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Welcome to my world….. This scenario is typical and pretty much a monthly occurrence for me. Whether it be 1 or 2 weeks in the Intensive Care Unit, or in and out of the hospital in two days, the length and severity of my asthma exacerbations (and I’m sure those of others), are totally unpredictable. One thing’s for sure, long or short stints in the hospital...

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Breathinstephen by Breathinstephen - 1M ago

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 exacerbation and 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 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 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 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 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 infusion 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.

UCSF’s resuscitation room #2

And this is the 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…Literally. Treating a severe asthma flare in the hospital is all about waiting for things to work and meds to kick in. You wait and then you wait some more. Bad asthma flares (status asthmaticus) take a while to improve or resolve, 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 24 hours or longer, not because I want to be, but because its a very slow non invasive therapy. Likewise for Cont nebs. For me it’s usually at least 12 hours before my lungs will open up, sometimes much longer. 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.

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 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 readings, 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 some old scar tissue 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 and put me back on the ventilator. They knocked me out for another 24 hours and then successfully extubated me AGAIN 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.

Battle scars gallery

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 the title of this post and this months mood song is from one of my favorite composer/performers, Barry Manilow, with a tune called fittingly called “Trainwreck” with lyrics written by my friend Enoch Anderson. 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 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 wither away. 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 all of them.
I wonder how many of my badassmatic friends have felt like train wrecks before ? A lot I bet.

http://breathinstephen.com/wp-content/uploads/2019/05/14-Trainwreck.mp3

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Sub Glottic stenosis with asthma exacerbation. That’s how this most recent hospital admission is listed on the after visit summary, so Ill just go with that as far as a title.

I started getting sick about 3 weeks ago with symptoms of airtrapping, peak flows that were all over the place , and what may have some vocal cord narrowing or stenosis. I tried deparately to hold off going in for treatment until after my Partners Birthday which was on May 6th. I made it, but it wasn’t a very funny birthday for him because he knew I was struggling. So on May 7th we headed over to the UCSF ED.
If youre wondering why we drive all the way to SF for treatment when there are plenty of local hospitals it’s because the cause is the care is so much better there. Plus you have all the specialists under one roof. Also, I usually have the luxury of not requiring emergency or rapid care care for my exacerbations, this allows me to travel farther for my care.

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, so after being triaged and assigned to high acuity room , he met me back there and did an initial assessment of my Glottic stenosis. He had actually reserved one of the ORs in an anticipation that I 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 do the surgery sooner.

After the ENTs finished up with their stuff, the ER docs got me started the hospital”s asthma protocol, which basically consists of Cont Alb Nebs, Bipap , a steroid injection 125 mg solumedrol and mag sulfate, plus some other therapy’s that seems to help me. This is one of the actual resuscitation rooms. I think this photo is cool. This is one of the actual UCSF resuscitation rooms. And this is one of my actual intro notes that I bring with me other hospital to make the staffs live easer. 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 on of these note, I highly recommend you create one and bring with you to the hospital. It comes in handy when you’re to short of breath to speak.

If youre like most asthmatics then you know that asthma flares are big time waiting games.You wait and then you wait some more. I know that once they start me on Bipap, that I’ll be in the hospital at least a full day, many times Ill be 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 more at 10 mg Albuterol per hour

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 your like most asthmatic patients you’ll have several of these done. If your numbers are trending in wrong direction, they may decide to insert an arterial line or catheter into your artery. Make its much easier to obtain samples and its much less painful that a regular ABG. So AT round 6 pm They put my A line in.

Ive now been in the hospital for appx 24 hours and an 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 need ventilator to breath for me. My abgs were looking like crap and I was tiring out. So at appx 5 am, It was lights out for me. I didn’t wake up again for 3 days.

SO while I was asleep 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 old scar tissue with a special laser and they literally the stretch the cords open using a special balloon. Following my surgery, the opening between my vocal cords went from about 35% to 85& That’s more than twice the size opening. Mind you this all took place while my asthma was still raging.

Ive now been on the ventilator for 3 days and its time to come off. They breathing tube and for some reason I started having this very loud inspiratory studier. Not know what was going on on they rescoped and didn’t find anything abnormal, but because I was still having a hard time breating they thought it best to re intubate me put me back on the ventilator. The next morning I succeffully
came off the vent a second time, but Now I was developing a ICU psychosis. Because of the delirium I had to stay in the Unit an additional 2 days. Plus I developed an eye infection in both eyes. Needless to say I wasn’t a very happy camper.

All in all, not a bad hospitalizations but the recovery has been painfully slow. Iven been out of the hospital for two days and still cant walk. It will takes me weeks if not months to fully recover from this .

