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!!


.

long story short....

Being a chronic badass at my admin!

Hello!! Yes, yes, im still here!! It has been soooo long since i posted!! Sorry about that one...its been a little crazy health wise and ive been sleeping quite a bit but lets see a little after my last post i was admitted into the hospital for just under a week, it wasnt too bad of an admission i mostly had nurses i liked and had very few problems. The first few nights i had a bad reaction to the meds and had a few bad fevers and got really achey (the meds to make me better make me soooo sick!!) and i was also really nauseous for some reason. I did NOT feel good in there! I had quite a few visitors and that def helped the time go by and it was nice not to be alone! Michelle and Allie of course came by, Joey of course was there a few times and...my dad...more on that in another post. They sent home on picc line antibiotics to finish the 2 weeks out. I was supposed to get it removed Monday but was once again feeling horrible and so im gonna keep it for another week. Not too much has happened since then ive been home alot (thank you God for Netflix!!) and i went out a few times with Allie to cure my cabin fever (one night i ran into a total matt smith lookalike!!!) and i had a few dinners with Joey (which were delicious and amazing!) but nothing too special. I have a ton of topics i wanna write about though, ive had a lot on my mind and it hasnt been the easiest few weeks so expect a few rants! But first things first. ALLIE HAS BEEN EXCEPTED INTO WILLIAM AND MARY IN VA!!!! Im so happy for her this was her first choice college and of course she got in theyd be insane not to have excepted her :) Its 12 hours away though and im going to miss her so terribly! Ive already started a jar with ALL my extra cash so i can visit her as much as possible! As selfish as it is im scared that my best friend is leaving because i count on her for so much, shes such a huge part of my support system and honestly id lose my damn mind with everything i have to deal with if i didnt have the morning lattes the weekends the sherlock nights, but im so proud of her for how hard she works and for going after what she wants and im very very happy for her :) We still have st. pats day and our road trip and all summer with nights out concerts and whatever else we do!! Its far from the end of an era, but it feels like it!! More posts to come i have lots to catch up on!!

the view from my room :)

Miss Al and I 

Hospital Stays

When i start really feeling bad i know the best thing for me is to call my doctor and set up an admission, but i still fight it. Every single time! Not because i dont want the pain of all the blood draws, ivs, picc lines, and everything else they do. Not because i hate that someone comes in my room every 5 mins and they usually end up severely pissing me off before they leave, and not because being in my own bed in my own apartment is sooooo much better than being anywhere else....Its because i hate feeling cut off and isolated from my normal life. I hate staring at my phone waiting for someone to call me or text me or hoping a friend comes on facebook. I hate hoping that maybe the next time the door opens itll be a friend not a nurse whos here to poke me with yet another needle :(. Although there are a few people who try to be there for a little bit when they can (aka Sarah, Allie, and Michelle) but i do feel forgotten in there. I appreciate even a quick phone call, its soooooo boring in there and I understand that people without CF have lives that dont include as much free time as ours do and i try to remember that but i still cant stand feeling like unincluded (is that a word? it should be...). I wish us cfers could be around each other because i know alot of us have this same outlook, and if i could id come visit each and every one of my CF friends and id bring them real home cooked food that only contains one type one type of animal per meat item and was not made in a lab and coffee thats not made from pine cones and bits of card board!!! The last admission i had was reeeally hard on me cause i barely saw or talked to anyone...im really hoping this one is different! Feel free to email me and leave me some love!

Heres to the few people i can always count on!!

Appointment/Health Update!

Its been a little bit but i hope everyone new year has started off on the right foot so far! Just to update everyone on how im doing I had a doctors appointment today at 3 and it didnt go as well as i hoped but i wasnt admitted so I definitely not complaining. I lost 2 pounds (down to 96 now) and my oxygen levels seem to be staying right around 94 now. My FEV1 was the same 28% as my last appointment and although its disappointing that its not higher im glad it hasnt dropped. The last 2 days ive been coughing up blood as well but its under a couple tablespoons a day so its not a huge concern right now the doctor just said to call him back if it doesnt stop or it gets worse and hell set up an admission right away. Also ive had a bit of a cold for over a month now but since that seems to be clearing up too im not worried :) all in all i think it went okay but it was a pretty disappointing feeling to have worked so hard like i did and still have lost weight and to have my lung function stay the same...i thought for sure id made a difference! This just means i have to work even harder before my next appointment. My weight goal is 100 lbs (i wont be healthy enough for transplant till i can gain and maintain my weight so is really important) and i wanna get my FEV1 up past 30%, its gonna be really difficult and take a lot of time and work to get there but i have an amazing support system full of people who help motivate me and keep me on track and im so thankful for all of them! Heres hoping guys!
xx

