To help cope with his severe asthma, Stephen Gaudet turned to exercise, developing his own pulmonary rehab program to help maintain what was left of his lung function. Big on aerobic exercise, he frequently takes part in race walking and endurance walking tournaments, chronicling his experiences, discussing his treatment decisions, and sharing the nuances of living with asthma in general.
I post my personal hospital bills from time to time to show how incredibly expensive an asthma exacerbation in the San Francisco day area can be, but this one takes the cake.
At first glance it may seem like a drop in the bucket compared to some of my hospital bills. That is, until you realize that this bill is for single day in the hospital! Actually it was for less than one day, as I was discharged from the hospital just 23 hours after I got there. All I can say is, Thank god for Medicare and supplemental insurance.
Im a happy camper in this photo, because today I completed my first feasibility walk. It was only a 2.5 mile walk, but I tolerated it reasonably well without a break. Assuming I don’t have any setbacks, I should be able to complete the rest of these test walks and render an opinion within a week or two.
Test walks, Feasibility walks? What the hell is he talking about?
For those not familiar with my story, Ive had wickedly bad asthma all of my life and these past 2 years have been some of the worst yet. I was sick most of that time and couldnt catch a break. Something like 12 hospitalizations and 10 intubations in that period almost pushed me over the edge mentally. Conventional treatment wasn’t working anymore, and the high hopes I had for an experimental biologic drug were dashed when I ended up having a weird reaction to it 3 months into the therapy. My doctors were frustrated as well, and I got the sense through their comments and actions that they didn’t think Id make it another year. Paranoid of doing anything that might make my breathing worse or put me back in the hospital, I started withdrawing from the world around me. I was suffering from depression and didn’t even know it.
But what a difference a few weeks can make. We’re now a few months into 2018, I haven’t had a multi-night hospital stay in nearly 2 months and I seem to be finally getting that break. Whether it lasts a few days or a few months, I’ll gladly take it! And now without the influence of high dose steroids surging through my body and altering my thinking, it occured to me…. for someone who supposedly has one of the worse cases of asthma ever seen in a human being, and who has accomplished some pretty amazing physical feats despite it, why not push the boundaries even further? The reality is, I’m going to suffer severe exacerbations for as long I exist, so why lay low and play it safe until the inevitable cycle starts all over again. That’s not living, that’s being held hostage. When I’m feeling well(and that’s a relative term), I want to participate in life on a broader plane. I don’t want my good days centered solely around hospitals and medical crap. I want to get out there and have fun. I want to get sore and banged up in good ways. I want to amaze myself again. I want every good breathing day to count for more than just getting to the next day.
That said, Ive been toying around with the idea of possibly doing another race. I’m very curious to see, given my tenuous health, if it’s even remotely possible for me to push myself that hard anymore. Ive had brief comebacks before, but it’s been nearly 4 years since I did a race, and a lot has changed since then. With my current lung status and endurance level, I have a hard time walking a mile once or twice a day without struggling to breath, so how on earth would I tackle much longer distances. That, plus I’m not getting any younger. If I decide to do another race, I’ll be 64 years old at the time. Actually, the age thing is good because the field of participants in that age bracket is much narrower than the younger age groups. In other words, my crappy finish time wouldn’t be so noticeable. But that’s for another post.
Yeah, sometimes my desire to do something crazy like walk a 10 to 26 mile race is totally out of proportion to what my body will actually agree to, even with proper training. So, in an attempt to make a more informed decision on whether I should pursue these types of physical challenges, I came up with a plan a few years back using objective criteria that would provide me with at least a hint of what’s doable and what’s not for my particular situation. I call it my “Marathon walking feasibility plan” or feasibility walks for short. Now, if you’re healthy and free of disease, this kind of pre training vetting is not really required. I for one, firmly believe that given enough time, ANYONE in any physical shape can finish a marathon. But, for people like me with messed up lungs, we’re still pretty much in uncharted waters. You can be in excellent physical shape in every other regard, but if you can’t get air in or out of your lungs, you’re not gonna get very far, and could actually put your life at risk. I wish it was as simple as saying, YES Im gonna do a marathon, or no, I’m not going to do one. But it doesn’t work that way for me. Anything involving prolonged physical exertion, such as marathon training, takes a lot of advance preparation and an iron- clad commitment. So before even considering something like this, I need to be reasonable sure that I will succeed, or at least not crash and burn while trying.
