Train Wreck

n/a

Sub Glottic stenosis with asthma exacerbation. That’s how this most recent hospital admission is listed on the after visit summary. Basically I’m a train wreck. More about that later, but first the details of surviving yet another hospitalization.

I started getting sick about 3 weeks ago with symptoms of breathlessness, airtrapping, peak flows that were all over the place , and what may have been some vocal cord narrowing or stenosis. I tried deparately to hold off going in to the hospital until after my Partners Birthday which was on May 6th. I made it, but it wasn’t a very fun birthday for him because he knew I was struggling. So on May 7th we headed over to the UCSF Emergency Dept to see if we could get this under control before it got 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 was hospital just 4 weeks earlier. If I went into the hospital every time I actually needed, 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 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 had to take 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 ORs in anticipation that I would be would be doing a dilation on my 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.

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, mag sulfate, plus some other therapies like Heliox and/ or Ketamine drip that seems to help. This is one of the actual resuscitation rooms. I think this photo is cool because of the surgical ceiling lights. And though you’ll see lots of photos on my blog, the last thing on my mind when I’m struggling to breath is taking selfies or using my phone at all. 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 on social media. Many times Im not even aware of my own condition until Ive been in for several days, and If Ive been on a ventilator It could take me a week to figure things out.

And this is one of my actual intro notes that I bring with me to the hospital to make the staff’s lives a little easier. As is usually the case, many asthmatics know more about how to best treat their asthma exacerbations than the medical staff. If you don’t already use one of these intro type note, I highly recommend you create one and bring with you to the hospital. 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 downside, 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. If youre like most asthmatics then you know that asthma flares are big time waiting games. You wait and then you wait some more. Bad asthma flares take a while to resolves, sometimes 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 16 hours or longer, not because I want to be, but because its a very slow therapy. Same goes for Cont nebs. For me it’s usually at least 12 hours, sometimes longer if Im only at 10 mg Albuterol per hour. Heck, my heart rate doesn’t even increase till Ive been on the cont. nebs for at least 6 hours.

So now the moment of truth, you’ve been on bipap or cont nebs for several hours and its time now to check physiologically of what’s going on with your lungs and whether or not thyre oxygenating 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. If youre like most asthmatic patients you’ll have several of these done. If your numbers are trending in the wrong direction, they may decide to insert an arterial line or catheter into your artery. Make its much easier to obtain ABG samples and Blood pressure reading plus it’s pretty much painless. So at around 6 pm They put my Arterial line in. Once they put an A line, its a sure bet you’ll be in the ICU for at least a few days.

Ive now been in the hospital for appx 24 hours and a very important decision had to be made. The question is this.. will I a need a ventilator to give my lungs a rest. 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. Even with the help of Bipap, after a while you literally become too tired to breath anymore on your own. My abgs were looking like crap and I was rapidly tiring out, so at appx 5 am on Wed morning, It was lights out for me. I didn’t wake up again for another 4 days.

While I was asleep on the vent they took 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 and old scar tissue band with a special laser followed by literally stretching the cords open 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 opening. Mind you this all took place while my asthma was still raging, though I was mercifully asleep through the worst part of the exacerbation.

Ive now been on the ventilator for 4 days and its time to come off. They removed the breathing tube and for some reason I started having this very loud inspiratory stridor (noisy breathing). Not know 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 and thought it best to re intubate me put me back on the ventilator. They knocked me out for another 24 hours and then successfully extubated me the following morning.

Par for the course, I developed the usual ICU delirium 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, I had to stay in the ICU an additional 2 days. As far as 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) and somehow developed a numbness over my coccyx and left butt cheek. ( WTF again). Needless to say I wasn’t a very happy camper near the end of the stay.

Im finally home, but the recovery has been painfully slow. Remember, Im hyper even without steroids, so if things don’t turn around quickly I begin to panic. Ive already been out of the hospital for 3 days and still cant walk that well. Judging from today performance, it will takes me weeks if not months to fully recover from this flare and hospitalization.

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. Add steroids to the mix and there’s suddenly the need to express your emotions though music.

Its no coincidence that this months mood song is from one of my favorite composer/performers, Barry Manilow, with a tune called “Trainwreck” with lyrics written by my friend Enoch Anderson. This song reels through my head every time I survive a really bad hospitalizatipon. The song (and the theme for entire album) is really a musical play about the rise and fall from music fame, though for me it also applies to the depression and/or victory of surviving a severe chronic disease for such a long time.
The message I take from it is simple , we can choose to push on despite our health limitations and reinvent ourselves, or we can give up and wither away. I choose to push on, because really, what else is there?
I wonder how many of my badassmatic friends have felt like train wrecks before ? A lot I bet.

The post Train Wreck appeared first on .

http://breathinstephen.com/