Rush Immunotherapy

Before I talk about my allergy shots, I want to answer a question about baby shampoo. There is an article here about why I add it to my sinuses rinses. Basically, it helps rinse away thick mucus and can inhibit the formation of pseudomonas biofilms.

So, last week I began my allergy shots with Rush Immunotherapy, which is just a fancy term for "getting the first three months of allergy shots out of the way at once." I got a total of nine shots over the course of about 2-1/2 hours. It was not bad at all. The first five shots barely hurt. Then next four (which was a stronger dose) felt like a bee sting, and my arms were itchy and got welts on them, but that was it. Totally worth it. Now I will start getting weekly shots for at least nine months.

One strange thing I noticed at the appointment was the result of my peak flow test. I have a peak flow meter at home, but I haven't really used it. At the allergist, they had my do a standard pulmonary function test, and my numbers were the same as they have been at CF clinic (100% +). But, then they had me do a peak flow measurement, and it was much lower than it should have been for someone my age and height, according to the nurse. I should have blown 488 L/min, and it was all I could do to get that thing up to 400 L/min. I asked the allergist about it, but he didn't have much of an answer other than, "The peak flow meters take practice." Well, I have since been "practicing" at home and I still can't do any better. I'm going to have to ask my CF doctor about this at my next appointment.

Here's to hoping the shots help with my CF symptoms!

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!

PICC is Gone!

Good news! My FEV1 was 113% and I the PICC is gone! I met with the physician's assistant at my CF doctor's office and I asked a ton of questions.

The PA took my questions to the doctor. He said that, if I want to be aggressive, I can go back on a bi-monthly nebulized antibiotic. My understanding is that aggressive treatment leads to better health, so I agreed, (even though I don't really want to do another another neb!). Luckily, instead of going back on Colistin, they want to put me on Cayston. I say "luckily" because the Cayston only takes three minutes, three times a day, is portable, and the timing is flexible - I just have to do it at least four hours apart, so I could do it one day at 8:00am, then at 5:00pm, and then at 9:00pm, and then the next day do it at 8:00am, noon, and 5:00 pm, etc.

I also asked about the possibility of doing tune-ups in the future. As much as I hated being on IVs, I must admit that they made me feel awesome. My cough and post-nasal drip are totally gone. The PA agreed that it may be worth going back on IVs once a year even though my PFTs are fine. So, despite all the complaining I did during these past two weeks, this is something I am definitely interested in. I want to see how long my cough stays away. If it's a significant period of time, I think it's worth two weeks of suckiness. Not only because the cough is annoying, but also because I can't imagine that there's not some sort of lung damage going on when I have that cough, despite steady PFTs.

Of course, this morning I woke up with a sinus headache :P I made an appointment with my ENT for tomorrow because you would think two weeks of IV antibiotics would take care of my sinuses!

Trying the Crib for Naps (Again)

Well, here we go again. I've tried to get Lily to nap in the crib twice, and both times it was a big FAIL. She has been napping in the swing for most of her life (or the car seat if she falls asleep in the car). The first time we tried to get her to nap in the crib was at four months. We tried cry-it-out and she would cry for a while, fall asleep for 20 minutes, and then wake up again and cry until I got her, (and I let her cry up to an hour and a half to try to see if she would fall back to sleep). The same thing happened when I tried at 6 months, and I tried for ten days that time! It was awful because she was soooo tired and fussy from napping so poorly.

It's been almost five months now, and I have been procrastinating on trying again. After all, she sleeps well in her crib at night, so I'm not worried that she is going to need a swing for the rest of her life. But, two things have happened that make me think it's time to try again: Her swing broke, and she learned how to roll from back to belly. I've been getting her to nap by putting her in the broken swing and giving it a big push, which has made it swing enough for her to fall asleep. But, today that didn't work and I watched her in the monitor as she was wiggling all over the place, trying to roll over in the swing! So, now she's been in her crib crying for 15 minutes. I hate this!

Almost Done

I am supposed to get this PICC line out tomorrow, and I am so glad! I have an appointment with at CF doctor's office, and they are supposed to take it out if everything looks good. I will be shocked if it doesn't, considering I feel great. I actually feel better than I normally do when I am not sick. I typically get a cough from mid-morning until lunch time, but that has been 100% absent this week. I am curious to see what happens once I stop the IV antibiotics.

This past month has been so exhausting, I have that I-want-to-throw-myself-off-a-cliff tiredness that I had when Lillian was a newborn. One more day. One more day. I think I am going to sprint into my bed right after Lillian falls asleep tomorrow night.

I Must Be Crazy

For some reason I thought it was a good idea to administer the Ceftaz in the middle of the night instead of at something reasonable like 10:00 PM and 6:00 AM. Greg and I both agreed 3:00 AM made sense "because it's easier to go back to sleep in the middle of the night." (That's a quote from Greg.) Plus, then my daytime dose would be at 11:00 AM, which would make it a lot easier to get out of the house and do stuff, instead of having to worry about running home to take my med out of the fridge.

Right. Greg has been awesome and getting up at 2:00 to take the Ceftaz out of the fridge so that I don't have to wake up at 2:00 and 3:00. And he can go right back to sleep. The problem is, I need to be "on" in order to administer the med, so, once I have been awake and concentrating for 15 minutes, I have a hard time falling back to sleep. Added to that the facts that I was up coughing half the night for two weeks before starting IVs, I can't go to bed before 10:00 because I have to pump, and Lily wakes up at 6:00 every morning, (and sometimes earlier), I am absolutely exhausted! And this morning I could not fall back to sleep after my alarm went off at 3:00. I think I am going to start shifting my schedule for the last few days of this medication, because I feel like I have a newborn without the screaming baby.

Oh, and CF clinic called earlier this week and wants me to be on IVs for two weeks. I almost started crying. They said it was because I was having such a hard time kicking this thing and orals didn't work. I was confused because I thought the reason oral didn't work was because they were treating me for Staph when I had PA. Anyway, the IVs have worked great and I am staying on them for two weeks. I've felt back to 100% for several days now, so hopefully the extra days on the meds are doing some hard-core ass kicking.

I will admit that I did find it ironic that they also told me they wanted me to do a 14-day course "because you are tired from taking care of a baby." Actually, I am tired from taking these medications!

Day Five on IVs

Being on home IVs is not too bad. I administer Tobra once a day and Ceftaz three times a day. The Ceftaz only takes about 10 to 15 minutes from the time I start washing my hands until I am throwing everything in the trash. I do it at 3am, 11am, and 7pm, so the worst is having to wake up in the middle of the night. For the 11am dose, I put The Muppet Show on TV to distract Lily. And then I don't have to mess with my IV for the rest of the time I am home alone with her.

Things are pretty busy once Greg gets home from work. The Tobra takes over an hour to infuse, so I start that when he gets home at 5:30. I do albuterol and hypertonic saline at the same time, and Greg throws together an easy dinner while he watches Lily. And then we all eat. (while the Tobra is still being infused). Then I make some ginger tea because the Tobra makes me feel like upchucking. After that, I administer the 7pm dose of Ceftaz. And then I vest for 20 minutes. Shortly after that, it's time for Lily's bath, so Greg does that while I rinse my sinuses and clean the kitchen. Then I comb her hair and brush her teeth, and Greg reads her a book and puts her to bed. She cries at bedtime now, which sucks, but it's better than risking her getting a high dose of Tobra through my milk. At 9:30, I pump for 20 minutes and then go to bed. I will say that this would not have been manageable if Greg had not canceled his work trip!

Oh, and perhaps most important of all, I am feeling better. I'm not 100%, yet, but I have more energy and I am coughing a lot less.