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.

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11 thoughts on “Advance Health Care Directive

  1. Mysty says:

    Advance health care directives are so important and a topic that should be more widely known. Quality of life is so incredibly important and wishes need to be made clear.

    While my asthma is absolutely nothing compared to yours I can only being to imagine the struggle. But you really are an inspiration and to share your story with the world is so generous and kind.

    Thank you for tackling the tough stuff.

    1. Hello, Im sorry my reply is so late. Thank you so much for the kind words and I totally agree with you about quality of life. People don’t like to talk about the subject, but its so important to have a plan in place, so everyone is on the same page.


  2. Thanks for the recent post, I just left the hospital 8 hours ago happy hospital-valentine! The irony How Crazy shit always happened to me”…across from my ER curtain room, a machine in the nurses station began to fill the floor with toxic smelling burning-plastic-smoke that took 11 hospital personnel to nail it down….meanwhile the “room #10 asthmatic” is sitting outside the ER in the ambulance bay. The fact that all asthma exacerbations are life threatening, the “A” in ABCs. I Did not get Hypercapnia this time, but my last episode began at #10, the Dr. told me a #4 was mandatory ICU.
    Last time Jan 20 2018 I was truly dying, the panic of “conscious-awareness-suffocation” where each time I square up with my God. Thanking him for my 2 daughters and begging him to “HURRY UP THE LOC” (Loss-Of-Consciousness). Then I become free from this experience as I watch, see, hear and experience what is happening around me, below me as I’ve floated above myself in the ambulance, watched the medics and nurses “drop me” changing gurneys in hospital pkg lot, and ask them about it later to their amazement, how could you have known- you were unconscious, CPR & assisted-ventilation.
    Feeling that awesome serenity of detached awareness where you are not suffering anymore from suffocation is the silver lining in this experience. The Epi-pen new to me worked great last 24 hrs. Instead of my habitual begging God to hurry, I began to “breath IN and Out” easier with each breath deepening and even told my panicked driver to slow down as I was recovering.
    The epi pen made this exacerbation not to terrible I am thankful. Your post on the DnR is good, I’ve been actively aware of dnr’s
    since my first heart-stopped/conscious-suffocation as brain death, stroke, or mental incapacity are a spin of the wheel of fortune closer each time. (Please gmail me) Your words helped me so much last time where I ripped the lower lung muscles and was suffering severely……I found your post and began reading your truths, you helped me so much not to fall into depression as the timeline of healing from asthma exacerbation post helped me as well.

  3. Ivonne Falkenstern says:

    Hy Steven
    I‘ve been following you for years, having the same severity as you have but I‘m 36 and from Germany. I understand your wish entirely though it is hard to read. I put up my mind as well what is to do in case that…. . But my kids motivate me to continue. We have to write down exactly what we want to have and what not- exactly. So you have to inform yourself what can be done, what makes sense in the individual case and what are the future effects. For me, I let myself intubated, heart Arrest will be treated and extracoporal ventilation is allowed. I have depressive episodes too when I think I cannon take this anymore but then I look at my kids and know I have to continue fighting. But I’m so tired, so fed up; I feel so weak sometimes, all these pills (Morphium too) and dependance on the medical system, no free life, no life quality at all…every day is a fight for life.
    So it is sad but understandable that you made up your mind and put clear limits. At least here you can choose. However, I hope it will never come to that point.
    Wish you all the best

    1. Hi Ivonne. Thank you for the lovely words. Im sorry to hear that your asthma is so severe. Yes, we are definitely rare in the world of asthma. Hopefully there will be an effective treatment during your lifetime.

      Hugs, Steve

      1. Ivonne says:

        Hy Stephen,
        Yes hope so; don’t want to be intubated again since I was three weeks ago. I have almost the same phases and I am always afraid the bad ones remain. Sometimes it takes me weeks to get back. I hate it, cod the machine is breathing for you, to be without then is hard work, really bad time. After two days with a good feeling I drop all of the sudden and always think I’m dreaming or my mind is mocking me cos it can’t be. However, it’s not trick it’s real.Then the real fight/torture begins- mentally and physically, lasting days.
        Then all of the sudden it stops and I feel better and better. I’m always glad leaving my horror days. After that I try to build up myself.
        That’s how it works with me after Intubation.
        Best wishes

