there are very few people who are good at waiting. patience isnt a quality thats commonly found, especially in todays world things are so fast. traffic, slow Internet, people strolling down a sidewalk can put a city walker into a rage! waiting for your food at a restaurant or for a package to come in the mail is almost anxiety inducing to some......can you imagine waiting for a new organ??

ive never been a patient person, i drive too fast when i have nowhere to go. im not in a rush to get groceries but i speed down higgins like my life will end if im stuck behind that prius for one more second. i dont know why im in such a rush. when my facebook doesnt load fast enough or my food takes too long to cook its awful to me, and ive spent the last year of my life waiting for my phone to ring telling me that there is a pair of lungs waiting for me. waiting for someone to tell me my life will never be the same because i will live longer and have a more fulfilling life.

however ive just received news im too sick at the moment to receive this call. i was put on hold until my meds are lowered and my multiple infections are under control. this is a crushing blow for an inpatient patient.

when you cant work or go to school theres not a lot to do with your day. i spend a lot of time sitting in different spots around the house, reading, watching bad tv, watching good tv when luck has it, waiting for friends who have real lives to get off of work and hope they have a free night to hang out. ive began going ot church more for the community and social interactions and structure than the religion, looking for classes that dont cost and arm and a leg that i can take to get me out of the house.

im waiting and thats all i can do. i cant make my lungs or my other organs cooperate like id like them too all i can do is hope for the best and its beyond a doubt the most difficult thing ive ever had to do. knowing now that i dont even have hope for that call to come in (at least not right now, ill get back on that list im very determined to do so and these are just infections, they can be treated!) its even harder. it drags the wait on and it prolongs the anxiety.

i admire the people currtently waiting and the ones who have gone through the wait. this is no easy task and those who have to experience it have strength in them like nothing else. ill be here hoping for the best, but a little crushed at the moment.

impatiently waiting...a look into pre transplant life

i am exhausted sitting here. my eyes are barely open and the fog im my mind has become so thick that the simplest of tasks has become a chore that i struggle to get done. most of this is caused by the different pain meds and anxiety meds and antibiotics that im on right now, but some is just due to constant fatigue. my body is now working harder than ever to just be able to pull in a breath and exhale, to keep my heart pumping, to keep me alive. as we get sicker and closer to needing lungs we need to up our med game, we need more and more antibiotics and machines to help our bodies stay strong enough for this surgery that we can only hope we get the call for in time. heres a little look into my daily routine as of right now.

• 6am- set up iv antibiotic (mix the antibiotic, hang the bag, set up the tubing, flush and connect to my port) these ivs take 2 hours to complete and so im stuck wherever i hang it for a while.
• 10am- do morning breathing treatments, this takes about a half hour to 45 minutes and consists of an albuterol neb, a hypertonic saline neb, and a pulmozyme neb all while i wear my physio vest to help shake things up so i can cough it out easier. i then do a nasal rinse with water and a steroid, a nasal spray, and an inhaler.
• 11am- my breakfast (brunch technically....) with my morning pills, right now im taking 21 pills with my breakfast. 
• 1pm- time for another albuterol and vest treatment which will take a half hour to complete. and then lunch eaten with another 5 pills.
• 2pm- hang my second iv of the day and again im connected for 2 hours i usually do this one while connected to my bipap machine and take a small nap as im so exhausted by the day so far.
• 5pm- dinner time, with dinner i take 10 pills
• 10pm- this is the most annoying one, here we go, i start by setting up my feedings for overnight, i do 3 cans of tube feedings that run over 6.5 hours while i sleep, with these i take 12 more pills. i also hang my last iv for the day, but keep in mind it runs for 2 hours so i need to set an alarm for 12 to wake up so i can disconnect from it. i also do my nightly treatments, (the nasal rinse, the inhaler, the 3 nebulized meds, and the vest one more time) this all takes a good hour or so to set up and finish. i then put on my cpap mask and try to get some sleep!
• 5am- my feeding tube is done and i get up to rinse the line and disconnect before sleeping another hour when i have to take down all the old tubing and re set up my ivs for another day.

all in all i spend 12.5 hours hooked up to an iv pole. i take approx 48 pills per day, and spend about 2 hours doing nebulized treatments and chest physio, and i need to take in around 3,500-4,000 calories a day to keep my body weight up and make sure that im healthy enough for surgery. this isnt always consistent, sometimes im on more and sometimes im on less but this is an average day for me.

being on the list means that someday, hopefully soon, i can get a call for new lungs and cut out a good majority of the things on this list. the amount of pills i take will increase and it will be hard hard work but ill also get a life. theres not much time in between all the things i need to do each day to really live and thats what gets me. i like to think of myself as a free spirit but im so tethered down by all the meds and machines that i feel trapped in my own body right now. i struggle with my family because neither one of us really knows how the other is feeling, and it can be hard.

im very impatiently waiting on my call to come and bring me a new life, and im hoping with everything i have that these lungs work for me and i have many more years with them!!! 

