I have everything

November 12th: Weight was 106 and lung functions were 32%, 32%, and 35%. Continued another week of home IVs.

November 19th: Weight was 105 and lung functions were 34%, 34%, and 35%. Finished up my IV medications that I had left and de-accessed later that night and took my AMAZING IV free shower after 4 weeks of being accessed. Return to the doctors in a month. My weight is almost in the red zone. If I lose one more pound than I have to start doing the NG. I'm honestly not even really sure as to why my weight isn't going up. I've been eating A LOT, I'm not missing any of my enzymes, I'm not terribly sick as of right now...Buuut, I am thinking that I might have kidney stones again and those tend to make me lose quite a bit of weight. I need to get ahold of my urologist and get that resolved. I've had plenty of them..7 at one time before...so yeah, I'm very familiar with how they feel. I've also been having fevers on and off for awhile so I never really know how I'm gonna be feeling. There's a lot of days where I just honestly don't feel well at all and all I want to do is lay in bed. Actually, no joke, the night that I stopped my IV's, I started having that really dry, constant cough which has always been a sign of a flare-up...not even a couple hours after I de-accessed. Is it impossible to catch a break? It's okay. I could be a lot worse. I could be better, but I could be worse. I'm here. I'm alive. 

We are still in the process of switching all of my stuff to U of M. I really have no idea how much longer it will take. Hopefully not too long. They are supposed to be calling me when everything is set up to make my first appointment. 

Classes are going well. I'm passing all of them with good grades and the semester finishes in less than a month. 

I'm hoping I can hold out this month without getting too sick. Last Christmas I was AWFUL and almost didn't make it without having to get hospitalized, but I made it a strong goal to wait until at least the day after to get admitted. I was confined to the couch for a week and half and had to have someone help me do absolutely anything..even something as small as walking to the other end of the room for my nebulizer machine, but I was surrounded by my family and everyone was managing to keep in good spirits despite it all. I did catch my mom a couple times break down when she didn't probably know that I knew, but how can a mom watch her child go through that without breaking down every time they look at them? I was in for New Year's. No one wants to spend their new year in the hospital, but we made the best of it and it wasn't too bad. 

Pleeaaseee just let me make it through at least ONE month without needing IVs. That's what I want for Christmas. I have everything else I need or could ever want. 

Thanksgiving is tomorrow.

I literally can not wait to be surrounded by family....and delicious food ;). 

Last IV for the course 

Waiting at the doctors

One of my amazing cousins that I am so grateful to have

 Siblings

Siblings and our friend who is considered family :)

The realities hit hard

1. "You are so lucky that you don't have to worry about gaining weight. I would love to not have to watch what I eat. You can have some of my fat!"

Reality: My body doesn't properly absorb what I take in so I am forced to take pills every time before I eat...even if it's just a small snack. My body is constantly starved from proper nutrients which results in low vitamin levels, being constantly fatigued, having dark circles under my eyes, osteoporosis, irregular menstrual cycles and the list goes on. A vast majority of CFer's rely on calorie-enriched tube feeding supplements at night just to help maintain what they have.


2. "But you don't look sick..."

Reality: I may look healthy on the outside, but the inside is a completely different story. On the outside you'll see that I am able to withhold a sense of normalcy (what is normal anyway?). Aside from being a bit shorter, I don't exhibit many traits of this illness. I am able to laugh, smile, talk, walk, and pretend that everything is okay. Now, the inside...a completely different story. You'd see mucus, scarred filled lungs that are functioning at 35%, on a good day. The "simple" breathe in, breathe out rhythm that many people take for granted, is something that isn't so simple to me and it's something that I continuously crave an easy day of. You would see that after each laugh, I am trying for several minutes to catch my breath again. There are constant pains shooting through my so-called lungs. Multiple nights are filled with endless bouts of cough attacks that leave my body feeling like bruised lead for the next couple of days following.


3. "I know how you feel...I had pneumonia for like a week and it sucked."

