“And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again
And I’ll rise up
High like the waves
I’ll rise up
In spite of the ache
I’ll rise up
And I’ll do it a thousand times again”
I love how inspiring and motivational the lyrics are to this song. It perfectly describes what I have told myself here lately….
Well, as most of you know…. I’m back at Texas Children’s. I’ve been known to throw the DR’s some curve balls and this time is no different. When I was discharged from my earlier hospital admission, I went home on a week’s worth of home IVs. Everything seemed to be going okay but I just didn’t seem to get better. That following Monday I had a clinic follow-up with Dr. Hiatt to check PFT’s. We were shocked to find out the percentages dropped, and it wasn’t just a small drop. They were the lowest percentages I’ve ever had. We talked with Dr. Hiatt and decided to send my cultures off to get tested for resistance to a new IV antibiotic for Pseudomonas. With that, he also suggested we do a bronchoscopy. He wanted to see if there was any mucus down deep in my lungs that would provide a better specimen for culture. He also wanted me to be off the IV’s for a week just to give my body a rest before we started all over again. I came back the following Thursday for a CT-scan and another PFT…. and the numbers dropped more. I won’t lie, it was kind of scary. Especially when there’s no idea what is actually causing the drop….
Following those PFT’s he was afraid to keep me out any longer, so “back in” we were. The following Tuesday I had my bronchoscopy. It all went very well. He said there was not near as much mucus in my lungs as he thought there would be. He was able to get very good cultures from both lungs and was also able to rinse some of the mucus secretions that were built up. I felt good when I woke from the bronchoscopy. Seemed like everything was still normal, but later that night, it slowly went a little down hill. I started running a 101.8 fever from the bronchoscopy later that night (the doctors had warned us that could happen). Though not uncommon to happen after a bronchoscopy, the doctors decided to do blood cultures just to make sure my PICC line wasn’t infected or it wasn’t viral fever. Come 3AM I was finally able to get some sleep. But when I woke up, the fevers were still there. My oxygen level started averaging 87-88% so they put me on supplemental oxygen. I know that is not un-common for CF patients, but for me it was. I have never had to be on oxygen before.
Several rough days passed of high fevers and low oxygen. I felt drained. My lungs felt fine, but it was like my body was telling me otherwise. It’s kind of scary to think about….how you can be completely fine one day, something changes, and just like that things are drastically sliding away. The blood cultures came back showing nothing. They did a chest X-ray and it showed some fluid in both of my lungs. The thought was the fluid was left over from my bronchoscopy. We are now doing chest PT (strong physical hand clapping on my back) to help remove the fluid. Yesterday the fever went away and my oxygen has gone back to averaging around 94-95%. My sputum cultures came back and I’m no longer growing Pseudomonas. Which is great! But now the important question…. what’s causing all of this to happen?
Thursday we had a visit from the infectious disease doctors. Turns out my cultures came back growing yeast. Which is common for Fungi, but they can’t identify what kind yet. Fungi takes longer to grow in cultures, but we’re hoping it comes back sooner than we are expecting. I am now on an anti-fungal medication. It does not cover all fungi, but it does cover a fungus called Trichosporon, which I grew about 6 years back. So, if this is what I’m growing now, at least I’m on a medication that covers it. Basically….it’s a waiting game and we’re taking it one day at a time.
I want to thank all of you for the prayers and kind words, especially these past few days. The “water” is a little green (that analogy is for those of you watching the Olympics) at the moment. For those who haven’t tuned in to Rio….TROUBLING is the word. But my life has always proved out that troubling times lead to some of my most beautiful times. I don’t know what’s going to happen exactly next. Where are we headed? Don’t have a clue. But this I do know….His Word and my faith tell me it’s all going to be okay. God makes no mistakes and His purpose is in it all. I trust that. I know that I’ll rise up, I’ll persevere, and I’ll beat this. About a month ago, Craig Sager won the Jimmy V Award for perseverance. During his speech, he said something that really touched my heart:
“I see the beauty in others, and I see the hope for tomorrow. If we don’t have hope and faith, we have nothing. I will never give up, and I will never give in. I will continue to keep fighting, sucking the marrow out of life, as life sucks the marrow out of me. I will live my life full of love and full of fun. It’s the only way I know how.”
This circumstance is just another opportunity for greatness in life. This day I choose joy, love, and peace. We will come out of this stronger than ever!!
Everyone have an amazing day and remember…. just keep breathin’