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.

Friday, January 18, 2013

Hot bath, Mountain Dew and sleep

January 11th- CF clinic appointment with Dr. Simon.
My weight was down to 102 from 106 at my last appointment. My Pulmonary Function Test's were 27%. O2 was running about 92 and heart rate was 109ish. We decided to continue with what antibiotics I was doing and if by the 16th I didn't feel any improvement, then we would switch them. Dr. Simon called me on the 16th and told me that the culture just came back and said that my sensitivity to antibiotics changed and we needed to switch them. We stopped the Imipenem and I am now doing IV Tobra every 24 hours and IV Ceftazidime every 8 hours. I literally just did my first dose, so I'm still not doing any better. Hopefully I'll start to notice improvement over the weekend.
As of right now, I am really not doing too well. My O2 has been running about 90 and my heart rate has been 120ish. I'm having a difficult time with movement and even the slightest walk will make my heart rate sky rocket and my O2 drop. I've been running fevers again and it was 102 last time I checked. My weight is awful. I checked it earlier and it said 97 pounds...97...
University of Michigan has this website called MyUofMhealth.org where you can view previous and upcoming appointments, view lab results, refill prescriptions, write the doctor a note, cancel appointments and blah blah blah. My blood labs came back and my white blood count is 15..a normal is about 4-10. Dr.Simon said that this is because of infection and anemia, which I now have due to my low potassium and low magnesium from my kidneys.
I go back January 31st.

January 16th- Sinus appointment with Dr. Zacharek
Sinus surgery is planned to be scheduled for mid-February/early March. I have to wait for the surgery scheduler to call me. He's going to fix my deviated septum, remove the massive amount of scar tissue, and open up my Maxillary sinus on the right side because it's completely closed off. There's not much sinus buildup, which is amazing...one less thing to worry about. He said that the surgery will take about two hours and will be a bit rough afterwards. He is having an anesthesia consultant talk with my doctor about making sure that I'll be fine during surgery since my PFTs are so low. Dr. Zacharek told me that for surgery, they consider 60% PFTs to be a C/B- soooo yeah. I'm not worried about the anesthesia though because I've always done okay with it. I have to have oxygen on for a bit afterwards, but have never had any problems relating to the anesthesia. BUT my last sinus surgery was a disaster, so I'm a bit nervous about that. I have a different ENT this time, so we'll see how things go.

Okkkk, so for some exciting news!! I bought Lindsey Stirling tickets for March 16th! Weeee!!! I went to a concert on her first tour and really am looking forward to going again. I'm going with my brother, our best friend, and hopefully my brothers girlfriend.
Also, Joshua got out of the hospital two days ago :) He went in January 6th and was discharged January 16th. He's currently on home IV's and is being treated for infections.

I'm really really tired and need a hot bath, some Mountain Dew, and a good nights sleep.
I've had a bit of insomnia this past week and haven't gotten more than a few hours of sleep every night. I'll try to go to bed, but I just can't. I fell asleep around 1:30 AM the other morning and woke up at 4:30 AM...no matter what, I just couldn't fall back asleep. Its been a repeat of this and my body really just needs to some rest. 

 Sinus Surgery September 2011

 While waiting for the ENT

Last Lindsey Stirling concert

1 comment:

  1. hey Alexandria. I just found your videos on youtube! I'm a CF patient from Scotland and just wanted to send you some love. I hope your surgery goes better this time round and that you're feeling better. You are such a gorgeous girl! (and so is your baby sister - so cute)