Reality: The last time I caught pneumonia, my lung functions literally dropped from 37% to 18% in less than a week. I was not able to shower, sit up, or even laugh without having to catch my breath for 10 minutes afterwards. The walk to the bathroom alone left me in tears as I fought for each step. My lower lobe of my right lung collapsed and I spent a week recovering with vigorous,  extensive treatments and physical therapy. I relied on oxygen just to help with even the little things for an extended period of time. My lungs now have more permanent damage...as if I didn't have enough. Also, your bout of pneumonia is gone. My illness is not...how you felt that week, is how I feel everyday and that can not be understood in a week.


4. "I hate school. I wish I could stay home as much as you do"

Reality: You have NO idea how much I would love to be able to worry about the more simple things such as homework, the crappy lunch choices, being bored in class, and having my least favorite teacher. Chances are, I have stayed home because my body just couldn't handle the 4:30 AM mornings to fit in my treatments, let alone the 8 hour school day. My extended absences are spent in the hospital and being confined to home IV therapies and breathing treatments. My days spent at home from school aren't filled with lounging on the couch, eating food all day and catching up on my missed episodes. Instead, I am focused on making sure that I take all of my medications and do all of my treatments, all while trying to keep my fever down and wanting so badly to sleep, but not having the ability because of the latest chest pain and/or the constant cough.


5. "Maybe you should try sleeping more so you won't be so tired."

Reality: There are nights where I literally can't catch more than 2 hours of sleep because of the coughing that itches the back of my throat and to no avail, will calm down. Sometimes there are pains so intense that I am woken up in a deep sleep and am no longer able to fall back into it. I can sometimes sleep for 12 hours straight, but my body craves even more of it, so even then, I am still fatigued. My body is constantly undergoing the fight just to breathe and that alone is exhausting in itself. My poor lungs are working so so hard at times, that all I can do is focus all of my energy on just breathing.


6. "Don't worry, you'll get better and become even healthier in no time, trust me..."

Reality: I have doctors, scientists, medications, treatments, and I have my will to fight. But then again, I have infections, scarring, resistance to antibiotics, and lowered baselines. I am not capable of reversing any damage that has been done over the years. I undergo countless hours of inhaled medications and airway clearance systems on a daily basis, but that sometimes isn't enough. My body can't magically repair itself. I am fighting against this disease and this disease is fighting against me. We are both losers and winners in this battle.


7. "All you have to do is stay positive."

Reality: ...Let me just say this: Are you able to stay positive on a day-to-day basis? Life is challenging enough and when you throw in a teenage girl dealing with a chronic disease, it's not possible to remain positive constantly. Everyone has their break-downs and if you tell anyone that you don't, you're lying. It's okay to not be bright, uplifting, and strong all the time. Our downfalls help us become stronger. And trust me, I am able to find a silver-lining in every rough situation. I have broken down many times, but no matter what, I still keep going.

Laying in hospitals, joy and misery

This video is nothing too special. I just came across the idea while I was laying in bed really bored. It could have been better, but I didn't have access to all of my pictures and videos from over the year since I just recently bought a new laptop aannndd I didn't feel like turning on my other computer. 

So for now, this will have to do :)

Enjoy! 

It's not easy

October 25, 2012

October 30, 2012

I know I haven't posted in over a month, and I'm sorry for that, but I guess I just needed to take a break for a little while. It's not always easy having to reflect on my health and realizing just how sick I am. I didn't have the energy mentally or physically to keep updating...I guess I don't need to be sorry for that.

I am out of the hospital. I got discharged November 7. After the first night (second video) I got sicker and was running 103 fevers, my O2 was running low and wouldn't go up, and my PFT's dropped a little bit, but I recovered and am doing better. My weight didn't go up at all, I actually lost a pound and I'm at 104 right now...siigghh. I lost my voice again after a couple days of being admitted. I also caught impetigo on my nose (ouch). I am currently doing home IV's and probably will be for about two more weeks.

My doctor brought up the big "T" word (transplant). I am in the process of transferring to the University of Michigan CF clinic, so once I switch over, we'll see what the next step will be. I'm sort of on the borderline of needing a transplant. My numbers are low, but they probably need to be just a few % lower to be qualified. I have oxygen at home so that helps me qualify as well. I don't know, I'm not really sure what I think about it. Some people say it's a good thing, and I am trying to see that too, but it's also not a good thing. It's not good that I am sick enough to be thinking about transplants and the possibility of needing one. It's not good that my numbers are so low that I become scared. The night that he brought up transplant I had actually sat in my bed and cried for about 2 hours.
It's not easy.

