The only thing Ashley and I have ever really fought about is her unwillingness to do her nebulizer treatments with any real regularity.1 From what I can tell, pretty much the entire cystic-fibrosis/lung-transplant community hates doing nebulized treatments. There seem to be two camps: those who complain about it and do it, and those who complain about it and don’t do it.
Ashley falls into the second camp. I fall into the first camp. Except they’re not my treatments to d, and long ago I decided that my job was not to make Ashley do her treatments. I hold to this for two reasons. Firstly, I refuse to take away her right to choose. Secondly, that line between caring for someone and making someone feel sick lies right there, right at that point of forced treatment.
And I understand. The treatment has two parts: a treatment of albuterol2 followed by a treatment of TOBI. With her current nebulizer it takes roughly 20 to 40 minutes. The electric air-pump is loud, making it difficult to even watch TV whilst doing the treatment. The set-ups – the tubing and the nebulizer – are hard to clean, prone to clogging because TOBI is a bit viscous in its liquid form. The whole thing pretty much falls squarely under the classification of hassle. And plus she’s supposed to do it every other month, every day for the entire month. Who has that kind of time?3
So I get it. I really do. But we’ve fought about it in the past and recently it’s taken on that edge of things you don’t mention because it’s just dangerous to go there. But I told her I was going to rat her out to her transplant docs. Call me fink. Tell me I’m playing dirty. I’ll agree. But I at least warned her.
As expected, doctoral brows furrowed at my revelation. They were a bit disappointed, but not surprised. Like I said, no one wants to do TOBI. But one of the docs asked what we were going to do about it.That’s when I brought up eFlow Trio, a new type of nebulizer semi-recently approved and tested for using TOBI. I read about in the blogs of various cystic friends and on discussion boards. The single greatest draw to eFlow is that it cuts treatment time in half. Which makes it pretty much awesome.
Her doctors agreed that it’s a great route to try, and that Medicare would cover it despite that she already has a nebulizer. They told her to ask her CF docs to prescribe it for her, along with the different version of TOBI that the eFlow requires.
But the CF docs called Ashley the next week saying that eFlow wasn’t approved for TOBI but only for some other type of medicine that I can’t recall. Ashley had to tell them that it had, in fact, been approved. Had to tell them she was talking about the Trio, not the other one. Basically had to inform her doctors on what they should have known in the first place. Gack.
Anyway, about a week later, after several phone calls, her CF docs approved of her getting an eFlow, but wouldn’t write the prescription. They told her to have Pittsburgh do it.
This is the greatest frustration in dealing with everything Ashley has to deal with. She has teams – plural – of doctors: her CF docs, her transplant docs, an endocrine doc, a nephrologist, and a gynecologist. Pittsburgh is easily the easiest group to deal with, which is great since they’re the only ones I really trust. But her local CF docs, while they’ve done well enough over the years, are infuriating and frankly even childish sometimes. They each have their own interests and agendas. They each want this test and that test, this lab work and that. And no one shares results at all. She pretty much has to keep her docs apprised of everything the other docs have said and done. It’s completely ridiculous, and, as in the current eFlow situation, puts unnecessary stress on the person they’re ostensibly trying to keep healthy. It’s just stupid.
But anyway. Her Pittsburgh docs thought her CF docs were being weird about it but went ahead and wrote the script. She should be getting the new machine soon and hopefully will be more inclined to actually going through with the treatments on a regular schedule. And then she’ll have to update half-a-dozen doctors about it.4
- For the uninitiated, nebulizer treatments deliver an aerated antibiotic, TOBI,1 directly to her lungs.
- Tobramycin inhalation solution, usp nebulizer solution. Novartis Pharmaceuticals Corporation. When inhaled it is concentrated in the airways and is especially excellent at fighting Pseudomonas aeruginosa, a Gram-negative, aerobic rod belonging to the bacterial family Pseudomonadaceae. Pseudomonas aeruginosa is an extremely opportunistic bacterium, rarely infecting uncompromised tissues, but it can infect almost any type of compromised tissue, causing UTIs, dermatitis, bone and joint infections, and the good ol’ respiratory infections which of course are our concern here.
- Albuterol sulfate, a Beta2 –agonist. Also used in nebulized asthma treatments, it relaxes the bronchial airways. For TOBI treatments, this is essentially prep-work readying the airways for the real powerhouse medicine.
- The biggest problem Ashley has is that she’s so busy these days that if she sits still for more than ten minutes she’ll quite likely fall asleep. Since she breathes through her nose when she sleeps, the treatments do little good when this happens. And plus they take like an hour.
- Pre-post update! After I’d written this but before I’d published it – in other words, just NOW – Ashley texted me to say that Medicare approved the Trio and we should receive it next Wednesday. She used an exclamation point in said text, which leads me to think maybe she’s actually excited about doing treatments with the new device. This is about the best thing ever. I worry and stress so much about her not doing TOBI, and I hope the Trio works for her. Then we’ll have to invent things to fight about.