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Breathinstephen by Breathinstephen - 1M ago

May is asthma awareness month, so I thought it would be fitting to share with you a 6 hour slice of a typical morning in this asthmatics life. No near-fatal asthma exacerbations or depressing hospital photos here, just spontaneous, mundane bits of me going about my daily routine, and rambling at the camera lens for 17 minutes. The only real difference in my day, is that everything in it revolves around my asthma and my breathing.

In thinking about asthma awareness month and why promoting public awareness about this disease is so important, personal events over the past few months kinda brought it all home for me.. Simply put, asthma is an invisible disease. It’s difficult to get serious about something you can’t see.

Back in Nov of last year I sustained a very common injury to both of my knees. When I would go out in public I could tell in people faces that my injuries, and hence my mobility problems, stood out like a sore thumb. How could they not? The limping, the use of crutches and braces to get around, people noticed because they literally have to get out of my way, some were even sympathetic. That’s when it dawned on me, while they see me limping around the store, they don’t realize I’m secretly suffocating as well. Unless, I went into sudden severe bronchospasm, started gasping for air, turned blue, then hunched over and took multiple hits off my inhaler or jabbed myself in the leg with an epi-pen, people wouldn’t have a clue that my real problem is my lungs not my knees. Unless you have a sign on your back, you’re asthma, and everything you’ve been through because of it, is pretty much invisible to the outside world.

Im not even sure that being invisible is a bad thing. Most of the time I don’t want strangers to know about my breathing issues anyway because I don’t want them to feel bad or sorry for me . Like most asthmatics, I’m even embarrassed to use my inhaler or neb in public. (How messed up it that?) What I really want the public to know is how bad asthma can get and how much suffering it causes.
The public is told , mostly by the drug companies, that asthma is a controllable disease and that all you have to do is follow a plan and take your meds as prescribed. While that’s true for the vast majority who have milder asthma, it’s make believe to the rest of us.

If you want to have an honest public discussion about asthma, you need to talk about ALL aspects of it. Not only about novel disease conquering treatments and medications, but also the torment and despair of those whose living day to day with this debilitating disease, or those who’s bodies have been ravaged from the steroids they need in order to keep breathing, or the 3500 souls who suffocate to death each year in the US alone because of this invisible disease . You need to talk about all it in order to make it less invisible.

Life with very severe asthma, part 1 - YouTube

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Breathinstephen by Breathinstephen - 1M ago

Call me nieve, or maybe a just a wishful thinker, but I figured that because I’ve had to live my entire life with such awful breathing issues that maybe I’d be spared some of the more common health ailments that people tend to get as they get older.

Who am I fooling, my entire universe revolves around my stupid lungs and my asthma. Everything I do seems to have an impact on my breathing in some way or another, why should my knees be any different.

Ok, for those of you who suffer from a chronic lung disease and have to take steroids, you might be thinking this post is about…steroid induced osteoporosis and weak joints maybe? Well, you’d be partially right, but thanks to all the walking I’ve done over the years and strong leg muscles, my knee xrays showed only mild degenerative changes. In fact, since becoming a serious fitness walker, my dexascan T-numbers have gone from a -2.5 to -0.5 currently without the need for medication.

No, I could easily blame this and all of my other health ailments on my asthma and lifelong steroid use, but in the case of my knees I definitely bare some responsibility. I have a tendency to overdo it, not only with the walking, but just about everything else in my life. I estimate that I’ve walked over 13,000 miles since I began this fitness journey back in 2005, that’s a lot of miles to put on one’s knees. Im also notorious for not allowing my body and legs enough time to adequately recover in between workouts or after long confinements in hospital beds. So yes, I’m partially to blame for my current predicament.

The culmination of all these factors came to a head about 5 months ago, when I sustained a common knee injury that afflicts people young and old, especially athletes and those who are physically active. Out of nowhere my right knee just decided to give out one day. Apparently I tore the meniscus in my right knee joint and sprained a ligament… talk about painful. Seems that having strong muscles isn’t enough. Over or under developed muscles in one part of the leg can mean an imbalance in the other parts. Over time this can take a toll or the joint and tendons. Here’s the actual MRI report for that knee.

The good news is that despite tearing both the medial and lateral meniscus, after just a few weeks of physiotherapy and lots of stretching exercises, I was able to gradually nurse my knee back into shape .Within 2 months of the initial injury I regained most of the function in that knee without the need for surgery. The pain waxes and wanes and can be pretty intense at times when it flares up, but it’s much better than it was. Still, walking hasn’t been the same since. Not a Happy camper

Ah, but as luck would have it, 3 weeks ago as my right knee was continuing to heal, I somehow managed to injured my LEFT knee!
I had just returned home from a 2.5 mile walk, the longest distance I had done since injuring my right knee. I took a shower, walked to my bedroom and suddenly felt this clunking sensation in my knee. After taking a few more steps, I could actually hear my knee making popping and clunking sounds. Then as I took a few more steps and put weight on it, I about jumped out of my skin. Not only did that motion trigger excruciating pain, but it felt like my knee was going to give way. Whatever was going on with my LEFT knee felt totally different than what I experienced when I messed up my RIGHT knee. I’m not sure how I caused this current injury, but the timing of it suggests to me that it probably happened because I was favoring that side to protect my left knee. An imbalance if you will.