When I was feeling better. 

Discharge day

Incredibly long day

I'm laying here in bed...let me rephrase that..I'm laying here in MY bed after an incredibly long day. I'm beyond tired and need sleep so I'm going to try and make this as quick as possible.

I had PFT's today and they were 34% which is lower than last week and even lower than when I got admitted. It was already planned that I was going home today anyway because it had been 14 days, I was doing home IVs, and since I was getting oxygen at home, I didn't have to stay in for that. They were at 9:30 this morning and then I waited for an IV med to finish until I started packing. My step-dad showed up around 12:00, we went to lunch, came home, unpacked some, set up my new vest machine (my old one broke: It had 1120.9 hours on it), worked on an essay for class, went to the pharmacy and picked up/dropped of prescriptions, went to class, had my brothers 19th birthday dinner, got hooked up to my IV, started a treatment, Apria showed up to drop off my oxygen, had to learn all the gimmicks of that, did my other IV med, took a shower, and now I'm laying here completely comfortable. 

This morning was stressful because a case manager came in and told me that i wouldn't be allowed to get oxygen at home since the recorded all night sats were a week ago and that is too far away from discharge, bbuuut she somehow convinced them and it's in my room as we speak. Also, I was not, and am still not, feeling well at all and I was overwhelmed with dealing with school issues and had to talk on the phone with the disabilities office, but it should all be resolved now. 

I have wanted to crawl in my bed and sleep all day, and now that I have the chance, I'm doing this.

I could talk and ramble on about a lot of other things, but I'm not going to do that tonight.

Sleep is calling my name! 

Goodnight. 

P.S. I woke up Saturday morning and my voice was, and still is, completely gone. I miss it. 

My oxygen concentrator 

It's official

Turns out that I didn't have to stay in the ICU...it was just the step-down unit, which for those of you who don't know, it has all the monitoring of the ICU, but I'm still on the regular peds unit. 

While I was sleeping the alarm started going off because my sats had dropped low. I'm not exactly sure of what the percent was, but when I woke up from the alarm going off, it said 88%. Last night I had fallen asleep without putting my oxygen on and when a nurse came in to check my O2 it said 86% which is no bueno. My number doesn't even compare to a lot of others, but still, they say anything under 90% can start to cause damage. 

So yeah, it's official now. I'm getting oxygen at home. 

Like I said in my last post, I was expecting to be upset when (and if) the time came, but I'm not. 

I guess it really feels like more of a comfort. When I start to get sick and don't necessarily feel like I need to be in the hospital, my O2 will still drop and I have to be admitted because of that. I'm hoping that having oxygen at home will help prevent some hospitalizations. I mean, I can do everything else at home..IV's, treatments, pills. The only thing that's different between coming in the hospital and doing home IVs is when I'm here, I'm forced to rest and there's oxygen. I'm not the type of person who is constantly on the run. I like being at home and spending time with my family..a lot. Buutt, I do see friends and will go out to lunch or go to the gas station or Wal*Mart or run errands with my mom...adding all of that up when I'm sick can really drain my body, and when I'm home,  I don't force myself to rest..I should, but I don't.

I have no idea on when I'm coming home. I'm guessing that I'm going to stay over the weekend and redo PFT's on Monday and then go home the following day, but who knows. It's all up in the air right now. 

A student nurse just came in and is going to do an assessment, so I'm out of here for now.

Till next time, 

Alexandria

The monitor that I was hooked up to

My brother who is, believe it or not, 6 years younger than me

Depending on how tonight goes..

Update: 

My sats were running about 91/92% during the day until about Saturday I believe it was. They're now running at 96% during the day :D. At night though, my sats are in the low 90's which is different because when my sats are great during the night, they're good at night. I know that everyone's sats drop at night, but mine are usually above 94% when I'm better. Sooooo, I'm staying in the ICU overnight and we're going to do an all night pulse ox to see just how low they're dropping when I'm in my REM stage of sleep. If they're below 90% then I'll be getting oxygen at home for the night. I had PFT's yesterday and they were 42%, which is another reason why we think I'll need night O2. When I left the hospital last time, I was at 37% PFTs, but my sats were running at 96 during the day AND night. 

