The events of recent weeks has made me think really hard about just how long I want to continue this fight and under what conditions. With 135 hospitalizations under my belt, including dozens of near-fatal exacerbations and a declining quality of life, I find myself asking the question more and more….When is enough, enough? I don’t know quite yet, but I definitely know now what I DON’T want .
And so it was during a one day hospital stint just a few days ago (briefly captured in the clip below). When the prospect of needing to be intubated for the 40th time became apparent, I came to the sudden realization that I didn’t want to do this anymore. And with that mindset taking a firm hold I had the nurse call the ICU doc and tell him I that I wanted no further medical interventions done at this time, including intubation. I figured if this attack is going to kill me, let it kill me. I’m done, I’m tired, I can’t go through this anymore.
When the doc came in I told him to change my respiratory code status to DNI (DO NOT INTUBATE) , which in lay terms means I didn’t want a breathing tube inserted into my airway or put on ventilator to support my breathing. I also told him I didn’t want CPR should my heart or breathing stop, what they call a DNR (DO NOT RESUSCITATE) order. Sympathetic to my feelings, he went ahead and cancelled the intubation order. Trying to come up with alternatives, he asked if we could at least increase my IV solumedrol dose and keep me on bipap for awhile longer, to which I agreed.
Surprisingly, a few hours later my breathing actually improved to the point where I didn’t need to be intubated anyway. Thankfully, I had made it over the hump, but still very depressed over my situation I asked if I could be discharged from the hospital first thing in the morning.They were hesitant to say the least, but knowing that I was a lifelong asthmatic and after proving to them that I could walk 100 feet without keeling over or majorly desatting, they obliged and I left the hospital at 9 am, less than 23 hours after arriving there. I was still really tight when I left, but I felt confident I could manage at home on my own. I just needed to get out of there.
So why would a rational person with a common disease like asthma want to refuse a treatment that could potentially save and/or prolong their life? The fact that I have history of bouncing back from these bad attacks, might suggest to some, that if anything, I should count my blessings and hope my good fortune continues. Yes, I might be lucky in that regard, but what’s wearing me down is the seemingly endless cycle and sheer number of these exacerbations. My recoveries might be quicker than most, but living with a type of asthma that strangles you to the brink of death on a near monthly basis, gets old really fast and has a huge impact on other aspects of my life. Modern critical care and life support techniques might be why Im still around today, but it hasn’t changed the course of my disease. Im not getting any better and the bad flares just keep on coming.
What if my heart stops during one of these events, or what if I suffer a major stroke, then what? I don’t want to die twice and I certainly dont want to struggle to breath and not be able to communicate that because of paralysis or brain damage. Ive already had one cardiac arrest in my life due to asthma, and I think the only reason I survived it was because I was young at time (16 years old) and was revived quickly. And it’s just not about me. All of these hospitalizations are weighing heavy on my loved ones as well. Its not fair to put them through the hell of not knowing what’s going to happen every time I get sick. So while I’m not giving up entirely, I am creating limits on just how far I want all this to go .
Saying that you want certain things done or not done when you are critically ill, isn’t enough. You have to put your wishes in writing in the form of a legal document called an Advance Health Care Directive. So the very next day after I got out of the hospital, that’s exactly what I did. I had a meeting with my pulmonologist and my partner Douglas to talk about all this. After a lengthy discussion, including the fact that Ive survived so many near fatal exacerbations because of the intubations, and that other than my crappy lungs I am otherwise remarkably healthy (thank you daily exercise), it became obvious, even to me, that a NO NOT INTUBATE order at this point in time would be premature and more a kin to suicide than anything else, so we removed that part from the directive. However, I still feel very strongly about having a NO NOT RESUSCITATE order in place should my heart stop or should I suffer a major stroke. The directive for that reads: In the future should I get so sick during one of these asthma flares(either while on or off the ventilator) that I go into cardiac arrest again, with the exception of one or two electrical shocks from a defibrillator in an attempt to or reestablish a viable heart rhythm, no chest compressions or further interventions (what they call “heroic measures”) are to be performed.
My Advance health directives form is now complete with the required witness signatures and will be on file at all the hospitals I go to, as well as a back copy I’ll keep with me. I only wish I would have done this sooner. Offers piece of mind for all involved.