Gettin It!!

Im her. Im the girl who i used to roll my eyes at, the one who i was so annoyed by because i didnt wanna hear about how amazing she felt after her run, or how great it felt to finally finish a 5 minute plank, the one who Instagrammed a picture of her healthy breakfast and was overly proud of her mile before 9am. Im her. Im the girl who hashtags things like #gymlife and #healthyliving and who preaches the benefits of even a small workout to her friends and family. Im her. Im the girl who does all this and more because all of a sudden im the girl who just went rock climbing and hiking and running up hills when my last appointment at Loyola Medical Center just barely put me on hold on the transplant list with a 32% lung function. 

My newfound active lifestyle isnt all that new ive been doing yoga for quite some time now and ive been trying to stay as active as i can, being on oxygen it was admittedly harder and the motivation was sometimes tough to come by. Its hard. Its taxing. Its hurts. Its worth it. In a few weeks i go back to my transplant clinic and ill do another lung function test and i cant wait to see what kind of numbers show up on that paper when im done!! 

I wanted to start doing a few posts about my fitness and health journey because i get a lot of messages about it, people asking how i went from top of the transplant list to being inactive on it in a matter of months (although a big part of that was having collapsing lungs), how i went from constant 24/7 oxygen to only needing it during tough days and when im sleeping. I used to honestly hate people like me i really didnt think that exercise at this point would do me too much good i thought i was too sick and if i could just get new lungs everything would be fine but the difference ive seen in my life has been absolutely incredible. I had pretty much given up but signing papers to be officially listed scared me into really working hard and changing my life for the better!!

its hard to say that this will work for everyone because CF is a very specialized disease, every case is wildly different and no matter what kind of work you put into your body the bugs that call it home can still destroy you overnight with no warning, however the stronger you are the better your chances are when you need to fight back!! Post transplant is hard on the body, the muscles and bones take a beating so strengthening them now means a faster and easier recovery when it is my time for new lungs.

My goal now is to push my transplant date back as far as one can possibly push it back, ive been living this life to the fullest lately and im not ready to end that!!!

little ole me just goin on and on.....

I have a ridiculous amount of started posts on my blog site right now and it seems lately i cant organize a single thought in my head. I start to write about one thing and then decide i dont even know where im going with that one and start all over, saving it and hoping maybe itll come back to me later on. I have lists of things on my phone i wanted to address on here but havent really gotten around to that, ive sat up in bed late at night unable to sleep and unable to put my thoughts into order like i was doing so well for so long. My anxiety and my depression are becoming a little more overwhelming every day it seems.

I often use this blog to talk about the thoughts and feeling thats come with transplant and with having cystic fibrosis and i know ive stemmed into the mental health aspect of it before during my long hospital stay. I think that was really beneficial because so many people who suffer from chronic illness also suffer from a range of emotional problems as well. Ive stemmed into the side of love with a chronic illness and how it just never seems to work out how youd like it to, ive gone into rants about people perceptions of my illness and all that good stuff but today its just kind of everything.

In summary? Im in a rut. A bit of a life-rut if you will. Things have been very medical based lately with new meds, new routines, tons of doctor visits and a lot of time spent in the hospital. Ive gotten into this weird wake up do meds, eat, do meds, take a nap, maybe go to the store, eat, do meds, sleep, repeat. Over and over. Sooooooo ive been making some plans. I dyed my hair, lots of colors although for some reason the whole top of my head is insistant on being green at the moment :/ i did my nails, i did things that made me feel good on the outside and as for the inside? well that parts gonna be tough,

I have so much going on right now in my personal life, ive been trying to decide as of late if i should give up on my previous relationship and start to date again (like its that easy to do hahahaha) or if i should still hold out a little hope for the future. im trying to not lose my cool over a mom who likes to seem like shes not, but is totally bat shit crazy and now living with us (maybe more on that one later?) plus im having a hard time figuring out my feelings about transplant. BOMBSHELL : IM WAVERING.