The actual walks are just one part of the process that I use to determine my odds of successfully training and/or completing a marathon of half marathon distance event. I usually have to do 4 or 5 of these walks to get a good sense of how my body might react to the training that will be required to pull of a race. Each of these test walks is a different distance ranging from 2-4 miles, over a different topography (flat and hilly) and at varying paces. I do this to see how my body, especially my lungs, will react. During these test walks, I check my O2 sats and PFs before, during and after. I keep a diary of my symptoms and how much medication Im requiring, etc.
In addition to the physical assessments gleaned from the test walks, there are other considerations that factor heavily in my decision of whether or not to pursue training for a race. Probably the biggest one being… how badly I want to do it! How much effort and discomfort am I willing to put myself through in order to obtain that goal, especially one as transient as a half day race. Then there are the medical implications such as, can my lungs handle this? Will I have enough time to recoup if I get sick or am hospitalized while training? What do my most current Pulmonary function tests look like?, and am I healthy enough in other ways? Lastly, there are the practical considerations like, how much training will I require, when and where will I do it? ( Im allergic to almost everything in the enviroment). Will I be able to work my training schedule into other aspects of my life? When and where will the venue be?, How will I get there?, How much will everything cost, including shoes and travel expenses? Will I need someone on the course with me? What happens if I get sick during the race?, And the list goes on.
But first things first. For this latest quest, I need to get out there and go beyond my current comfort zone (which is 1-3 miles a day with rest breaks) and see how I do, and this is what these test walks are for.
So lets see how far I get with this current pipe dream. (Insider tip….. if you ever want Steve do do something difficult, just tell him it can’t be done.) Stay tuned!
Found these in my closet today. Sure brings back a lot of memories, mostly good ones. They were my very first pair of race walking shoes that I purchased 12 years ago while training for my first full marathon. They’re a little beat up and don’t have much tread left on them now, but I wore them today during my regular morning walk and they held up fine. The brand name “Loco” is very fitting as well,as it sums up my crazy marathon journey. The Loco running company doesn’t make shoes anymore, but they still hold races on the east coast.
A lot people who stumble across my website while searching for asthma related stuff, might not realize that even though I write a lot about asthma, I originally started this blog as a way to chronicle my foray into the world of fitness/endurance walking (something totally unheard at the time for a person with advanced lung disease.) You might say I took it to the extreme.
Between the year 2005 and 2011, I clocked over 10,000 miles, with the majority accumulated by crossing the Al Zampa Bridge in the town where I live. I racewalked that bridge 1158 times to be exact. Mind you, this was at a time before Fitbit or other fitness trackers were a thing. In 2006 I thought I was super cool by having one of the first GPS trackers by Garmin. I used it mainly for tracking my pace in real time, but the location and other features were nifty too.
During those first 6 years I completed a string of races, which included 8 full marathons and 12 half marathons and a couple 10k races. After finishing my 3rd consecutive Boston marathon in the spring of 2011, I decided that Id had enough. I just didn’t have the motivation or drive anymore to push myself so hard, it just seemed like a good time to stop.
Though I wasn’t training for anymore races, I continued to put in at least 20 miles per week up until 2013. But, with declining health I cut that back to about 8 miles per week. Then in mid 2014, I got this crazy urge to train for one more marathon. For 4 straight months I ramped up my mileage and got myself mentally prepared, but training for that race was a lot more difficult that in previous ones. I was older, my body wasn’t as strong, my asthma was out of control, and frankly the passion Id had for those first few races just wasn’t there anymore. Despite all the training set backs however, I went on to finish that marathon, albeit just barely.
