Being sick for long periods like this, often has me thinking about lung transplant surgery and how wonderful it would be, at least in my mind, to not have to struggle to breath all the time. This month also marks the one year anniversary of my initial SARP work up, and the infamous meeting of the minds over at UCSF. At that time we had all decided that my disease wasn’t severe enough to be considered for transplant, and even if I did meet the criteria, I had pretty much made up my mind at that time, that transplant surgery was something that I wasn’t interested in. Well that was then, this is now.

Here I am a year later, getting more breathless everyday and starting to seriously re-think my earlier decision. But wait… even if I were to change my mind and actively pursue lung transplant surgery as a treatment option, my current baseline FEV1 of 35% is still too high to qualify. And if I’m suffering this much in the mid 30′s, I can’t even imagine how bad it must feel to be even lower.

The fact is, most people on the transplant waiting list have FEV1′s in the 20′s and sometimes in the teens. The majority are also on supplemental oxygen 24/7, and some of the sickest people are even on ventilators while they wait for donor lungs. I only require oxygen when I’m actively flaring and my FEV1 rarely drops into the 20′s unless I’m really really sick and Ive always managed to bounce back. [This whole oxygen criteria thing shouldn't even apply to an asthmatic waiting for transplant. The pathology of asthma is much different that Cystic Fibrosis or COPD. Asthma is a disease of the airways, not the alveoli. Most asthmatics don't require supplemental O2 unless they're actively flaring].

I suppose I should thank my lucky stars that my FEV1 readings are still in the mid 30′s, and occasionally even into the 40′s, but as good as I have it in comparison to those waiting for new lungs, life in the the 30′s is not exactly a picnic. And the fact that my lung function has dropped almost 30% in 6 years, tells me that my numbers will only continue on that downward path. It’s not a matter of if they will drop into the 20′s, but when .

Living in the 30 percent range is like living in a kind of breathless purgatory. Your days are filled with this low-level dyspnea that doesn’t get too severe unless you’re flaring, but is always there in the background effecting everything you do and making you miserable. In the 30′s percent range your lung disease becomes so advanced that most conventional therapies or medications no longer work, yet you’re not quite sick enough to qualify for transplant. Now, if I had emphysema and had lots of air-trapping, I would be a perfect candidate for LVRS or airway stents. But, I don’t have emphysema, nor do I have the type of hyperinflation or air-trapping that could be helped with airway stents. I have severe asthma with fixed obstruction and there’s very little that science can do for people like me.

There’s another criteria for lung transplant surgery that creeps me out a little and even makes my doctor a little uneasy, and that is, the longevity issue. How long can I be expected to live if I do nothing? Ive had doctors give me predictions of as much 5 years all the way down to one year. In order to be a transplant candidate you have to have a life expectancy of 2 years or less. Most transplant centers base that prediction on a BODE score of 5 or more.Currently, my BODE score is a 4.

I know I should be grateful for all Ive achieved through fitness and pure stubbornness, but sometimes I feel like I’m being penalized for doing the right thing and staying in shape. Had I not done all these healthy things, my FEV1 would have surely declined faster, putting me in a position where Id be eligible for transplant by now. Let’s face it, not too many people with an FEV1 of 35% have completed 7 marathons. What’s really ironic though, is that transplant candidates are scored on their level of physical fitness. Transplant centers want people who will be healthy enough to survive the wait time, ( up to 2 years in some cases), the surgery and the recovery. The stronger you are going in, the better the results. How that’s possible with an FEV1 in the 20′s or teens is be beyond me, but that’s the way it is. I have the required physical and mental stamina now, but will I still have them when my other numbers finally catch up. And even if I do meet all the criteria, will it happen in time? Most institutions set the maximum age for lung transplants at 60, I’m 56.

So as I’m getting ready to finish the closing paragraph of this post, the “But” part of the title hits me in the head like a ton of bricks. Life sucks with an FEV1′s in the 30′s, but I’m not to the point yet where I dread waking up everyday. I’m not to the point where everything I do is a total struggle. I still have the occasional “good breathing day” (or “not so bad breathing day”, whichever way you want to look at it). I’m not ready yet to trade my lungs in for a pair that may, or may not give me more of those precious “good breathing days”. But most importantly, and regardless of all the other criteria, I know I’m not ready for a lung transplant, because I’m still questioning whether I can live without one. I’ll know Ive hit my rock bottom when I’m no longer able to walk and life is no longer worth living…it’s as simple as that! I can see now why they set the transplant bar so high. It’s meant as a last resort, not a treatment option. So on that note, I’ll stop crying poor me and get on with life.

And as far as predicting how long I’ll be able to continuing walking, who knows, but it sure would be cool to rack up 3 Bostons in a row, before throwing in the towel.

We all know what it’s like to be in asthma purgatory for a few days or maybe even a few weeks, but for 2 months? Geeze, cut me some slack would ya!
Seriously, except for a string of 6 days in the middle October when I still on high doses of pred, Ive been in the yellow zone almost continuously since the beginning of September. Just just check my peak flow records. (A year ago I was blowing 360′s)

I can’t figure out if I’m still flaring from the original exacerbation that landed me in the slammer back in September, or if this is a new exacerbation, or if my lung function is irreversibly declining because of so many exacerbations. Granted, I was pretty sick during that last hospitalization, and all the emotional crap that’s ensued probably hasn’t helped matters , but Ive been much sicker than this in the past ,and it didn’t take me nearly as long to recover. I’m really beginning to wonder if I ‘ll ever get back to where I was before I got sick.

Bumping up my pred dose would probably help improve my pfs and my breathing in general, but I’m hesitant to do so, because prednisone, as much as I hate it, is one of the last drugs I have left in my breathing arsenal. If I start getting dependent on higher and higher doses to keep my lung function up, I might not ever be able to come off it. At this stage of the game, that’s basically a death sentence for me.

The worse part for though, is not being able to get out there and exercise. I feel like a prisoner being held captive by my own disease. Held in kind of a white collar crime prison where you’re given some freedom, but not all. Sure, Im breathing well enough where I can do those really slow 2 mile evening walks, but as far as the real stuff goes? the workouts I really enjoy? the walks that are 5 miles or more? Well, I just get too short of breath, and without those longer walks, I can’t really train for any races, and well……just Get me outta Here!

PS…. One of the cool things about digital pf meters, is that you can upload the results to your computer, or in my case to something called the Microsoft Health vault, where you can analyze, trend and/or share the results with others.
If you wanted to impressive your Lung doctor, you could print out a report, complete with graphs and bring it with you to your next appointment. No more having to keep a written diary.

Thanks everyone for making this a fun contest and thank you Microlife for donating the awesome pf meter.

I wish I had prizes for everyone. Some of you came very close, but there can be only one winner, and that is (drum roll please)…….Kris of Ontario, Canada. Congrats Kris!

Kris came the closest with her winning guess of 291 . The actual number of empty vials was 282

The following is a perfect example of what prednisone can to an otherwise intelligent and creative mind……

I was at the town grocery store the other day, where I noticed they were having a contest to see if you could guess the weight of this huge pumpkin they had as part of a Halloween display. As I was walking home I thought to myself hmmm… I should have a contest of my own, but rather than pumpkins, I’ll have people try to guess how many empty albuterol/atrovent vials I have laying around. Out of this, the inaugural Breathinstephen Halloween Contest was born.

The rules are simple:
All you have to do is guess how many vials are in the bowl and send it to me via email or comment by Oct 29th.

