Harsh Reality...

I had an appointment with my pulmonary doctor at the University of Minnesota last Thursday. After three weeks on IV antibiotics at home, my lung function is even lower than when I was started. I am currently on two IV antibiotics and three oral antibiotics and still losing ground instead of gaining. Lately, every joint in my body is beyond sore. I feel like I am going to break when ever I move. Laying in bed is even uncomfortable. Sleep is a stranger to me these last few months. I usually end up staying awake until I get so exhausted that I passout where ever I sit. My dose of steriods is still wreaking havoc on my blood sugars; high throughout the day and crashing in the morning. There is no happy medium...

I feel the quote, "Laughter is the best medicine," really does not fit for me. Laughing, even just a single giggle, sends me into a 20 minute coughing spasm, usually resulting in intense vomiting episodes. Walking is a lovely task as well. Ten steps, cough, cough, hack, gasp, wheeze, cough, spit, ten steps, gasp, cough, hack, spit, hack, wheeze, gasp, gasp, spit, and repeat. Sometimes, even mid-sentence I need to stop and catch my breath.

I know most of my problems stem from my living environment. I live in a 34 year old house, with soft floors, sagging ceilings, and mold. As most people know, mold can be an issue for most healthy people, but for me it can be life-threatening to live in an environment with any amount of mold. In the last year, I have spend more time in the hospital/at home with IV antibiotics than I have home/off IV antibiotics... I know I need to get out of here, but until I have somewhere else to live that isn't possible.

I ended up going to the ER yesterday with bad stomach/back pain, nausea, vomiting, dizziness, and pale as heck! I was probably whiter than the snow in my back yard. :( After some testing my WBC count came back HIGH HIGH HIGH, which is BAD BAD BAD because I am already on the five antibiotics. They did a CT scan, which showed intense swelling and infection in my intestines. They think I may have inflammatory bowel disease. :'( Not looking forward to the possibility of another belly surgery!!!

Well, I am extremely exhausted so I am going to go bundle up under my covers! Hope you all have a wonderful day and a Merry Christmas if I am not back on here before then! <3

Oh for the love....

Wow... It has been over a month since I have written anything.

Busy does not even begin to describe the past month.

My beautiful grandmother, JoAnn, has been brought to sit with Jesus. She left us Tuesday, November 20 at 8:30am. We laid her to rest the following Monday, November 26. Never have I seen such a beautiful funeral!
She would have been 70 years old on November 24... She was four days shy of her birthday.
As hard as it is to swallow that she is now longer physically with us, I know she is looking down on us, protecting and watch over. I feel so lucky to have such an incredible angel.

Two of my lovely cousins: Julia and Alleena, and my beautiful grandma and I

I ened up having Justin bring me to the local emergency room very late November 11/very early November 12 for hemoptysis and chest pain/pressure. The doctor seemed to think he knew EVERYTHING about CF, but had to ask a thousand questions about the disease that didn't even pertain to my specific case... Then proceeded to tell me that I had NO idea just how serious of a disease CF is. O.o
Anyway, he contacted the U of M and spoke to the on-call for pulmonary who gave me two options: 1.) Go directly to the U from Buffalo, or 2.) Call the clinic immediately in the morning to schedule an appointment. I chose option 2. They got me an appointment with the NP that same day.
My PFTs and weight were down, which I expected. At this time, the NP gave me two more options: 1.) Be admitted, or 2.) Do IV abx at home. I, again, chose two.
While trying to get everything set up for my PICC line to be place, I told the NP that I HAD to 100% get my line placed by Interventional Radiology because Vascular Access can no longer get my lines in, nor do they feel comfortable trying. What does the NP do? Schedule with Vascular... So, I ended up going home without a line and needed to go back to the U for line placement the next day. :P
After some complications getting my PICC in, they decided it would be "best" to place a tunnelled IJ PICC into my chest and thread it up through my neck and into my jugular vein.

I went back to clinic last thrusday to see if I still needed IV abx. My PFTs are staying the same so they added a fourth antibotic to my regimen. I have another appointment this coming Thursday, December 6.
Hopefully, it will be a better appointment...

Is It Bedtime, Yet?

Well, Lucas came home yesterday. His surgery went well. He is up on crutches now, but is laying low. We are all so thankful that he and his friend are both alright. Lucas is definitely milking this injury for all it's worth. Everyone jumps at his every request and will usually do it before he even asks. He's in Heaven...

Speaking of Heaven, Mom spoke with grandma today. Grandma told her to be prepared... :C She goes in for surgery on Friday to get a new fistula for dialysis. She's been told she will need dialysis more frequently now as well as more blood transfusions. Chemotherapy was started this last Friday. Grandma has no appetite anymore and is feeling sick. Please, say a little prayer for no suffering. And if this is the end, we all know that Jesus is waiting for her with open arms. There is no person more deserving of soaring through the sky on her way towards Heaven's gates in the embrace of an angel at the end of her journey to meet our Heavenly Father. She has been so strong for so long and has not once lost her faith. She is my inspiration. <3

I have been exhausted for the last few days. Coughing non-stop, joint pain that wakes me up at night, no appetite, feeling like a whale is sitting on my lungs and chest pains. The small dose of steroids Dr. Williams put me on for my joint pain and inflammation has done nothing for the pain and nothing for the inflammation, but has launched my blood sugars into the 400-600 range. My insulin regimen has been increased by 50%, but is still hardly bringing my glucose down. Just gotta keep on going, I guess....