Since that last race in 2014, I haven’t trained for or entered any other races, or even taken any walks greater than 5 miles. But make no mistake, come rain or shine, crappy breathing or not, to this day I still get out and walk several miles at least 6 days per week. And when I say crappy breathing, we’re talking sometimes less than 48 hours after leaving the hospital’s intensive care unit.( Ok, maybe 72 hours if I was on a ventilator). Seriously though, I walk even when Im actively flaring or recovering from a really bad flare. Fitness walking is such a huge part of my life that I consider it part of my ongoing asthma therapy, especially after severe exacerbations and hospital stints. I don’t ascribe to the notion that you should rest and take it easy after a bad asthma flare. I mean who can relax or sleep while when they’re breathing well or are on high doses of prednisone? I know I sure can’t. I think the worse thing you can do after a bad flare is to turn in to a couch potato. All you’ll do is gain lots of weight get and become even more deconditioned. Sick or not, I figure my body will tell me if I’m over doing it.
My main motivation for exercise nowadays, is primarily to preserve what little endurance I still have left and also to break up the monotony of the day. I take further advantage of that time by listening and/or studying a piece of music that I’m trying to learn, and sometimes I use my walking time just to free up my mind and get some fresh air. Being a slightly hyperactive person by nature, I get claustrophobic if I’m cooped up indoors for too long.
Because I’m no longer training for formal races, advance planning of where I’ll be doing the actual walk is not an issue for me anymore. I rarely travel into the city anymore to do those longer walks. Mostly, I just walk around the small town I live in. I’m a lot more casual and less regimented now with my walking and how I dress for it. And because I’m no longer racewalking, the type of shoes I wear is less important, though I do try to wear distance appropriate footwear.
Currently I do a short walk in the early morning and another one in the afternoon. Each one is 1.5 miles and takes appx 28 minutes to complete, so on a daily basis were talking about an hours worth of walking. This is about 60% less walking than I was doing just 3 years ago, but still a lot more than most totally healthy people do.
Pre-medicating with nebulized albuterol has become more important than ever now and seems to make a huge difference. Not only because my lungs get tighter much faster now when I exert myself, but also because the neighborhood route where I walk has a pretty steep grade to it. The first 1/4 mile is mostly downhill or flat. The next 3/4 miles are totally uphill, ascending 150 feet during the first half mile of that section and the last 1/4 mile is both up AND down. Even though I’m walking much slower than than I used to ( 17 min/mile pace), the uphill portions of my current route tend to induce a lot more air -trapping in my lungs. Getting my lung maximally dilated prior to the walk helps reduce the air- trapping and chest tightness significantly. Upon returning home I do another neb treatment.
It’s difficult to stay physically active and fit while being constantly sidetracked by health issues and frequent hospitalizations, but in the interim I try to lead as normal a life as possible. While no more marathons are planned, Im not excluding the possibility of a 5 or 10k charity event in the future.
The events of recent weeks have made me think really hard about just how long I want to continue this fight and under what conditions. With 135 hospitalizations under my belt, including dozens of near-fatal exacerbations and a declining quality of life, I find myself asking the question more and more, when is enough, enough? I don’t know quite yet, but I definitely know now what I don’t want .
That’s how I felt during a hospital stint just a few days ago (briefly captured in the clip below). When the prospect of needing to be intubated for the 40th time became apparent, I came to the sudden realization that I didn’t want to do this anymore. And with that mindset taking a firm hold I had the nurse call the ICU doc and tell him I that I wanted no further medical interventions done at this time, including intubation. I figured if this attack is going to kill me, let it kill me. I’m done, I’m tired, I can’t go through this anymore.