The person who comes closest to guessing the actual number of vials, will win a brand new digital peak flow/FEV1 meter valued at $75.00, courtesy of the kind folks over at Microlife . The Microlife peak flow meter kit comes complete with batteries, a nice carrying case and a usb cable so you can track your data on your computer. I love this flow meter, because in addition to peak expiratory flow rates, it also measures FEV1, which is a better indicator of lung function.

**Here’s a hint…The empties in this bowl represent roughly a month and a half of neb treatments for me.**

Good luck!

(PS….Wait till you see what I’m planning to make out of these things when I get enough of them.)

This is the 2nd installment of my “ Breathing, the mini series“. This one is more for the non-asthmatics out there, but I think some of our lung challenged friends might learn a thing or two as well.

If you hang around asthmatics or browse as many personal asthma blogs as much as I do, then you’ve undoubtedly stumbled across phrases or symbols like “Green Zone” “ Yellow Zone ” ” Red Zone”… Pfs and the like. To the lay person, these terms might just sound like a flowery way for an asthmatic to describe how they’re breathing at a particular time. In many cases however, these terms are not only used as subjective representations of how an asthmatic might characterize their breathing, but they also represent actual physical measurements from a device used to measure lung function.

Most of is ( if we are wise) use a simple, but accurate tool called a peak flow meter to measure our basic lung function. Peak flow meters work by measuring how fast one can exhale a single full breath. The test result is usually displayed in (lpm) liters per minute and is surprisingly accurate if done correctly. The resulting value, usually a number between 300-600, gives us an accurate reflection of how constricted or obstructed our lungs might be at that moment. The lower the number is, the more obstructed your lungs are and the more difficult it is to breath. The higher the number, the less obstructed and the easier it is to breath.

Because lungs come in difference sizes, shapes and genders, peak flow numbers and ranges will be slightly different for each person. What might be a normal peak flow value for one person, might be an abnormal value for someone else. Normal predicted values are based on age, height , weight and sex, but all this is not important. What is important, is that you determine what your peak flow number is when you’re feeling at your best. This is called your personal best or baseline peak flow . This is the number by which all other peak flow comparisons are made.

Your personal best pf is determined by taking a measurement when you’re breathing at your very best, preferably averaged over several weeks and with no symptoms and /or after taking an inhaler or nebulizer treatment.

The next thing we do is mark our peak flow zones: Peak flow zones are based on your personal best peak flow number. The zones will help you monitor your asthma and take the right actions to keep it under control. The colors used with each zone come from the traffic light ( which btw yours truly made popular).

The result will look something like this:

Here are my personal peak flow zones: (Over the years my personal best pf has dropped from 550 to 350)

Green Zone 300 or greater

Yellow Zone 299-210

Red Zone 209 or less

So why do you need a medical device to tell you if you’re short of breath? Well, believe it or not, there are some asthmatics out there ( myself included), who are not always aware of subtle changes in their breathing. We’re known as poor- perceives or under-perceivers. For us, using a peak flow meter on a regular, and sometimes frequent basis, is crucial for getting a better handle on what’s actually going on with our lungs.

On the opposite end of the spectrum you have what they call over-perceivers. These are folks who are extremely sensitive to even minute changes in breathing pattern. These people should use their peak flow meter to verify whether what they’re feeling is actually being reflected in their peak flow readings. They’re are times when you can feel like and elephant is sitting on your chest, only to find that your peak flow readings are completely normal or just a little off. That’s because our brain and lungs are sometimes not on the same page.

Most asthmatics fall somewhere in the middle , and for them peak flows are usually done on an as needed basis or when they have symptoms.

Well, there you have it. The next time you hear an asthmatic talk about their breathing zones, hopefully you’ll have a better idea of just what the heck they’re talking about….yellow, green , red.. and all those weird zony things.

If you’d like to learn more about the asthma zones, in particular the yellow zone, check out this post I wrote a few years back.

I actually had something else prepared for this weeks post, but since there’s a good chance I’ll be heading to the slammer shortly, I thought Id do a quick update on what’s been happening.

If you’ve been watching my sidebar lately you probably noticed that my numbers have been all over the place. Ive been flaring for about a week now. On Thursday I bumped my pred up to 60 mg, and by the time the weekend rolled around I was starting to feel better. Since Sunday night though, and despite being on high dose pred, I’m started to get tight again. For the first time in more than 6 months, I woke up in my red zone. My sats are starting to drop as well and my joints are starting to ache, which is usually an indication that my CO2 is rising. In other words, I’m getting pooped out from breathing.

Not sure of the trigger this time, if any. It could be the season change. September and October have historically been bad months for my lungs. Ive also been really run down lately with a lot of muscle pain and difficulty sleeping, not sure what that’s about.

As luck would have it , my asthma started flaring at a time when I should have been wrapping up my training for my next scheduled race , which is only 2 weeks out. The 11 mile training walk that I did last week, which was supposed to be the longest and the most important training walk for this race, turned out to be a total disaster. Everything went wrong. I got way over heated, had constant GI problems, and my legs and shoulder muscles were throbbing in pain. My shoulder muscles hurt so bad during the last 3 miles, that I seriously considered catching a taxi cab the rest of the way.
I’m gonna give it one more shot later this week if I’m feeling better, but if that walk fails or I’m still sick or hospitalized, I’ll have to withdraw from the race.

In other news, I turned 56 this week( thanks everyone for all the greetings on Facebook), and on Saturday I withdrew from an Italian language class I was taking. It’s an advanced class and I just wasn’t prepared (and wasn’t feeling well). I’ll attempt it again in the winter semester.

Monday morning as I write this post, I’m holding my own, but if my numbers don’t turn around real quick, or if my O2 sats keep dropping, I’m gonna have to take my own advise and get my butt to the hospital. If by chance I do end up in the slammer today, I’ll try to get word out about my status

It sucks to have to write a post like this. Thanks for sticking by me.

Just a year ago I was routinely hitting 370- 380 on the peak flow meter, representing the upper end of my green zone. Well, looks like those days are over.

Though Ive been breathing pretty decent lately with no major flares, on a good day Ive only been hitting 310-320, maybe 330 on a stellar day. In fact, I haven’t been able to top 330 in over 8 months now, which is a little discouraging.

I’m not sure if this drop in my maximum peak flows numbers( personal best ) represents an overall decline in my lung function, or if it’s just that my larger airways are getting stiffer. But , in order for my peak flow numbers to have continued relevancy, I had to recalibrate my breathing zones. ( If not, Id be in the yellow zone ALL the time) My personal best is now 330 instead of 380.

Here are my new re-calculated breathing zones:

Rick over at the Respiratory Cave wrote an excellent post about peak flows. As he points out, one should never rely solely on their peak flow reading to assess their breathing status. The only reason I do peak flow measurements at all , is because I sometimes have a blunted perception of my own dyspnea and can’t always tell when I’m getting tight. The peak flow meter gives me a visual clue and provides me with an actual measurement of my lung function.

Battle scars: 4 failed arterial line attempts and 12 failed IV attempts. I have no veins left and my radial arteries are so scarred up from previous insertions, that it’s virtually impossible to get access unless they put a central line in. Very frustrating for the doctors and very painful for me.

I’d been having vague flu like symptoms, such as stomach bloating and chills for about a week before my lungs started to act up. Less than 3 weeks earlier I had received the H1H1 vaccine as well as the regular annual flu shot, so the last thing on my mind is that I might actually be coming down with the flu.

