CF Life is Hard, But Not Just for the Patients, Welcome to the Support Role.

"I didnt mind waiting, sleeping in a chair isnt that bad, its watching you in that much pain that hurt me the most." - Shawn after spending 8 hours with me in the ER and then another 45 mins in my room once i was admitted and settled in.

Saturday night i felt good. Despite my port not working i had gotten a midline placed so i could still stay at home and not miss any of my plans or classes and i was very grateful for my medical team for giving me that option.

A little past 1am while out celebrating my beautiful smart perfect little sister, Hannah, my arm, which was already sore since placement, was in a great deal of pain and very obviously swollen and red. At that point i knew something was very wrong but i did my dose of ivs and headed into the er, driven by my friend Shawn who has been so amazing since we reconnected (taking me to almost every appointment i have, holding my hand when im nervous, scared, and in pain, and always making time to stay with me in the hospital so im not alone). Once there we sat waiting for 7 hours total until they decided i needed the line out and they were gonna put in a peripheral iv to give me my antibiotics and work on fixing the damage to my arm and getting me a new port.

It was very painful and if i fully extend it i get shooting pains all down the arm and my hand goes numb and i get pins and needles, which leads the team to believe ive gotten severe nerve damage from the meds going into the midline and instead of staying in my vein, leaking into the muscle in my arm. So Sunday morning i started morphine to control it, and was admitted.

Next step was to get my port replaced as that seems to be the only option especially through transplant ill need lots of ivs and blood draws. They bumped me in to surgery in the IR on Tuesday (being a holiday weekend made the wait a little longer) and while under twilight sedation i got my shiny new port.
7 hours
The site is still painful and since ive essentially lost function in my right arm, having a new port on the left side doesnt help me get even the smallest tasks done. So heres my tie in.

Shawn, Nick, Katlin, Jake, Sarah, and countless online friends have stepped up their game. the second they knew what i was going through my phone blew up with messages and texts and my facebook was filled with well wishes and prayers that i heal soon and the pain is only short term. These people are all working their butts off to help me continue as normal of a life as possible. I tend to think at times that because its happening to me they cant possibly understand, and perhaps they dont. What they do instead is ask questions, they learn how im feeling and they take the time to listen to my doctors and nurses and do what they can whenever they can to help me when im in need.

Bringing food and coffee to the hospital, helping me run errands and pick up prescriptions,even helping me to clean up and take care of my dog is showing support and love unlike any other. I have a huge support system who goes through CF just as much as i do. They may be able to breathe but the hurt and stress that comes with watching me struggle so hard, the joy they feel from seeing me succeed, and the pain they feel when the tears begin to fall down my cheeks is all to real for them,

CF is not always personal, it takes a village. Im forever thankful for mine and i cant imagine the feelings some people go through who dont have that sort of support and love in their lives.

There is a small flip side however. There will always be friends who dont understand how much effort i put into my day to day life and will still get angry if i dont see them or talk to them much and i suppose i understand that too. My life is a never ending green light of go go go between plans workouts school and everything in between. Ive recently cut out some very negative presences in my life and ive noticed my stress begin to ease.

The ones left sleeping in hospital chairs holding my hand for 7 hours are truly selfless, the ones who wake up and leave on a moments notice to get me to an appointment or a school seminar because i cant drive, the ones who keep the house clean as can be and dust free for my fragile lungs, the ones who spend countless hours checking in on me and making sure im doing as good as can be and are always there with an offer to do anything at all the make my life easier. Its people who know i need help and send me goodie bags with anything they can think of to make me as comfortable and happy as possible.

Friends and family also aside theres my nurses. Nurses who go out of their way to page doctors over and over to get what you need, the nurses who literally tuck you in at night, the nurses who take their lunch break to watch a little bit of tv with you when your feeling lonely. They crack a joke just to see you smile for even a second and are always on your side.

Support systems are the glue that hold me together. I could never do this on my own. I could never go to a party downtown and end up in severe pain 3 hours later all alone. I encourage you to reflect on your support systems. note the people who are always there for you. The ones who whole heartedly understand, and try their best to if they dont. Surround yourself with positivity and your life, while maybe shorter than most, will also be more fulfilling.

CF caused me hell these past few days but i dont think im the hero. They are. They always will be. The ones who have my back through thick and thin and the ones who love me unconditionally. Thanks to them i was out of the hospital and back in class (dont worry i got a ride, there was no Norco driving for me!!!) in no time. Ive said it before and ill say it again, nothing in this world is going to stop be from achieving my goals!!


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