Over the last 4 weeks, I tried to make CF stand for Can Fight!
Whether you've had IV antibiotics one time or fifty times, it's always scary when they tell you your numbers have gone down while you're supposed to be on the drugs that should help you. That's the news I received from my doctors two weeks after I received my PICC line. Instead of getting the PICC line out that day, I was on more drugs and faced a potential hospitalization if my blood work continued to worsen. The drugs had done some damage to my kidneys and my weight had gotten down into the mid-160's. I'm normally around 175. I refused to go to the hospital though. I asked that they take blood again and see if my numbers were a bit better after going off the drug that was negatively affecting my kidneys. If the blood work was still bad, I was okay with being hospitalized. I received a call that evening that my blood work was indeed better since going off the drug and I also had a CT scan to see how my lungs and heart looked. There was a bit of mucous here or there but nothing they wouldn't otherwise expect from a CF patient. I was cleared to continue home IVs but I was definitely frustrated with the PFT results.
As I sit here, I can tell you the most difficult part of being having a PICC line in was watching Andrea do so much not only for me but for the entire family. She was wrapping my arm before showers, mixing my meds, taking the kids places and taking on the role of pseudo-nurse. It was also difficult not being able to carry my kids up the stairs and throw them into bed like I had in the past. Over the 4 weeks on IV's, I'd spiked a fever, been to the ER twice, and had several reactions to medication. It was a tough 4 weeks but there are many CF patients that go through far worse so who am I to complain.
Nurse of the month for March 2014 (the one on the right)
I'm happy to say that a month after the PICC line was inserted, I was finally able to have it removed last Thursday. My PFTs were up from a few weeks prior though still about 7% from my baseline. I did another week of the inhaled Coliston (an inhaled antibiotic) and started a 28-day supply of TOBI (another inhaled antibiotic) yesterday.
Goodbye PICC line!
I had my first personal training session since I had my PICC line removed on Tuesday and considering much of my stamina was not there, I think I did really well. I was walking up and down 10 sets of stairs with 12.5 pound weights in my hands. I was jumping rope again. I was doing everything possible to get stronger. My arm was still a bit sore. As you can see from the picture, it's still not the prettiest thing in the world.
Red is my color.
Over the last month, I've done over 10,000 minutes of treatments and I can tell that my body is tired. I played softball on Monday and did okay. It wasn't my best performance but I knocked in a run and played half the game. Slowly my stamina is coming back.
The last month has been difficult but seeing Avery smile on the medal stand at gymnastics and Ethan shine on the baseball field did a lot for my mental health. I have a pretty good tennis player for a wife too! I'm so proud of all of them.
That's my A!
I knew E would play for the Braves one day.
As we speak, I'm continuing to work out daily and my weight has increased nearly 10 pounds. Just because I'm off IV treatments, it doesn't mean I can take it easy. CF doesn't take any vacation days so I can't afford to either.
On an exciting note, I just got asked to be a speaker at Terry Third Thursdays which is the monthly speaker for the University of Georgia's business school. I will be the speaker for July. Previous speakers have included Jon Schuerholz of the Braves, Bernie Marcus who co-founded Home Depot and Rich McKay of the Falcons. It's truly an honor.
In closing, I want to thank all of you who reached out to me and Andrea and supported us through the last month. I didn't realize how many good people we had in our lives and I feel blessed that there are so many of you. We are here for you as well if you need us.
Thank you for your efforts and your prayers,
Andy
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