Thinking that I probably sprained something, I immediately iced it and took some anti inflammatory pain killers. The following morning the pain and clunking sounds were even worse. Because it hurt so bad when I bent or flexed it, I literally had to drag my left foot across the floor in order to move around the house. And because I was shifting my weight to my right side, my right knee was beginning to ache again as well. By the 3rd day, both of my knees hurt like hell and I could barely walk at all. Worried that this was more serious than I previously thought, I emailed the Ortho doc at UCSF sports medicine clinic who evaluated my right knee. The soonest his scheduler could get me in was another 2 weeks, so I contacted my primary care doc and she recommended that in the meantime I go to the urgent care center to get evaluated to make sure I didn’t break anything.

By this time I was so frustrated, you can probably imagine the stuff that’s going through my head. Im picturing various scenarios, like the inability to ever walk normal again without pain. That would spell the end for me. After all, fitness walking is a huge quality of life factor for me. If I didn’t get outside and walk on a regular basis, my breathing would undoubtedly suffer. I truly believe that the main reason my asthma hasn’t killed me yet, is because of my walking.
What if this injury required some sort of surgery to fix? How would that procedure affect my breathing? Doing even mild surgery carries a lot of risk for someone like me. What if the pain and limping I’m experiencing become a permanent thing, will I loose the desire to walk for fear of re-injuring myself? I was obviously was causing myself a lot stress with thoughts like these.

Anyways, 4 days later with no let up of the pain and popping of my left knee (and now my right as well), I reluctantly headed to the Urgent care center as recommended. Having been through this process just recently with my right knee, I knew that other than taking some xrays, offering me anti inflammatories and a brace, there wasn’t really a lot they could do. To my surprise though, the Urgent care doc on duty that day just happened to have a background in sports medicine. After listening to my story, manipulating and eyeballing my leg and knee, he seemed to size things up pretty quickly. He thought my symptoms were probably due to a tear or sprain of the MCL. He said depending on how severe the injury to the ligament is, it could take anywhere from 2 to 10 weeks to completely heal. He told me that in most cases, MCL injuries heal without the need for surgery. His orders were ice it when it hurts, not to walk on it and to follow up with my Orthopedic doctor.

Over the course of the next 2 weeks while waiting for that follow up appt, the pain in my left knee wasn’t getting any better and actually felt worse. Granted, I wasn’t staying off of it and resting it as much as I should have been. Call if vanity or denial, but I have this thing about using crutches, or a cane, especially in public places. It’s just not becoming to person who prides themselves on their unusual ability to walk marathon distances. The knee braces are bad enough and as soon as Im in my house I usually take them off.

On March 26th I finally saw my Ortho Doc. After evaluating my knee and symptoms his initial impression was that I tore another meniscus and probably sprained my MCL as well. He gave me steroid shot for the inflammation and pain, ordered an MRI, and another round of physical therapy. The following day I had the MRI done and the results confirmed his initial diagnosis. Here’s the MRI report for that knee.
Combination knee brace/epi-pen holder

So why is this whole knee issue such big deal for me?

Ive been blessed in beating the odds over and over again with my asthma. In the past 15 years alone, I’ve suffered dozens of severe exacerbations, most of them requiring intubation and ventilator support. Yet, Im still alive. That’s pretty much unheard of in the severe asthma spectrum, especially for a 64 year old. I think a huge part of that is due to my desire to exercise and maintain a certain level of fitness, despite the hardships of this disease. I believe that staying physically fit can help counteract the bad side effects of the disease and reduce the reliance on systemic steroids, which in the long run can makes on asthma even worse.

I like to tell people, that when you have a severe chronic lung disease such as asthma or COPD, you need to live the way you want to feel. You need to create a frame of mind for yourself that makes you feel normal. Getting out there and pushing myself hard physically through daily distance walking, even when Im not breathing well, makes me feel good about myself. It’s good for my lungs and makes me feel alive. Fitness Walking helps me tune out some of the bad stuff I have to deal with on a daily basis. Take that way from me and you’ve taken the one thing that holds me together and makes life worth living. This is why my knee issues, or ANY mobility issues for that matter are such a big deal for me.