When it rains, it pours...

Sorry, it's been so long since my last post. Things have been crazy. So much is happening and I don't know where to start....

Gramma has been given a not so good prognosis. She's got CHF, Renal Failure, Neoplasm of the Bladder, and the cancer has spread to her bones. As of right now I don't know how this will turn out, but I don't think it will be very well. We had a surprise for her a few Saturdays ago. Sort of a mini family reunion type thing. She loved it! It was wonderful to see her beautiful smile all afternoon.  Please, say a prayer for her as she begins Chemotherapy today.

Overall, the morale of the Zitzloff household is pretty low...  Everyone seems to be stressed about one thing or another. We're all just trying to keep on tuggin' along, but since money is tight at the moment everyone is on edge about how the winter will pan out. 

My brother, Lucas, was in a car accident last night with one of his friends. He ended up with a broken Femur and will be going into surgery shortly to get a rod placed to help the bone heal. His friend, the driver, from what I've been told, is alright. He has no memory of the accident or of his day prior to the crash, but is at home. His car was totaled, but everyone is thankful both boys are ok and neither will have any permanent injuries. 

I had a day full of doctors' appointments yesterday. PFTs and weight dropped slightly, but he wasn't too concerned. However, he did start me on Prednisone for joint pain which he think is caused from inflammation. (My inflammatory markers were pretty elevated.) On a positive note, my endocrinologist  gave me the approval to start driving again!!! :D YAY! 

I was also chosen for "Student of the Quarter" at school for last quarter! This did come as a bit of a surprise for me because I did miss quite a lot of class last quarter being in the hospital. I was nominated by several instructors because of my perseverance and hard work in the classroom as well as consistently keeping on top of all my school work and keeping in touch with those involved.   

I will do my best to keep you all updated more often! <3

These Four Walls

Lately, I feel like I am living inside the same four walls. The walls are gray, they are hospital walls. Decorated with pictures from the ones I treasure most... My little sisters. The pictures make it seem like the walls are not closing in as fast. Bright colors of pink and orange and blue surround me and take me back to my adolescent years. A time when I wished I was "all-grown-up," but now that I am growing up it seems like it is going too fast. These are the times I look at my little sisters and wish I could go back. Back to innocence, when the only worry in the world was whether or not someone was going to take my favorite toy. 

Growing is fun, but when you have Cystic Fibrosis it is also very scary because as you get older, you become sicker... Lung function starts to decrease, organs start to fail, and spirits start to dwindle. You try so hard to keep up with everyday life and you want so much to be "normal," but when you try to do these things, sometimes, you forget how important it is to still take care of your health. CF does not give vacations and it does not take breaks. It is a constant struggle to stay healthy. 

Not Your Average Junkie...

I am sitting here at home craving one thing most people don't even give a single thought to most of their lives. I'm craving oxygen. While most of you live your entire life breathing with ease, I struggle for every breath. And accompanying every short, choppy, O2 deficient breath is a pain you could never imagine. Sure there's the physical kind, but I'm talking about the deeper kind... The mental kind. It's a kind of pain that is not thought about often by people who don't have some kind of terminal illness or know somebody with one. The pain of realizing one day I will leave behind my family and friends. The pain of knowing that time could come at any moment. And that moment is one that will come way too soon. It is a deep hurt. One that is terrifying. I am not terrified for myself, but for everyone I will leave behind. For my parents... the thought that they may one day be the ones to bury their child. For my siblings... knowing I will not be there to celebrate their next birthday. For my friends... hoping they will always remember how much I cared about putting a smile on their faces. 

This pain is sometimes very hard to cope with. And it may be misinterpreted as anger or "bitchiness" or sadness. I may seem distant or rude at times without realizing it. When in all reality I would usually do ANYTHING to make someone else smile. I feel like I have not been myself lately. I have been seemingly distant, crabby, and angry. There are times when the only thing I feel like doing is crying. I try not to let it get me down, but when I work so hard at trying to keep my health stable and all I do is decline I come to a point were I just feel like I want to give up and give in. There are days when I don't feel like doing a damn thing. And there are days when I actually DON'T do a damn thing. Sometimes I feel like I am just walking through the motions. Kind of like I am a robot. Like I am controlled by a computer generated software system instead of my own brain. And then there are the days that I have so many thoughts racing through my mind that I feel like my head is going to explode! 

Today, is one of those days that have been hard to cope with. I have not even been out of the hospital for 48 hours and I am already having hemoptysis again. (The whole reason I was admitted in the first place.) I feel angry and scared and just plain hopeless. I do not understand why I have been chosen for this challenge. I do not know why this obstacle has been placed before me, but I am going to push on. I am going to do my very best to overcome this and to do it with a smile on my face. It will be hard and I will struggle with it, but I am NOT going to give up.