ive been rethinking it. i know a lot of it is due to stress that im under right now and its hard to tell if id be able to hold it all together through such a big procedure if im barely holding it together right now. I feel  a little but like my support system isnt as strong as it was when i was first listed, which kind of makes sense after all its been 7 months people are just kind of complacent with the idea now. Im also just very tired. Im physically exhausted from taking care of myself on a daily basis. I live with family but they also have their own lives and cannot always be there to help me when im tired or sick. Im afraid what after the procedure will be like and if ill even make it through. How will i feel if my lungs reject? I have clinic in a few days where ill speak to my entire team and also to my therapist and try to figure out what i really want to do. 

For now its up in the air. Its just something im thinking about, and who knows maybe when i can fix this rut ill be all gung ho about it once again, excited for life and new adventures, not filled with fear and anxiety. Stay tuned my friends. 

Post Transplant Thoughts and Ramblings.......

Ive always loved open space, feeling like the only person for miles and miles, being in the middle of nature without a single man made noise. My favorite vacations were cabins in the woods where my days were spent hiking and kayaking, sitting on a porch eating dinner watching the sun go down over mountains and tree tops. I love waking up to foggy mornings next to a lake, drinking coffee and hearing nothing but birds. Tonight the dumbest thing happened i was watching X-men Origins : Wolverine and for some reason when it showed his house in the mountains, i got this pang of sadness. My life now consists of being in one spot, near my transplant center, constantly running to appointments and hospital stays. Im connected to my phone at all times in case "the call" comes in or i have an emergency and need to call an ambulance. At times im conflicted over transplant because i feel like it could be too early, like im still healthy enough to keep these lungs for a long time, but then times, like right now, i want new ones so badly, i want that life i love so badly. I want to hike and run and feel free. My oxygen cords are like a ball and chain and i wanna break away from them but i cant. These last few years ive tried to do all the traveling i could because i knew this was coming and as much as i did i still want more!! I cant wait for the day i drive away and stay away for a significant amount of time!!! I love my family i could never leave them for too long but my number one post transplant goal is to live somewhere new, on my own, for at least a few months. I wanna explore a new place and experience new things!!! Its so weird how that one scene got to me so badly hahaha i feel so stupid but sometimes the dumbest things really make ya think!!

If you got a second chance at life, where would you go? what would you do with it? would you wait till you were cleared to go back to your job and keep your life how it is or would you go off for a while? live out a dream for a little while?? Im so excited at the prospect of a new fuller life right now! Terrified....but excited.

brb daydreaming of new lungs, and new life.

The Other Side of Your Support System

"Support system : a network of people who provide an individual with practical or emotional support." 

It sounds so serious at times, it sounds almost intimidating to me, and while i like the idea of it, the idea of a group of people in my life who together make up a system of constant love, support, and encouragement i also know that for people living with challenges like, but not limited to mine, this system can be very complicated. I'm not saying that the average healthy person doesn't have social problems but adding in chronic illness, constant hospitalizations, and stress through the roof doesn't necessarily help. Going into transplant one of the things they asked me about on my very first appointment was who do you have that you can lean on for support? Who do you have in your life that you can talk to, vent to, who can help you in hard times? My list went on and on. I had everyone. I listed my sister who's been my absolute rock for years and still is. Shes the only person i can honestly say i have absolutely zero doubts about leaving me in any way shape or form and who would run through a brick wall if she needed to. Shes strong as hell and shes a constant source of love and support. I listed my parents, who despite our rocky pasts and admittedly rocky present can be counted on for a certain level of support and help. I listed all of my friends and i listed my boyfriend because despite the hundreds of outs i gave him he swore it was worth it. I was confident in my list of people i was confident that this would be hard but that my support system wasn't something i had to worry about. Turns out i did. Here's the complicated part, the last 3 months I've gotten an out pouring of support online from different people, communities, companies, you name it all on my side wishing me well letting me know they're in my corner that they're behind me in my fight 100% and reading the love pouring in from all over the world melts my heart. To know that complete strangers care enough about me to to take time out of their days to send me a message or send me a package or a letter to brighten my day blows my mind!! Yet at the same time the people who i see on a regular basis are here feeling the stress and its overwhelming for them. I always thought of the people around me as the true heroes here, because while this is my life and i have to live it they have a chance to walk away from it and they never did, but lately a few have taken that walk. So while i have this online community rooting for me every day my personal support system was crumbling fast. The world keeps moving my friends have lives, they're 25 their finding their dream jobs, getting married, having children, going out on weekends, living it up like they should be and its not always ideal to sit in a hospital room. My boyfriend is an amazing man, I've never met anyone so caring and loving and constantly there for me no matter the situation but after 3 months stress builds, and he has his own well being and life to worry about and i cant be there to be a part of it and that puts a lot of strain on us as a couple. I  was caught up in my own version of what my support system was and what it meant that i forgot that the people in it are feeling this pressure too. I became too reliant on them. I lost my own sense of strength and i forgot the girl who walked into clinic head held high knowing i was gonna kick ass and come out a healthier person, able to travel, and live, and breathe like everyone else. Your support system can only be as strong as you let it, if you lose support for yourself they will feel it. its okay to lean on people and to need them but they cant be your only source of good. This process took it out of me, but I'm hanging in there. It took losing the people i leaned on the most to realize how much I'm capable of leaning on myself and since then I've been happier and healthier. Find the balance between asking for help and support and relying on the people around you for everything. Don't underestimate your own strength and will power, don't get to the place where your sitting in a room waiting for those people to come back because you just cant be you without them. Recognize that you need to support them too, take a little walk in they're shoes, understand the stress that this puts on them, and your rock solid support will stay diamond strong. 