It’s taken me a long time and a lot of patience, but yesterday I completed a 2.5 mile walk. That’s the longest distance Ive walked in a single stretch since my first knee injury happened back in Nov 2018. It could be the steroid injection in my knee I received last week that’s making the difference. (Im also having less pain.) It’ll be interesting to see how I fair after the steroids wear off in a couple of months.

Knowing what Im dealing with now and educating myself, I feel a little less anxious about the situation. The plan going forward is to treat these injuries as conservatively as possible to delay or avoid surgery all together. So that’s where things stands at the moment. I’m taking it day by day and doing everything I can do to preserve my mobility, which to me is freedom.

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If you’ve just scratched the surface of my blog or even if you’ve been following me for years, you might be thinking, does this guy do anything else except spend time on ventilators in hospitals?

Well, believe it or not, I spend very little time as a patient inside a hospital. In fact, just like with most chronic asthmatics, with the exception of frequent outpatient and lab type medical visits, most of my asthma care is self-care and administered at home. I have all the tools needed to treat even my more moderate asthma flares at home. And just like many others here, I spend the majority of my asthma time in rehab mode. (In lay terms, the process of healing and getting back to normal after a bad flare.) Exacerbation rehab does not take place in the hospital, it almost always takes place entirely at the patients home.

The past 12 months has actually been one of my better breathing years. I think the Azithromycin I’ve on for 18 months now is finally having a positive effect. I only had 4 separate hospitalizations totaling 29 ICU days. Hey, that’s only a 12th a year! And while that may still sound like a lot, when you consider the sheer severity of my disease it’s actually not that bad. It’s just that when I get sick (meaning my asthma flares up severely ), and I end up in the hospital, the treatment is usually more technical and more complicated. Words like and “life support” and “respiratory failure” start surfacing, which tends to add to the drama. But the whole hospital routine is just part of life when you have a severe breathing disorder.

So what other things do I do when I’m not being a patient? Well, lots of things. But If I had to prioritize, Id say that giving back in the form of educating the public is on the top of my least. I try to devote at least a few hours per week to public awareness/advocacy/blogging, those sort of things. I don’t want anyone to go through what I’ve gone through with this disease, and I believe spreading the word brings more people onboard and reduces suffering and loneliness. Not surprisingly, the timing and frequency of my public service type activities tends to evolve around my actual asthma flares. For me, it’s just easier to think or write about a subject when I’m suffering acutely from it. I also believe that the high dose prednisone that accompanies those flares gives me more clarity on whatever it is I’m trying to focus on. I also try to stay current on asthma treatment breakthroughs, as well as actively participating in a least one research project at time.

Next in line would be Fitness walking. After all, it’s the main reason this blog exists in the first place. Obviously I can’t walk as far or for as long as I used to, but it’s not because of my lungs. It’s because of issues with my knees and leg muscles, which I hope to resolve soon. In any case, I still walk at least 2 miles per day, sometimes more. Im also doing more pre and post walk stretching to prevent further injury to my legs. No more full marathons planned, but I’m not excluding the possibly of a 1/2.

Third on the list is music practice. Sometimes you just need a hobby that makes you feel good no matter how bad you feel. One that transports you to another place. But one that also requires some skill and practice to get there. I love the sound of a double bass, but I don’t have room for one in my house, so I play the bass guitar. Possibly the only weird part, is the time of I day I actually practice. Uh, that would be would be 4-6am daily. On Sundays I can play 6 hours straight. The reason for the early start is mostly breathing related. My best breathing occurs in the early morning and I have a hard time sleeping anyway, so why waste the hours.

Finally, and in no particular order on this one ….I spend most of my days doing what most people do…. living an ordinary life the best I can. From home, car and pet upkeep to shopping to planning new adventures to doing nothing at all. Just the normal stuff that everyone does. Oh, did I mention that I love to eat too. I love to eat, but I don’t love to go out to do it. So lots of take out or home cooking experiments. I also love to read , I love technology and blogging, but shy away from too much social media. I love having the ability to instantly learn something. I also love to teach and I adore wildlife.

So while it might seem that Im endlessly suffering from debilitating and life threatening asthma flares, I’m actually living pretty much way most people do, only on a shorter leash and with some terrible asthma sprinkled into the mix. Its all about perspective.

Hobby Room

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Breathinstephen by Breathinstephen - 2M ago

The following is about an incident that happened to me a few weeks ago involving dare I say……… a vaccine. In a nutshell, I had a very severe reaction to one.

Ive been hesitant to write about this, because I didn’t want to give the wrong impression or provide ammo for the vaccine nay-sayers. But I feel compelled to share my story, not only because this event was so traumatic and unexpected, but also because the odds of something like this happening is reportedly around one in a million. (Leave it to this weird asthmatic to be that one in a million. Why couldn’t it be a good one in a million, where I win a jackpot or something?)