By New Years Eve afternoon my peak flows started to trend downward, and by that evening they had dropped from 340 to 200. My sats fell from 97 to 89%. I was requiring neb treatments almost every hour and had considered going to the ER right then and there, but had decided against it because of it being New Years eve and all. I figured the hospitals would be jammed with New Years revelers , so I decided I would just try to tough it out till morning and then re-assess. Maybe by then I would feel better. After a horribly breathless and sleepless night spent next to the nebulizer machine, I figured I had had enough, bit the bullet and went to the ER.

As is usual for me, rather than being carted in or delivered by ambulance, I strolled into ER on foot. I told the triage Nurse what the problem was. She took down my name and asked if I was in serious distress at the moment ( since I never really look sick) , I said I was OK at the moment . She had me take a seat in the waiting room ( which by the way, was pretty much emptied at 11am). 5 minutes had past, then 10 minutes, and 30 , and still they had not called me in. By now it had been almost an hour since I had a breathing treatment and I was really starting to close up. I hate making a scene , but I thought I was going to pass out, so I stood up and walked back over the triage window. The Nurse took one look at me and said ” OH MY GOD .. You haven’t been seen yet??? I said no, and I think I’m going to pass out. Within 30 seconds I was on a gurney on my way to the resuscitation room . I didn’t actually pass out, but I sure prompted a lot of people into action. Before I knew it, I was on a continuous albuterol neb with people whirling around me trying to get IVs in. They asked the usual questions.. Have you ever been intubated? Before I could answer, one of the ER doctors recognized me and said “He’s a bad one….he’s been intubated a dozen times”
Within a record 30 minutes, the ICU team had completed their evaluation and I was on my way to the unit.

In the ICU they put me on the usual Bipap setting of 12/5 with 15mg/hr of Albuterol piped in. Because of my flu symptoms, they swabbed my nose with the rapid flu test, put me on droplet precautions and placed me in isolation, which means anyone coming in contact with me had to wear a mask and eye shields. Im sure the staff weren’t too please about that ( I know from personal experience what a pain it can be to work with a patient who is in isolation, especially a ventilator patient.)

For the first few hours, the bipap seemed like it was helping, my Sats had increased to 98% with an FIO2 of just 40%. Although I was saturating well, I was starting to feel that all familiar ache that I feel when my CO2 starts to climb. After several unsuccessful attempts at placing an Arterial-line ( which hurt like hell), they finally gave up and resorted to doing individual ABG draws.

(My Hannibal Lecter look before Intubation)

I had now been on bipap for about 4 hours and my PCo2 was starting to climb. The first PCO2 came back at 43, but I was on bipap and my resp rate was in 50s ( this is not a good sign). An hour later my PCO2 was 60. A half hour after that, it was 66 and my Ph 7.29 . It was time for the intubation talk. Rather than himming and hawing about how long to wait, this time I told them straight up, just intubate when you think Ive had enough. They agreed, and 30 minutes later it was lights out for me. 14 hours later I woke up with a tube down my windpipe.

Just a few hours later I was extubated and talking up a storm …or should I say cuzzing up a storm. Why was I not kept down longer? Why didn’t they use propofol to sedate me. Why were the RTs being so rude to me this time?

The anesthesiologist had promised me that they were going to use propofol and keep me asleep for at least 48 hours, but it turns out that I had the same weird reaction to propofol as I did during the previous intubation. Something called “infusion syndrome“,so they had to stop giving it to me. They thought it was strange, because propofol infusion syndrome usually occurs in people who are sedated for several days.
For that reason they had to use Versed and Fentanyl instead of propofol to keep me sedated, making it much harder to keep me asleep. At one point I actually remember walking up “paralyzed” and unable to move or communicate. Apparently they had not sedated me enough and I woke up before the paralytic agent (a drug they use when they insert the tube) wore off. Talk about a horrible experience. Nothing like being a zombie. In total, I was on the ventilator for less than 2 days.

After being extubated the RT gave me the choice of using the continuous neb or the bipap…. of course I chose the neb. I did Ok for about an hour , but then once again ,my PCO2 started to climb. Not happy with my recent ABGs, the RT comes into the room accusing me of causing this spike in my CO2, because of not following her instructions of using the bipap. WHAT THE F!
Since when is the patient suppose to decide what type of therapy he gets? Even an RT/ patient deserves someone else to call the shots when he’s sick. I didn’t like her attitude and I told her. The next thing I know, she sends in her supervisor who starts patronizing me. He says to me…” your Ph is 7.30 and your CO2 is climbing again. If you want , I can help you correct it. If you’re not willing to help,then there’s nothing I can do for you. WHAT THE F AGAIN? What’s with the all the attitude. Evey one was nice to me before I got exubated. What did I do?

I was so pissed off I wanted to scream, but I figured that they would treat me better if I did what they wanted. So I just sucked it up and did what they asked. The male RT set me up on what they call “non-Invasive” ventilation. It’s basically where they hook you up to a ventilator with a mask instead of an endotracheal tube. Its just a fancy way to give Bipap. He also encouraged me to play with the ventilator settings , so that I could adjust it the way I wanted. ( Remember, I’m an RT. I know how to operate ventilators). At this point I couldn’t figure out if he was making fun of me, or if he appreciated the fact that I was trying to play ball with him and cooperate. In any case, his act of showing a little kindness paid off, and within a short time my ABGs were stabilized and everyone was happy, including myself.

12 hours later I was strong enough to breath on my own and they were able to discontinue the breathing machine entirely. So, what was up with all the attitude they were directing my way? ( more about that later)

I have now been in the hospital for 3 days, been on and off the ventilator, and was starting to breath a little better. The Rapid flu antigen test came back negative, but because the test is only 50% accurate, they decided to do the more sensitive test for swine flu. That test takes 6 days and had to be send the to state for processing. What this basically meant, is that even if the test was negative, I would be spending the rest of my hospital stay in isolation. I really didn’t mind because it assured me a private room my entire hospital stay.

On Day 4 I was deemed stable enough to be transferred to the step down unit, where I stayed until my discharge 3 days later. While there , I was placed back on a continuous albuterol neb, but this time the dose was decreased to 5 mg per hour.I did fine on that , but began coughing much more than I usually do. My biggest complaint was the congested nose and the unrelenting chills from whatever virus I had. Eventually , my chest became congested as well. I was able to cough up some gunk , which they analyzed in the lab. Seems on top of this virus from hell, I also had a bacterial infection brewing and now had bronchitis. The next morning they started me on Doxycycline and decided to keep me in the hospital an extra day. On Friday I still felt like crap, but was home sick and convinced them that I felt well enough to go home.

I am not an anxious person, unless I’m suffocating to death. I can see now though, that my requests for painkillers to make my breathing easier, would probably account for why some of the doctors were acting weird around me. On more than one occasion, I has some of the doctors trying to convince me that I should try some long acting anti depressants and/or anti -anxiety meds, instead of opiates to manage my dyspnea. They also gave me a list of referral to various specialists who supposedly deal with dyspnea management ( all of whom, Id seen in the past without success). I reminded her, that I was taking opiates on the recommendation of one of UCSFs own highly acclaimed palliative care doctors.
In the end, I basically told her that we had been down this road many times before, and I that I refuse to discuss the matter any further. It’s my life, and if I choose to take opiates during bouts of severe breathlessness, that’s my choice, and it should in no way, change how I am treated during an active severe asthma exacerbation. Case closed!

Dont get me wrong, I’m grateful, and for the most part , satisfied with the medical care I received during this hospital stay. There were a lot of good things that happened as well. For example, for the first time ever, the doctors actually granted my request to not exceed 60 mg per day of Solumedrol or prednisone, which really helped.

