Better Than This

As I think back 16 days ago, I realize that a lot has happened during my stay here at the University of Miami hospital. In a nutshell it has been constant work, work, work. My goal of trying to get my lung function back up has been a continuous fight while arm wrestling with the infection that has caused trouble in my lungs. My stay has consisted of hours of breathing treatments each day, chest physiotherapy(40 minutes of vest and an hour of manual chest PT each day), lab work, x-rays, Pulmonary Function Tests, and I.V. therapy. At this point I'm running on empty. But I know if I give up, I won't get anywhere.

As I rewind back to the first week I felt a little nervous because I was living in a new place here in Miami and had to find a new doctor. Fortunately, I found Dr. Light. His name had a nice ring to it and he had a British accent. I think he won me over with that haha. He informed me that he had been treating CF for 40 years and I could tell he was very smart. All I could think of was thank goodness he has been doing this for 40 years and I have been doing this for 25...we are going to be a great team! My first impression of him was great because of his positive demeanor. I explained to him that I'm no slacker when it comes to my health. I work really hard and when CF knocks me down, I need him to bring the big guns to help me get back up. I also loved during our first conversations he wanted me to set a goal. I've always wanted to run a marathon...well maybe start small and do a half marathon. :) And Dr. Light was positive that I could do it when my lung function got back up but it would take a lot of work and time. Everyone has challenges, it's how we deal with them that makes us either rise or fall.

They could not get a PICC line in my right arm which led to lots of holes and bruises:


Luckily success on my left arm...my Double Lumen Power PICC Solo, only requires saline flushes for long term I.V. use:


The first guns that Dr. Light pulled from his sleeve was Tobramycin(once a day) via I.V. and Zosyn every 6 hours via I.V. During that first week I felt like I was getting worse. And truly while on I.V. antibiotics my body always goes through the worst before it gets better. After the first week, I did PFT's and my lung function was down another two points at 44% FEV1. I told him that I wasn't discouraged and gave a BIG pft to my PFT's. My mind at this point was stronger then my body and I was holding on strongly to that. The stairs being my biggest barricade, I knew that if my lungs were going to become stronger I had to start with that. Putting one foot in front of the other I kept on telling myself it's only up from here and I can make it happen.

The second guns that Dr. Light pulled from his sleeve was Gentamycin(once a day) via I.V. and Imepenim(every 6 hours) via I.V. because he wanted something a little stronger after seeing my PFT results. That week was rough because I had noticed changes in my body feeling weaker then ever. Throwing up a lot from the I.V. meds going through my veins, weakness, and loss of appetite. I also noticed that when my boyfriend came to visit and we would go walking I felt like I couldn't breathe and I had to stop a few times to catch my breath. I felt like I was running in place and my heart was going to jump out of my chest but I wasn't running at all. We had just thought the medicine was much stronger this time around and that my body was getting hit hard. Little did we know that the reaction would intensify leading to two EKG's, a chest x-ray, not being able to breath on room air, being put on oxygen to breath, and having tachycardia. Unfortunately, during this time my doctor was out of town, and I had 3 brainless doctors working the floor during that week and they didn't know what was causing this reaction. Dur dur dur...if you google the medicine it shows that the antibiotics can cause adverse reactions such as not being able to breathe and tachycardia. I was in shock that the doctors did not have a clue and did not give a proper diagnosis. And it took my brilliant mom, me, and Hunter to figure it out. We knew immediately that it was the medicine and we had to tell the doctors to stop the I.V. medication going through my veins right away. When my doctor was informed he knew immediately as well that it was probably the imepenim that caused this type of reaction to occur and that my mom, me, and hunter did the right thing by telling the doctors to stop the I.V. meds.

Doctors FAIL diagnosis and FAILED words of wisdom that week:
1. "your lungs are filling up with water"...umm no that is mucus you see on my chest x-ray.
2. "you need to stop drinking so much water and be put on a diuretic"...ehhh no if I stop drinking water I will become dehydrated and hell no you are not putting me on a diuretic
3. chest x-ray is performed..."you need to have another chest x-ray two hours later"...umm no what will that prove and what is the logic behind that?
4. "you need to relax and take deep breaths and you will start to feel better"...umm really I'm very calm right now thank you very much even with the situation, it's not anxiety...seriously something is wrong here.
5. "You are walking too much you need to stop"..umm no exercise is good for the lungs and will help me to get better faster.
6. "This is normal it's your CF"...okay who are you and you can go sit in the corner...you will not pass GO or collect 200 dollars.

Overall, thank goodness I didn't listen to them because the situation could have gotten worse if I would have said yes to there stupid comments. I knew that this was not normal, it wasn't my CF causing the tachycardia and not being able to breath...it was an adverse affect from the I.V. medicine and my body just didn't like the drug and reacted in defense mode.

This week, week 3, my doctor is back in town what a relief. Lung function test down two more points to 42% FEV1. After looking at my chart and doctors notes he apologized for the stupid doctors that were on the floor. New guns and hopefully the final guns will be Ceftazadime(every 12 hours) via I.V. and Tobramycin(once a day) via I.V. I know that my body has been on a roller coaster ride and I've had a few minor set backs. Dr. Light knows that we still have a lot of work to do and I'm ready to put in the time if he is behind me. My mind continues to be strong focusing on the fact that things are going to get better and my body and lungs will eventually catch up. Because I have to believe that there is more than this...that I can be better than this.