My life as chronic lunger is pretty much an open book…or would that be an open Blog?

Well,   might as well include all the mental stuff too.

Maybe its not the best idea in this “everyone’s private data is up for sale kinda world”, but to me it’s worth the loss of privacy to be  as transparent as I can when writing about my breathing issues.  You need to be visible if you want to be part of the solution.. that is, if we ever find one for this disease.  At times Ill even post some of my actual medical records bolster my anecdotal observations.  I  try to keep my personal info and other identifiers hidden as much as possible, but other than that, everything else is out in the open. I think its so important not to hide the respiratory conditions out there that impact peoples lives so severely.

When it comes to my own, I don’t hold back or embellish on any aspect of my Respiratory conditions. Sometimes the medical jargon might be a little too much, but that’s because Im a Respiratory Therapist by profession and my brain is just wired that way. Most people who visit my blog have lung or other chronic health issues themselves and are able to relate to a lot of I write about. Many are Nurses and Physicians as well.

What I post mostly about is my life with  Life-long Severe Asthma, Obliterative Bronchiolitis and newly acquired Posterior Glottic Stenosis (not to be confused with Vocal Cord Dysfunction (VCD). These are medical hiccups that I deal with every day of my life. If it’s pretty, I post it. If its ugly, I post it. If it’s slanted or opinionated I post it. I mean really, you couldn’t make this stuff up if you tried. Who on earth has been intubated 52 for asthma? Sounds insane i know, but it’s 100% true and fully documented. How the hell is it that Im still alive. It’s no wonder I have PTSD.

I used to believe that it was no big deal to suffer  frequent asthma flares. That eventually things would get better. I don’t believe that anymore. While research is advancing at a fast pace,  I dont think we’ll find the end all treatment in my life time. I do hold out hope for others though, and that’s why I continue to blog. If my experiences can help just one patient or researcher learn something new about any of these conditions or the severe side effects they can cause, then Ill continue to be that open book.

So now that Ive got that off my chest, here’s those medical records I was talking about.  Wasn’t sure whether to place them at the beginning or the end of the post? Visually, they looked better on the end, but because you really need them for context, I decided to put them right here. Both admission are pretty much carbon copies, except it was the wildfire smoke that did me in this last time.  If youre not a medical person or not used to reading these thing, the medical shorthand is actually not that hard to figure out. Google can help you with the rest.
Hospital Admission and Discharge Notes, Sept 10,2020
Hospital Admission and Discharge Notes, June 7th, 2020  (
Had to laugh about the conflicting info I highlighted in yellow about 4 pages in, regarding walking and exercise.)

Moving on….. its been well been established that I’ve had sedation issues when on the ventilator, so we’ll get that out of the way first. I guess its bound to happen at least once when you’ve been intubated as many times as I have. For the most part, we’ve come up with various drugs recipes, administered in different sequences, that seems to have fixed that particular problem. I haven’t experienced any of what they call ” Anesthesia Recall” while sedated on the ventilator in several years now. That was a huge win, because trust me, you don’t ever want to be awake inside your paralyzed body, especially during a bad asthma flare.  It affected me so badly at the time, that I had to seek counseling. But again, knock on wood, that hasn’t reoccurred many in years.

So today’s topic is really a re-run of something much worse that’s been plaguing me, both physically and emotionally now for over 4 years. Luckily, Im learning from it all the time and am trying to develop a plan to deal with, or at least decrease the frequency of it.  I’m talking of course about ICU delirium. Last weeks’ hospitalization yielded some of the worst I’ve ever experienced. It was terrifying. Many of these bouts have a similar theme. It usually involves kidnapping me or moving me within the medical system without my permission.  Many of these delusions appear in darkness or to happen at night. During this particular one, they illegally transferred me to one of those shady privately-owned rehab centers located in a secret building near the main hospital. It was essentially a warehouse for people with chronic health condition that were costing the system too much money to keep them the real Hospital ( not totally unfeasible in this day and age).  In other parts of the dilusion, like a spectator, Im observing observing things going on in the Nursing station area of the ICU. Stuff like dinner parties for important medical people, special events., etc. This last time Facebook was hosting a free dinner.  It played out like a mystery movie in my head where I was suspcious of everyone. I actually offered money to one of my captors to let me go . At one point I evencalled 911.  ( that really happened). The whole thing lasted about 5 days. I gradually came to my senses when they transferred out of the ICU to a stepdown unit with a sitter watching me all day.

Of course none of this really happened, I just thought it did.  But it always seems so real, that even now  I keep checking and double checking to see if ANY of this happened.  But NO it Didnt.

So its one thing being a little crazy and seeing things in the dark when you’re sick in the hospital, it’s quite another to experience actual physical discomfort from your delirium, (in my case, the feeling of extreme breathlessness). And though you might think the opposite, the meds they used to treat “agitated” patients can actually make the patient feel worse, and I get that. You certainly have to have some control if a patient becomes combative or tries to hurt themselves or others. My Special power is yanking out tubes, including my arterial lines. Im also a great thrower, I can nail you with my phone anywhere on your body within a 12 ft (3.66 m) radius of my bed, so wrist restraints are usually employed too. But seriously, some of these drugs fog your brain so badly, you can’t seem to find your way out, which makes you even more anxious. If these medications just knocked you out, it wouldn’t be so bad, but they usually don’t. In fact, because were talking about people with breathing issues here, they can’t give you a lot of the medication because you might stop all together.