Minor Set Back

Since getting off my IVs a few weeks ago ive felt pretty great i had some nights downtown and really started feeling like myself again and Thanksgiving was nice i spent it with my sisters family and then slept over at her house Thanksgiving night and did some black friday shopping (at Half Price Books hahaha) with her and her family :) It was fun and i loved spending the holiday there i love them all so much! Then last night i decided to go to Winterfest (stores give out hot chocolate and brownies and things and the town is decorated for Christmas) and also went to Houlihans to watch the hawks game and it was fun but even while getting ready i noticed i was really out of breath and couldnt stop coughing, then by 8ish i really started to feel it so as soon as the hawks game ended i went home and set up my oxygen and went to sleep but kept waking up with a HORRIBLE headache! It woke me up at least twice and is one of the worst headaches ive ever had. Every time i cough it sends shooting pains through my head and i just wanna cry :( It feels like a pressure headache and im still having trouble breathing and starting to get aches all over so even though I just got out of the hospital a few weeks ago but im thinking it might be time to go back already i feel terrible and it doesnt feel like a cold to me but im gonna give it a few days and see how i feel then if im not improving ill call my doctor and set up an admission and another course of IV antibiotics (which also means another picc line if they can start one and if not, then i have to get a port...boo.) until then its sleep and oxygen for me! Love to all of you i hope your holidays were good!!

xx

When Bouncing Back Isnt Realistic....

Well im ecstatic that my PICC was pulled just now seeing as it was driving me CRAZY!! I think i might have started to develop an allergy to the tegaderm dressing or the chloraprep (cleaner they use) because although my lines are never comfortable this one was almost unbearable, it kept me up at night and i thought i was gonna scratch my arm right off :( Soooo glad its gone, however it hit me last night as i was trying to catch my breath while walking through my apartment, that i was trying to catch my breath while walking through my apartment....

Allow me to explain- June of this year i went to the Apostle Islands thanks to my super amazing wonderful sister who surprised me with a trip she knew i wanted to do before it got too hard for me. I wanted to kayak through the sea caves on lake superior so badly and she planned a whole vacation, drove 8 hours, rented an incredible cabin with a private dock, planned hiking trails (one with a pretty waterfall you could go behind (see bottom of page for said happy times), fished with me in a half deflated raft, and paddled her superstar ass off in a kayak in a rain storm in 40 degree water so that i could do it. Words cant describe how much fun i had and how lucky i feel i saw something so beautiful and got to spend a few days just hanging out with my family and what that meant to me is priceless. I hiked up to 5 miles uphill most of the way and i ran and was able to kayak through the waves and i felt good. I felt really really good. Now its 5 months later, my lung function is a mere 28% and after 2 weeks of IV antibiotics and a 5 day hospitalization im still gasping for air while trying to sweep my living room floor. Its disappointing to say the very least. This is the first time that ive finished a course of treatment and still feel short of breath. Usually i feel unstoppable and this time i just feel the same. I knew this day would come, when i didnt come back like i used to after antibiotics, but i didnt think it would be at 23.  Looking back on how my life was not only a few years ago but just back in June is heart breaking for me. What else will i have to give up? I live for weekends out with my friends dancing and having fun but im scared those days are coming to an end soon as well...Scary stuff!

A Day In The Life of Meeeee!! ( and stupid cf)

I tend to feel alot like this....

Im getting increasingly annoyed with CF, and i dont think people understand just how difficult it is especially right now when im on iv antibiotics and how much time and energy it takes to keep myself feeling as well as i do, which isnt even that good most of the time, so i thought id take you all through a day in the life of Rachel!! :) I have to also watch how much i eat every day to make sure i get all the nutrition i can as im trying to gain weight and have been my whole life. I need at least 600 calories and 33 grams of protein at meals to make my daily goal of 3,000-3,500 calories and 150-200 grams of protein. My snacks need to be around 400 calories and again around 33 grams of protein. Although i dont always make my food goals and admittedly some treatments go missed as im so exhausted i tend to fall asleep a few times throughout the day my doctor, nutritionist, and I made a generic plan of how a typical day should go which is what ive included. So heres my day!!

6 A.M. ~ wake up to do Piperacillin which runs for 30 mins through my picc line

10 A.M. - Wake up again!! Time for more meds

• 1 pulmozyme nebulizer treatment (10 mins)
• advair inhaler
• 1 adek vitamin
• 1 vitamin d
• 1 zithromax
• 1 albuterol nebulizer treatment (15 mins)
• use my VEST machine for 15 mins
• 3 creon enzymes
• eat a breakfast of at least 600 calories and 33 grams of protein

12 P.M. - it usually takes me till now to be dressed and ready for whatever i have to do that day, i move pretty slow so i dont cough so much and it can be fairly difficult to do things with a picc line in my arm, but before i do anything else i have to eat again, and do more meds.

