You might recall that in the summer of 2008, I made the decision of NOT renewing my RCP license when it became due. I did so, because for all practical purposes, I didn’t ( and still don’t) plan on returning to active employment in the Respiratory care field….or for that matter….any field. At the time, I didn’t see the sense of continuing to pay bi-annual license fees if I wasn’t going to continue working as an RT. I had actually kept my license and CEU’s current for 2 years after I stopped working, because I didn’t want think of myself as a non RT. I basically kept it active for security blanket reasons.

Well, now I’m faced with that decision again, except this time, whatever I decide ….will be permanent! I have less than 4 months to either pay the late fees totaling $460.00 and renew my license, OR let the time lapse and loose my license permanently. The only other option I have, would be to voluntarily retire my license. Either way, the action would be permanent. Of course, if I had no intention of working again, it would probably look better on paper if I just retired my license.

But, here’s the deal, if I retire my license or let it lapse out, and then sometime down the road I decide I want to practice RT again, I would have to re-apply for a new license all over again from scratch. That means proving that I graduated from an accredited RT school and taking all the entrance exams over again, getting a background check and fingerprinted. Im not sure Id want to go through all that again. And how on earth would I be healthy enough to work full time again? Well, there’s a chance ( albeit very small) ,that I might actually get a new set of lungs sometime in the future ( ie transplant). If that were to occur before I reach the age of 65, I might be healthy enough to work full time again, in which case, my RCP license would come in pretty handy. But again, that’s a very small if.

* For all you non-RTs out there, it’s important to note that while I don’t have an active license to practice Respiratory care in the State of California, I’m still Registered with the NBRC as an RRT ( Registered Respiratory Therapist.) Those credentials have nothing to do with state licensure and can never be taken away from me.

So, what would you do if you were in my shoes?

(My RCP and NBRC Credentials)

This is my very first license to practice Respiratory care. In 1985, the State of California became one of the first states in the USA to required that all Respiratory Care Practitioners be licensed in order to legally practice.

Here’s something funny; I got my first job as an RT in 1977. My salary at that time was $4.62 per hr. That same position, as of 6/2009, pays 10 times that amount.

Dear fellow asthmatics(especially to the guys out there), Does this ever happened to you? Happens to me all the time.

The phone rings, I answer hello. The person on the line says..Hello…Mrs Gaudet ?… may I speak with Stephen please?.

Or here’s another; The other day I get a call from the NIH regarding some clinical trials that they were doing. The first thing out of the lady’s mouth was ..Is this your normal voice ? I can tell you’re the person I want to talk to, just by your voice ….. You have what we call… “inhaler voice” . Geeze…. I didn’t know there was a scientific name for it!

One of my favorites though, is this comment that a Youtube viewer left after watching a clip of me and my cat Winston…
“Holy? shit. I saw the 3rd and then the 2nd Winston videos. When I saw the first, I saw that you were a man. I never saw that one coming…btw nice cat!”

And it’s not just during telephone conversations or comments that people leave on my videos, this happens to me CONSTANTLY!,     especially when I meet people for the very first time. It’s always the same response. Either they will look at me kinda funny or they’ll just flat-out ask….”Is this your regular voice?” Every single one of my doctors asked me the very same question when I first met them, and every time I have to go to the ER for treatment and meet a new set of doctors, guess what?………
Yes, and even Dr Wenzel, bless her heart, asked me the voice question.

OK….so for the record,  YES…this is my normal voice! I know it’s sounds kinda raspy and hi pitched, but I promise you that I’m really a guy and this is my real voice. I’m pretty sure it’s due from 50 years of sucking on inhalers. My vocal cords have probably remodeled…just like my lungs.

Hmmmm. I think I’m gonna add this to my “Silly Asthma Questions” list.

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 spasming or narrowing? [Sally]  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? [Sally] 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? [Sally] 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? [Sally]  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? [Sally] 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.[Sally] 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? [Sally] 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 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 Ive ever had a bronchoscopy, it’s really the first time anyone has ever gotten a close-up look at the inside of my lungs. And what Dr Wenzel saw down there, wasn’t good. 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 much 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 air-trapping or any of the other tell tale signs of COPD or emphysema that I often thought I had. 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, but suffice it to say, my long term survival isn’t looking too rosy right now.

They recommended that I seriously consider lung transplant surgery 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 up to 3 years (asthmatics are usually put at the bottom of the list.) My one saving grace so far, is that my blood oxygenation is still relatively 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 someday… instead of walking it!

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

The field of Asthma Research desperately needs human test subjects for a variety of invasive and non-invasive clinical studies. If you’re an asthmatic, or if asthma effects your life in someway, you should really consider getting involved. We need to put and end to the suffering that this disease causes.

So anyway, later today I’m off to Pittsburgh, Pennsylvania for the SARP study. While I’m there, I’ll finally get to meet the famous Dr. Sally Wenzel . She’s done so much to advance the knowledge of the severe forms of this disease. I admire her and feel like I already know her.