Ah, but wouldn’t you know it, you fix one problem on the inbuation side of things and another one pops up on the opposite end. I’m talking of course about Post- Extubation Delirium. Essentially you go crazy from being on the ventilator. Yes, it’s a thing. A huge thing, especially if you’re older. Not to mention its very embarrassing. Doing the Dr Jeckle, Mr Hyde thing can make people think differently about you. And as more and more people survive the severe forms of COVID-19, we’ll see just how common this phenomenon is.

If you want, you can read about some previous experiences about what it feels like to go through this, but I won’t belabor the point futher. All you need to know is that you do not EVER want to experience post extubation ICU delirium, esp when you have breathing issues. It is pure torture. There are various tools and scoring symptoms to assess ICU Delirium, but the people taking care of you, the Doctors, Nurses, Loved ones don’t really know what’s going on inside your mind. All they see is that their patient or friend is acting up, maybe even being combative, but obviously having some issues. He was sweet as pie before he was extubated, what the heck happened? ICU Delirium, that’s what happened.

So after dealing with this for the past 4 years, I’ve come up with my own conclusions of why I think this is happening and have asked all my doctors to at least hear me out. I think it has more to do with sedation medications rather than the steroids. Prior to a couple of years ago, this never happened. The problem seems to spike when Im weaned off the vent while on Continuous Fentanyl and/or Presidex drips. Small, individual doses are ok, but not cont infusions. It’s also important that while Im on control mode on the ventilator, that they keep me as sedated as possible with propofol and less of the other drugs. (I know this can be a delicate balance because propofol can lower your blood pressure.) But assuming I’m over the bad breathing hump and my ABGs are looking good, it’s time to wean me off the vent. When that time comes, they need to stop ALL sedation, except for a tiny bit of presidex, and see what happens. I think if I’m allowed to fully awaken on my own, even if my dyspnea increases, I can handle it much better. If I start to act up and start pulling tubes out or get combative, make sure there’s not something else going on before you slam me with Haldol. Could be that Im trying to communicate that Im in some kind of distress and just frustrated.

Who knows if any of these things will work. But the fact, that out of a total 52 intubations and stints on ventilators during my lifetime, Ive only had delirium during 8 of the most recent, tells me this is more of a sedation/medication problem, not just steroid psychosis.

Finally, there’s also quite a bit of data now on how UTIs (urinary track infections),can cause or worsen delirium, of which Ive suffered from a few. This apparently is pretty common in older patients.

Regardless, when it’s time to take me off the ventilator, turn all sedation off, let me wake up and breath spontaneously on the vent for a while. If I appear to be in respiratory distress, but my ABGs are OK, give me a little pressure support or put me back to sleep for while and try again a little later.
If Im not in respiratory distress, just take the tube out and see how things go.

During the course of the next few weeks, I have multiple appts with my Primary, Pulmonary and Palliative care doctors to discuss this issue. If they agree with my ideas, or even if they don’t, Im going to suggest that just like with the “intubation Instructions” in my chart (see below), that they create a set of instructions for weaning me off the ventilator as well and label it as such in my Chart. Strategic placement of these instructions inside the chart itself is important as well, because you want people to find it easily. Because several days can pass between the time your put on the ventilator and the time you come off, and you rarely have the same doctors involved especially in a large teaching hospital.

Per patient and partner, if worseafter extubation, avoid more than IV solumedrol 60 mg qday to prevent steroid psychosis. Notably recalls smooth extubation in April 2020 and December 2019 admissions without delirium thereafter. Per prior admission, if requires intubation: Versed 2mg, Fentanyl 200 mcg, Ketamine 150 mg, Propofol 100mg, Succinylcholine 100mg, -/+phenylephrine for hypotension post intubation; should be intubated with 6 or 6.5 ETT. This admission: substituted succinylcholine for rocuronium 10. Intubated with 6.5 ETT. Douglas (partner) recommends:1) Not waiting for his agitation to escalate too much before giving Haldol; recommends intervening quickly 2) 1:1 nursing because patient has tried to pull out his port before, often quite agitated 3) OK to extubate on Precedex which has been helpful, though patient prefers not to be sedated on Precedex during intubation.

Ultimately, finding a way to keep me off the ventilator would be the best solution in solving both these problems. Alternatives like non-invasive ventilation ( ie BIPAP) can buy some extra time during a bad flare, which is usually why they try it first, but it’s not as effective during an emergency and can sometimes cause even more exhaustion. We’ve even discussed a permanent tracheotomy , so I could just hook myself up to a vent without the need for intubation. Again, it might solve one problems, but causes others.

These are tough decisions for my entire care team. They’re always going to intubate me if they think I need it, unless I refuse and change my code status to “DO NOT Incubate” But is that realistic? I have very severe lung disease, but its not end-stage. Heck, my O2 sats are totally normal when I’m not flaring. I just have really fragile disease that doesn’t give me a lot of leeway when I get sick, but so far I’ve been able to bounce back every time. I guess I’m just not ready to give up on myself. Don’t even know if I could. The reflex to want to breath when you can’t, is uncontrollable. Given severe enough chest tightness and breathlessness, I would probably beg to be intubated. That might change as I get older or more debilitated, but for now I want to live a few more years, even if it means being intubated multiple times per year. Just gotta solve the delirium issues.

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