I had always felt like I would be disappointed when (and if) the time came for me to need continuous night oxygen, but I surprisingly feel okay with it. Maybe it's just because we aren't officially sure if I'll be getting it, depending on how tonight goes. 

My weight is up to 106, PFT's are up a little, and I'm feeling better, so we're on the right track. Dr. Homnick wants to keep me here probably for another week. Want to know something? The only reason I'm incredibly upset with that is because it's fair week in my town and I want some dang fair food!!! Elephant ears, fries, cheese on a stick, and the glorious raspberry lemonade...I'm torturing myself just typing all of that. I don't want to go to the fair and hang out because it's a pool of nasty, smelly, germs..just give me the food. I'm such a fatty at heart. Maybe it's a good thing that I have CF or else I'd probably be incredibly obese. Okay, obviously I'm kidding...it's NOT a good thing, although good things have come from it :). A blessing in disguise as some would say. 

Hannah got admitted yesterday with PFTs of 47% and fevers of almost 102. Her PFT's last time she went to clinic were 61%, so yeah, that's a big drop. I know that she'll recover and get out of here in no time though :). She's one tough cookie. 

I need to pee right now, but I'm hooked up to my IV pole and really don't feel like unwrapping it amongst all of the other nebulizer and oxygen tubes and then untangling the plug so I can unplug it...is that bad? Yeah, it is. It probably wouldn't hurt to take a shower either...just saying. 

I bought a shirt yesterday that I'm super excited to get from this store: http://rockcf.storenvy.com/. It's the one that says heather. I know it may not look like anything special to some, but it has a lot of meaning, to me at least. 

I'm going to go and order some yummy hospital food now.

Bye bye! 

Behold, the lovely booth of fun!!! 

Actually, it's where I do my PFT's.

Nonsense and jibber jabber

I'm here. At my second home. 

Once again. 

Yeup, I didn't improve through-out the week. I basically felt the same except over the weekend. On Saturday I woke up with a 101 fever that kept gradually inclining despite me taking Tylenol every 6 hours, right on the dot. It didn't start to go away until about 11 that night. I was coughing a ton more which led to me feeling even more exhausted. It also caused severe pain in my chest/lungs. I walked around my house all day wrapped up in a blanket complaining about how crappy I felt.  Surprisingly on Sunday though, I felt a lot better, more than likely because I had no fever. I had packed my bags that night knowing that I'd be going in the next day still.

PFTs were pretty much the exact same as the week before, which is better than worse. Weight was down 3 pounds, O2 was 91%, and I was running a slight fever. The doctor came in and said, "Well, your numbers are down and you're not feeling well, so let's put you on some IV's. I'm not even going to try Orals since those never seem to work. We want to stop this before it gets worse."

I then waited an hour and a half for a room, drove to the hospital, signed myself in, got situated, saw about 38207 residents, nurses, and respiratory therapists, did vitals, unpacked, got accessed (took only one try!) and hooked up and I was ready to go..well, by go, I mean lay in bed, receive medications, and hopefully get fat! My weight=no good. I also needed to put some oxygen on right when I was going to bed because my numbers dropped lower and won't stay up.

Turns out that my potassium levels were low, that's a first. I took some potassium pills and received a huge bag of it via IV fluids through-out the night and they rechecked it (3 am blood draw...wtefff) and now it's fine :). One step closer towards better health!! 

I had a complete mental break down yesterday out of nowhere. Usually when I know that I'm gonna be  going in the hospital, I don't even think about it. It's more of a, "at least I'll start feeling better; It's for the best" kind of deal. Well, I was sitting here in my gloomy hospital room and just started bawling. I kept telling myself that I couldn't keep doing this anymore over and over again. Luckily, my stepdad was here and he jumped right up and wrapped his arms around me and said, "Sweetheart, you can do it. You ARE doing it, you have been for 18 years. If anyone can do it, you can. You're so strong. Not a day goes by that I don't think of something happening to you. It hurts, but it's reality, but I also know that you would never give up. If you were to ever give up, you would've done it by now." I started to calm down and began to feel a lot better. I guess I tend to keep a lot of my feeling bottled up. I mean heck, exactly a month ago my lungs were functioning at 18%, I had a partial collapsed lung, and was on continuous oxygen for the longest time yet for me, and I STILL didn't cry or feel upset. In fact, I was laughing on most days. No. I WAS laughing and staying positive everyday. 