Bottom line…Much like a credit report, incorrect statements or diagnosis that end up in your chart , can have a negative effect on the type of medical care you receive for years to come. I think this is especially true when it comes to medically complex patients (such as severe asthmatics.) A lot of this misinformation could be avoided if physicians were allowed to follow their patients in the hospital. Of course, that’s not likely to happen.

On asthma severity scale of 1-10, this probably only ranks a 6 or 7, though having the flu at the same made it feel like a 10. Number 97 is behind me now, but I still have a long recovery ahead. It will take me weeks to regain the strength I lost in just one week of illness. As Ive said before, the aftermath of a severe asthma exacerbation is often more difficult to deal with than the actual attack itself.
It often takes several days after the hospitalization before you start feeling the trauma of what your body has been through. Being jabbed dozens of time with needles and catheters. Lack of sleep, sensory overload, having a hose shoved down your windpipe, being place on artificial life support. And then of course , there’s all those potent drugs. All these catch up with you. Yes, the recovery is often the worse than the treatment.

If there are any bright spots to this other wise crappy week, it would be the wonderful Nurses I encountered in both the ICU and Step down units who have taken care of me many times. They are angels.

And finally, a special thank you and hug for Kerri and Dr Wenzel who took the time to check up on me everyday while I was in the hospital via telephone. Dr Wenzel recommended that they do a PFT on me for discharging me,..and they actually did it! Now, that’s what I call clout!

PS…In all fairness, the RTs in question were new to me . I had never worked with them before. Maybe they weren’t aware of my little quirks, but it still doesn’t give them the right to treat me like a 2 year old. As far as some of the physicians concerns, I suppose they were justified, I just wish they would talk to me before rushing to conclusions.

Last week after finding out just how damaged my lungs really are, the only thing going through my head was..WHY? All of the assumptions I had made about my asthma throughout the years, suddenly didn’t seem to make sense anymore. I was beginning to wonder if I really ever had asthma at all? Maybe I just thought it was asthma, when it was actually something totally different? These are the crazy things that were going through my head. I had a ton of questions I desperately needed answered , and since she knows my lungs inside out ( literally) , who better to ask than Dr Wenzel.

Well, not only did she take the time to answer all of my questions, but the answers she gave ….made total sense.
I’m posting some of that discussion here, because I think it might help others out there who are in a similar situation. At the very least, it makes a great refresher course for the RT’s out there.

[Steve ] Because my larger airways are so scarred and stiff, does that mean that they ‘re incapable of clamping up or spasming or narrowing? [Dr. Wenzel]  No, not completely, but certainly will be harder to spasm.

[Steve] If that’s the case, and my larger airways are not clamping down, when I have an exacerbation, is it the smaller airways that are reacting? [Dr.Wenzel] Yes, they most certainly are likely to be and because it is also likely that they are narrower to begin with, just a little spasm COULD effect it a lot.

[Steve] I thought there was no smooth muscle in the smaller airways? [Dr.Wenzel] There IS smooth muscle in your small airways. But, you probably ALSO have “Scarring”/fibrosis in those airways which probably leaves them normally much narrower than normal small airways. Just a little mucus or spasm and they will close.

[Steve] You mentioned earlier that I might not actually have chronic inflammation of my airways.  If there’s no inflammatory process going on, or no smooth muscle spasm going on, what causes the obstruction or air flow limitation when I flare-up? [Dr.Wenzel]  See answers above. In addition, you likely have “loss of alveolar-airway attachments”. The alveolar septae attach to the outside of the small airways and actually help to “tether” the airway open. When those get destroyed, as we think they do in SEVERE asthma, that tendency to PULL the airway open from the outside is lost.

If my airways are non twitchy or non-reactive because they are so stiff,  how is it that I can have severe asthma exacerbations that land me in the hospital and sometimes even on a ventilator? [Dr. Wenzel] Your lungs (I think) are very stiff and when you have an attack your work of breathing becomes VERY BIG. That is why your CO2 increases. In addition, you did have a couple of attacks where your lactate levels did increase… that also goes along with your breathing VERY HARD and causing your muscles to start breaking down.

[Steve] If my airways are so damaged, why do I respond, and even partially reverse, with certain bronchodilators and steroids.[Dr. Wenzel] Although you likely don’t have much inflammation, the little that is there (plus some edema) reverses with the steroids. The bronchodilators likely just relax your smooth muscle enough to have an effect, albeit not a big one!

[Steve] Do I have any elements of COPD or Emphysema? [Dr.Wenzel] NO you don’t have COPD OR EMPHYSEMA!!!!

[Steve]Isn’t that generally the course that asthma takes over the long term? [Sally] NO!!! ASTHMA ALMOST NEVER BECOMES EMPHYSEMA…unless you smoke!

[Steve] Regarding my FEV1s, I think the reason I got a 50% reading that one time, was because I exhaled less forcefully during that particular manover ( I was still sleepy from the bronchoscopy). For some reason, when I blast out as hard and as fast as I can, I get slightly lower numbers. ( I think because my airways are narrowing too fast?) [Sally] YES, that is most certainly the case. There is a FORCED vital capacity and a SLOW vital capacity (meaning just that, that you exhale SLOWLY from Total lung capacity to residual volume) It IS likely that your SMALL AIRWAYS do collapse when you exhale fast due to the external force on the airway being greater than the force holding them open during expiration (when you have negative pressures in the airways themselves) .

And finally, there was this….
[Steve] BTW…..The wager we had regarding me being able to ever blow a 50% FEV1 as a result of using Qvar , was that you would get a new set of golf clubs. [Sally]  hee-heee… I expect only the finest clubs when I get you there!

(I just noticed what it says on the pillow)

First , the good news…..

I finally got to meet Dr. Sally Wenzel (up close and personal you might say, considering she analyzed my DNA and probed around inside my lungs). It’s difficult for me to find just the right adjectives to describe how I feel about her, so I’ll just say … I love this women! She’s like my pulmonary physician soul mate. I admire her, not only because she’s an awesome Pulmonologist and research scientist, but mainly because of her fiery personality and the passion she has in trying to understand asthmatics and what makes us tick. And get this….she’s a good listener too! She actually cares enough about what you have to say, that she takes the time to listen. Imagine that.

I think Sally (Dr Wenzel) probably knows more about asthma pathology and the personalities of asthmatics in general, than any non-asthmatic person Ive ever met. It’s absolutely uncanny the things she knows about our disease and how we behave and live. She understands things about asthmatics that they don’t teach you in medical school. Things that you would only know by interviewing thousands of us and immersing yourself in the severe asthma culture. I could spend literally days just talking with her about this subject. We seem to teach each other. I am so lucky that I was given the opportunity to hook up with her. I think we will be friends for a long time.

The accolades don’t stop with Dr Wenzel, there were dozens of other wonderful people involved in this study as well. Here are just a few that Id like to mention by name and position.

Erin———–SARP research coordinator extraordinaire.
Cathrine RN—-Dr Wenzel’s assistant and other right hand
Mat tech——Very cool PFT tech.
Celo tech—–Just one of many super cool people on the bronch team
Trish RN——-A special Nurse. She actually called in on her day off to see how I was doing.
Lindsey RN—–Probably the sweetest Nurse Ive had the pleasure of meeting
Chuck RN——They don’t get better than this “young man”.
Rose RN——-Kind, Kind, Kind!
Michelle RN—-A Super Nurse.

To the above people , Id just like to say Thank You!
In all the years that Ive been in and out of various hospitals and clinics, Ive never come a cross a better team of compassionate and caring medical professionals like those associated with the SARP study, especially the people who took care of me in the Translational Research Care Unit at UMPC after my bronchoscopy. Kudo’s to you guys!