First off, let me assure everyone that I’m not an anti-vaxer, quite the opposite. I’ve had just about every vaccine there is, and up until now I’ve never had an adverse reaction to any of them, not even the flu vaccines. I believe everyone should be vaccinated for at least for preventable childhood diseases, the planet simply has too many humans not to do otherwise.

Well my luck changed 3 weeks ago when I received the new shingles vaccine and had a reaction to it so severe, that I ended up in the Intensive Care Unit on life support. Due to the timing of events, there is low suspicion for actual anaphylaxis, though the verdict is still out on that. More likely, the vaccine set off some sort of potent immunological response in my system, which then triggered a severe asthma flare that eventually led to respiratory failure and a bunch of other fun stuff. All I know, is that the day before I received the vaccine I was feeling fine. Then just a couple hours after getting it, I was sick as a dog, and a day later I was in the hospital on a ventilator.

The full story actually begins 10 months earlier when my primary care physician recommended that I be vaccinated against the shingles, which is common medical advice for those over 50 years old and who had chicken pox as a child. I didn’t think much about it at the time and figured it was just something else I needed to do to protect my health. Side tracked by asthma and other health issues, it took me almost 6 months to actually follow through. When I finally did I was told by the local pharmacy that there was a nationwide shortage of the vaccine and that they would have to add me to an already long waiting list. It took another 4 months, but the pharmacy finally called me to come in for the first injection.

At about 11:45 on the morning of March 13th, I finally got the first shot. Wow, an $83.00 co pay? I thought to myself, for that price this stuff better work. The jab itself was a lot more painful than most vaccines, because its given intramuscularly.. No biggie. After receiving the shot I left the store and went about my day.

Well it couldn’t have been more than an hour or two later when I started to notice that I just didn’t feel right. It was like someone unplugged my battery and zapped me of all my energy. As the afternoon wore on I felt progressively worse, but I shrugged it off as just being the typical side effects of a vaccine.

Fast forward to around 4:30 pm (5 hours after receiving the jab), I started to develop the chills. I took my temp and sure enough I had a fever 101.5 . Just to make sure I wasn’t experiencing anything unusual, I Googled the side effects for the Shinrx vaccine and sure enough, fever was listed as a common side effect. With that assurance, I wrapped myself in a blanket and parked myself in front of the TV. By now Doug had just gotten home from work and concerned that I might have something else going on, he had me recheck my temp. This time it was 102.9. Not only that, but it was getting more difficult to breath. I thought that maybe the skaking chills were making me feel more breathless than I actually was. To make sure, I measured my peak flows, which were indeed dropping. I thought great, not only am I burning up, now my asthma is flaring. I increased the frequency of my neb treatments to about every 2 hours. Throughout the rest of evening I took ibuprofen to lower the fever and took extra albuterol treatments now and then to quell my increasing shortness of breath. At 11 pm that night I rechecked my temp and it was 104.2! Something isn’t right.

Unable to sleep because of the fever, shaking chills and now increased breathlessness and muscle aches, I kept going back online searching to make sure that the severity of my symptoms, while uncommon, were not totally unheard of with this new vaccine. To some degree I was satisfied with what I read and figured I was just one of unlucky few who got all the bad side effects.
But then at about 2 am the headaches started. OMG, I don’t mean a stress or fever induced headache, I mean a major headache with what felt like lightening bolts shooting through the top of my head every few minutes.

Something definitely wasn’t right, I was getting sicker by the minute and these headaches were starting to scare me. I thought my skull was literally going to fracture because of the pressure inside my head. Could I have Meningitis or something? I didn’t know what was going on. On top of the that, my breathing was getting more difficult and was not responding to the neb treatments anymore. It was then that we decided that I needed to get this checked out by a doctor. I was able to hold on for a couple more hours till the morning traffic eased up, then we hightailed it to UCSF.

Less than one day after this all started I was now in the hospital Emergency room, gasping for air, shaking like a leaf and not knowing what the heck was happening with my body. Despite the fact that 22 hours had already since the I got the vaccine, and having triaged very few patients with symptoms similar to mine, they rushed me into the cardiac resuscitation room where a flurry of people ran in and initiated their anaphylaxis treatment protocol, which is basically an EpiPen shot, benadryl and famotadine plus they set up of several IVs for access. I have a VAP, so only needed one extra IV, which of course took forever because I have crappy veins. Because my asthma was also getting worse, they set me up on a continuous neb, gave me more steroids, Mag sulfate and started me on Bipap.My imitation of a lobster (from the fever and rash) while on Bipap, Cont Nebs and treatment for Anaphylaxis

Not knowing exactly what they were dealing with, they took blood cultures, tested me for all the major flu viruses and contacted the CDC to inform them of the reaction I was having to the vaccine. It’s at this point that my memory gets kinda fuzzy. Essentially I don’t remember anything from the time they gave me a bulus of Ketamine and placed me on Bipap, till I woke up on a ventilator a few days later.

