Monday, November 21, 2011

My New CF Routine

Wow, I can't believe I haven't blogged in so long! I have no excuse other than I have been reading and watching TV after Lily goes to bed, but I'm going to try to make more time for blogging.

These past months have been great. Lily has really outgrown her fussiness and is an absolute joy to take care of now! I am so in love with being a stay at home mom. We have a good routine established. Usually we go for a jog, shower, head out to Gymboree, the park, or a play date, run an errand, eat lunch, nap (well, Lily naps while I clean), and then go to the gym or cook dinner. She's very good at playing independently or watching Sesame Street while I do my meds.

Speaking of meds, the last time I blogged I had just gotten rid of my first PICC line. The PICC line was a big kick in the pants for me. It made me realize that I need to do everything I can to keep myself healthy for a long time. So I've been doing a lot of reading about CF treatments and have gradually been trying new things. And I think they are helping.

At my August clinic visit, three months after I started Cayston, my FEV1 was up 2% to 115%. Not a huge jump, but it was the highest it had been in a while. I asked my doctor about trying n-acetylecystine (NAC) and Pulmozyme. He said he didn't really know if NAC would help but that it wouldn’t hurt to try it, and he hadn't put me on Pulmozyme because he wasn't sure the benefit would outweigh the time it takes to neb the medicine. Well, I can definitely say that the Pulmozyme is worth it. I immediately noticed a difference. It really helped with my junky cough - it was almost like it dissolved my mucus. LOVE IT. I'm still on the fence about the NAC. I take PharmaNAC, which is what is being used in the clinic trials. The trials showed it reduced markers of lung inflammation in CFers, so I'm still taking it, but I don't notice any immediate affect like with Pulmozyme.

I also decided to be more aggressive about treating my sinus disease. When I was on the IV antibiotics, my sinuses felt the best they had in years - no postnasal drip or headaches. Two weeks after the PICC was removed, the symptoms came back. So I went to my ENT and asked if there was anything else I could do. I did not find him very helpful, so I asked my CF doctor for a referral to a new ENT. This new guy suggested I try adding Alkalol to my sinus rinses, (the recipe was 1/4 cup Alkalol, 3/4 cup water, a sinus rinse packet, and a few drops of baby shampoo), and use a nasal spray that consisted of two Singulair tablets dissolved in a 1.5 fluid ounce bottle of saline nasal spray. WOW. What a difference that made! My sinus symptoms were so much better! I almost wanted to kiss him. Even my CF doctor mentioned that I didn't clear my throat as often. So, now my sinus routine consists of the Alkalol sinus rinse, the Singulair nasal spray, a Xylitol nasal spray, and Nasonex.

After three months of the new sinus regime, NAC, and Pulmozyme, my FEV1 was up another 3% to 118%! I am so excited to almost be back at 120%, which is what it was before I moved to Austin from the northeastern US.

And now it's time for Phase III of operation "Get in Peak Shape." My CF doctor wants me to try taking 500 mg of Azithromycin every MWF. It's supposed to help with inflammation. I tried this about eight years ago and noticed it helped, but it also hurt my stomach, so I quit taking it. But, I figured I could give it another shot.

In addition, tomorrow I am starting allergy shots. I'm doing what's call "rush immunotherapy" where I get the first 12 weeks of shots done in a matter of 3 hours. I've been putting it off because it's a lot of time (a shot once a week for at least a year) and I've heard it doesn't always help. But now I have the time and want to give it a try.

My next step is to be better about airway clearance. I have always exercised 4-5 days a week, but I hardly ever vest because it's time consuming and I don't notice that it helps. (And, honestly, I also hate how the vest is so huge and cumbersome.) So, instead I am going to try keeping an Acapella in my car and using that while I am driving around and doing it for a few minutes here and there when I am feeling junky.

So, there’s a long update from me! I am hoping to do more of these from now on!


natalie8784 said...

Yay you're back! I've missed your posts!

cindy baldwin said...

What does the baby shampoo in the sinus rinse accomplish? I am a little freaked out by the idea of putting soap in my nasal passages, but always on the lookout for a better rinse!

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