As for the SARP study itself, well, it’s probably the best coordinated and well thought out research experience Ive ever been a part of. With so many ancillary departments involved, like Nuclear Medicine, Pulmonary Functions and Diagnostics , it’s amazing how smooth the whole system runs. Everything is coordinated and timed down to the minute. In the bronchoscopy room, they actually had a group of lab personnel standing by in their running shoes, so that they could literally run the tissue samples over to the lab the moment they they were removed from my body. This method ensures that the samples will be ultra fresh. (I think).

Btw, if you’re not familiar with this part of the Country, the University of Pittsburgh and it’s affiliated medical schools ,hospitals and clinics, is massive in size. More like a small city, I counted at least 4 city blocks of medical buildings 2 and 3 deep. Some the size of mini skyscrapers, all connected through a series of enclosed pedestrian bridges. Pretty neat since it snows here in the winter.

Here’s an abbreviated version of my actual testing itinerary:

Wednesday Afternoon: Completed a ton of questionnaires,did a verbal interview, and did pre&post bronchodilator spirometry, sputum induction attempt.
Thursday: Allergy skin testing (scratch test, not sub q), Full PFT ( lung volumes) pre&post bronchodilator.
Friday: Bronchoscopy prep, ( ie pre-medications and neb treatments), then nasal brushing, then the actual bronchoscopy with brushings and biopsy, but no lavage because of the potential side effects, more pfts
Friday Evening-Saturday,:Monitored in the hospital overnight.

As with any long distance trip , I didn’t eat or sleep very well and I’m totally worn out, but the effort of getting here to Pittsburgh to do this study was totally worth it. Definitively a positive experience and I would gladly return again if asked.

(Matthew, myself and Erin in the PFT lab)

(Chuck and Trish, two of the best nurses in the world)

Look at all the blood they took from me

(And check out this reaction I had to Grass allergen compared to tree allergen,which is the little dot to the left.)

Now for the not so good news….

Because this was the first time Id been bronched since early adulthood, it’s really the first time anyone has ever seen the damage that decades of severe asthma exacerbations had caused. What she saw was lung anatomy that had undergone extensive remodeling. My airways appeared very scarred, stiff and fibrotic in nature…. seems my disease is a little more advanced than previously thought. She actually found it quite amazing that I was still able to function as well as I do, let alone still alive. What was baffling to me, is that she couldn’t find any physical evidence of COPD or emphysemic changes that I often thought I had. Seems I have pure asthma and nothing else. It will be a few more weeks before they’ll have a final report, as they sent bits and pieces of my lung tissue and blood samples to various university labs for analysis

( here’s a photo taken looking down into my left lower lung lobe)

Dr Wenzel recommended that I seriously consider lung transplant somewhere down the road. We all agreed that I’m not even close to that point right now, but that when the time comes, I shouldn’t procrastinate, as the waiting time for new lungs can take 1-2 years (asthmatics are usually put at the bottom of the list.) My one saving grace so far, is that my blood oxygenation is still really good(probably from all the aerobic exercise I do), and I’m still able to exercise, though that probably won’t be the case for very much longer.

Who knows, maybe someday I’ll be able to RUN the Boston marathon … instead of walking it!

Update as of 12-15-2009: Results from the computerized quantitative lung scans, did indeed show significant air trapping.

Ever notice the time stamp on many of my blog entries? I usually compose and publish them in the early morning hours…sometimes way before dawn. You know why? Because I’m usually awake at 3 or 4 in the morning. And why am I up that early? Because Ive usually had a bad night of breathing and have to get out of bed just so I can breath.

I lead a double life. A mild to moderate asthmatic by day and a severe one by night . Starting around 6pm everyday, almost like clockwork, it’s as if someone came along and turned my bad breathing switch to the “on” position. Out of the blue, my peak flows will drop by as much as 1/3 , and as the evening progresses, so will my breathing discomfort. By the time 9 pm rolls around, I’m usually so uncomfortable, that I’ll have to down a little Ativan just to take the edge off. The drug doesn’t do anything for your breathing per se, it works by mellowing you out to the point where you basically don’t give a s**t that you’re short of breath. If the ativan doesn’t cut it , sometimes I’ll call on the big boys for help….the opiates. I hate taking narcotics for my breathing, because while they sometimes help, they also have a lot of side effects and can be very addictive.

I don’t wanna wave any red flags or sound overly dramatic, but there are times, especially during the evening hours, that my breathing gets so uncomfortable, I just want it all to end. I try to remain as calm as possible and do all the things that you’re supposed to do when your dyspnea gets outta control, but most of these stress relieving techniques, rarely work for me when my lungs get extra tight. Instead, I’ll usually go outside and sit on the front porch where there’s sometimes a breeze, and just tough it out the best I can. It’s during times like this , when all I can think of….. is not wanting to suffer with this disease anymore. It changes my personality and puts me in foul angry mood.

So why the huge daytime- to- nighttime swings? At first I thought it might have something to do with the time of day that I take my asthma meds. But thats unlikely, because I divide all of my meds into equal doses throughout the day to ensure more uniform coverage. My doctors thought that maybe I was having some sort of obstructive sleep apnea thing , but my sleep studies all came back totally negative. Then there’s the exercise issue, could too much exercise during the day make me feel like crap at night? Possibly, but again, the findings aren’t consistent. On the weekends when I generally don’t exercise, I still have the same nighttime breathing problems that I do on the days where I do exercise…sometimes even worse.

A lot of people will read this and assume that my asthma is simply not well controlled , and will recommend that I increase my bronchodilator use and/or steroid intake. The problem is, I’m already on maximal dosages of everything! , except for steroids in pill form, which for me, is not an option. My primary care doc recently recommended that I start taking a mild opiate, like vicodin, just before bedtime to see if that would quell my dyspnea enough to catch some sleep. Unfortunately, vicodin wires me.

Whether it’s full on bronchospasm or just air-trapping that brings on this distress, these bouts happen with such regularity now, that I don’t look forward to nice relaxing evenings anymore. In fact, I dread them. And except for an occasional night time stroll to take my mind off it, you’ll never see me out in public after dark.

I found this interesting article in the Chest Journal about this very same phenomena, titled “The Diurnal Rhythm of Asthma“.

OK, We can’t always have cheerful posts. I try my best to poke fun and put a positive spin on all things asthma, but lets face it, this disease sucks and can really dampen your spirits. Next week I have an appt with the Palliative care dept at UCSF, to see if they have any NEW advice to offer me, in dealing with my chronic dyspnea.

In the interest of being a responsible blogger, I must point out, that the use of opiates to treat dyspnea is usually reserved for people with terminal or end stage disease. It’s primary use is to end suffering.  Many pulmonologists would strongly discourage their asthmatic patients from taking such drugs, as they can also dangerously slow your breathing.

Had a great time and a stronger than expected finish at yesterday race. My final race results aren’t in yet due to a technical glitch, but I think I finished in about 3:07 , which is much faster than I anticipated and probably why I’m having problems today.

I felt fine immediately after the race, but as I was driving home, I could feel myself getting increasingly tighter and short of breath. By the time I made it home 2 hours later, my peak flows had fallen from 350 to 190 and I was tight as a drum.
I ended up staying awake all last night taking nebs treatments every hour with only minimal relief. Earlier this morning I bumped up my pred to 60mg, but they haven’t kicked in yet, or I’m not reacting to them

My doctor wants me to go to the hospital, but I’m really not in the mood to be tortured right now. I’m sore enough as it is..I can barely walk. I did however, promise her that I’d go in if things didn’t turn around by later today.