When the doc came in I told him to change my respiratory code status to DNI (DO NOT INTUBATE) , which in lay terms means I didn’t want a breathing tube inserted into my airway or put on ventilator to support my breathing. I also to told him I didn’t want CPR if my heart or breathing stopped, what they call a DNR(DO NOT RESUSCITATE) order. Sympathetic to my feelings, he went ahead and cancelled the intubation order. Trying to come up with alternatives, he asked if we could at least increase solumedrol dose and keep me on bipap for awhile longer, to which I agreed. A few hours my breathing actually improved to the point where I didn’t need to be intubated anyway. Thankfully, I had made it over the hump, but still very depressed over my situation I asked if I could be discharged from the hospital first thing in the morning.They were hesitant to say the least, but knowing that I was a lifelong asthmatic and after proving to them that I could walk 100 feet without keeling over or majorly desatting, they obliged and I left the hospital at 9 am, less than 23 hours after arriving there. I was still really tight when I left, but I felt confident I could manage at home on my own. I just needed to get out of there.
So why would a rational person refuse a treatment that could potentially save and prolong their life?
The fact that I have history of bouncing back rather quickly from these bad attacks, might suggest to some, that if anything, I should count my blessings and hope my good fortune continues. Yes, I might be lucky in that regard, but what’s wearing me down is the seemingly endless cycle and sheer number of these attacks. My recoveries might be quicker than most, but struggling to breath, sometimes to the brink of death and on a near monthly basis, gets old really fast and has a huge impact on other aspects of my life. Critical care intervention and life support might be why Im still around today, but it hasn’t changed the course of my disease. Im not getting any better and these bad flares just keep on coming. What if my heart stops during one of these events, or what if I suffer a major stroke, then what? I don’t want to die twice and I certainly dont want to struggle to breath and not be able to communicate that because of paralysis or brain damage. Ive already had one cardiac arrest in my life due to asthma, and I think the only reason I survived it was because I was young at time (16 years old) and was revived quickly. And it’s just not about me. All of these hospitalizations are weighing heavy on my loved ones as well. Its not fair to put them through the hell of not knowing what’s going to happen every time I get sick. So while I’m not giving up entirely, I am creating limits on just how far I want all this to go .
Saying that you want certain things done or not done when you are critically ill, isn’t enough. You have to put your wishes in writing in the form of a legal document called an Advance Health Care Directive. So the very next day after I got out of the hospital, that’s exactly what I did. I had a meeting with my pulmonologist and my partner Douglas to talk about all this. After a lengthy discussion, including the fact that Ive survived so many near fatal exacerbations because of the intubations, and that other than my crappy lungs I am otherwise remarkably healthy (thank you daily exercise), it became obvious, even to me, that a NO NOT INTUBATE order at this point in time would be premature and more a kin to suicide than anything else, so we removed that part from the directive. However, I still feel very strongly about having a NO NOT RESUSCITATE order in place should my heart stop or should I suffer a major stroke. Here’s the order : In the future should I get so sick during one of these asthma flares(either while on or off the ventilator) that I go into heart cardiac arrest again, with the exception of one or two electrical shocks from a defibrillator in an attempt to jump start it if you will, no chest compressions or further interventions (what they call “heroic measures”) will be performed. My Advance health directives form is now complete and will be on file at all the hospitals I go to, as well as a back copy I’ll keep with me. I only wish I would have done this sooner.
There seems to be more and more scientific evidence these days that less is better when it comes to our favorite poison…ie, corticosteroids, such as prednisone or IV methylprednisone. And that applies not only to day to day maintenance doses, but also to the treatment of severe exacerbations that require emergency hospital care.
When I say less is better, Im referring to some recent data that suggests there is little to no added benefit for steroid doses exceeding 2mg/kg of body weight/day (or roughly 60-100 mg per day) for treating asthma. While it true that taking corticosteroids reduces the risk of hospitalization during asthma exacerbation in adults, for those who are already taking these drugs everyday, or have extremely severe disease, the question really becomes, how much is too much?
