing doctors and running around hospitals. After the vest issue we headed to National Jewish Hospital for her doctors appointments. This was my first doctors visit I've been a part of since my move to CO. Let me tell you it's quite different from Children's Hospital in Boston. First of all, there is a parking lot right next to the hospital area...no crossing a busy street or driving up five cramp floors for a spot. 

Entering the hospital is something else, people greet you almost immediately and ask for your name to check you in. Strange I know. Rima, has to wear a mask when in a hospital and should not or can't touch any chairs or doors or really anything in a hospital. Germs are everywhere. So instead of sitting in the 20 seats they had open, we waited on the side, secluded. This is when having a private room works in your favor which apparently they don't really do in adult hospitals. Her name was called and Rima checked into wait again, in a larger waiting room with more "dirty" humans. We waited on the edge again leaning against a wall for twenty minutes. Rima was getting hungry at this point and I was tried to offer her solutions to her hunger , but to no avail.  She can be very stubborn sometimes.  

  What they use to clean rooms before Princess Rima enters them. 

What they use to clean rooms before Princess Rima enters them. 

Finally her name was called, incorrectly, Reeemaa? You mean Rima and no we're not Greek, do we look tan? I F*ing wish... We had to wait a bit longer till a "room" or a partition of one was wiped clean. Due to germs being a huge issue, all of the rooms Rima enters into a hospital need to be sanitized. Once the area was cleaned and the curtain was shut she could take off her mask. She did a round of PFT's which are pulmonary function tests. This is a test that measures her lung function and how well your lungs work. This includes how much air she is able to hold in her lungs and how well she is able to breathe. It measures how much air she can expel in the first second. Her numbers were between 24 - 21, she did the test 5 times. The first one doesn't really count, just a warm up. Her FEV1 number had increased about 1-2%, the FEV1 is the number that is the first second when blowing out really fast after a deep breath in.  So in the end 23% was the highest out of the 5.

  PFT time!

PFT time!

After, we were let into another room after it was wiped down to meet with her social worker, doctor, nurse, and dietitian. All were super nice, so friendly and helpful. We discussed transplant stuff mostly. Questions we would ask MNU when we are there. How the day's would go there and all that jazz. Her social worker then threw us a little curveball. She pulled out two booklets, Five Wishes. I had no idea what those booklets were. She then explained that Five Wishes is a living will that lets a person plan out how they want their health care decisions made. Basically Rima needs to pick one person to be her health care proxy. She also needs to go through the booklet and decide what she wants to do if she ends up on life support, can't make decisions for herself, or is no longer here. That conversation sucked. I hated every minute of it. 

  Not sure how Rima or I  feel about these books.....

Not sure how Rima or I  feel about these books.....

  Some high calorie drinks for Rima from the Dietitian

Some high calorie drinks for Rima from the Dietitian

Some positive things that came out of the appointments were that Rima gained some weight and she is super close to being able to enroll in a medical study that could potentially help her lung function.  After all was said and done we had been at the hospital for around 3.5 hours. For dinner, Rima made pizza dough the night before. We created three yummy pizzas. 1.Sausage, onion and arugula. 2.Tomato and basil. 3.Broccoli and onion. We have leftovers for days! 

  Dough and wine

Dough and wine

  Sausage pizza time!

Sausage pizza time!

  Tomato and basil

Tomato and basil

Go away snow, we have an early call time!

Go away snow, we have an early call time!

Flagstaff

Flagstaff