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

Third weeks a charm?

Third weeks a charm?

Going onto week three now! This week the CF team of doctors decided I should stay another week. I did PFTs on Tuesday after skipping them the week before because I actually started feeling worse last week. They switched around my antibiotics a few times and I think this "cocktail" seems to be working a little. I'm definitely feeling better than last Wednesday. Some days are better than others. They started decreasing the steroids again. They tried last week but I started to feel worse after they lowered the dose. I am now on 20mg IV twice a day. During this admission I've had a few times that I was coughing up a lot of blood. Luckily it stopped shortly after it started and did not continue. When it happens it's quite random. I can feel it coming because of the rumbing/gurgling feeling in my lungs. Then blood seems to basically "pour out", I have to cough because I can feel the liquid in there. After it feels like my lungs are burning. The doctors freak out because it definitely can become bad very quickly. They're very cautious which is good I guess... They had me get a CT scan of my lungs last week to make sure nothing major was going on. In the CT scan it only showed condensed areas of infection. If the blood was to not stop "spewing" out then they would consider embolizing me. Which means that they would need to go in and embolize the cause of the bleed. Basically kill off a part of the lung. This is something  I can't afford right now because I already have a very low lung function, and this process would decrease it even more.

Since Laima has come back I have been getting out a lot more. The week before she came I had barely left my room do to feeling crummier after starting to initially feel better when I first came in. We've had some lovely adventures (shhhh...we're not allowed to escape). I mean we sometimes stick around the area we're allowed to wander in outside. But then I'm like "naaaa let's go for an adventure" and we secretly go elsewhere. One of our adventures consisted of driving around neighborhoods nearby that have some very nice homes. Some of them I'm like "what!?! where are we?" Laima and I always wonder! We have the urge to go up to people while they're getting out of their cars or in their yard and ask them what they do for work to be able to afford living there! We absolutely stumbled upon a castle like home that was huge but also difficult to see/get a picture of. They have a tall stone fence around the entire perimeter of the property as well as trees and shrubbery blocking our viewing pleasure (curse you elusive castle!). 

 The elusive castle

The elusive castle

 What do you do sirs and misses??

What do you do sirs and misses??

The update of updates

The update of updates

Hospital slumber parties

Hospital slumber parties

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