While I’m a very severe asthmatic with a well documented history of steroid psychosis, a few weeks ago while in the ER during a bad flare, the ER physician asked me how big of a loading dose of IV steroids I usually get during one these flares? I told him they usually give me a 120mg bolus. He said Ok, but this time lets try you on 60mg. Knowing Im sort of a geek when it comes to asthma statistics, he told me about a study they had done there regarding steroids. To be honest though I was little nervous, because Id never received such a small dose during a bad attack. Heck, I taken 60mg by pill that morning at home. But to my surprise, several few hours later I didn’t feel any worse. I didn’t feel any better either, but that’s not unusual for me during the first full 24-48 hours of a really bad flare.
For those who dont know, steroids are not fast acting drugs. Even when given through a vein they can take several hours to kick in. Between the barrage of continuous neb treatments, other meds like Mag sulfate, epi, etc, and the use of Bipap and everything else going on while you’re in the throws of a bad flare, it’s really hard to tell which, if any, of the drugs you’re getting you are helping. But here’s the kicker, though I eventually did require intubation for respiratory failure, for which a higher dose of steroids would not have prevented, when I came off the ventilator I had none of the delirium that I usually experience. But even more striking, is how fast I recovered. They were able to switch me over to an oral prednisone dose of just 40mg on my 5th day in the hospital and I was discharged home on only 20 mg. For me that’s nothing short of amazing. Just a fluke? I doubt it, because this exaceration was triggered by a cold, and those are always the worse ones, which is probably why I ended up on a vent.
So, why do I find this one episode in my life so astonishing and worthy of blogging about? In the past, well actually for as long as I can remember, the customary loading dose for IV steroids (Solumedrol or equiv) for an asthmatic in severe distress ( ie,status asthmaticus) was always 120 mg followed by dosages of 60-80-120 mg every 6-8 hours for the first few days before even considering cutting the dose down….and that’s being conservative. We’re talking a whopping 300-400 mg per day right from the git go. I can even remember hospital stays in the not so distant past where I was receiving close to 500 mg per day for an entire week before they gradually reduced the dose. And if you react to steroids the way I do, you know what kind of psychological impact that can have on a person, not to mention all the physical maladies you develop. If you’ve read some of my earlier posts on the subject you know what exactly Im talking about. But it’s not only that, the longer you’re on high dose steroids, the longer your recovery will take. And longer it takes to recover the great your chances of falling down that slippery slope.
Don’t get me wrong, steroids save lives. I wouldn’t be here today without them . But do we really need as much as previously thought? Apparently not, and that’s good news. As a person who has lived with this disease since day one, and as a respiratory therapist who has the witnessed the horrors of steroid side effect on others, Ive always suspected (and have been quite vocal about it at times), that steroids often do as much harm in the long run as they do good in the short term. Having said that, Physicians are not always to blame for this. To a large extent, steroid doses are actually patient driven. It’s how the patient “feels” or the clinical course of their hospital stay that often dictates the dose they take. The doctor just orders a recommended range with a guessitmate of how long they think you should stay on them. As Ive experienced over and over again during my own exacerbations and recoveries, not all shortness of breath is the same. Whether it be air trapping or residual inflammation or mucus or whatever, there are times during the steroids weaning process when you can feel absolutely awful, yet have pretty much normal PF values. Every asthmatic handles steroids differently, that’s why it’s so important to not only monitor your symptoms , but also to use objective measurements like peak flows to guide your weaning pace. Going by subjective symptoms alone can sometimes trick you into bumping up your steroids unnecessarily, thereby extending your recovery period.
To sum up, Im very encouraged that the medical community is finally starting to recognize the pros and cons of these potent drugs. I hope this new found awareness continues to spread and with help from new biologic medications and other steroid-sparing drugs in the pipeline, that one day steroids will be the drug of last resort for asthma, instead of the first, like its been for the past 50 years.
Didn’t I just blog about my 133rd hospitalization for asthma? Well make that 134 now. This is getting F’ing ridiculous.
