I'm young. 18 years old to be exact, but my heart and mind say otherwise.
At a younger age I was never able to understand most things that were brought upon my life. I was constantly facing new struggles that kids I was surrounded by weren’t dealing with and may never have to. I grew up surrounded by medical terms, doctors, and hospitalizations. I became familiar with medication lists so long that they consumed 3 full pages.
My whole life I have been raised through challenges, broken dreams, and learning to adapt to new lifestyles time and time again. As I began to get older and wiser I learned to accept my fate in life, I learned to face difficulties with nothing but a positive outlook, and I learned that there is no way to change your past, but there are ways to make your present and future worthwhile.
There have been times where I was not able to keep my vigorous frame of mind. In these moments I would feel myself slowly drowning in sorrow, defeat, but most of all, guilt. I felt guilty because, even though I may not have been in the best situation, I was far better off than some people in this world. These are the moments that have helped define who I am. People will hear my infectious laugh during my most difficult intervals, I will have an everlasting smile on my face when all I want to do is break down, and no matter what is going on in my life, I am always putting forth the effort into making others happy.
For me to be able to say that I am satisfied with myself, life, and all of its entities is a wondrous feeling and gift. Every day I fight the odds and live with a mad, passionate determination, which no matter what, will never be destroyed.
I’m young. 18 years old to be exact, but my heart and mind say otherwise.

Sunday, December 16, 2012

First visit at University of Michigan

So, last Friday the 14th, I had my first visit at the CF clinic at University of Michigan.
It was actually really good. After the nurse put in all of my medication, which took about 30 minutes, I sat with Dr.Simon for about an hour and we went over basically everything. He changed some of my medications around and I stopped taking a few of them. I am only doing Pulmozyme once a day instead of twice and have stopped my high dose Ibuprofen. 
We talked about transplant and he said that normally they will start evaluation if your PFT's are running around 30% and you're using continuous oxygen. He also said that they can sometimes start evaluation sooner depending on your circumstances such as, how many times you're on IV's and how low your numbers drop when getting sick. When I get sick I am eligible for transplant so he said that we may start evaluation within the next six months, but it also depends on what the transplant doctor thinks (I've heard amazing things about her). If your numbers are higher when you're not sick, you can still be listed, but you will just be placed fairly low. 
I have a lot of confidence in him with just the short amount of time that we talked. I was a bit worried about feeling rushed since he is definitely a busy guy. You could tell that he took out the time to go over all of my charts and information, which was really reassuring. All of my questions were answered without me having to even ask them. He told me that he sees roughly 260 CF patients which is CRAZY! I also found out that if, and when, I go in the hospital, I will be going to the adult hospital and staying on ward 6C where they keep all of the pulmonary patients. All of the nurses are specially trained in dealing with pulmonary patients and a nurse doesn't ever have more than 2 patients with CF on the same day to help with cross contamination. 
So yeah, that's about the gist of it. I am currently doing home IV's and don't go back until January 11, if all goes well. He told me that for adults, they usually just have you call in and tell them if you want to stop IVs or continue another week, which is different than my clinic. Usually I would go every week while on IV's to be monitored, but he also said that if I feel more comfortable that way, then I can do that. Dr.Simon basically told me that I am in control of my health and what I feel needs to be done, can more than likely be done. I really appreciated that and I believe that this journey will be a big step into being more independent and officially becoming an adult.
It will definitely take me a while to get used to everything. I've been doing the same routine for 18 years. I'm the type of person who likes stability, which is bizarre beings how much there's ALWAYS something that happens in an instant. Maybe that's why I like stability...because I never have it. Anyway, I felt completely comfortable at my clinic and at Bronson because I knew how everything was ran. Everything down from the exact process on admission to how respiratory, nurses, and PCA's have their schedules ran. It's okay. I'll get used to everything eventually and I'll be able to call it my "second home" some day, as bittersweet as it is.
 I am going to have another sinus surgery and I'm calling tomorrow to get all of that scheduled and figured out. I'm not looking forward to that. I've been through quite a lot in my life....the sinus surgery was one of the worst things I've had to deal with. It was torture! They said that this one would probably be worse because I have to get my septum straightened and scar tissue needs to be removed from my first one. Siigghh. When it happens, I'll have to record a video when I wake up so you all can see how miserable I am and laugh at me! I had blood running out of my nose for 4 days straight...literally. I also was throwing up and coughing up blood from swallowing it, all I could smell for 3 weeks was blood, I got an infection and started having high fevers, my O2 was sitting around the 80's and I had to wear an oxygen mask for about 4 days. It was miserable, to say the least. Enough about that though!

This post is extremely long so I'm going to be done for now. I will be posting pictures that I took with some of the Bronson staff eventually. I have to take them off of my camera and put them on my computer. 
Okay, I'm done for real.
Thanks for lasting through the whole post, if you did :)

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