asthma, the plague, and wishing for a cure

For the first time in two-plus years, I didn’t complete a 12 of 12. I only took six pictures. I was sick, and at the lake, and nothing really happened. I tried, but they didn’t happen. I was thinking I could cheat and post a bunch of random pictures, but in reality, I feel like it’s not legit if I didn’t take them on the 12th.

And when I say sick on Saturday, I mean full-frontal cold sick. Like absolutely ridiculous. I’ve had bad colds before. I’ve had long-lasting colds before. And I’ve had these with asthma before, but nothing quite like Saturday was.  This is The Plague: Friday night was the Leg Cramp from Hell, thanks bronchodilators leeching all the potassium from my muscles, in which both the posterior and anterior muscles in my right calf cramped up simultaneously.  Saturday was the coughing spasms, a continuation from Friday but incredibly intense and body-wracking. I did two doses of the inhaler and three nebs on Saturday to try to keep the cough to a minimum, and I really can’t stand to think what they’d have been like without the nebs.  Sick with asthma? For me, this is it. It’s countless hits of inhalers and multiple daily breathing treatments. It’s coughing so hard my ears pop. The coughing and the nebs are probably what lead to how my voice sounds:

Because you know what I’ve noticed? It’s all about better treatments. All the research. Never mind that we don’t know what causes this stupid disease, we know the root of it [inflammation and constriction of the muscles surrounding the airways in the lungs] and all research seems to care about is treating it. I benefit every single day from this treatment, and I am so grateful. But when one is to speak of advances in asthma treatment, there have realistically been very few in the recent past. even in the last 20 years, the medications are still much the same as they were in the 80s and 90s, with perhaps some modifications in how we are able to administer or dose our medications.  I’m not saying maximizing treatment options isn’t important. This affects my day-to-day life.

But I really want to see somebody trying to figure out the cause of this disease. How to interfere with that and stop this disease from developing to begin with. And once that’s found, figure out how to reverse the process so that we can cure this thing. It’s not about scientifically bunk treatments like bronchial thermoplasty [because surely burning the inside tissues of the lungs down works to affect the muscle on the outside from constricting, which is the bulk of the significant problem aside from inflammation in more severe asthma], or about the inhalers, or whatever “miracle cure” herb you’re trying to shove down my throat. I’m not into that. I want someone to figure out the pathophysiology and cure me, dang it. I don’t mention the word cure often because it’s too big to even think about. But I want one.

And when better to express my wanting people to actually care about a cure for asthma than asthma awareness month?

Because somewhere along the line, we have to stop settling for “good enough” and start reaching for “gone forever”.

14 thoughts on “asthma, the plague, and wishing for a cure

  1. I also don’t think about the word cure often because it depresses me. Reminds me that I have this incurable disease which I generally take for granted and as default.
    I remember when I went to this asthma conference (which I think was actually the official introduction of Qvar in Israel) once in Tel Aviv and they had all these pulmonologists speaking and it pissed me off because basically they were all saying stuff about how awesome asthma treatments are now and how there’s no need for them to improve any time soon and that the biggest challenge is getting patients to be compliant with their meds. Even if the meds worked perfectly (which I don’t think any of them does 100% of the way 100% of the time), we’d still be dependent on them. Pissed me off that there was no mention of a search for an ultimate cure. But I guess that’s what you get when you go to a conference sponsored by a drug company. Drug companies piss me off sometimes. On the other hand, there was delicious free food there.
    Meds are the same as the 80s and 90s? Maybe I had the illusion that they were improved because of the better dosing methods and the combo drugs?

    1. To me it sounds like meds haven’t improved much. They’ve combined some, they’ve made or re-formulated some meds [Qvar for example, is one of the oldest corticosteroid formulations on the market, I think. Next to Pulmicort anyway] or changed devices, but the meds are still the same. You’d think with how many people use Ventolin there’d be more than two alternatives to plain old salbutamol/albuterol, but there’s only Xopenex that’s of the same class, and it’s only available in the US, and Maxair [pirbuterol] that’s in the breath-actuated thingie. Aside from maybe throwing the discus and the turbuhaler at us, everything’s still the same delivery. And the thing is, with Xopenex and Maxair being available in the US, everybody still just uses Ventolin or the generic equivalent because it’s cheaper.