This latest flare wasn’t triggered by some massive chest infection or the flu, but by a simple cold….aka Rhinovirus.
Id been feeling pretty decent in recent weeks, but just like millions of other people during flu season…. I caught a cold. I didn’t even think it was that severe. I had a runny nose, a mild sore throat and head congestion, but no major fevers or body aches. As luck would have it though, my lungs decided to get in on the act and 4 days later I ended up on a ventilator in respiratory failure, spending Christmas in the hospital. First this happened….
Bipap Christmas 2017 - YouTube
Overall though, I emerged from this exacerbation fairly unscathed. My asthma responded well to treatment, and other than the usual steroid withdrawals and the lingering effects of the cold, I’ve almost fully recovered now. Still, spending 9 more days of my life in a hospital intensive care unit because of asthma and a cold isn’t cause for celebration. Hopefully 2018 will bring fewer of these severe exacerbations.
Moral of the story, if you have asthma or any chronic lung condition, you are at a much higher risk for complications from a cold or the flu. Even if you’ve had the flu shot ( which wasn’t very effective this year), don’t mess around. Contact your doctor right away if your asthma starts acting up.
My 133rd hospitalization occurred on 10-9-2017. The trigger wasn’t the usual environmental allergies or resp infection, this time it was smoke from wildfires that have been devastating portions of northern California the past couple weeks.
I woke that morning (4am) to a house full of smoke . It was so bad, we had to put towels and masking tape around all the doors windows and vents, to minimize the odor. We basically shut off the peripheral rooms of the house and huddled in the center living room till we could find out was happening on TV. Turns out the fire was 20 miles north, but strong off shore winds were blowing the smoke directly at us.
Ive never been in a situation like this where the smell of smoke from wild fires was so strong and wasn’t even sure how long Id been exposed since I was asleep when the smoke alarms in the house went off. At first I was more concerned about the well being of my outdoor pets, but as the hours went by my own breathing started to get really bad. At one point we got in the car just to drive around with the AC turned on for some relief, but the entire bay area was smoky and driving around would only cause more pollution. So we just went to the store and came back home.
By 10 am my peak flows had dropped below 160 ( my baseline is 280) and I was doing neb treatments every 30 minutes to get them back up. It was then that I was actually getting worried that the smoke was making me sick. Because UCSF can be a 2 hour drive during commute hours, we had to make a decision quickly on whether or not to go to that hospital right away or wait till the evening. I told Doug, lets just get this over with, the longer I wait, the sicker I’ll get.
Arriving at UCSF at around noon, the ER and most of the hospital reeked of smoke. There was a lot of media reporting how bad these fires were and some of the medical staff were actually wearing N95 masks. Thankfully the upper floors where the ICUs are located were much better, and being on BIPAP and then a ventilator I didnt smell anything. But even 7 days later you could smell the smoke on the lower floors. It was awful.
My treatment went the way it always does. They stabilized me in the ER with the usual magnesium &steroid bolus, bipap, cont nebs and supplemental oxygen. They even went as far as checking my vocal cords during the peak of the exacerbation in the ER to check for any VCD which they did not find. Then about 5 hours later they transferred me to the 13th floor ICU. There they did all the preemptive stuff like put an Arterial line in for easier access to frequent blood gas draws. Below are my ABG results for the first 36 hours. We also discussed intubation parameters should it get to that point. A couple hours later it did get to that point ( you can see the corresponding rise of CO2 on my ABGs) and below is the actual handwritten drug list and sequence they used during the intubation. I have a notorious history of walking up paralyzed during intubation and then suffering ICU delirium as a result, so this thoughtful anesthesia recipe was much appreciated. I hope I thanked the doctor who intubated me, because her drug cocktail really worked.
I remained in an induced coma on the ventilator for 2 days, but had some weird nightmares when I awoke and was extubated .This apparently caused me some anxiety, which then compelled me to pull out both my arterial and venous access catheters ( you should see my partner’s shirt). The mental stuff quickly resolved and I was starting to breath better as well.
