What a better way to kick off Cystic Fibrosis awareness month than a health update.
Last time I posted about my health, I was doing very well! Unfortunately, just a few weeks after that post it started going downhill. I caught a cold which turned into a chest infection, so I emailed my doctor about getting on Cipro (an oral antibiotic). Well, it took much longer than usual for her to get back to me and fill the prescription, and in the mean time my lungs were feeling it. That was the first time in a very long time, if ever, that it just hurt to breathe. I was exhausted and felt like shit. My doctor was hesitant to give me the Cipro because its not breastfeeding friendly, but I didn't care. I had spent the last six months building a frozen stash of breast milk for this type of situation, so I wasn't too concerned.
We figured out a schedule that she and I were both comfortable with, then she called in a ten day supply of Cipro for me. I would nurse Anna first thing in the morning, then pump. Then I would take my Cipro and pump & dump the milk while at work while the Cipro was strongest in my system. By the time Tim and Anna came home in the evening, I was able to nurse her. After she went to bed, I would take my second dose so it was strongest while we were sleeping. The annoying part was pumping & dumping and bottle feeding on the weekend, but it was worth it to get my lungs back to normal.
Fast forward another few weeks to the middle of March. I was laying in bed one Saturday morning and I feel the 'pop' and gurgle...and I knew what was coming next - blood. I've had lung bleeds before, but not like this one. I tried to do a couple small little coughs, but I could tell this was straight blood and it was going to be a lot. I ran to the bathroom and just coughed it all into the toilet so I could monitor the color and consistency. Finally after a few minutes of straight blood, it started turning thicker, mucus-like consistency, but still bright red. I knew I had to contact my doctor abut this one, especially when it happened again that night and the following morning. This was unusual for me, so I was a little nervous, but I was also confused because I was feeling well prior to it and it seemed like it came out of no where.
My doctor started me on extra vitamin K (helps clot your blood) for a week or so, to see if it helped control the bleeding. After about a week, I didn't have anymore large bleeds and the streaking (mucus streaked with blood) slowed and finally disappeared. Sometimes bleeds happen when a mucus plug becomes loose, when an airway gets irritated, or at the sign of an infection. Since I felt relatively clear, we just assumed it was a fluke and my lungs just being annoying...
Until it happened again about a week after I stopped the vitamin K. This had me worried, but actually mostly annoyed! I was angry that my lungs were behaving this way and I was stumped because there didn't seem to be a pattern of when the blood was coming - it happened in the morning when I was laying down, at work once when I bent over, it happened after treatments... so this had me thinking there must have been more going on than just low vitamin k levels.
I decided to call my doctor and pick her brain, with the intention of getting on Cipro again. She was just as puzzled at what was going on and was hesitant to put me on Cipro again because the specific bacteria in my lungs was slowly growing resistant to it. She said she'd let me try the Cipro for ten days (the 10th day I had a scheduled clinic appt) and then we'd go from there. She said if my lung function was as beautiful as it was in January, then she'd let me stop the Cipro. If not, then we'd have to take a different route - possibly IV antibiotics. THIS FREAKED ME OUT!
I've never been on IVs before and I didn't want this to be the first time. I wasn't ready. What would I do about work? How long would I have to be in the hospital? Would I have to give up nursing - I don't think Anna or I are ready for that. It had me worried, but I tried not to dwell on it too much. I started my round of Cipro on a Monday, and by the following Monday I was feeling great. I was positive that I'd blow my typical numbers on my PFTs on Thursday...
Until Tuesday I woke up with post nasal drip and a sore throat...seriously?! 'Okay', I thought, 'this is just seasonal allergies, no big deal'. Then Wednesday rolls around with a lovely dry, itchy throat cough all day, UGH! I had a tight chest and I wasn't producing any mucus, which isn't typical for me, but I still wasn't feeling
awful, but I was getting a little worried about my looming appointment the next day.
The morning of my clinic appointment, on the drive, I developed a mucus-producing cough so I tried to get out as much as possible. When Anna and I checked into the pulmonary section, we only had to wait a few minutes for a room which was pretty nice. We even got a room with a window which was excellent entertainment for a busy 8.5 month old baby. Soon after getting put in a room, the RT showed up with the lovely PFT machine...I did my first PFT and blew an FEV1 of 83% - thank goodness!! I was so worried they were going to be much lower. I did two more blows with the exact same result and felt a large weight lifted off my shoulders. Yes, my PFTs were down about 5%, but my weight was actually up about a half pound and my lung function didn't drop dramatically, so I felt that I was in the clear for IVs. Until...Anna and I were looking out the window, watching the traffic go by and I coughed up blood, right there in the doctor's office. Ahhhh, when was this ever going to end??? Thankfully it was a small bleed that turned into mixed blood and mucus fairly quickly, but I was so nervous to show the doctor. I thought for sure that she was going to recommend IVs now.
When she first came in the room, of course she had to say hi and talk with Anna before we discussed my health. :) She was pleased with my weight, but reminded me that my lung function was down. We discussed, in depth, everything that had been going on over the last couple months and brainstormed several ideas as to why it was happening.
Thankfully, she's so wonderful and trusts me and how I tell her I'm feeling, and she was not going to put me on IVs right then and there, since I was feeling well and it seemed like I caught something within the last couple days. PHEW!
We decided to attack from all angles - I would continue my Cipro for another week (21 days total), adding Cayston (inhaled antibiotic) on top of it. We were hoping the overlap of Cipro and Cayston for about a week would really knock it out. I was also going to start Nasonex to attack whatever was going on in my sinuses that was not allergies. Then I'd come back in a month to see how everything worked and how I was feeling, and possibly do a round of Tobi (different inhaled antibiotic) just to keep things clear.
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| She was exhausted from my appointment, too! |
So here I am, on day 20 of my Cipro and day six of my Cayston and I'm slowly starting to feel better. Whatever I caught right before I went to the doctor really hit me hard, and I'm glad we came up with this treatment plan because I have never coughed so much mucus out each day as I have for the last week. I think the combination of Cayston and Cipro really has been working. Fortunately, I haven't had any bleeding since the day at clinic, but I'm definitely not back to 100% yet and I'm really hoping the Cayston will help get me there by the end of the month. The talk of IVs and them being a possibility in the nearer future than I'd like still freaks me out a bit, but after conversations with Tim and several of my cyster friends, I am trying to remember that IVs are just another tool in the toolbox, not the end of the rope. I'm very fortunate to be this healthy at this age and that there are still so many antibiotic choices available to me.