      I’m interested to see what the say at the Asthma Congress about meds. It has partial funding from Merck and somebody else pharma, so we’ll see if they work their edge in. Or give out asthma swag.

  2. Also, why wouldn’t bronchial thermoplasty work? A big part of asthma is inflammation of the airways. Hence we’re all throwing steroids at our lungs all the time – to keep the inflammation down. Inflammation = swelling = taking up more space = less room for air to get thru. So wouldn’t thermoplasty keep that from happening?

    1. The bit with thermoplasty is it claims to work on airway smooth muscle. As you know, there’s a layer of tissue between the airway smooth muscle [which is not only on the outside of the airways but a layer on the inside, thus the “burning away” of it] that thermoplasty claims to burn away. This doesn’t act on the OUTER layer at all, and targets the muscle constriction factor, not just the inflammation–thermoplasty doesn’t even act on the inflammation. The other piece is, is that because of the pathophysiology of asthma and how it develops, and they can’t figure out WHY yet, is there possibility that the “burned” tissue could regenerate?

      I guess I shouldn’t say that it’s crap, but I think it hasn’t been deeply explored enough yet and is effective for such a small subset of people [a person in the FB group had it done and her PFTs haven’t changed any] that I feel that it’s a bit drastic to be burning away lung tissue when they don’t know long-term benefits or risks.

      I’ll look into this more though

      1. It’s like how I’d do laser eye surgery if people knew what the long term effects were. but it’s too new and I’m young and have a long life ahead of me that I need my eyes for (that said, my mom had laser surgery and she’s happy with it). I always thought thermoplasty was a good thing?

        1. I think down the road it will be. Would I give them my lungs right now to put bronchoscopes with probes down? Nope. Like you said in the past, I think a cure would probably involve some sort of thermoplasty type thing, but it’s still too early I think.

  3. hey kerri girl i miss you and see you are doing a good job a rasing awareness for asma loves u
    love katrina from church

  4. I completely understand how frustrating it can be when you want nothing more to be better and not have to worry about asthma daily etc. and I think you’re doing a great job of raising awareness.
    However, putting aside the fact I suffer from asthma and looking at it from a scientific point of view- it’s very difficult to find a cure when conditions such as asthma are still relatively poorly understood. Asthma is such an umbrella term that a cure for “asthma” is probably not feasible. They may find effective treatments for subsets of symptoms (I’d argue that there have been advances in treatment- but you have to bear in mind the length of time drug development takes), but currently our understanding of the different mechanisms of asthma and the reasons for differing disease severity/ presentation are still fairly in their early days.
    On the subject of BT, it’s easy to write it off because it’s new and the long term effects haven’t been characterised fully, but then looking for a “cure” has to start somewhere. There are fairly rigorous controls with regards to new treatments and BT performed well in animal models and in patient studies (although the numbers here are admittedly relatively small) resulting in statistically significant improvements in airway hyper responsiveness. I can link the journals if you’re interested, though I know I’m just hyper geeky on all things sciencey!
    Anyway, hope you’re feeling better now and take it easy!

    1. Thanks Becca! I’ve looked at many scientific resources, but I still feel that it’s pretty early to determine long-term safety in burning lung tissue, you know what I mean? I completely agree with the “Research Methods” perspective though, so thanks for that :].

      Also I really appreciate your taking the time to explore the umbrella that is asthma, because it’s so true. I guess I’m just impatient and I want to see things change sooner rather than later, even though I know that’s probably pretty unrealistic :].

  5. Kerri,

    i just had my 2nd BTS treatment. I have severe asthma as long as I can remember. You may be right on BTS. But I thought it was worth the risk in order to perhaps improve my life. that would be so awesome!

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