Sub Glottic Stenosis (PGS) with asthma exacerbation. That’s how this most recent hospital admission is listed on the AVS (after visit summary). These conditions and the resulting hospitalization and treatment for them have turned me into a total train wreck.

I started getting sick about 3 weeks ago with symptoms of breathlessness, air-trapping (dynamic lung hyperinflation), peak flows that were all over the place , and what may have been some vocal cord narrowing or stenosis. I tried desperately to hold off going in to the hospital until after my partner’s Birthday which was on May 6th. I made it through the day, but it wasn’t a very fun birthday for Douglas because he knew I was struggling. So on the morning on May 7th we headed over to the UCSF Emergency Dept to see if we could get whatever was going on under control before it got any worse. But of course if you’ve been flaring for 3 weeks, the chances that your asthma will get better on its own is a pipedream. I guess I screwed up, I should have went in 2 weeks earlier. Ah, but that’s where it gets tricky. I was in the hospital just 4 weeks earlier. If I went into the hospital every time I actually needed to, Id be there permanently. That’s my defense and I’m sticking with it.

BTW, If you’re wondering why we drive all the way to SF for emergency treatment when there are plenty of local hospitals, it’s because the care is so much better there and they know me very well. Plus you have all the specialists under one roof. Also, I usually have the luxury of not requiring rapid or 911 type care for my exacerbations, this allows me to travel farther during both routine check ups and severe flares. In fact, in all my years of living with this disease, I’ve only required an ambulance 3 times.

In any event, with heavy traffic we made the trek just shy of 2 hours, arriving there at noon. In route I had notified both my pulmonologist and ENT doc, that I would be coming to the ED. My ENT doc was actually waiting for me when I got there, so after being triaged in the ER and assigned to high acuity room, he did an initial assessment of my PGS. He had actually reserved one of the Operating Rooms in anticipation that I would be would be doing a dilation of my vocal cords that following week. However, with my asthma also acting it up was obvious that they would have to deal with both of these conditions at the same time.

UCSF ED Resusciation room #2

They should rename this resuscitation room “Steve’s Asthma Treatment Room”. Heck, I spend enough time in there .

I think the photo is cool because of the surgical ceiling lights, but in all honestly the last thing on my mind when I’m struggling to breath is taking selfies. Most of the hospital photos of me are taken by friends and family, and most of the my medical updates are shared with my permission by my partner to a close one or two friends who then share them on social media. Many times I’m not even aware of the severity of my own condition until I’ve been in the hospital for several days, and If Ive been on a ventilator it could take me a week or more for me to figure things out.

So after the ENTs finished up with their stuff, the ER docs got me started on the hospital’s asthma treatment protocol, which basically consists of Cont Alb Nebs, Bipap , a steroid injection of 125 mg solumedrol, 2 grams Mag sulfate, plus some other therapies like Heliox and/ or Ketamine infusion that seems to help.

And this is the actual intro note that I bring with me to the hospital to make the medical staff’s lives a little easier. As is usually the case, many frequent flyer asthmatics know more about how to best treat their asthma exacerbations than the local ER does. If you don’t already use one of these intro type notes, I highly recommend you create one and carry it with you. It comes in handy when you’re too short of breath to answer questions about your asthma. The ER docs and Nurses really love it. The only possible downside I found, is that the doctors may sometimes give you too much latitude in directing your own care. It’s nice to mention what works for you, but at the same time you don’t want to be calling all the shots, especially when you are critically ill. That’s what the doctors get paid for.

Now for the boring part of asthma treatment…Managing a severe asthma flare in the hospital is all about waiting for things to improve and meds to kick in. You wait and then you wait some more. Not just minutes, but hours and hours. Bad asthma flares ( what they call status asthmaticus) take a while to improve or resolve, sometimes multiple days and even weeks. I know that once they start me on Bipap, that I’ll be in the hospital at least 3 full days. Many times Ill stay on bipap for 24 hours or longer, not because I want to be, but because its a very slow , but non invasive therapy. Likewise for Cont nebs. For me it’s usually at least 12 hours before my lungs will open up, even a little bit. Heck, my heart rate doesn’t even increase till Ive been on the cont. nebs at 10mg/hr for at least 6 hours. I don’t know about others, but I find myself staring at the clocks a lot and peering outside the room for distractions. But mostly you’re stuck in the in this icky world of wondering what will happen next.