I was told later on that I did not do well on Bipap, and the decision was made to intubate me and put me on a ventilator. They used a smaller size ET tube because of my tracheal stenosis .They also had problems with keeping me sedated. A few days later when they extubated me ( took the breathing tube out), they told me I stopped breathing and that they had to manually bag me and do sternal rubs to get me breathing on my own again. Unlike with previous admissions where they’ve told me that I usually complain about how difficult it is to breath when they take the breathing tube out, this time I kept complaining about how bad my head was hurting. Apparently I also suffered the some post extubation delirium, which lasted about 8 hours this time ( part of which I do remember).

After that, things quickly came back into focus for me. I could think more clearly, my fever was down and my head was hurting less. By the end of that day I was sitting up in a chair and walking with the Physical Therapist.

On the evening of day 6 after being transferred to the stepdown unit, I suddenly developed a loud inspiratory stridor, which wasn’t going away. It was concerning enough for myself and the doctor on all that night, that he requested the ENT doctors come and evaluate me the following morning. They indeed did stop by and scoped me. They saw that one of my vocal cords was moving paradoxically, a condition called PVFM (Paradoxical Vocal Fold Movement), which they told me is fairly common in a person with glottic stenosis and scarring, and which is usually made worse by stress. PVFM can come on at anytime, and other speech therapy, there’s no corrective treatment for it. They said that the glottic stenosis itself looked OK and unchanged from the prior week’s surgery, but that I will most likely need a 3rd surgery in the near future to dilate my airway again.

Having been given the all clear by the ENT docs, the medical team, and my own desire to make a hasty retreat from the hospital and recover at home, they wrote my discharge orders, decannulated my VAP and set me free. After returning home the “Ice pick headaches” continued on and off for another week and then gradually diminished, as did my inspiratory stridor. Whether they will return or whether I’ll have any long term side effects from all this, I don’t know. I’ll I can do is cross my fingers and hope for the best.

To emphasize once again, what happened to me was probably a freak thing. The shingles vaccines are generally safe and severe reactions are extremely rare. But, if you have serious pre-existing health issues, especially severe breathing problems, be aware that any side effects that you might experience, could be amplified and more severe than usual. So it’s probably good idea to check with your doctor to make sure it safe to be proceed.

Lastly, if there’s a bright spot in all this, even though it’s risky for me to get the 2nd dose of this vaccine, my titers from the first one are probably high enough to provide me with at least moderate protection against the shingles. For what I went through, I better damn well NOT get the Shingles.

For those with a medical background or just curious, click here for my actual hospital discharge summary notes.

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If you’ve just scratched the surface of my blog or even if you’ve been following me for years, you might be thinking, does this guy do anything else except spend time on ventilators in hospitals?

Well, believe it or not, I spend very little time as a patient inside a hospital. In fact, just like with most chronic asthmatics, with the exception of frequent outpatient and lab type medical visits, most of my asthma care is self-care and administered at home. I have all the tools needed to treat even my more moderate asthma flares at home. And just like many others here, I spend the majority of my asthma time in rehab mode. In lay terms, the process of getting back to normal after a bad flare. Exacerbation rehab does not take place in the hospital, it takes place at home.

The past 12 months has actually been one of my better breathing years. I think the Azithromycin I’ve on for 18 months now is finally having a positive effect. I only had 4 separate hospitalizations totaling 29 ICU days. Hey, that’s only a 12th a year! And while that may still sound like a lot, when you consider the sheer severity of my disease it’s actually not that bad. It’s just that when I get sick (meaning my asthma flares up severely ), and I end up in the hospital, the treatment is usually more technical and more complicated. Words like and “life support” and “respiratory failure” start surfacing, which tends to add to the drama. But the whole hospital routine is just part of life when you have a severe breathing disorder.

So what other things do I do when I’m not being a patient? Well, lots of things. But If I had to prioritize, Id say that giving back in the form of educating the public is on the top of my least. I try to devote at least a few hours per week to public awareness/advocacy/blogging, those sort of things. I don’t want anyone to go through what I’ve gone through with this disease, and I believe spreading the word brings more people onboard and reduces suffering and loneliness. It might sound odd, but timing and frequency of these activities tends to evolve around my actual asthma flares. For me, it’s just easier to think or write about a subject when I’m suffering acutely from it. I also believe that the high dose prednisone that accompanies those flares gives me more clarity on whatever it is I’m trying to focus on. I also try to stay current on asthma treatment breakthroughs, as well as actively participating in a least one research project at time.