      2. Cushy says:

        I hope the same for you Stephen! You have become my asthma “Guru” since September 2017. I finally got a diagnosis in December after 3 months in and out of hospitals with my airways shutting down. It is severe (an auto immune induced severe allergic asthma) and yes the quality of life sucks but I’m thank ful for each day I have with my kids who are 3 and 10. My body is so allergic to almost everything (Dust/nuts/hormones/fish/spices/cats/outdoors/environmental/perfumes/chemicals/etc.). When I “PMS” my body treats the added hormones as an “allergen” and shuts my airways down (like an anaphylactic reaction)-even when on 50mg of Prednisone! Until you have the frequent attacks and feel the betrayal of your body it’s hard for others to fully understand. It’s so disheartening to go through and you pray you make it out ok. I am only 41 but also have seen the need to get everything in order to take the burden off my family. I made sure my organ donor application was updated. I was very nervous this week as I started Xolair to see if it can “calm” my attacks. No one wants to discuss the hard facts of a life threatening illness and I’d rather know that I made the decision and took the burden off my family. I can sit and do nothing if it keeps me alive-it may not be the life I choose but if I can be here to raise my kids I’ll take it any way I can. Keep fighting as long you want to Stephen-no one knows when our time is enjoy each day as it comes. PS. I think you are beyond awesome on how true you are to your feelings and experiences on your site! Life is beautiful, although not necessarily fair. I hope you have more good days then bad and that they don’t need those directives at all. Keep your head up. On a side note-I am on a prednisone taper and I just finished a nebulizer treatment, the feeling to take a full deep breath of air and no wheezing or tightness feels unreal….I don’t get these moment often and it feels so good to be able to just breath. If only it can last!

  4. Bryan T says:

    I just found this site and ended up reading a bunch of your posts all night last night. I’m 28 and have battled asthma all my life. I live in Florida and like clockwork, every time out temperatures change I get triggered requiring about 2 hospitalizations a year. Very few times I actually ended up admitted though and usually get discharged after a few hours of nebs and steroids. But on January 31stthis year, I had probably the worst attack of my life which led to my first intubation. I knew leaving when leaving my house for the ER that I was going to either end up dead or intubated, but as a father of 3 and a husband I had to make sure I did what I could to stay alive. To be honest, part of me wanted to quit trying to breathe and let whatever happen happen. But I realized how selfish that was.

    Regardless, that whole night took a tremendous toll on my family as no one was sure if I would make it. I was going into acidosis and my body was shutting down. That night is fuzzy and I don’t remember much, all I recall is them saying “Bryan were going to have to intubate you ok?” and me nodding my head in acceptance that it was my last resort. Then I hear them say “get the Propofol and Ketamine.” they started counting down 30 seconds and I was out instantly. Apparently my body didn’t respond as intended to all the anesthesics and I was still awake and fighting the intubation. They had to restrain me to the bed because I would try to pull the tube out. Thank God I don’t remember anything but tiny flashbacks, but my family sure does. Luckily I made a super fast recovery and was extubated with if 12 hours of being intubated and was discharged within 4 days. I felt amazing after but the past week I’ve turned around again and have started getting symptoms the moment we got chilly temperatures here again (I’m seriously considering moving to a different state with better humidity levels and temps). I’m really hoping this doesn’t turn into intubation #2. Seems like now I’m perpetually worried about it happening again. I can’t even imagine how going through that 40 times must be, you’re truly a trooper. But after reading your posts, it out me at ease with the whole thing and helped me understatement its part of the game of staying alive with severe chronic asthma. Thanks for sharing your story with us! It helps in so many ways! Hope your are doing OK!

    1. Hello and thank you for taking the time to write. Im so sorry you to hear that you had to be intubated for your asthma. Most people don’t realize just how bad asthma can get or how it affects the people who are close to us. Hopefully, you wont have to go through this again, but if you do at least you’ll be a little better prepared mentally.

      Once you’ve been intubated, you fall into an entirely new category of asthma. You need to do whatever you can to keep your asthma in check. Im assuming you have a Pulmonologist for your asthma? If not, please find one. Find one that you feel comfortable with.

      I know that living with this disease can make you feel very lonely, so feel free to write anytime.

      Take care Xx


  5. David Peterson says:

    I have Alpha One Antitrypsin deficiency. Genetic type pi-zz. The worse geno type. It causes lung destruction. I’ve had symptoms ten yrs now that progressively get worse. My disease affects my wife as much as me . She has lost a lot of weight. Is too thin. Is constantly stressed and on medication for anxiety and depression. Every exacerbation is hell for her as well as myself. It’s hard on the entire family. Does get. Down. I read where 80% of spouses leave due to the stress of a terminal illness. My wife will stay! But my symptoms began when I was 47, now I’m nearing 57. So I’m not at Medicare or retirement qualification age. That means even with insurance the medical bills are enormous. I recently filled out a directive.

    1. David Peterson says:

      Yes after 2.5 yrs I will be eligible for Medicare. After I bankrupt my family!

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