The waiting (and hoping) game.
So now the moment of truth. You’ve been on bipap or cont nebs for several hours and its time to check what’s going on with your lungs physiologically and to determine whether or not theyre oxygenating your body adequately and moving CO2 out. Aka, the blood gas (ABGs). Not fun, but absolutely necessary to see how your body is handling the stress of this asthma flare. Most critically ill asthmatic patients will have several of these done during the course of their hosp stay.

If your numbers are trending in the wrong direction, they may decide to insert an arterial line or catheter into your your wrist (radial) artery. Makes it much easier to obtain ABG samples and Blood pressure readings, plus it’s pretty much painless after the initial insertion. So at around 6 pm that first day with the need for frequent ABG monitoring, they an Arterial line in me. Once they put an A line in, its a sure bet you’ll be in the Intensive Care Unit for at least a few days.

OK, Ive now been in the hospital for appx 24 hours, been on Bipap and cont alb nebs have an A line in place, but my asthma is not improving, so a very important decision had to be made. The question is this…. Will I a need a ventilator to give my lungs a rest and improve my chances of surviving this exacerbation? In my case the answer is almost always the same. YES, I will need a ventilator to breath for me till my lungs open up more. You see, even with the help of Bipap, and lots of steroids and bronchodilators, after a while you literally become too tired to breath anymore on your own. The work of pulling in and pushing out air from your lungs becomes overwhelming and puts a strain on your other organs. My abgs were continuing to look like crap and I was rapidly tiring out, so at appx 5 am on day 2, it was lights out for me. I was intubated, put on a ventilator and didn’t wake up again for another 5 days.

While I was asleep on the ventilator they took the opportunity to bring me to the OR and repaired my glottic stenosis. I have these snazzy illustrations to show you what Posterior Glottic stenosis is and how they repair it. First some general anatomy of the upper airway which is basically everything between your moth and vocal cords. This first one shows you major landmarks are, unfortunately it doesn’t show the vocal cords to well, so I have another illustration for that. As you can see, normally the the vocal cords are wide open when you take a breath in and they close when you exhale speak or swallow. Glottic stenosis occurs when something prevents or obstructs the vocal cords from opening all they way. Scar tissue is usually culprit. My glottic stenosis caused because of too many intubations for my asthma. In fact, intubation is the #1 cause of all acquired glottic stenosis.

During my surgery they were able to remove some old scar tissue with a laser, followed by some vocal cord dilation using a special balloon. Following my surgery, the opening between my vocal cords went from about 30% to 80%. That’s more than twice the size of the opening I came to the hospital with. Mind you this all took place while my asthma was still raging, though mercifully, I was asleep through the worst part of the exacerbation.

Ive now been in an induced coma on the ventilator for 5 days and its time to come off. They removed the breathing tube, but for some reason I started having this very loud inspiratory stridor (noisy breathing). Not knowing what was going on on the ENT team was called and they re-scoped me but didn’t find anything abnormal. However, in the ensuing kayos, the ICU residents with their endless wisdom, didn’t like the way I looked or was acting and thought it best to re intubate me and put me back on the ventilator. They knocked me out for another 2 days and then successfully extubated me AGAIN the following morning. So in total I was on then ventilator for 7 days. Not good.

Par for the course, I developed the usual ICU delirium in between intubations where I thought they were holding me in a sub acute facility located on the beach.( Hey, well at least my delusions have been more reality based lately). Because of the psychosis and outbursts they had to snow me with Haldol and Presidex and I had to stay in the ICU an additional 2 days.

Day of discharge . You can see both eyes are red and swollen.
After spending nearly 2 weeks in the hospital I was discharged home directly from the ICU. The recovery has been painfully slow since then. Not only am I dealing with the breathing issues, but also the secondary complications and battle scars. Remember, Im hyper even without steroids, so if things don’t turn around quickly I get upset and angry. Ive already been out of the hospital for 3 days and still cant walk that well. Judging from todays practice walk, it will takes me weeks if not months to fully recover from this flare, hospitalization and complications.
First walk 2 days after leaving hosp. It required cane, knee braces and lots of determination, but I walked a full mile and half.

As far as the Battle scars, ( there are always battle scars), the usual scrapes, bruises and what appears to be a chemical burn near my venous access port ( WTF?) Plus I developed an eye infection in both eyes ( my fault for touch dirty services and then rubbing my eyes), and somehow developed a numbness over my coccyx and left butt cheek, which turned out to be a pressure/bed sore ( WTF again). Needless to say I wasn’t a very happy camper near the end of the stay.