Next in line would be Fitness walking. After all, it’s the main reason this blog exists in the first place. Obviously I can’t walk as far or for as long as I used to, but it’s not because of my lungs. It’s because of issues with my knees and leg muscles, which I hope to resolve soon. In any case, I still walk at least 2 miles per day, sometimes more. Im also doing more pre and post walk stretching to prevent further injury to my legs. No more full marathons planned, but I’m not excluding the possibly of a 1/2.

Third on the list is music practice. Sometimes you just need a hobby that makes you feel good no matter how bad you feel. One that transports you to another place. But one that also requires some skill and practice to get there. I love the sound of a double bass, but I don’t have room for one in my house, so I play the bass guitar. Possibly the only weird part, is the time of I day I actually practice. Uh, that would be would be 4-6am daily. On Sundays I can play 6 hours straight. The reason for the early start is mostly breathing related. My best breathing occurs in the early morning and I have a hard time sleeping anyway, so why waste the hours.

Finally, and in no particular order on this one ….I spend most of my days doing what most people do…. living an ordinary life the best I can. From home and car upkeep to shopping to planning new adventures to doing nothing at all. Just the normal stuff that everyone does. Oh, did I mention that I love to eat too. I love to eat, but I don’t love to go out to do it. So lots of take out or home cooking experiments. I also love to read , I love technology, I love learning in general. I also love to teach.

So while it might seem that Im endlessly suffering from debilitating and life threatening asthma flares, I’m actually living pretty much way most people do, only on a shorter leash and with some terrible asthma sprinkled into the mix. Its all about perspective.

Hobby Room

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Breathinstephen by Breathinstephen - 3M ago

Continuing on the stenosis and scarring theme, you’re not gonna believe this one.

So about 2 years ago my doctors and I noticed that every time I had a urinalysis done, either routine or because of a suspected UTI, the results would always show the presence of microscopic blood, anywhere from a trace to large amounts. At first we wrote this off as a side effect of an infection. Well few months ago, in the absence of any bladder infection or prostate issues and with blood still showing up in my urine, it was recommended I follow up with a Urologist to try to nail down the source or cause.

After a couple visits with the specialist and several diagnostic tests, including a pelvic CT scan and Cystoscopy, today we finally know the reason behind the mysterious microscopic blood in the urine. Almost immediately after the doctor inserted the scope into my urethra, he ran into an obstruction or narrowing caused by scar tissue. WTF?
Crazy as it sounds, just like with the scarring of my upper airway from multiple intubations with a breathing tube, almost the same exact thing happened in my urethra, only this time it was caused from the repeated insertions of Foley catheters. Is it just me, or does anyone else see a trend here?

Fortunately, the Urologist was able to dilate the constriction right there on the spot using the cystoscope itself, literally stretching out my Urethra. According to him, there shouldn’t be any more blood detected in my urine and he predicts I’ll be able to pee like a teenager again. Interestingly, I never really had symptoms of a blocked or narrowed urethra. Cant wait to go to the bathroom to test the doctors prediction. ( yes, I actually wrote this post on my phone less than an hour after the Cystoscopy procedure and before peeing)

In all fairness, with the exception of the scarring in the small airways of my lungs, it was the tubes that started the process of scarring in the other parts of my body. BUT, those “tubes” wouldn’t have been needed in the first place if it weren’t for my asthma. BTW, the reason for the frequent foley catheter insertions, is that anytime you’re intubated and placed on a ventilator ( at least at UCSF), they automatically insert a urinary catheter into your bladder so that your urine output can be closely monitored. So, looking at the treatment of severe asthma in its totality within the hospital setting, its not a stretch to say that is yet another example of a crazy side effect from this crazy disease.

There probably wont be any long term consequences of having a little bit of scar tissue in my urethra, but the same cant be said with the scar tissue in my throat, vocal cords and small airways. Those are mechanical changes that are life altering and that may or may not get worse over time. So far with my throat, Ive had 2 surgeries in just the past 6 weeks to keep my airway open. Hopefully, that will be enough to stabilize things for a while. The scarring inside my lungs however, which is a direct cause from a lifetime of severe asthma exacerbations, cant be fixed and will never go away.

Thankfully there are no other areas on the body I can think of that would require an indwelling tube or catheter for asthma. Oh wait, I almost forgot about IVs and arterial catheters. Frequent insertions of those tubes can most definitely cause scarring and collapse of the blood vessels involved, which is why I also have a venous access port ( VAP).

The fun never ends. And it would seem, neither does the scarring.

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Expanding on my previous post……..

As if my life isn’t complicated enough, after learning more about this new condition I have called PGS (posterior glottic stenosis), its becoming increasingly apparent that this changes the way in which my severe asthma exacerbations will be treated in the future. It used to be that my biggest fear during a really bad exacerbation was that I would end up with an endotracheal tube down my throat. Now my biggest fear is that they might not able to get one in.