On day 3 I was alert enough to sign the consent forms my pulmonologist brought to me for the experimental drug Ive been waiting nearly a year to receive, so that was welcome news.
On day 4 I was well enough to transferred out of the unit. I finished the rest of my hospital stay on a regular medical floor receiving just the standard Q4 hour breathing treatments and steroid taper. On day #8 I was begging to go home and they obliged.
But this post isn’t really about a smoke triggered exacerbation or my 133rd hospital admission, what made this situation different is that for the first time I was being treated not only for asthma, but also for constrictive bronchiolitis obliterans( CBO for short). This is kind of a big deal because they’ve suspected for quite sometime now that I might have CBO, but this is the first hospitalization where the medical team actually discussed and documented the condition in my chart. And while the treatment for asthma and CBO is pretty much the same, the pathology of the diseases is completely different, as are the long term outcomes. In a nutshell, asthma usually gets better, bronchiolitis obliterans doesn’t. With CBO it’s more a matter of management and expectations than of full recovery.
The ultimate diagnosis of BO will come after they do an open lung biopsy, but that procedure carries a lot of risk, and given that my lung function isn’t so great, I doubt they’ll do it. Even without biopsies, I meet the clinical criteria for CBO, so they’re treating me accordingly.
A few hospitalizations ago when it was first mentioned that I might have bronchiolitis, I was in total disbelief, after all, why did it take so long to figure this out. I don’t really know the answer to that, but what I can tell you is that I actually have a sense of relief now knowing that there is a plausible cause for why my asthma doesn’t behave the way it should and why it doesn’t seem to get any better.
Going forward will this added diagnosis change the way Im treated medically?…probably not. Like I mentioned earlier, with the possible exception of long term antibiotics, which I’m now taking, the treatment for CBO is pretty much the same as asthma or other obstructive diseases. Having said that, it’s been my experience that the medical community doesn’t like to confuse the issue or muddy the waters so to speak when they’re treating a patient with multiple lung conditions, especially when those conditions have similar symptoms. Everyone’s heard of asthma, very few have heard of CBO. It’s for that reason I’ll probably always be labeled primarily as an asthmatic, even though my other condition is causing most of the problems.
A lot of people have been asking me, do you feel any better since starting the drug?
Because my asthma is so severe it’s really hard to tell which, if any, of the medications I’m currently taking (which includes daily prednisone and semi daily azithromycin, and now Dupilumab) is having an impact on my breathing, or if I’m just experiencing the normal ebb and flow of symptoms that most people with asthma have. But, if I had to answer that question today, Id have to say yes and no with the balance point just to the right of the center line. I don’t actually really “feel” any different, ie…Im still short of breath much of the time, but mentally I do feel better. Still, there must be some kind of physical change going on as well because the numbers don’t lie. After just 4 weeks on Dupilumab my FEV shot up to 1.1 liters (39% of predicted). While that’s still not great, it represents an incredible 80%+ improvement from before I took the 1st dose, which was .65 liters or 25% of predicted. Interestingly, my symptoms actually got worse immediately following the first and second doses and I even had to increase my prednisone dose twice to get over the hump. But again, the numbers don’t lie and those short lived flares early on were probably coincidental.
If I had to characterize how I’m currently feeling at the moment, I would say that I seem to be more stable. I don’t feel a ton better, but I don’t feel like I’m careening down the proverbial asthma cliff either (like I was just a few months ago). And while my symptoms haven’t really improved, I feel much less anxious about that the possibility of the next potentially deadly exacerbation lurking just around the corner. It could also be that mentally I don’t want this drug to fail, so perhaps I just “think” Im more stable. Who knows. Again, it’s too early to tell.
Now it’s important to note that FEV1, or for that matter pulmonary function numbers in general, don’t really correlate well with symptom severity. You can have an FEV1 of 100% and still “feel” like crap. Conversely, you can have really low numbers and not really feel a significant difference unless they were exerting yourself or are actively flaring. So while it’s great to see to my FEV1 rise, a better indicator of improvement would be to see those numbers remain there or go even higher.
