The Happy Hospitalist must have read the last post I published regarding dyspnea and opiates, because he just wrote an article about it.

I don’t know how many physicians actually read my stuff, but I’m totally flattered that someone would find one of my stories interesting enough, for them to expand on and write their own post about it.

Be sure to check out the Happy Hospitalists blog.

Great stuff!!
And if you were brought here by way of the HappyHospitalist, thanks for stopping by!

No longer just reserved for severe pain control or to relieve end of life suffering, today a growing number of people with severe lung disease are using opiate medications to help quell their severe dyspnea . Well, you can now add to that list, a certain quirky little asthmatic marathon walker, by the name of Stephen.

The decision to write a post about the use of opiates to treat my breathlessness, was a tough one for me. As a responsible blogger, I always worry about the possibility of sending the wrong message, especially when it comes to the use of certain treatments and/or medications. Let me be clear in stating, that I don’t advocate the use of opiates for asthmatics in general… the risk of respiratory depression is just too high. There are however, a small percentage of people who’s obstructive lung disease is so advanced, that nothing else works in quelling their breathlessness. Though opiates should only be used as a last resort in treating dyspnea, they do offer a degree of welcome symptom relief for people like me, so I think their use is important to talk about.

For the past year Ive taking short acting opiates ( ie hydrocodone (Vicodin)and sometimes Dilaudid or Fentanyl) on an as-needed basis for bouts of prolonged moderate level breathlessness. When I say breathlessness, I’m not referring to the sudden shortness of breath that develops from acute bronchospasm or chest tightening you experience during an asthma flare. Rather, I’m talking about the type of breathlessness that’s usually associated with air-trapping and chronically low lung function. There’s a huge difference, and thankfully ,most asthmatics will never experience this second category.

Starting next month however, they (my palliative care docs), wanna put me on a 30 day trial of continuous low dose methadone (Yes, the heroin withdrawal drug). They believe, that having a constant level of opiates in the bloodstream, is more effective in relieving dyspnea, and is better tolerated, than the shorter acting compounded drugs like vicodin (vicodin has tylenol in it). My biggest concern about taking methadone or any of these morphine-like drugs, is how they will effect my ability to exercise. The experts claim that it might actually improve my exercise tolerance, because I wont “feel” as breathless. We’ll see about that.

Although physicians want to do all they can to help relieve dyspnea in their patients, fear of respiratory depression and criticism by colleagues has discouraged them from using opiates, even in treating those with end-stage disease. Thankfully, that attitude is slowly beginning to change. Opioids are very effective in relieving dyspnea, although the exact mechanism is not understood. Contrary to common belief, this effect does not result through inhibition of respiratory drive. Relief from the “work of breathing” is a function of steady-state opioid levels, much like steady-state opioid levels relieve pain. Inhibition of respiratory drive results primarily from rising opioid serum levels. Studies have demonstrated significant relief of dyspnea from opioids without significant effects on ventilation or pCO2 levels in common therapeutic doses.

For those of you who aren’t quite familiar the terminology, “dyspnea” is the subjective sensation of breathlessness or difficulty in breathing. It’s basically the experience of shortness of breath. Much like physical pain, we all perceive breathing discomfort differently. The way you perceive shortness of breath is probably different than the way I perceive it, and visa versa. Some of us have a higher tolerance for respiratory discomfort , and some lower. A million things can cause dyspnea, including chemical ,neurological and psychological abnormalities, but it’s usually a result of severe lung or heart problems. Dyspnea can me mild or severe. It can be acute ( abrupt ) or chronic ( long standing). Dyspnea is the main cause of suffering in lung disease patients, and is one of the top reasons why people seek emergency room care. Whatever the cause, dyspnea can be difficult to treat and can make your life miserable.

Why did they put ME on opiates in the first place? After all, I’m just a bad asthmatic , right?
Well, basically because we’ve tried everything else.
My lungs are so messed up , that even when my asthma is not flaring, I’m still short of breath. In fact, I’m pretty much short of breath to some degree … all the time. Because I’ve been this way for so long, for the most part it doesn’t bother me that much ….I’m used to it. But, there are other times when my dyspnea , for whatever reason, gets so out of control and so intense, that it becomes overwhelming and unbearable. Left unchecked, the resulting stress, anxiety and increased work of breathing that can emerge from these bouts, can actually fuel a full blown asthma exacerbation, leading to an unwanted date with an endotracheal tube. I actively practice all the standard treatment strategies, including daily exercise and stress reduction therapy to better manage my dyspnea. And while these more traditional therapies have probably helped me live longer and cope better with my disease, they haven’t alleviated much of the actual suffering. It’s for this reason, and under the guidance of a palliative care specialist, that I choose to take opiate medications and sometimes ativan to manage my dyspnea on a regular basis now.

Well, I think I got quite a bit accomplished in the week I spend trying to clean up my blog. For the most part, I’m pretty happy with the results. But what a pain in the butt!

