I was racking my brain trying to come up with an appropriate title for this post and finally settled on this one. I think it works, because in many cases living with and managing asthma can be a full time, around the clock, job. Kind of ironic when you consider all the people who are unable to work because of asthma. Having said that, Im subtracting an hour for good breathing, which is about the amount of time I spend daily on not having to think about my breathing.

This latest revelation came to me, not while I was taking a neb treatment to quell my almost constant breathlessness, but while I was on the toilet wincing through painful cramps and diarrhea brought on by the 500mg of Azithrotmycin I take 3 times a week to control my asthma. Living with severe asthma is more than just coping with breathing issues, it’s also about dealing with the side effects of multiple medications. And while for the most part, the side effects of some of these drugs are tolerable and maybe even predictable, they are nevertheless annoyingly uncomfortable, and have a definite impact ones quality of life.

Take for example the long term antibiotic Im currently on. 3 days a week I take 500mg of Azithromycin, and just like clockwork on those days I develop GI cramps which can last for several hours. This means that on Tuesdays, Thursdays, and Saturday mornings( the 3 days I chose), Im pretty much confined to the house till noon. This means, no morning appts of any kind, no morning walks, no morning anything if away from the house. If it’s essential that I be somewhere early on those days, I have to skip that particular dose all together. And yes, Ive experimented with the taking the medication at different times of the day, but very early morning (usually at 4 am because I can’t sleep), is the best option for me.

But it’s not just the inconvenience of trying to plan your day around diarrhea causing medications, there other more common asthma treatments that eat away at the day as well. Using a few inhalers a couple times a day is no big deal and has virtually no side effects, but having to take neb treatments around the clock for constant shortness of breath, is a huge time killer. On average I take 6 nebulizer treatments per day. If Im sick or flaring you can double that. At 10 minutes a pop, that’s an hour or more per day literally spent on sucking medications into my lungs.

Here’s one that almost every asthmatic can relate to, the side effects of our favorite drug, aka prednisone. Try adding up all the time spent on identifying, treating or managing stuff like steroid induced diabetes, muscle, bone, skin and eye problems, etc. Oddly enough, at least for me, steroids are actually at the bottom of my list in terms of both side effects and time wasted. As I’ve written about in previous posts, I made a conscience decision early on in my disease progression that I would rather be chronically short of breath than to deal with the horrific physical and emotional side effects brought on by high doses steroids. Even though my daily prednisone sweet spot in terms of dyspnea control is around 25-30 mg, Ive been able to live fairly comfortably on only 5-10 mg per day, plus inhaled fluticasone. The most annoying and painful symptom I get from my maintenance dose are muscle cramps. I get them everywhere, especially in my hands, chin and throat muscles. Yes, my throat actually cramps up. not fun. Again, it’s my decision to be under dosed in the steroid department, but I’ve seen this drug literally destroy lives. It can definitely save them in the short term, but you pay for it in the long term.

Ah, but the hardcore drugs are just part of picture, how about the non-medication side effects of this disease? We often forget that the disease itself causes side effects, the biggest one of course being death. But aside from that, there’s stress, anxiety, pain and fatigue that often develops. I don’t care how strong or stoic a person you are, if you can’t breath, you’re gonna be on edge at some point.

As far as actual pain, the most obvious might be chest and rib muscle pain from coughing a lung out. But for those of us who rarely cough, there’s also pain that can develop from the simple act of breathing itself. If your lung function is chronically diminished and/or your airways swell or tighten up a lot, the work required by your diaphragm and accessory muscles to get air in and out of your lungs increases dramatically. The muscles you normally use to breath with become less effective, which causes other muscle groups to become overworked. In my case, I subconsciously elevate and hunch my shoulder muscles when Im tight. That, plus poor posture, makes my shoulders and back muscles hurt a lot. This often affects my sleep, which leads to even more fatigue.

Finally, there’s the time and suffering consumed by asthma exacerbation themselves, hospitalizations and post recovery periods. Last year alone I spent 54 days in the hospital and appx 150 days recovering from those hospitalizations. Throw in frequent and often multiple doctor appts, ongoing lab tests, VAP maintenance and visits to the pharmacy, and you’re officially working full time for your disease.

Thankfully, some of these not so pleasant treatment medications can, and do, yield some positive benefits. Since beginning on long term macrolide therapy, Ive had fewer flares that required extended hospitalizations. So to me dealing with the pesky GI side effects is totally worth it. Id much rather suffer from nausea and cramps a few days every week, then spend another minute on a ventilator. Likewise, in keeping my prednisone intake to a bare minimum (at the expense of not being symptom free), Ive had fewer steroid related complications over the years than most people, which means I can exercise more, which in turn help counters some of the other negative aspects of the disease.

