Had my bi monthly follow up visit at the UCSF Chest Clinic on Wednesday. This is the latest plan:
- Asthma Care Plan –We tweaked my current asthma action plan whereby I won’t come into the hospital for treatment unless my peak flows drops below 250 and remains there for more than 24hours. The way it was written before, it would have me coming into the hospital every other week. We also changed the Peak flow threshold for bumping up my steroids from 340 to 290.
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Anti Leukotrienes— They added Zileuton ( Zyflo ER) to my drug regime . Zileuton is an anti leukotriene inhibitor used to treat asthma and severe allergies. I’m already taking Singulair which is also anti -leukotriene drug, but it uses a different pathway to block leukotrienes ( Btw…leukotrienes are kinda like really potent histamines that can cause bronchospasm.) There is some evidence that taking both drugs together, may offer better receptor blocking for patients with difficult to control asthma . The only downside ,is that Zileuton comes in a horse pill ( 600mg.) Fortunately, they now have a time release version that you only have to take twice a day.
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Antibiotics– Because I take steroids everyday which lowers my immune system, they also want me to start taking Septra ( antibiotic) everyday, to prevent me from contracting pneumocystis pneumonia ( No, I don’t have HIV) . Coming down with that type of pneumonia in someone with my lung function, would kill even superman. Unfortunately continuous use of Septra can cause some pretty nasty skin rashes.
- Exhaled Nitric Oxide–They’re going to start checking my exhaled Nitric Oxide levels every couple of months when I come in for my PFTs. A high level of exhaled NO is an indicator for airway inflammation and is a good tool to use for adjusting an asthmatics prednisone dosage. My most recent NO was 12.5 ( normal.) which would indicate that there is no need to increase my steroids at this time.
- Effects of Exercise–I’m scheduled to have a repeat exercise stress test done. They want to see definitively, if I have an “exercise induced ” component to my disease, or if I’m experiencing excessive air trapping , or both conditions, when I exert myself. They can do this by hooking me up to a pulmonary function machine and monitoring my airway resistance continuously while I’m on the treadmill. If my airway resistance increases as the test progresses, that would be a strong indication that my air passages are narrowing and therefore I’m experiencing exercise induced bronchospasm. Hopefully this will solve the mystery as to whether or not, too much exertion is detrimental for a certain asthmatic I know. ( wouldn’t that be the pits!) If you’ve ever done this type of test before, then you know they’re not very fun. They basically exercise you until you puke or you pass out. Ohhh I can hardly wait.
- Acid Reflux—Though I don’t have any symptoms of heartburn or acid reflux disease ( GERD), a high percentage of difficult asthmatics apparently have it , and don’t know it. The problems is that it can make your asthma worse if left untreated. So, next month they’re going to cram a tube down my nose into my esophagus and leave it there for 24 hours to measure the acid down there. I’m betting that I don’t have reflux, but Ive agreed to do this, to put and end to this issue once and for all.
- The Rome Marathon –All of my Pulmonologists are dead against me doing this marathon. Citing the uncertainty of how my lungs will tolerate the local climate, the 15 hour flight over and back, the air quality in Rome, and the availability of specialty care if I should need it. My response……..I’d rather die than live in a bubble!
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Wow, that is quite a laundry list. Kudos to you for your courage and determination. I am keeping my fingers crossed for you in Rome – you will do awesome!!!
I guess if I had to take so much medication I’d simply die. No wonder those doctors are against the Rome marathon. Well, it is their duty to hold you back. Knowing you, yeah, you’ll go anyway, unless they shackle you to a hospital bed when the plane takes off.
You relationship to life is amazing.
“My response……..I’d rather die than live in a bubble!”
I could NOT agree more–I was a little bit, um, terrified to let my daughter play basketball on a very competitive league this year, but the look on her face when she makes a good shot is so very much worth it. (and she’s been just fine)
Can’t wait to see your Rome results–I’ll be rooting for you. 🙂
Came across your blog as I lay awake contemplating waking my asthmatic 5 year old up from sleeping (a sleep that came extremely hard after 12 hours of neb treatments every three hours) to do another treatment since she’s reading low. Googling is 91 too low? Trying to remember all the after hour pulmonologist said. 3 treatments, 20 mins apart, if you can’t control it go in.
I’m not asthmatic at all, but it’s so hard to watch your baby gasp for air, asking for help.
She is def like you mentioned in another post, a “poor perceiver” so by the time I know she’s in an attack it takes me so much longer to pull her out.
So thankful for your blog. I will be following for sure. I feel like the doctors talk to me like I went to medical school with them and know what I’m doing?
Sorry to hear that your child has asthma. An O2 sat of 91% is on the low side, but not critical. People of all ages tend to desaturate a little more when they sleep. Because of the nature of the technology itself, O2 saturation readings can vary a lot from moment to moment, so it’s important to make sure that you are getting an accurate reading and use the average or trend as a guide line. Generally, anything below 89% is concerning, but you might want to confirm with your pulmonoolgist of what sat number is the cut off.
Probably a better indication of how your child is doing, is there skin color and how much they’re struggling to breath. Small children tend to be nose breathers, so often times you’ll see what we call “nasal flaring”. This is when the nostrils flare out when the baby take a breath in. It’s a sign that the work of breathing is getting harder. They also use their neck and rib muscles more when they’re in severe distress.
My advise is to educate yourself the best you can about asthma in general, and how exacerbations manifests in children.
Take care
Thanks Stephen!
Yes I feel like I know better, since seeing the specialist, her asthma particulars. I second guess myself with grandma yelling at me to take her to the hospital every time she has an attack. But it’s frustrating when we go and they give her 2 vials of albuterol and send us home.
And now we have the issue of the pedi vs. the pulmonary doc and navigating the sometime contradicting advice. I’m learning for myself all the time that I can read her distress best. Thanks for replying! I’ll be following along from now on!