Following my initial dilation procedure 5 weeks ago, the size of my airway opening is slightly larger, but its still only about 40-50% of normal. If I needed to be intubated in the future for my asthma (which I undoubtedly will), it would be difficult to get a normal adult size breathing tube in without causing even more damage. Still, and after discussing this with my Otolaryngologist, depending on the circumstances, regular intubation is not totally off the table. In her opinion it’s still doable, though they would have to use a smaller pediatric size ET tube or perform what they call an “awake fiberoptic intubation“, either through the mouth or nose. I’ve never had a breathing tube insert through my nose while totally awake, but Ive had several laryngoscopies and bronchoscopies done, and while slightly uncomfortable, with proper numbing of the area they’re not painful. However, I also know from working in the field that most critical care clinicians are not too keen on using small ET tubes on their Respiratory patients. Trying to ventilate adult sized lungs through a child sized breathing tube can be tricky. You’re essentially trying to push a large volume of air through a small tube, which can cause turbulence in and higher pressures in the airways. Kinda like narrowing the nozzle on a garden hose. It’s also more difficult to breath and cough through a smaller breathing tube, and its more difficult to pass a suction catheter through one as well. These might be inconsequential concerns in an emergency situation, but they can present real challenges in the long term.

So yes, under optimal conditions and with some modifications I can likely still be intubated. The problem with bad asthma flares however, versus other situations for which people are intubated, is that things can go south really fast, sometimes within minutes. The upper airway can literally clamp shut. Intubating a tight asthmatic, even one without glottic stenosis, is almost always considered an urgent or emergency type procedure. Ideally in my case, the medical staff would know in advance about my compromised airway and Id be closely monitored. But even under the best of circumstances, things don’t always go as planned. If they encounter trouble while trying to get an ET tube in, even a smaller one, they might have to resort to doing an emergency tracheostomy. Obviously, performing a surgical procedure like a tracheostomy in the middle of a bad asthma flare isn’t ideal. Performing a tracheostomy (basically cutting a whole through your neck into your trachea) requires a surgeon, so more than likely they would opt to do it preemptively, which of course is whole other issue. The cruel irony in all this, is that it was probably all the intubations I have had due to my asthma that caused the stenosis in the first place.

To help the above scenario Ive agreed to undergo microsuspension laryngoscopy under general anesthesia, so that the ENT surgeon can better look and feel for what’s going on down there. They can then decide on how best to approach treatment and carry out the various surgical procedures right then and there. There’s no guarantee that any of this will work, but if I do nothing the condition will probably get worse, especially if I have to be intubated again. Here are the actual consult notes from my appointment with the UCSF Otolaryngology team.

With all of this happening so fast, its been hard to get my head wrapped around it all. For the first in my life, there’s the possibility that I might enter a hospital for an asthma attack and walk out with a hole in my neck. Knowing the course that my bad asthma exacerbations usually take and knowing how stubborn I can be in these situations, would I delay seeking hospital care for a bad exacerbation? And if I went to the hospital, would I deliberately push myself too the brink to avoid intubation? Would I flatly refuse it all together? It wouldn’t be the first time. After an incident a few years when I woke up during intubation while still paralyzed. I was so traumatized by the event that I swore I would never allow them to intubate me again . During a subsequent hospitalization for asthma, I actually refused intubation and chose non -invasive ventilation ( BIPAP) instead. I was on that machine for 5 agonizing days and got so fatigued I almost died. Obviously I pulled through, but after that episode I decided to seek psychological counseling to help deal with my fears. After few therapy visits my PTSD improved to the point where I was more comfortable in allowing them to intubate again if needed… which happened not too long after that. But my current situation is much different. This is the first in my life where I actually have a physical blockage in my throat, which automatically makes intubation more difficult. Not sure how Im gonna deal with it if they tell me I need a tracheostomy to save my life.

Im so frustrated. Why can’t I just be a normal asthmatic? Why do I have to experience every weird side effect there is to this crazy disease? If I had “normal” asthma I wouldn’t have to worry about this, because the vast majority of people who suffered from asthma never need intubated for it. Ah, but lucky me, I don’t have typical asthma. I know, poor me, but I also know that Im not alone in dealing with this. Though the condition is rare, the most common cause of acquired PSG is intubation. In fact, it’s estimated that up to 15% of people who are intubated, for whatever reason, will likely develop PGS. I know should be grateful that Ive managed to survive for so long with this disease without needing a tracheostomy, but still, the thought of possibly needing one just adds to my anxiety.

Hopefully, this upcoming surgery will open up my airway enough where tracheostomy will be an option of last resort, rather than the option of first choice.

Lidocaine neb treatment before Bronchoscopy Post bronchoscopy. You can see my vocal cords on the screen

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