“Life is filled with unanswered questions, but it is the courage to seek those answers that continues to give meaning to life. You can spend your life wallowing in despair, wondering why you were the one who was led towards the road strewn with pain, or you can be grateful that you are strong enough to survive it.” ~J.D. Stroube
The film on the left is my lung x-ray from a few years ago and the film on the right is my lung x-ray from August 2014.
X-ray taken 2 weeks ago after being on 4 weeks of intravenous antibiotics. Took an x-ray at Dr. Layish's office to see my progress which is shown below:
It has been 6 weeks of intravenous antibiotics, oral medications, and my usual CF bootcamp regimen. I have been fighting a bunch of really bad and deadly infections in my lungs.
The I.V. game plan:
Week 1,2,3: Aztreanam 2g q 8 and Ceftazadime 2g q 8, but I wasn't feeling any better. I still felt tight, like my airways were being squeezed.
My doctor in Palm Beach was very busy and did not have time to call me, he had been in meetings, out of town, and every patient that he had at this time was sick. I was told by his nurse, Lisa, that he was having a bad day. All I wanted was 20 minutes of his time, and he couldn't give it to me. The crazy thing is he has never been like this, he is always able to talk, always available. It was really upsetting because I needed my doctor more than anything at that time. I asked to look at my sensitivity and lab report. And was wondering why we weren't treating the stenotroph bug that I was growing in my lungs. His belief was that it was my pseudo bugs causing the ruckus in my lungs. I, on the other hand, know my body and did not think that the pseudo bugs were the culprit. My gut feeling was that the stenotroph bug or a fungal bug might have gotten into my lungs and was causing some damage. However, no one would listen.
Week 4: Zosyn 3.375 mg q 6 was ordered and I'm allergic to penicillin, and I felt that it only made things worse. I couldn't breathe, my lungs felt so tight as though someone put a plastic bag over my head. Dr. Salathe was out of town for a couple of days. His nurse tried to get me a hospital bed, so that I could be admitted and treated at UM, but they were full with no beds available. I was packed, ready to go.... and then, I was told to go to the ER because there were no beds and wait there. The ER and I do not get along, I don't want any other bugs, infection control is key to survival, and the ER is the least clean place to be. Even if my eyeball was falling out, I would tell Hunter to put a Band-Aid on it.
Week 5 and 6: I needed help and I needed help NOW! I made an emergency visit to my old doctor, Dr. Layish, who was 20 min away compared to a 3 hour drive to see Dr. Salathe. I started taking Septra 320 mg q 8 and steroids. Plus, a new addition, Voriconazole 200 mg tablets BID which is a first. Dr. Layish was wonderful. We did a CT scan of my lungs, sputum test, x-ray, and he even spent extra time going over everything with me because he knows that I want to learn as much as possible about this disease in order to win. I was so fortunate that he was able to listen to me... really listen to me. I am highly allergic to mold and fungus, it grows rapid in the summer time here in Florida. I wanted him to test for ABPA. Luckily for me, he trusts that I know what I'm talking about and ordered it. Dr. Curbelo, the infectious disease doctor, that he partners with took a chance and ordered antibiotics to treat ABPA. And it's working!!! :)
For me, living with CF is like a constant board game or an episode of House, you never know what might happen, but you always want to figure it out or win! Luckily, the game plan is working and I can finally hear air, rather than crackles when I breathe! Septra, Voriconazole, and the steroids are taking the bad guys out! :) Hopefully, the PICC line will be pulled out on Thursday during my follow up with Dr. Layish and I'll be free. In life, I don't want to just exist, I want to truly live. I have things to do and people to see!
Side note: Whenever I go through challenges, or hiccups as I like to call them, I always look at Carrots, Eggs, and Coffee. The story reminds me to try to be a coffee bean no matter what. Read below.
Carrots, Eggs, and Coffee
A carrot, an egg, and a cup of coffee.....You will never look at a cup of coffee the same way again.
A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up, She was tired of fighting and struggling. It seemed as one problem was solved, a new one arose.
Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil; without saying a word.
In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl. Turning to her daughter, she asked, ' Tell me what you see.'
'Carrots, eggs, and coffee,' she replied.
Her mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hard boiled egg.
Finally, the mother asked the daughter to sip the coffee.
The daughter smiled as she tasted its rich aroma.
The daughter then asked, 'What does it mean, mother?'
Her mother explained that each of these objects had faced the same adversity: boiling water. Each reacted differently.
The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak.
The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened.
The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water..
'Which are you?' she asked her daughter. 'When adversity knocks on your door, how do you respond? Are you a carrot, an egg or a coffee bean?
Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity do I wilt and become soft and lose my strength?
Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart?
Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you.
When the hour is the darkest and trials are their greatest do you elevate yourself to another level? How do you handle adversity? Are you a carrot, an egg or a coffee bean?
May you have enough happiness to make you sweet, enough trials to make you strong, enough sorrow to keep you human and enough hope to make you happy.
The happiest of people don't necessarily have the best of everything; they just make the most of everything that comes along their way. The brightest future will always be based on a forgotten past; you can't go forward in life until you let go of your past failures and heartaches.
When you were born, you were crying and everyone around you was smiling.
Live your life so at the end, you're the one who is smiling and everyone around you is crying.
You may want to share this message with those who mean something to you; to those who have touched your life in one way or another; to those who make you smile when you really need it; to those who make you see the brighter side of things when you are really down; to those whose friendship you appreciate; to those who are so meaningful in your life.
May we all be COFFEE!!!!!!