Bottom line, I might have exacerbated myself by over-doing it at yesterdays race. I shouldn’t have tried to racewalk the entire 13 mile distance , but I was feeling pretty good at the time and just couldn’t resist. It could have been that I had an exacerbation brewing and didn’t know it ( happens all the time to me). Exerting myself hard for 3 hours my have pushed me over the edge..Who knows.

I’ll have a proper race report up in a few days ( if I’m not in the hospital). Hope everyone else did well at their respective races!

PS…Check this out…what an amazing runner!

California’s fastest half-marathon lived up to its billing Sunday as American Meb Keflezighi set a new U.S. 20k record and bettered his personal best by 25 seconds winning the Rock ‘n’ Roll Half Marathon in a time of 1:01:00. Keflezighi’s 20k split of 57:52 broke Ryan Hall’s standing 20K record of 57:54 set in 2006.

As I eluded to in my last post, Dr. Wenzel along with the folks at the University of Pittsburgh’s Asthma Institute, have taken an interest in my case and have invited me to participate as a research subject in the Severe Asthma Research Program. The SARP is one of the most comprehensive studies of severe asthmatics ever undertaken. My study is scheduled for the 3rd week in November.

The project I’ll be involved in is titled : Inflammation, Myofibroblasts and Loss of Elastic Recoil in Severe Asthma.The Severe Asthma Research Program ( SARP for short), is a collaborative research effort involving 4 different Universities, each adding their own research specialties to the mix. The basic goal of the SARP is to determine what make “severe” asthma different than the moderate of mild forms of the disease. The information they gain by studying people like me, is added to their already extensive asthma database, which is available to lung researchers worldwide.

It’s an exhaustive study, involving several days of testing which includes; full pulmonary function testing and spirometry, allergy testing, spiral CT imaging, blood, sputum and DNA analysis…etc etc. They’re also going to do a bronchoscopy on me to look around inside my lungs and take tissue samples. The only part of the study I’m not too crazy about, is having to spending a night in the hospital following the bronchoscopy. They do this of course, just to be safe and to make sure that my asthma doesn’t worsened after being bronched.

I’m paying for all of my own travel expenses to Pennsylvania, but in return, the research program will be spending 10′s of thousands of dollars in the name of science to see what makes me tick, which I think is pretty cool. And though I probably wont benefit directly from the research, it gives me great satisfaction knowing I can contribute in someway to developing a better understanding of this awful disease.

I think the study is through invitation only, but if anyone out there with severe asthma is interested in volunteering , and can travel to one of the test sites, I’m sure the researchers would appreciate it. Here’s a link to the consent form , which includes many more details of the study.

PS……Remember this one?

In much the same way that you would keep a diary of your asthma symptoms, I came up with the concept of posting my daily breathing parameters as a way of letting others out there know, (i.e. my doctors, family and fellow asthmatics), on how my lungs are doing on any particular day. I often forget though, that while most chronic lungers know what this stuff means, a lot of people who visit my blog probably don’t.  So, if anyone is interested, here’s a little explanation of what all that junk means…. I hope it’s not too confusing.

There are 4 major components to my daily breathing stats:  a Peak flow measurement , an FEV1 measurement a Breathing Update ( which is basically a subjective description of how I’m breathing on that particular day, and lastly, a section labeled Todays Fitness Activity where I jot down what, if any, exercise I did for that day. (Ive used the above links for general definitions of what Peak Flows and FEV1 measurements are )

Peak Flows : I do my peak flow measurements several times throughout the day on a digital peak flow meter, which also measures the FEV1. Those readings are then stored on a chip and uploaded to a database which can then be used to plot out trends and other useful info. I designed the peak flow meter graphic on my blog to correspond with my actual Green-Yellow-Red breathing zones , the same you would see on a real peak flow meter.

FEV1 : As far as pulmonary function terms go, FEV1 ( which stand for Forced Expiratory Volume in 1 second) is one of the most useful measurements in quantifying the severity of airway obstruction in a person with COPD or asthma. It’s usually expressed as a percent of normal, but can also be expressed as an actual volume. In the example shown in the graphic above, my FEV1 was 35% of predicted ( based on my height weight ,age etc ). The actual exhaled volume measured to come up with this percentage was 1.05 liters. This means, that blowing out as fast as I could, I was only able to exhale 1 liter of air from my lungs in the first one second, or appx 35% of what I should have been able to do if I was healthy. Since my FEV1 hovers in the 30-40% range, my disease severity is considered to be in the severe to very severe category.

Breathing update: Because I am a real person and not a machine, the way I “feel”, doesn’t always jive with what the numbers say I should feel like. Everybody perceives breathing discomfort differently. What I might perceive as mild respiratory distress, you might perceive as major distress, and visa versa. For that reason, Ive included a subjective description of my symptoms… or lack of.

Todays Fitness Activity: Finally, because this is after all… a fitness/asthma blog, I wanted to place to record my physical fitness activity. This is where I usually input what kind of exercise I did ( or did not do ) on a particular day. As far as my fitness and /or racewalking goes, all the miles I walk are represented by the little odometers you see just below the header of the blog. These are not estimates, they are the actual number of miles Ive walked and are taken from my Garmin Forerunner GPS.

OK, I’m starting to get a little frustrated. Ive been doing everything by the book in training for the upcoming marathon in March, but it seems that my body has other plans.

It was an absolutely gorgeous Saturday morning and a perfect day for walking in San Francisco, but once again, a couple hours after finishing the walk ( 13 miles this time), my lungs decided to protest by clamping down really tight and putting me through another evening of hell . Within just 2 hours of completing the 3.5 hour walk, my peaks flows dropped from 350 to 130. It took a full 24 hours of back to back neb treatments and an epi-pen shot just to get me back into my yellow zone. As I write this post my PF is back up to 290 ( which is still 80 below my baseline), and I’m still very SOB.

I hesitate in calling this event “exercise induced” , because generally , exercise induced asthma flare-ups occur during the exercise , not after it. I did feel a little tighter than usual at the beginning of the walk and probably used my inhalers more than the normal for me , but I didn’t feel so short of breath that I had to stop at any point. I was actually having more problems with the muscle pain in my shoulders and neck than with my breathing. In a way , I think Ive become so conditioned to being short of breath when I exert myself for long periods, that I don’t sense the decline in my lung function until it reaches a dangerous level.
This sensory disconnect, if you will, is starting to get really problematic for me. If only there was a way I could more accurately judge how tight I’m getting in advance, perhaps I could prevent some of these flare-ups from progressing . I’ve even considered taking a peak flow meter along on my walks, but I’m not sure how useful the results would be, since my breathing pattern would be affected by the exercise even if I was breathing OK .

It’s no secret to the people who read my blog know that I have a tendency to “over do it” when it come walking, and that sometimes this over zealousness can lead to bouts of hyperinflation and air trapping after the event. But, these most recent post walk flare-ups seem to come out of the blue with symptoms that intensify very rapidly. First I’ll feel a little SOB, then I’ll start wheezing diffusely, and then my PFs will totally bottom out …all within a matter of minutes! Basically a full pledged , bronchospastic, classic text book asthma attack. I don’t like this one bit.

So I guess the big question is, am I gonna have go through this every time I do a long walk from now on ? or were these last two episodes just flukes?
So far, Ive been lucky and have turned around without having to hightail it to the ER , but next time who knows. And if I’m getting this sick after only 13 miles, whats gonna happen after 26 miles? It’s a kind of a scary thought when you consider that my next 26 miler is supposed to take place 6,000 miles from home.

