Sometimes it doesn't pay to wait

My co-worker, Mike, and I at TNC's River Jam Tent at the US National Whitewater Center - June 2012

Hello loyal readers!

It has been some time since I felt inspired to write, and you know what that means. Time for a quick run-down of what has been going on!

The big(ish) news is that I am currently on a 2-week course of IV antibiotics. I had not been feeling spectacular for a while (more congested, coughing more than usual...) for a while, but I was totally hanging in thanks to exercising a lot and my trusty stop-coughing go-to pills, guaifenesen. The cards really started to fall the week that I had a grant writing workshop in Greensboro mid-June - I was feeling super tired and run-down. I got started on some oral antibiotics which worked really well for a week or so when I went to see my doctor.

At that time, my numbers were a hair below what they were last time, which was also a little lower than they had been the time before that. My real concerns were my energy dropping and also that I have two awesome vacations coming up that I want to be in tip-top shape for. So we went for the IV antibiotics. And I knew right away that I had made the right decision. (And, for the record, Todd knew like three weeks before then that it was time for IVs soon.)

The day after I started on them I felt really horrible: tired, achy, malaise, fever, no appetite. But since then, things have been going along pretty well. I haven't had any trouble with the Tobra (I had some tinnitus the last couple of times I was on it, which can correspond to hearing loss) except that they had to increase my dose because my levels were too low.

But the really weird thing about all of this? Unlike every other time I've been on IVs when I would totally beat myself up about missing work and always be trying to do more than I should, I have been totally enjoying my time off! I feel kind of guilty saying that. But who wouldn't love an unexpected 2-week vacation? Of course it's not all fun, but largely I have slowed down and taken time for myself to heal. And it feels really nice.

Image taken from sodahead.com

In other news:

• I am finished with my PT for my herniated disc/sciatica! And I leave there having a solid set of exercises that work really well to control my symptoms. Still have not gotten back to yoga - that is the next step. Also still doing monthly acupuncture and weekly massage (which is absolutely fantastically awesomely paid for by my insurance.)
• Todd's dad has been staying with us a lot lately - he is getting cancer treatment here in Raleigh and lives several hours away. He started chemo (for the second time) recently and he's having a bit of a rough time of it. His health has been really up and down, and it's hard on all of us. Especially him. All of us are focused on our trip to Montana right now.
• I got out with Elaine to sell some soap last First Friday! We sold it at a friend of our's bar. I know it sounds weird, it kind of is, but it's fun. 
• Super excited about going to the beach with my family during the third week of July. And also  for our Montana trip in August!
• Work is going really well. I have an intern! Who is both awesome and really talented. This is my first time really managing somebody and I really like it. Also, I was doing a bit of traveling in June and July - two trips to Charlotte and then Greensboro for the grant writing class. It was nice to get away.
• Probably not news to any of you that the weather here has been brutally hot! We just broke the record for the number of days in a row over 100. Between that and the holiday last week, it's as good a time as any to be missing work and just laying low at home.

Image taken from kbosweeney.wordpress.com

Adventures on IVs

Sometimes it seems like every day on IVs is an adventure. Here are some of the highlights and lowlights of the past week.

• Last Saturday, I had my first Tobra levels which were, thankfully, right on target. That means my dose was good and, more importantly, no rechecking necessary after a changed dose. (Tobra levels require two sticks, pre- and post-Tobra.)
• On Sunday night my arm started getting really red (partially) under where my dressing was. This required a visit from the nurse Monday morning (the third in four days). We discovered that I was probably allergic to a new type of cleaner they use in the dressing change kits. To be safe, we went back to the old cleaner and also used a new kind of dressing for people with sensitive skin. It has been better, but still a bit itchy under there. I think it's just the dry weather.
  
• Tuesday evening was the second evening in a row that I noticed slight ringing in my ears, more like a high pitch sound, actually. It only lasted about 10 seconds. Ringing in the ears can be a side effect from Tobramycin and can lead to permanent ringing - yikes! Tobra can also cause temporary or permanent hearing loss. Unfortunately, it is has happened to a good number of people I know in the CF community. I've had the "ringing" happen before sporadically, but never consistently. My doctors and the home care company were quite concerned...they wanted to know the exact details. Luckily, I had Tobra levels scheduled again for Wednesday so we could make sure my dosing was correct. Unluckily, I've found out hearing loss/permanent ringing is something that can happen even if your levels are in check.
  
• Second set of Tobra levels on Wednesday also ended up being good. Yay! Unfortunately, the second poke hurt like hell. In fact, it still hurts. I admit, I can be a baby about blood draws, but ugh. Sometimes it just hurts like hell. Fortunately, not very often. Question mark on where they are going to draw my next set of levels now that my good vein is out of commission for a while.
• Mid-week was when I really started feeling better from the meds. The biggest change is that my energy is so much better. But my temp is also down, lung pain gone, appetite WAY up...now I'm just waiting for things to look a bit better with my lungs. Still, it's so much easier to deal with all this shit when you are feeling halfway decent.
• Both Wednesday and Saturday, we went to see two good Hurricanes games. Not health related, but still exciting. :)
• Friday night - I had my first beer in a really long time. It tasted really good. Recently, I have basically cut out drinking and caffeine - just to give my body and my mind a break. I like it.
  
• Last night and tonight, I got an "itchy arm" in the arm my picc line is in. It started with a "scratch me" feeling and before I knew it, my arm was all red. No idea what caused it but I hope it's not related to any of the medicines I'm on.
• Did I mention I'm not looking forward to Tobra levels on Wednesday?
  

I guess that's all for now.

Update: Monday am - discontinued Tobra due to overnight ear-ringing (tinnitus). While I am happy to have one less thing to do and not get levels drawn anymore right now, I am a little freaked out about what this may mean for the future. It sucks to have complications with (what might be) the only thing to really kill one of my bugs.

I tried to talk Dr. C into half-dosing until Thursday (which will be the 2 week mark) but he didn't think that was a good idea. He cited some study that shows most people get all the clinical benefit they are going to get after 10 days on IV antibiotics, and I am at 10 days now, so not the worst thing in the world. Honestly, I would be more freaked out right now if I wasn't feeling better. In the future, he said, we may either do Tobra or Tobi, but probably not both at once anymore. And I am to follow up with the ENT for a hearing test in a couple of weeks. Many hearing complications during IVs can be reversed, but some, sadly, cannot.