I got home close to midnight thinking this was not the start of the 23 day cycle I wanted. I call it a 23 day cycle because I figure to be on oral antibiotics for 14 days, IV antibiotics for 15 days and TOBI for the final 7 days while on IVs plus another 8 days after that.
I got to the hospital at 9am Wednesday morning and the IV surgical insertion went very well. Of course when I got home my arm started getting itchy and before I knew it my arm looked like one big rash. My second nurse realized it was a reaction to Iodine that they'd used to insert the PICC line. I was also having numbness on my lips which was a reaction to one of the drugs. The numbness has all but subsided as they slowed down the speed of one of the drugs. The nurse cleaned off most of the Iodine so the itchiness is still there but not nearly as potent. Notice I mentioned the second nurse. My first nurse was a nightmare. First he smelled like smoke. Secondly, he was coughing the entire time. Third, and thank God Andrea noticed, he mixed my drugs incorrectly. Even worse, he told Andrea it shouldn't make that much of a difference. When I spoke to the pharmacy, I told them I wanted my nurse changed and they immediately made the change.
Last Thursday evening my forearm had swelled to over 13". Just so you understand how big that is, my left forearm is only 10". So at 1am on Friday we were back at the emergency room. The doctor and Andrea were concerned about a blood clot. Fortunately after several tests, everything was ok. I had to keep my arm over my heart 3 times a day and ice it each time for at least 20 minutes. My arm is slowly looking like "my arm" again.
As I write you, I'm on Day 16 of this crazy ride (day 15 with the IVs). Yesterday I had to stop the IV meds because my kidney function was too high and so I had to flush my body with saline for 7 hours over the last 2 days. There are moments that I get a little down and even a bit stir crazy. I've had to cancel my personal training sessions for now as I just can't afford to sweat too much with the IV in. In fact, since the blood tests revealed some kidney issues, I've had to stopped working out until my appointment. Andrea pointed out that is only ONE day. I told her for a terrific athlete like myself that's a lot. She laughed and kept laughing. "Hey, it wasn't that funny!"
Making IV stand for I'm Victorious!
I am still working out for 30 minutes a day on my own (until today)and walk the dog around the cul-de-sac at least once a day including 2.5 miles yesterday prior to getting my blood test results back. Magic has been great. She lays by my side a lot. I got through half of season 2 on "Breaking Bad" but I stopped watching it as I think seeing someone with a lung disease made it a little difficult to watch. I didn't know he had that issue till I started watching.
Andrea has been an amazing nurse. She mixes a few of my drugs every night and stays ultra-positive throughout. I try to stay positive and not let the kids see all of the vulnerability I have. I have made each of Ethan's baseball practices and games and both of their parent-teacher conferences. Still with my medication schedule, I've had to cancel several things on my calendar.
Here is my current schedule:
Time start varies: Work out (30 minutes)
Time start varies: Vest Therapy with Pulmozyme and Hypertonic Saline (Time: 40 minutes)
Time start varies: Clean Nebulizers, take Levaquin (oral antibiotic) and do inhaled antibiotic TOBI (20 minutes)
7:00AM - first IV drug (60 minutes)
8:00AM - second drug (90 minutes)
Time start varies: Walk Magic (20 minutes)
3:00PM - Second dosage of first drug (60 minutes)
8:00PM - Second dosage of second drug (90 minutes)
11:00PM - Third dosage of first drug (60 minutes)
I also take another oral antibiotic Azithromycin 3 times a week not to mention another 30 or so pills for digestion per day.
Honestly it's a bit overwhelming at times but I'm handling it. One thing I am taking from all of this is all the looks of awe when these nurses and doctors find out I have cystic fibrosis. I think they're in shock...and I don't think it's just to make me feel better. Of course, it does just that.
Tomorrow will be nerve-wracking. In a way, I want to see the doctor so he can pull my line but I also am worried he'll say nothing has changed or worse, I'm getting far worse. I just can't tell though you'd think I could. I can definitely tell that the drugs have affected my balance, my strength and my ability to function but I hope they've also done a number on my lungs.
Thanks to all of you for your kind notes. You don't know how much it means to hear "You got this" or "Go Andy!" Those of you who have brought meals or just taken the kids for us are much appreciated.
I hope to have the IV out tomorrow so I can pick my kids up again, hug Andrea tight and grab a softball bat and take vengeance against all the pitchers in my league. But if things don't work out, I'll still do those things...I'll just have to wait a little longer.
Best Wishes and good health to everyone,
Andy