My next scheduled walk is supposed to be 10 miler next weekend, followed a 15 miler the week after. Assuming I’m breathing well enough to walk by then, I think the 15 miler will be the deal breaker as to whether or not I will (or should) walk Rome this year.

Here’s some phone pics from the happier part of the day. (Hard to believe that there was an attack brewing).

Since no one seems to know why Ive been getting so sick, so frequently lately , and since there’s a tendency to blame walking as a trigger,  I decided to do a little experimenting to see if I could find a link between taking long walks, and my breathing flare-ups.

Last Saturday just 4 days after being released from the prison, I went out and repeated the very same 8 mile walk that I thought might have put me behind bars in the first place. Let me first say, I wouldn’t have even attempted a repeat walk so soon after a hospitalization , but I was breathing easy the evening before, and with the steroids were making me so antsy , I decided to go for it. Though I had to walk slower than I would’ve liked (18 min/mile) , my lungs behaved nicely and the walk went relatively well. I felt so good in fact, that I actually ended up walking 9 miles instead of 8. I tried my best not to racewalk, but foolishness got the best of me and I probably did about a dozen or so short sprints. During the 3 hour walk I experienced chest tightness about every other mile , and think I used my inhaler about 8 times( pretty much normal for me for that distance.) The biggest problem I had was muscle fatigue and the tell tale signs of impending calf cramps, not surprising considering that I was on 40 mg of prednisone at the time and had been bed bound just a week earlier. Anyways, I finished the walk feeling strong. I came home, took an ice bath and had only minor breathing problems the rest of the day.

Sunday morning arrives, and my dyspnea level is noticeably worse than 24 hours earlier and it continues to escalate as the day wears on. ( I know somethings not right when I get  SOB just walking around the house.) My peak flows are still pretty good , but my FEV1s start to drift down. By Sunday evening I’m miserable and to make things worse  I couldn’t blame anyone but myself for the way I felt.  After all, I brought it on myself right?

Monday morning rolls around and I’m breathing great again, so I think to myself…  OK, one day of  bad breathing doesn’t sound like a bad trade-off for one good day of walking,  so why not go for it again . That afternoon I did my 5 mile bridge walk.   Monday night I’m still breathing good, and in fact,  felt better after the walk than before. Tuesday morning, a repeat of Sunday…..I can’t believe it.  I do a walk , and 24 hours later…I can’t breath again!  This is just plain weird.  This time however, the SOB spills over into Wednesday, and by that evening my dypnea level goes through the roof.    Wednesday night was so bad, I actually thought I was going to suffocate and that would be it.   Not only did I feel hyper- inflated , but I could feel my airways tightening up ( bronchospasm) . I was so SOB that I even had a hard time using my nebulizer. I couldn’t take a deep enough breath to get the meds in.  Now,  I’m not an anxious person in general, but I can tell you , that the anxiety of not being able to breath was making things worse. Just the extra brainpower that you consume when you’re anxious, can make you more SOB.   Afraid of falling over the edge and having to  911ing it,  I pulled out every trick in the book to relax my lungs and my brain !   By doing  diaphragmatic breathing exercises, purse-lip breathing, anti anxiety meds, opiates and neb treatments every hour,  I made it though the night ( sitting up).   That was probably a dare devilish move on my part, but at least I’m home right now and not in the hospital.

Thursday morning , exhausted , and still dyspneic from the night before,  I did the unthinkable, ( actually two unthinkables).   First , I bumped up my steroids back to 40 mg , then I  went out for a 5 mile walk!    I figured what the heck,  I’m so SOB anyway, how much worse could it get.  I complete the walk in 2 hours  in 86 degree “Spare The Air Day” weather,  and surprisingly , I was breathing BETTER after that walk…. than    before I left!

Its now Friday morning and I’m still breathing fairly well.  My PF’s are back in the green zone and my FEV1 is 39%.   So whats up?   I do a walk when I’m breathing well and I get sick 24 later.  But then I walk when I’m sick and 24 hours later I’m breathing well again. I must be wired backwards or something.  Maybe bumping up of the steroids had something to do with , but it usually takes at least a day for the extra steroids to take effect.

After a week of good and bad days, the  question remains ..is my walking causing my flare-ups?  Maybe it’s something in the environment?  Maybe  its just me?   Is there some kind of physical stress that I don’t perceive when Im walking that causes a gradual worsening of my symptoms.   Was it foolish to walk when I was already way too SOB to begin with?   That last question is debatable because many so-called experts will tell you to exercise even when you’re SOB. ( in all fairness , that last statement refers primarily to COPDers and not so much to COPD/ asthmatics) .

The experiment was inconclusive.   Because of the delayed response from the time I exercised , till the time I develop symptoms,  I still cannot say with 100% certainty,  that  walking in and of itself, is making me sick.  The search for the elusive trigger continues…  but until its found, I will continue to walk my ass off.

As part of the” Shortness of breath self-Management” research study that I’m involved in over at UCSF, every 3 months I have to go into the lab where they check my PFTs and then have me do a series of physical fitness exercises. Sometimes they have me get on the treadmill and walk uphill until I nearly puke from exhaustion. Other times they’ll have me do easier things like, doing as many arm lifts as I can in one minute, while holding a broom stick in my hands….that sort of thing .

Another exercise test I have to do at every follow up visit, is called a “6 minute walking test”. (I don’t think they knew I was a marathon walker)
Anyway ,this is kind of a standard test they administer to people with lung disease , to see how short of breath they become when they exert themselves. Basically , you walk as far as you can in 6 minutes , and then they check your vital signs, your oxygen level and then ask you to rate how short of breath you felt during and after the walk ( known as the BORG scale)

Well , having just been discharged from the hospital 5 days prior to this research visit and being all jacked up on the roids , I thought it might be fun to racewalk the test… so that’s exactly what I did ….. and I caught a small snipit on video!

BTW…To complete the 6 minutes of walking , I had to walk up and down that hallway 30 times ! I would have done even better if didn’t have to stop and turn around 30 times..

PS.. If you’re reading this post after Aug 2008, it turns out that among those tested who had similar lung function, I ended up walking farther than anyone on record at UCSF. On average I walked 2400 feet ( almost a half mile) in six minutes. Not too shabby for a person with an FEV1 of 39%

Last weeks Pulmonary Functions testcompared to
Septembers Pulmonary Functions test

I know most of my friends and readers aren’t lung specialists , but all the numbers you see in the far right column should read anywhere from 80- 100 . As you can see ,my numbers are a lot lower than that , and have dropped even more since September. I’m now down in the 30% range for the FEV1 and below 50% for the FEV1/FVC . Both these numbers are strong indicators for the degree of severity and the mortality rate of this disease. They are more in line with what you would expect to see in a person severe emphysema, rather than a relatively young marathon walker.
Oddly enough , despite these rather depressing PFT results, I just completed a solid week of green days and managed to get in some spectacular walking workouts as well. Last friday morning for example ( before the car crash incident), I racewalked farther then I ever have in a single segment….350 yards to be exact . That’s almost a quarter of a mile, and nearly twice as far as I was able to walk just a month ago. So once again, my doctors are amazed and somewhat baffled on how I manage to function so well– on so little.

Later this week I’m supposed to receive my first Xolair injection . I’m going to get one injection per month for the next 6 months ,then we’ll re-evaluate to see it it’s helping or if it’s just a waste of money.

I’m also supposed to have a 24 hour esophageal pH study where they insert a catheter through your nose into your stomach and leave it there for 24 hours. ( Sounds like fun!) They hook you to this portable monitor that records how much acid your stomach produces throughout the day. I’ve never had any heartburn issues , but apparently a high percentage of chronic asthmatics have gastric esophageal reflux disease ( GERD), and never have any stomach symptoms. It’s believed that this “silent reflux” may be one of the triggers for asthma, especially for people have who are awakened at night with breathing problems.