People love you, let them when you need it, realize you can love yourself just as much though. <3 

What nobody told me about transplant

"She never complained, always had a smile on her face and was positive up till the very end!"

This is a line that ive read over and over, ive read that no matter what happened there was not a single complaint, not a single moment where they didnt give up hope, and that through all the pain they smiled. Well guess what, im calling it. Im calling bullshit. Its easy to look at a facebook and see a snapshot of someones life and someones struggle and see the inspirational side of their fight and its a whole nother story to be the one fighting. For a while i felt like i wasn't as strong as everyone else and i felt like maybe i had given up and i just couldn't do it. I smiled for company and laughed with my nurses and when everyone left i cried, and i panicked, and i wished so hard that i could be the girl who stood strong and knew without a doubt that she was gonna kick ass and this would all be worth it. People like to be inspired, they like a story where the fighter comes out on top but its not always realistic. Prolonged hospital stays come with challenges that are out of our control, like depression, and anxiety, and panic disorders, and feelings of hopelessness. These are the things we don't normally see online but they need to be addressed. The stress that comes with transplant isn't something i was fully prepared for despite my teams warnings. After talking to members of my team and also a few new friends ive made in the online community im a part of ive realized that how im feeling is actually quite normal, especially after close to 3 months, and can be controlled. The decision to start on antidepressants and anti anxiety meds was a big one for me but im hoping that i can get back to the girl who looks at the road ahead and sees nothing but optimism and hope for her new life. Its only been a few days since ive started but im already feeling a difference in my overall mood and my motivation to go for walks and keep myself busy. I havent had as many times throughout the day where i felt consumed by my mood or thoughts and im getting back to relying on my own strength and will power. Over time i had started to rely on my support system more and more to fix my mood and bring me back up and it got to the point where they started taking on the stress i had and they also were getting overwhelmed and feeling the strain and i lost some people who were hugely important to me, and again felt like i couldn't do it ( i plan on doing a post later about the support system issues so ill touch on that later) but i wanted to shed some light on getting my self reliance back and on the common feelings that go with transplant but that you dont typically hear about. There seems to be a certain stigma in America that goes with psychological disorders that if you take a med to help balance you out your crazy or your somehow a lesser person or even thats its just a bad attitude but just like CF is a disease that i cant control, my depression and anxiety are going to be there and its not something i did wrong that caused it, im not just being negative, and in order to have a successful transplant i need my mind to be on the same page as my body, i need to be motivated and i need to be in the right state of mind. Feeling low and feeling alone are gonna happen no matter how many people message you every day and how many calls come in but im not weak, ya know how i know? i said i was done, i gave up, then i asked for help. You dont ask for help when your done. Bad days happen. They always will theres no preventing them but you can help yourself and let other people help you too. Thats not giving up, thats what fighting is, doing anything you possibly can to get through. Dont take the snapshots to heart. Feel what you feel, do what you need to do, and you can get through it but most importantly know that comparing yourself to someone else isnt realistic. You dont know what their battle really looks like!!!