I must have done over a thousand individual edits just to get things to look and function they I want….and I still didn’t finish it all. I did manage however, to create some custom templates for my tabbed pages, which I think came out pretty good. Much easier to read without all the sidebar clutter.

And speaking of makeovers, a special thank you to Kerri for spicing up my Youtube channel.

She created this fun background for me

I noticed she redecorated her own blog header as well . We breathless folks are so talented! ( well, at least some of us are)

It’s amazing how bloated a website can become after 5 years of continuous blogging. I try my best to devote at least an hour a day to writing and maintaining my blog, but other than changing the outward appearance of the blog a few times, I really haven’t had a chance to straighten up the clutter that has built up on the inside . Heck…I have drafts and incompleted posts dating back more than 3 years now!

Anyways, I’m going to take advantage of what is normally a slow blogging month for me (and a bad breathing one too), and take some time off to do a thorough cleaning of this site. Among other things, I’m gonna work on re-arranging my category hierarchies so that searches are more effective. I’m also going to do some extensive editing,updating and customization of my “About me” pages. I’m gonna weed out dead links and images, scan for typos, toss outdated drafts and pluggins, and basically just thin things out so I can focus more on content. I might even test out some new features Ive been fiddling with. The only thing I’m not going to bother with , is resizing all the embedded slide shows from earlier posts.

I should be blogging again in a few days. Hope everyone else is having nice holiday season! Breath easy!

Before I begin, let me preface this post by saying that I haven’t made up my mind as to whether I would even want lung transplant surgery, should it ever get to that point. I wanted however, to see what some of my Pulmonologists views were on this subject, and to get a feel for what kind of support I would have in whatever treatment option I pursued.

So last week I got together with 3 of my UCSF Pulmonologists to discuss my SARP evaluation and Dr Wenzel’s recommendation that I consider lung transplant surgery in the future. I began the conversation by bringing up all the wonderful things that the SARP study was accomplishing, which seemed to put a smile on a everyone’s face. But, the minute I mentioned the “T” word, you could sense the tension in the air. You might even say, that tempers were starting to flare…including mine.

No Way! … are you even close to being a candidate for lung transplant surgery, was their general response. After all, you can walk marathons! ( yeah…like I didn’t see that one coming )
Even if my FEV1s were to totally bottom out and I was at the point where I was needing supplemental oxygen 24 hours a day, if I were still able to walk ….even just a 10K, I would not be eligible for new lungs. It just wouldn’t look right.

They went on to reassure me however, that even though I have extremely severe asthma, that my PFTs have been relatively stable over the past 4 years and that there’s no scientific evidence to suggest that people with severe disease plateau at a certain level and then suddenly experience a rapid deterioration . (I’m not an MD or a scientist, but I don’t totally agree with that last statement.)

Beyond whether or not I would meet the actual criteria for acceptance into a transplant program, I think their main concern, was that I somehow didn’t understand all the implications of having this life-altering , can’t- undo-it , type of procedure done . In their view , I would just be exchanging one set of problems for another. Though they agree that I would probably be breathing a lot easier after transplantation, there’s also a good chance that my life would be cut short. This is why they prefer you to be on deaths door before considering such radical treatment. Tissue rejection is still a huge problem in lung transplant recipients, as they haven’t quite figured a way to administer just the right amount of medication to prevent rejection, without killing the patient in the process.

They claim, that while there are a few miracle stories out there of people thriving and living long lives after receiving new lungs, the fact is, the vast majority of lung transplant recipients are not so lucky. The survival rate is still very dismal and pretty much a crap shoot. Only 2 out of 5 people will survive 5 years after transplant, and many of the people who do survive, are plagued with frequent life threatening infections due to weakened immune systems. You have to be on potent anti-rejection drugs for the rest of your life and will need constant medical monitoring. I’m not sure I like the idea of having to be around hospitals, anymore often than I am now.

OK, so I see their point about this being an option of last resort, and I appreciate all the concern . I don’t agree with all of it, but I understand it. I think the real reason I got the response I got, is because I have asthma as a diagnosis. There have only been a few asthmatics that have ever been transplanted. The fact that I don’t require supplemental oxygen ( yet) is a huge factor too. In every other way, my lungs are trashed, but Im able to oxygenate.

I guess I should be relieved that I’m not considered sick enough to warrant transplant surgery, but at the same time, when one of the most respected asthma doctors in the world, tells you that you should seriously consider it, I think it’s worth learning as much as you can about it , so that you’re better prepared if the time should come. And while my current feeling is that I wouldn’t want the surgery done, who knows how I’ll feel about it a year from now, or if I get to the point where I’m struggling for every breath.

That bit about “being able to walk marathons” really got me to thinking about just how misunderstood I am and how misinformed people can be. It felt as those they were using my incredible physical fitness achievements, against me. For some reason there’s this crazy notion, even among lung doctors, that people with severe lung disease are supposed to fit a certain mold.
My response to that would be… why would I even want to.

They agreed that we should revisit this issue again in 6 months. Maybe things will be different then.

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.