Okay, enough of all of that. 

Last uhmm Wednesday I believe it was, I had to drive my grandpa to the hospital because he was having severe pain in his stomach. Turns out he had a bunch of stones in his gallbladder and he needed to get it taken out. He's fine now and back at home. I was driving home from dropping him off and my car started to sound really weird. I have terrible anxiety about things and that is one of them. After a few seconds my car began to sound like it was ripping apart and as I was trying to find a place to pull over, the car wouldn't accelerate at all and as I was getting off the road, it just shut off, luckily right after I made it over. But yeah, my car is officially done. D. O. N. E. done. 

I also began filing for disability. I spent about almost 2 hours filling out stuff online. It said that it can take up to 120 days to hear something back, sometimes less, sometimes more. I'm hoping it's less...obviously. Once, and if, I start getting disability, I'll be able to get a car. 

I think I'm done for now. Thank you to everyone who managed to read through all of my nonsense and jibber jabber. 

I will leave you with pictures for now. 

R.I.P. :( 

The lighting was really off in this picture, but this is from this morning. 

...barely

No hospital admission today....barely.

My weight was up a pound to 107...great news! I was worried that I had lost weight because I haven't had a good appetite at all recently. My O2 was 95. 

PFTs (lung functions) were down from 41% to 37%, 35%, and 31%. 

I know it's not much of a drop bbuuuut....it has only been 3 weeks since I've been discharged and only one week since I've stopped IV's. I knew my numbers weren't going to be too great beings I haven't been feeling well so I'm not surprised..but I am disappointed. 

The doctor didn't want to admit me because I just stopped a full course of IV's and since there isn't much of a leeway between antibiotics we really need to make sure that I don't become resistant to the ones that are available. 

I'm going back in a week and if I'm not better then I'm probably getting admitted. 

  

De-accessed!!

I am (once again) officially de-accessed!! 

Now, that doesn't entirely mean that I'm better...because I'm not. 

Better from when I was admitted last..yes, but not back to baseline. 

I was finally able to take a normal shower for the first time in uhhmmm..let's see..32 days!! I honestly didn't even think that it was that long. 

I go back to the clinic this coming up Monday so we'll see how everything looks and then go from there.

In other news, I dropped out of my math class today. The professor said that if any students miss a class they automatically don't get any credit for anything that was done that day, including test's and quizzes ANDD there are no exceptions...even if you let her know that you'll be gone. We were doing mini quizzes everyday and there was HW assigned at the end of every class period. I had talked to her about me missing numerous days due to health reasons and she just said that I need to try and not miss as much as possible and if I do, well, I miss all the points. Sooooo knowing that my health isn't in the best condition at the moment, and that I'd probably be going in the hospital soon, I decided to drop-out...or as my counselor said, "postpone it." I don't want to be stressed out over school issues when they can be resolved ahead of time and especially when I need to be focusing on my health. There's a certain period called the "drop-period" which is when you can drop out of any classes and it won't count against you, your GPA, or your financial aid. It will pretty much be as if I had never signed up for that class. Instead of my math, I am now taking both sociology and some amateur typing class online. We wanted to make sure that I still had the same amount of credits so I could receive the same amount of financial aid back...which might I add, is going to be quite a bit :). I had been debating on whether or not I was going to drop-out. A big part of me felt as if I was being held back by my CF. I wanted college to be different. My WHOLE entire high school career was being blind-sided by my CF and I didn't want that anymore, but the more I began to really think about it, the more I realized that it was for the best. It also doesn't necessarily have to mean that I'm being held back either. I mean, I'm still taking college classes, right? I just need to be positive and that's what I'm going to be. 

On a side note-- I have this candle lit in my room and I believe it's called pumpkin spice....It. Smells. Phenomenal! Definitely something that I could fall asleep to every night ^_^. 

No more!! 

I wonder how many of these I've pulled out? 

Random picture of me doing a treatment earlier.

I cut myself opening up a Cayston vial. -_-