For you asthmatics and non-asthmatics alike, make sure you get your flu-shot. It’s not too late.!

That’s it for now.

I usually don’t post about my hospital experiences because its not a subject I like to re-live. Its an unwanted , terrifying , but necessary, part of my life. When it happens , I just try to get through it and then I try to blank it out . Its the only way I know how to cope with it.

Since this BLOG has as much to do with my asthma as it does with my walking, I think its important to include what a typical prison stay for me is like. I think a lot of my fellow asthmatic and CF readers can probably relate. So , here goes….

Wednesday of last week, I noticed I was having more hay fever symptoms than usual. In addition, I was having way too many fluctuations in my peak flows.
It had been quite warm and windy that week and I’m pretty sure the air was full of pollens as my eyes were burning. As a precaution, I started taking Claritin and it helped a little ,but by that following Saturday my asthma symptoms were also starting to act up. I was definably experiencing a downward trend over the previous week.

On Sunday morning , Mothers Day, I did a stupid thing. Despite having a post treatment peak flow of 350, I took a 5 mile walk anyway. I guess I was just trying to be defiant and see just how far I could stress my lungs . I think I just got pissed off at the fact that my lungs were constantly interfering with my life.. I mean everyone was walking that day. Heck, Dave was in spain walking 30 miles! The least I could do was a measly 5 miler. Anyway, the entire walk was brutal and totally pointless , I couldn’t racewalk any of it . By the time I made it home ,I was completely exhausted and starting to get “that feeling” — the feeling I get when my asthma gets out of control . For the rest of the day, I felt like crap.
Later that night I started myself on 80 mg of prednisone ….always a last resort for me because it always signals the beginning of a spiraling decent down the asthma toilet.

By Monday morning the prednisone had not kicked in so , in a last ditch attempt to bring my breathing under control , I increased the Albuterol treatments to every 2 hours and just propped myself up in bed and tried to conserve energy. I kept this routine up for nearly 16 hours ,but I was starting to feel fatigued and sleepy from the work of breathing. It was at that point that I knew I had to go to the hospital or risk possibly dying at home. Believe me, I almost chose not to go in. If it weren’t for the people who cared about me, I would have just as likely stayed at home and let nature takes it course.

At 3 am on Tues morning my partner took me to the ER. From the triage desk they whisked me immediately into one of the observation rooms, a room with windows on all 4 sides and a TV camera pointed right at the bed. Then they began to do their thing. The first thing they always do is slap some oxygen on and then start probing for veins to fill with IVs. They wire me up from head to toe and plug me in. Then they took some xrays and a slew of blood tests. After everything was in place, they started me on the usual 3 single neb treatments back to back to see if that would break the attack, but knowing my history , they decided to stop those and go directly to the hardcore continuous neb of albuterol at 15 mg per hour delivered with “Heliox”(a mixture of helium and oxygen which tends to get the medicine down deeper in the lungs in severe asthmatics.)
By the way, 15 mg per hour of Albuterol is equiv to 6 neb treatments per hour CONTINUOUSLY, so it tend to to make your heart go really fast.This is just the first step in a series of long wait and sees.

So, with the nebulizer mask strapped to my face, I just lay there hour after long hour and do the best I can. I usually try to focus on an object in the room or eaves drop on the conversations of the nursing staff. If you’re lucky, occasionally someone will come into the room and ask ask how your doing. Other than that, it gets very lonely in that observation room.

Well, 7 hours had already gone by on the continuous neb and my peak flows were still dropping ( now in the mid 200s). So, they packed me up, transported me to the Intensive care unit and placed me on the Bipap machine where I stayed for the next 36 hours.They took periodic blood gas samples ( ABGs) to make sure I wasn’t progressing into full blown respiratory failure.

Mind you an intensive care unit is not really conducive to healing .Its an incredibly noisy environment with alarms constantly going off and people being paged on the overhead. You have people milling around, technicians poking and prodding you, and an endless parade of interns and residents asking you the same questions over and over again, ” don’t try to speak–just nod your head for yes or no”

In case you don’t know what Bipap is, its a machine ( or actually a type of therapy ) that helps push air into your lungs with each breath you take . Its basically does the same thing as a ventilator , but its non -invasive, as its attached to you via a mask that they strap to your face.( instead of a tube in your throat) The theory is that it can reduce the work of breathing by doing most of the work for you. By reducing the work of breathing , you can hopefully prevent respiratory failure. But, it doesn’t always work the way its supposed to . Sometimes, if you fight it or work against it, or if its not set up just perfectly by the therapist, it can actually make you more tired. It can also be very uncomfortable and once you have the mask strapped on , its very difficult to communicate .But still, its better than the alternative, which is having a tube placed in your windpipe, being paralyzed, sedated and then artificially ventilated on a machine until you improve.

By now it had been 2 full days since this exacerbation started and it appeared that I was strong enough to avoid the breathing tube. I was holding my own and my blood gases were improving.
That evening they finally took me off the bipap and the continuous nebs and transferred me to the regular medical floor.

I did fine for a while, then later that evening , out of the blue ,I suddenly became extremely short of breath, my peak flows dropped below 100 and my O2 saturation dropped into the 70s. Well, I had all the staff in a panic so they immediately had me transferred back to the monitored unit.

I spent the next 12 hours sharing a room in this “so-called” monitored unit , with a patent who required 24 hour assistance. The lights were on in the room all night , the TV was blasting and there was almost a party atmosphere by the some of the hospital staff just outside the door.
I was so sick at this point, I just wanted to scream , but didn’t have the strength or the lung power. Actually, I just wanted to die. Its a feeling I can’t describe. You can’t sleep because you cant breath . They wont give you anything to help you sleep because they’re afraid that you’ll stop breathing. Your heart is pounding from all the medications they’re pumping into you, and your emotions are wide open . You cant even cry because your just too short breath.
Finally I managed to call Douglas on my cell phone and he was able to contact the head nurse to try to get me moved to a different room.

The next morning they finally transferred me to a private room where I received the best care of my stay. The room was quiet , the staff was excellent and always came right away when I needed them. I was breathing better, my peak flow was up to 400, my oxygen level was almost normal. Douglas made copies of the emails that friends and readers had sent me , I cant tell you how good that made me feel. Finally, I was relaxed enough ( probably through sheer exhaustion) that I was able to sleep a little.
The following morning, I convinced the attending physician that I could take care of myself at home and they discharged me.

I guess by comparison this was a modestly short and easy stay. Ive had some that lasted nearly 3 weeks. But, as
I get older, even the shorter stays have a lingering effect on me. It will take me weeks for the all the drugs to leave my system and for the bothersome effects of the steroids to subside , ie ; the acne, the crepe paper skin, the insomnia, the manic mood swings , the GI problems, the muscle cramps, feeling like your head is in a vise……. strange shit like that.
With a little luck and lot of rest, this regularly occurring nightmare will be over and totally forgotten until the next signs of “that feeling” start to surface again.

There is one bright spot to all this, I still have my walking to look forward to. Right now it means everything to me. I’m glad I’m able to do it as well a I can. It takes me as far as away from my asthma as I can get.

Another side effect of prednisone, is uncontrolled babbling and blogging.

My latest spirometry after taking Albuterol .
This is why fitness walking and/or racewalking is such a big deal for me.
The good news is that these test results haven’t worsened since the last one done in January.