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

Think clink

Think clink

Back in the clinker.  I didn't even go to my doctor's appointment Wednesday. On Tuesday I made the decision to call them up and tell them that I was feeling terrible and needed to come in ASAP.  Since Monday I have felt worse in the lung department.  Becoming winded with anything I do, such as closing a damn window or taking sheets off a bed (yes the struggle is so real).   My need for Duonebs have increased a lot, due to feeling very tight and short of breath often.  I got admitted Wednesday so we can try and get a handle on these shenanigans.  The other week I went to Coscto with my brother and there we came across a collapse-able wagon and he insisted on getting it for me.  The reasons being that 1. I can use it when I come into the hospital to bring all my stuff from my car to my room easier.  I usually struggle hard trying to carry my small duffle bag and pillow and blanket. This time it was sweet, I even brought an extra pillow!  2. Another perk of the wagon is for when we do outdoor things at a park or something we can either put stuff in it or I can just sit in it and get pulled around.  Which as of late would be my preferable means of transportation instead of walking.

 My little wagon

My little wagon

  When coming in to be admitted I can go straight to the floor the CFers go to and find a nurse to show me to my room. In my room the people who do admissions come up there so I don't have to go anywhere. They also weigh me, get sputum and urine sample. Then the IV nurse is called to come put the IV in my port, which I can do myself but I let them do it. The whole admitting routine also includes them asking  you a million questions, and "put in orders" for meds, which they forgot a bunch!  They also get an x-ray of my lungs to see if things look worse, like if there's pneumonia or mucus plugs. My x-ray compared to in  May looked a bit more opaque in the lower lobes like they're just full of stuff. When the doctors and nurses listen to my lungs they say I sound tight and have  diminished breath sounds in the lower lobes. There's also some crackling (pop rocks).  Before they start any antibiotics they need to take blood for labs to check on my kidneys and such. My white blood cell count is up a little, up to 16,000. Normal white blood cell counts are 8,500-10,500.  My kidneys are good and so I didn't have to wait long to start IV Vanco, which I started on Thursday. On Wednesday, the day I came in I only started on IV Zosyn. I have not been on this one for several years due to it causing serum sickness. They wanted to give it whirl and I was all for it, hopefully maybe it will help! So since I've had reactions to it in the past they wanted to start by giving me half a dose and pre-medicate with IV Benadryl, yippie zombie sloth town here I come! Now don't forget, I need to pre-medicate with Benadryl for the Vanco as well, might as well become a bear and hibernate. Oh and this time they are not mixing the Benadryl with a baggie of saline, just adding to a small syringe of saline and then injecting quickly and oh boy can you feel that puppy fast. At night it's like "may the force be with you" if you didn't get ready for bed beforehand, like brushing your teeth or washing your face...

 Getting my port accessed

Getting my port accessed

 Port accessed 

Port accessed 

 Labs

Labs

 x-ray on the left is from Wednesday and the one on the right is from May

x-ray on the left is from Wednesday and the one on the right is from May

Thursday I ended up napping most of the day, no surprise there, but maybe just a little... The Benadryl usually doesn't effect me like this, I can stay awake after no problem in the past. After my nebs and chest physio therapy was over, someone came in to do PFTs. I guessed what the number was going to be, and unfortunately I was right. My guess was that my FEV1 was going to be either 19% or 20%, and it was %19. Such a bummer!! Especially after two weeks on three oral antibiotics. But I did feel like they were down for sure because of how I started to feel on Monday. I was 21% only like three weeks ago! (wahhhh!). One theory I have that may be a cause to why I started feeling worse Monday is because of multiple wild fires going on in Colorado. The air quality and ozone have been terrible for people with sensitivities, such as people with Asthma,  lung or heart disease. Apparently there have been a bunch of CFers that have come in this week, So I'm not the only one struggling.

 

 View out my window   

View out my window

 

It Aint easy being wheezy

It Aint easy being wheezy

Feeling blah for days

Feeling blah for days

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