So there you go, just a few examples of how much of this particular asthmatic’s life is consumed by the burden of the disease and the modalities required to stay afloat. Everyone’s asthma and the way they deal with it is different, so its really a matter of adapting and what a person is willing and able to put up with in order to live a halfway normal life.
One thing that I think we can all agree on, is that living with severe debilitating asthma is not for wimps. It’s a full time job that has lots of ups and downs, but mostly downs. And just like a real job, you do it because you have to to survive.

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11 thoughts on “Asthma 23/7

  1. I’m reading this about an hour after having that bloody tube pulled out of my throat. (I can think of stronger wors but I’ll be good). You’re right, asthma like this is not for wimps. I for one would prefer another fractured elbow to this!! Anyways I appreciate your blog and I’m glad that the macrolides seem to be helping! Me I’m just waiting for approval for Fasenra!

  2. Good good after reading all this I think I’d rather let nature take its course. I’m in the process of filling out my advance directive as I have an appt and the Dr has asked me for one 3x. I have alpha one copd. Fev1 around 25%. I don’t want intubated, vented or anything invasive. Just nom invasive bipap etc. all these heroics are placing my family in poverty and I’m going to die anyway. As long as I’m comfortable I’m good. I’m not having a blast with my illness anyway. I’m sick a lot. Diarrhea daily from meds. Can’t do anything I used to. And reading all I do it sounds like it’s only going to get worse.

    1. Typo Good God

      Sorry for the negativity…but crappola Stephen..where you get your drive is beyond this mans brain

  3. Im so sorry for what you’re going through. Ive had breathing issues all my life, so its probably a little easier for me to tolerate. That, plus I take Ativan to keep my anxiety suppressed.

    You’re doing the right thing though, by filling out your advance directives. It helps alleviates any doubts about your wishes should you be unable to speak for yourself.

    I obviously don’t know your entire medical history, needs or wants, but have you looked at research centers, specialists, experimental treatments or meds, compassionate use drugs, etc? I know that UCSF ( where I go) treats a lot of alpha 1 patients and does a lot of ground breaking research.

    If none of that appeals to you, how about Palliative care? Are you in a Palliative care program now? It’s different than hospice, so you don’t have to actually be dying. Nothing changes as far your treatment plan, but the primary goal is to keep you as comfortable as possible with whatever it takes.

    Wish I could offer more, but I’m not super familiar with alpha1 therapy.


  4. I want you to know you inspire me to do better. When i have the money, I’ll definitely have to have tests done to see if it’s really just vocal chord dysfunction. Forgot to respond before. Thank you for the thought.

  5. Has anyone had severe GERD side effects from steroid inhalers? It just seems to be getting worse and worse, the symptoms keep me out of breath for hours. I’m struggling every time I eat now. I just stopped Advair, and my doctor switched me to Breo, and I’ve been on Singulair for four months. The first couple days of Breo I felt okay, but now I’m feeling more of these GERD symptoms flaring the asthma. Has anyone else had this problem?

  6. Thank you for taking the time to help those of us who don’t know what the hell is going on since being diagnosed with Asthma. I have been fatigued and coughing for over a year now and only just recently diagnosed with Asthma. It is a constant battle dealing with the low energy and constant coughing night and day. My doc explains to me I have no energy as a result of lack of oxygen. Always frustrated and alarmed at my coughing fits, I in desperation typed into Google, Long term effects of Asthma and got your Blog. Bless your heart. I was in complete denial about this condition until I read your Blog. You are a kind, thoughtful man.

  7. Hi Karen, Thank you for the kind words. Im sorry to hear that you have asthma. From your description it sounds like you have cough-variant asthma. I can only imagine how tiring it must be to have uncontrollable coughing spells. If you haven’t already, I would suggest that you have a completely work up done by a pulmonologist who specializes in asthma ( yes, there are subspecialists) to make sure you’re getting the most appropriate treatment for your type if asthma. Above all, take an active role in the treatment of your asthma and never settle for anything less than good breathing.

    Wishing you the best,

    Steve G

  8. Stephen,
    I’m interested to know if you’ve experienced adrenal insufficiency as a side effect. My youngest with severe asthma was just diagnosed.
    Also, sort of unrelated but I’m asthmatic myself suffered badly as a child and under treated back then which has resulted in a lot of lung scarring and chronic reduced function. Reading your posts is so inspiring for me to keep up with any and all exercise I can do to benefit my CV health. You may not realize it but you make a very big different to a lot of people ??

  9. Hi and thanks. It’s very kind of you to leave such a nice comment. I write what’s on my mind and what Ive experienced personally. If it helps others, that’s awesome.

    I have indeed had adrenal problems, though not as severe as some. Steroids are a double- edged sword. Sometimes the side effects are worse than the disease its treating. I try to balance the good and bad by taking the very minimum to stay alive and functioning.

    Keep up the exercise, it can only help.


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