• 2 creon enzymes
• cayston nebulizer treatment (5 mins)
• eat a snack of at least 400 calories/33 g. protein

2 P.M. - my second dose of piperacillin. (30 mins)

3 P.M. - by now im relying healvily on coffee or energy drinks to do anything and i feel like i could drop over and sleep for hours, the lectures about how bad they are for me are annoying..please stop. :)

• IV dose of tobramyacin (1 hour)
• albuterol nebulizer treatment (15 mins)
• 3 creon enzymes
• lunch of 600 cal/33 g protein

5 P.M.

• cayston nebulizer treatment (5 mins)
• 2 creon enzymes
• snack of 400 cal/33 g. protein

8 P.M. - i may move this down to 7 if i have plans :)

• advair inhaler
• 1 vitamin d
• 1 adek vitamin
• 1 albuterol treatment (15 mins)
• 3 creon
• meal of 600 cal/33 g. protein
• 15 mins on VEST machine

10 P.M. - ^same as the last one, it might get moved to 9.

• piperacillin (30 mins)
• cayston nebulizer treatment (5 mins)
• 2 creon
• high protein health shake

11 P.M.-6 A.M. i use 2 liters of oxygen overnight and will hopefully be getting a salt machine as well which ill use all night!! I heard amazing things about them!

So thats about what i have to do every day, some days i add on cipro and prednisone every 8 hours but luckily im off of those antibiotics for right now and in the summer i drink a gatorade with a teaspoon of salt in it every 5 hours as im extremely salt deficient, but this is a lot. It can take up my entire day and eating that much food can make me feel so sick i dont even wanna move, i work really hard at taking care of myself all week because my life literally depends on it. Saturday nights are soooooooo needed to blow off steam after that! haha, so when i sleep in the times i have no meds or i dont have to make a snack or a meal im not lazy, & I dont not have a job or go to school because im lazy or i dont care, i wish i could. this is exhausting and really takes my days away from me. Im quite proud of everything that i am able to do, but i need to buckle down and follow my meds a bit stricter as i can feel myself getting sicker. Maybe one day people will get that and wont judge us CFers so hard for the ""lack of effort we put into things" as ive heard it called many many times. 

Hospital Day 1

Well day 1 was frustrating to say the least, i was put on the 12th floor which seems like itd make sense because its the respiratory unit but im always on 14 so i didnt have my usual doctors and nurses, im sure their just as good on 12 ad on 14 but they dont know a thing about cf! The doctor kept asking if i was near sick people or construction cause she couldnt understand why i was having trouble breathing if i wasnt sick lol i told her its just normal cf stuff like 5 times haha. Luckily my first nurse has a daughter with it so shes familiar from a parent stand point but then again i dont know her daughters situation im sure its different as everyones is and so she still wasnt sure how to treat me, she got me a room on 14 though so i moved up there around 7 :) My RT last night was amazing too he was hilarious and i had never had him before but he told me jokes and i think laughing was almost better treatment than the physio he did haha. So the day wasnt too bad but then during the night i had a lot of trouble, lets list off everything that went wrong from 9-9 shall we?

1. My nurses name was Ann but she had never seen parks and rec so any and all quotes i threw at her would be pointless.
   
   
   
   
2. I had a fever and crazy headaches all night but there wasnt an order for tylenol so there was nothing they could do but feel bad for me and give me blankets till the doctor came in today.
3. I miss my precious baby puppy.
   
4. They had to draw blood at 4am and couldnt find a vein and had to try a few times before finally getting a good one..in my hand where it hurts the most.

Luckily my fever broke early this morning so im okay now :) Plus my favorite nurse brought me breakfast from Panera and a white chocolate mocha so my morning isnt too bad so far, still tho i fully intend on napping most of the day. I mean, when my mom and Sarah arent here and after i go down to get my picc line placed haha. Happy Monday everyone! 

Clean Out Time

Well its been about 4 months since my last hospitalization which isnt too bad if i do say so myself! But im back :( I came in last night (after a fairly unsuccessful, but still fun, night out at Rush and Division with Allie <3) I had some pretty severe chest pains and a TERRIBLE cough! Not to mention my breathing was shit like usual, ive been trying to kick this cold for over a month now and i guess it finally got the best of me. Sarah took me in to the er around 4 and i got a few breathing treatments, x rays, 2 blood draws, a flow of 4 liters of oxygen, and an iv set up all by 7am. Michelles mom was working in the er so i got to see her shes so sweet im glad she was there! Still i am NOT happy right now!!

So whats the plan??

Ill keep my iv until tomorrow when the surgical team can place a Picc line (http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter) and then ill do Tobramyacin and zosyn through there im not sure if theyll add any others but thats all i know of right now, ill stay on 4 liters of oxygen 24/7 unless i have trouble then theyll turn it up to 5-6, and ill get breathing treatments every 4 hours during the day, and hopefully ill get over this cold and it wont turn into pneumonia. Time to get a little sleep ill update daily tho! Love to you all!!