Love and Laughter

It has been 8 days on I.V. antibiotics and I'm happy to say that I have a little bit more energy today. I feel like the antibiotics are finally doing there job. I had been laying in bed for days, worn out from the meds and feeling so tired due to all the congestion in my lungs. Primarily sleeping, vesting(airway clearance), doing breathing machines(eflow), eating, and I.V.'s. It was nice to be able to move around more today without having chest pain or needing my oxygen.

The best medicine ever is having my boyfriend, Hunter, here. He brought me flowers which definitely brightened my day! The flowers are so beautiful, I can't stop smelling them! Hunter and I have been together for 6 years. He is my life jacket through a storm and I'm so lucky to have him in my life.

My friends Jenny and Heather also came over to visit! They are the best! Bringing even better medicine for me, Laughter. You can't go wrong with the combination of love and laughter. I'm not yet 100% feeling better, but definitely on my way.

Balls!

It seems like whenever I start on I.V. antibiotics, I always get worse before I get better. The antibiotics are so strong that not only are they doing the job of killing all the bad bugs but they are killing the good bacteria in my body as well. The medications travel through my blood stream and wipe everything out! I've been exhausted and still short of breath when I go to move around and get out of bed. My mom has been the best nurse ever, helping me out a lot at this time which I'm so thankful for. I have high hopes that I'll be feeling better at the end of this I.V. cycle!


My I.V. meds schedule:

Merrem- 8:00 am
4:00 pm
midnight

Colistin- 9:00 am
9:00 pm

The simplest part of this whole process has been the fact that I don't have to deal with an I.V. poll and I.V. bags. I have I.V. balls! How fun is that. So easy and compact! The ball filled with Merrem diffuses in one hour and the ball filled with Colistin also takes an hour to diffuse. I just flush the PICC line before with saline, hook up to the I.V. pump, and flush again with saline afterwards. In the picture above I'm hooked up to the Merrem ball on the left. The Colistin ball is on the right. Anything to make my regimen easier gets two thumbs up from me!

Ready to Fight

I've always been a pretty private person when it comes to talking about having Cystic Fibrosis. But as I'm hooked up to I.V.'s I have more time on my hands to write it all out. This is my first blog ever...here I go.

December is always a bittersweet time for me. A happy time because of all the giving, sparkly lights, holiday cheer, and my birthday! But at the same time these past years have always turned into me being on I.V. antibiotics which isn't too exciting. Friday night, the day before my birthday I went ice skating! Then I spent December 19th(my birthday) resting and feeling like poop. December 23rd my doctor told me it was time for I.V. antibiotics after my PFT's had dropped to 48% FEV1 and my chest x-ray was not looking too good. When I was in middle school my FEV1 was 90%. Due to frequent lung infections and lung damage caused by the disease my lungs have worsened over the years. A good explanation of what FEV1 is: Forced Expiratory Volume in 1 second. This is the amount of air you can blow out in 1 second. This is the number, I am told, that is most relevant. When it falls below 30% it's time to start looking into a lung transplant.

After being on Cipro, an oral antibiotic, for two weeks and that wasn't working.... I.V.'s were the next step to get rid of the bugs in my lungs. The best example to describe what CF is like from day to day for me is if I told you to breathe with a straw in your mouth and visualize that mucinex commercial where the boogers are having a huge party in your chest. And when I get a bad lung infection its that times a whole jar of peanut butter in my chest. It hurts when I cough and the best way to breathe easier is to get the goodies up.

When I went to the hospital to have the PICC line(for long term I.V. use) put in, there was too much scar tissue from past I.V. use that the line wouldn't thread and they had to pull it out. So they went into my left arm and thankfully that worked. I was praying to everyone while lying there even Oprah and Tiger Woods, to please make the line thread to my heart. At least all of us got a good laugh. My boyfriend, Hunter, was such a trooper watching and holding my hand letting me know that it was going to be okay. Some of my CF friends have ports because of frequent I.V. use but I'm not going to lie as much as I've researched and know about it, I'm still scared to go that route. Maybe one day that will happen, but I'm not ready yet. So I will stick with PICC lines until the doctors tell me that I have no more good veins.

So, I'm on Colistin via I.V. and Merrem via I.V. and I've been really tired and it's been hard to breathe easily. The oxygen has been giving me some relief. My best friend Nicole came to visit today! That made my night. She brought Swedish Fish and Sour Patches for me to nosh on. She knows me well. For now, I'm just thinking positive thoughts of beaches and pina coladas and I'm hoping to feel better soon! Plus, I'll be praying for my friend Jess tonight who has CF. She is so strong and is on the lung transplant list. I hope she gets new lungs for the New Year.