Im sure it will take more several months for a definitive answer, but ultimately the proof in the pudding will be when Im able to experience a reduction in the flare ups that require hospitalization and/or a decrease in the amount of steroids I have to take. If and when I attain any of those benchmarks, I’ll know for sure that the medication is helping and making a significant difference in my life.
As with all of these new asthma biologics, Dupilumab is not a replacement for one’s current asthma medications, but rather an add-on therapy which might help reduce that amount of steroids required to stay alive. So being realistic about expectations is probably important as well. Only time will tell if this medication will work on someone like me, but Im, as they say, cautiously optimistic. Honestly, even the tiniest of improvements would make a big difference in my quality of life.
After waiting nearly 17 months with one setback after another, I texted a friend… “I’ll believe it, when the drug is actually inside my body”….lol.
Well now I can actually say that, because on Nov 6th 2017, I finally received my first two injections of the still experimental drug Dupilumab, and in doing so, became the first person in the world to receive the drug for the treatment of asthma outside of a clinical trial.
They gave me the first 300 mg in my stomach and the other 300 mg in my arm at the clinic. After a couple months I’ll give myself the injections at home. Because my lung function is so tenuous and because this drug is still considered experimental for the treatment of severe asthma, they want me to keep a diary to log any adverse reactions or side effects during the first month. It’s now been 24 hours since my first dose and knock on wood, no obvious allergy or side effects from the medication except for some minor fatigue which is normal.
This crazy journey began back in May of 2016 when I approached a representative of the company who makes the drugs , Sanofi, about the prospects of obtaining the drug on a compassionate use basis. 6 months later with the help of Dr Wenzel and the other Pulmonologists who have taken care of me, the company approved the request and sent the required forms to UCSF where I receive my medical care. Because the drug had not yet been approved by the FDA for the treatment of asthma, it took the University’s internal review board a lot longer than usual to approve the request. In mid August of this year UCSF finally gave the green light for me to start the injections, but just few days later, seemingly out of the blue, the University were notified that Sanofi had cancelled their compassionate use program and that I would not be receiving the drug after all. As you might imagine, I was beside myself. I waited so long to get this opportunity only to be disappointed again. In my frustration and disbelief, I contacted the company rep. He was shocked as well and said he would make some call to see what happened.
As always, he came through and 5 days later I received word that the expanded use program had been reinstated and that I would indeed be getting the drug. This time the IRB approval only took two weeks and just a couple days after that while I was in the hospital for an another bad asthma flare, they brought the consent forms to my bedside for me to sign. And the rest as they say, is history.
It will be several months,Being somewhat of a realist and having tried just about every medication and treatment available for asthma to no avail, Im not expecting a full blown miracle from Dupilumab. But, if it can help reduce my exacerbations or the severity of them, even just slightly, I would classify that as a semi miracle, because at this point nothing else has worked.
Regardless of the outcome though, Im eternally grateful to be given early access this potentially life changing drug. A special thank you to my pulmonologists and the research coordinators at the the UCSF Airway Clinical Research Center, as well as Dr’s Gianluca Pirozzi and Sally Wenzel and the folks at Sanofi–Regeneron for making this happen.
Here’s the clinicaltrials.gov listing:
The Dupilumab compassionate use study (NCT03020810)intervention Details:
The patient will receive a 600 mg subcutaneous dupilumab loading dose on Day 1, and then 300 mg subcutaneous dupilumab every 2 weeks
This is a single-patient study.This study is being undertaken to determine whether dupilumab has efficacy in extremely severe asthma, and to allow a very severe asthma patient, who has been tried on nearly every immunosuppressive drug, early access to a potentially effective therapy.
The patient will continue in the study indefinitely. Safety will be evaluated and serious adverse events will be reported.