My plane leaves at 11 pm tonight, and with a connection in Chicago, doesn’t arrive in Pittsburgh until 9 am tomorrow morning. I hate overnight flights, but that’s cool this time, because it’s one less night I would have had to shell out for a hotel room. In that regard, I was able to find a hotel just 2 blocks from the University of Pittsburgh’s Asthma Institute, where they’re doing most of the research procedures.

I’m scheduled for 3 days of testing, beginning with spirometry , CT scans and sputum collection on Wednesday afternoon. Thursday will be a day of pulmonary function tests and blood work, and then on Friday morning, Dr Wenzel is going to take look inside my lungs (bronchoscopy) and take some lung tissue samples for analysis. As a precautionary measure, they want to monitor me overnight in the hospital following the bronchoscopy procedure. If there are no complications(knock on wood), I’ll complete the study late Saturday morning, just in time to catch my afternoon flight back to San Francisco.

Not sure if I’ll have much time in between appointments to check out the sights, but I’d definitely like to try some of the local food joints. Pittsburgh is supposed to be home to some of the worlds finest fast food eateries. Primanti Bros and Original Hot Dogs, just to name a few. I saw both of these places on the travel channel a few years ago. The food looks awesome. Not exactly healthy cuisine, but it sure looks really tasty.

Ive decided not to haul my computer along on this trip, so I unless I have access to one while Im there and feel like blogging, I probably won’t be updating again until sometime next week.

Behave yourselves and try not to miss me too much.

……………….Try saying that 5 times really fast.

Before reading this post, you might find it useful to read the first two of paragraphs in the “My Asthma” section of my blog. This will give you a little background as to why my dyspnea (shortness of breath) is so difficult to manage. Along those same lines, Rick over at the Respiratory Therapy Cave, does a great job of explaining how asthma can sometimes turn into COPD.

On Thursday I had my first appointment at this new service called “Symptom Management” . The clinic is basically an extension of the Palliative Care dept over at the UCSF Mt Zion campus. Rather than end-of-life care, this particular specialty focuses on treating the symptoms that cause suffering, i.e. breathing problems, pain, fatigue, stress, etc, regardless of the prognosis. I was referred there for my chronic and worsening dyspnea. Don’t get me wrong, I’m not giving up on traditional asthma care, but at the same time, I don’t want to fool myself. I know that this disease will eventually kill me . In the meantime I wanna stay, not only as physically active as possible, but ALSO as comfortable as possible. Which for me means breathing easier.

Most of my dyspnea (the sensation of breathlessness), stems from a condition called air-trapping. Pretty much the hallmark of obstructive lung diseases ( COPD, emyphysema and sometimes severe asthma), air- trapping occurs when airway obstruction due to chronic inflammation and/or loss of elasticity, causes air to become trapped in the lungs during exhalation. In other words…. I can’t exhale completely!
For an example of what air-trapping feels like. Take a full normal breath in, then try to exhale it out through a tiny straw (something like a coffee stirrer). See how long you can keep that up. You now have a sense of just how hard the work of breathing becomes for someone who has air-trapping . This is what my breathing feels like on a daily basis.

Things get even worse when my airways start getting twitchy, because then, in addition to the air-trapping symptoms, I also have to deal with my smaller airways closing up (bronchospasm). Having both of these 2 distinct symptoms at the same time becomes very troublesome, because it’s often difficult to tell which is causing which. Dyspnea associated with air trapping can most definitely make you feel uncomfortable, but the dyspnea that is caused by sudden or severe bronchospasm, can be potentially fatal.
In any case, the bottom line , is that dyspnea causes a lot of suffering and can make your life absolutely miserable.

For the past few years Ive been involved in several pulmonary rehab classes and research studies where they show you different techniques to help control your dyspnea. Some of what they teach helps, but most of these classes are geared towards people with COPD and Emphysema where having reactive airways ( ie bronchospasm) is usually not an issue. There are very few resources out there specifically designed to help chronic severe asthmatics deal with the complexities of the disease and type of breathlessness they experience. The only thing that’s really helped me so far, is a combination of relaxation techniques, anti-anxiety meds ( ativan) and mild opiates.

So anyways back to Thursday’s appt,

The symptom management doctor (who was really cool by the way) and I, both agreed that while my disease is pretty severe, that my quality of life is still quite good and that I should continue on with my current asthma action plan…even if it calls for future intubations! As far as my dyspnea goes, he recommended that I increase my vicodin dose to at least 4 times a day for better nighttime coverage. If that doesn’t work, he wants to try me on methadone ( yup, the drug heroin addicts use when detoxing ). I told him I would think about it, but I also made it clear that I didn’t want to take any medications that would effect my ability to exercise.
We also discussed “advance directives” and what would I want done ( or not done) , if I became critically ill and not able to communicate. For me this is mostly as issue of how long I would want to be on a ventilator, if there was no hope of recovering.

Im glad I went to this appointment. I think I came away a little less apprehensive about the whole issue of palliative care and what it implies. Anything that helps reduce the suffering that goes along with chronic disease ,is certainly worth considering as a treatment option.

In part two, I’ll talk about the impact that dyspnea and air-trapping have on my ability to exercise. For me, that’s the real dilemma.