During my last clinic visit, my doctor and I discussed being more pro-active with treatments, including Pulmozyme or Hypertonic Saline. She didn't seem to think I needed both, but that I should use one or the other to keep my "post-IV" lungs clear. My treatment ended nearly two months ago and my lungs still feel really clear. I discussed using Pulmozyme and HTS with my previous doctor and his response was "let's save that for when you lose lung function." New doctor is taking a way more pro-active approach, which I am thankful for.
I decided to go with a trial run of Pulmozyme. On Monday I ordered new tubing and mouth piece for my nebulizer. Later in the afternoon, I received a phone call to schedule the delivery of my new nebulizer...the whole package, including a new compressor. I have no idea why, but the insurance authorized a whole new nebulizing system. And with no co-pay. So, now I have two compressors. Although it seems nice to have a back-up or one that I could even take to work, I am hoping to donate my older model to someone less fortunate than me. If you know anyone that could benefit from a new compressor, let me know.
Yesterday, I started my first dose. I was excited to find the treatment only took about 5 minutes. I was disappointed to find the prescription was written for 2 treatments a day. Working full time it is really hard to fit in treatments in the morning, especially when trying to balance out getting enough sleep. But with the treatment taking such a short amount of time, it should be no dig deal...as long as I remember! I am feeling very motivated however, so I am hoping this is not a problem. I feel so lucky to have this treatment available to me and at little out-of-pocket cost. I would be disappointed in myself to have all this available to me and then not use it.
That's awesome that you're getting started on Pulmozyme. I don't know why a doctor would prescribe it for a CFer only when they were having an exacerbation... It's a mucolytic; an aerosolized enzyme that breaks down mucus, resulting in thinner mucus. I never skip Pulmozyme. I really do notice a difference, I hope you do, too!!
ReplyDeleteI wish I could use Pulmozyme. I did once, but our present insurance won't cover any of it and we just can't afford it. I've checked into the assistance programs and we don't qualify. They just look at the amount coming in and not what goes out!
ReplyDeleteI hope you find it beneficial and it helps your lungs stay clear for a long time.
Riley hasn't had any lung problems either. But they put her on Pulmozyme, at 15-months-old. I'm sure it's just preventive also. And she's doing great! :)
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