Bruised arm from tape allergy

Arterial Line holes and brusing
A chemical burn near my shoulder blade?
Bruised bicep from secondary IV

Just one last thought to share. Having gone through a particularly rough year on the medical front, Im reminded just how fragile life is and how lucky I am to still be around. Sometimes I even feel guilty about that. Riding this disease to the brink of death on a near monthly basis can really mess with you emotionally. I really need counseling of some sort. Add steroids to the mix and there’s suddenly the need to express your emotions though someone else’s music.

Its no coincidence that the title of this post and the theme for this months mood song is from one of my favorite composer/performers, Barry Manilow, with a tune called fittingly “Trainwreck”, lyrics written by my friend Enoch Anderson. The song (and the theme for entire album) is actually a musical play about the rise and fall from rock music fame, though for me it also applies to the depression and/or victory of surviving such a devastating disease for such a long time.

The message I take from it is simple , we can choose to push on despite our health woes and constantly reinvent ourselves, or we can give up and fade into the sunset and become another victim. I choose to push on, because I’m convinced that I have a few more good breathing days left in my life and I want to experience as many of them as I possibly can.
I wonder how many of my badassmatic friends have felt like train wrecks before ? A lot I bet.

Related Posts:

13 thoughts on “Train Wreck

  1. Stephen, your a damn inspiration brother. I was diagnosed when I almost died from pneumonia when I was 8. Since, I’ve had troubles and hospitalizations but NOTHING close to what you are going through. Hearing your words and your dedication to maintain a good attitude fills me with infinite hope and I want you to know that. I’ve been following you for 4 years now. You aren’t in this alone and you keeping the fight going is what helps me push through my own sorrow. Never stop breathen my brother Stephen! God bless

  2. Dear Shane, Thank you for taking the time to write such beautiful words and sorry to hear that you are suffering from this disease as well. Never give in my friend, do whatever it takes to live a better life.

    Xx Steve

  3. Stephen:

    I’ve been suffering this disease since I born. I’ve been following you since 2016 when I had my worst exacerbation. I found your blog and man, everytime I read, I start crying. Thank you for your courage and strength. Thanks. Your words just inspire me and make me realize that I’m not alone.

    Thank you!!

    Juan

  4. Hey Stephen thanks for sharing you are amazing! I’m currently in the hospital with an asthma flare but hoping to escape tomorrow. This blog helps keep me sane – the steroids are a nightmare.
    hope you recover soon.

  5. Hi, Thank you for the nice comment. Gosh, I’m sorry to hear you’re in the hospital. I hope you’re feeling well enough tomorrow to escape as planned.
    I’m actually in the hospital again as well. I did ok for a few days after my last admission, but then boom….2 days ago my lungs starting clamping down really bad again. Such a lovely way to live….( said no one)

    Feel better soon.

    Steve

  6. Sorry for you all in hospital again. I was in hospital last week to. Feeling a little better today. Hope you get better soon Stephen!!

  7. Hey Stephen,

    Your words are very powerful and inspire others to fight on and persevere. Thank you for your support with our study and look forward to staying connected.

  8. Stephen. You are such an inspiration! I’m so grateful I found your story online. While I don’t have asthma as severe, I still have it, which is usually triggered by pollen in the Fall season, or an infection that goes to my lungs, or like recently a stay at a hotel while visiting family where something set me off slowly. Maybe dirty heating ventilation system, very cold weather ? My boyfriend also got sick, but his asthma is very mild and he’s better. I’m back on oral steroids, neb treatments, and when this happens, I tend to get tunnel vision of worry (as I call it). Do you ever get like that? I need a new GP & pulmonologist who will take me more seriously. I’m also an asthmatic who doesn’t typically wheeze a lot, but just feels tight with mucous production. I’ve been hospitalized on nebs & IV steroids. I’ve had the mucous plugs that only come out with solmedrol & intense coughing! Well, I hope you are having a Good day today!! Easy breathing! :))

    Theresa from NJ

    1. Dear Theresa,  My apologies for not responding sooner. I just got out of the hospital yesterday for surgery on my upper airway. 

      Sorry to hear about your asthma. And yes, Im certainly familiar with that a feeling of dread you tend to get when you have to start on steroids. I think its the uncertainty of whether the steroids will work before the exacerbation gets worse, or if you’ll end up in the hospital.  As far as not wheezing a lot, that’s a pretty common finding in asthmatics, try not to worry about that. If you feel your doctor is being dismissive or isnt taking you seriously, definitely look for another.  You deserve the best care you can get.
      I hope you feel better soon,
      Steve G

Leave a Reply

Your email address will not be published. Required fields are marked *

WordPress Anti-Spam by WP-SpamShield

This site uses Akismet to reduce spam. Learn how your comment data is processed.