All this buzz about inhalers ,nebulizers and hospitals , got me to thinking of various situations, in which Ive been involved.

Not always practicing what I preach.
As I’m sure Rick would agree, It’s a not always easy being a Respiratory Therapist/Asthmatic. Many times, what you’ve learned as a health professional is at odds with how you deal with your own disease. I cant tell you how many times Ive gone to the ER to instruct a patient on the “correct” way to use their inhaler and spacer, only to turn around a few minutes later and take a few puffs off my own inhaler with complete disregard for technique… or even a spacer for that matter!

RT/Patient
Imagine, you have a really bad asthma flare-up, you’re admitted to the hospital, and first words you hear out of peoples mouths is….” So I heard you’re an RT! ” or ” So , is this why you decided to become an RT?”
I don’t know why, but when I’m the patient, I prefer that the medical staff taking care of me not know that I’m an RT. It just seems to make things more awkward. I think mainly because you can sometimes sense that the people taking care of you, are a little uneasy or let’s say.. not too thrilled about the idea of taking care of an RT/patient.

On the plus side though, I’m sure it keeps the staff on their toes. You can pretty much bet that everything is going to be done by the book. For example: With every single breathing treatment, you’re also going to get; pre & post breath sounds (listening to your lungs with a stethoscope before and after breathing treatments) pre & post oximetry (checking you oxygen saturations) , pre & post PFs, (checking your PFs before and after your treatments)… etc etc. Many times Ill try to put the RT’s at ease by telling them… its OK ..You don’t have to hover over me..my breath sounds haven’t changed in the last hour. Just give me the neb. Go ahead and do another patient while I do my own neb ( a big no-no by the way).

But you know what the most awkward moment usually is? It’s when they need to do an ABG ( arterial blood gas) on you. Even if they don’t show it, you can tell they’re sweating bullets hoping like crazy to hit that artery on the first poke.Nothing more frustrating for an RT, than missing a bounding pulse ( been there–done that).
Come to think of it, the only time I’m treated like a “regular” patient is when I’m intubated (you can’t really talk back). They’re going to suction you no matter what. And when it’s time for you to breath on you’re own ( cpap trial or t-piece) ..they’re ruthless.
Of course when you’ve been admitted to the hospital as many times as I have, its almost impossible for people not to know……its all over my medical records.

MDI Protocol
The last time I was hospitalized, they put me on a continuous Albuterol neb at 20mg/hr. (In case you don’t know, that’s the equivalent of 8 Albuterol treatments PER HOUR! .) And to make the medication work even better, they nebulized it with Heliox . As is pretty typical, they kept me on the continuous neb for about 96 hours. That’s’ around 736 Albuterol treatments in just a 4 day period ! Though my potassium always drops big time, amazingly, my heart rate never gets that high, maybe to about 120-130…(but that’s another blog post).

The point is, when they finally transferred me out of ICU over to the step-down unit, the hospital’s respiratory care protocol kicked in and I was switched from a continuous neb ( which was now at 10mg/hr ), to an Albuterol inhaler of 2-4 puffs Q6 prn. That’s a pretty drastic cut. Needless to say, it didn’t work and a couple hours later I re-flared almost ended up back in the unit.
They ended up putting me back on nebulized treatments , this time Q2 ( every 2 hrs) as needed , which I remained on until discharge. Which brings me to another point. One of things RT’s hate the most (though they may not admit it), is having to give neb treatments to a patient every 2 hours…especially at night. Knowing this, I try to tough it out for as long as I could so dont have to bother them as often.

In the good old days, if they trusted you, and you were physically able, they would leave extra meds at your bedside and let you do your own neb treatments.

No major major complaints for the time being, but as always on the asthma front, there’s some good news and then there’s some not so good news. Here’s the latest:

Ive been in my “green” breathing zone pretty much steadily now for the last 6-7 weeks and Ive been off the prednisone for almost 5 weeks! That’s a very good thing, because it means Ive been able to exercise more. And when I’m able to exercise more, everything in my life seems to go better.

On the not so good side of things, Ive been requiring more frequent nebulized Albuterol treatments. It used to be that on a good day, I could go 6 to 8 hours in between breathing treatments….now, it’s more like 3 or 4 hours! It used to also be, that when I’d wake up in the middle of the night short of breath, I could take a couple hits off the inhaler and get enough relief to fall back a sleep. Now when I wake up, I’m so SOB that the inhaler just doesn’t cut it . Instead, I have to get out of bed and take a neb treatment.

I don’t think this increased need for bronchodilators can be totally blamed on stopping the prednisone, as this was happening even when I was taking prednisone on a daily basis. More than likely, there are several factors including; a more acute perception of respiratory discomfort, a decline in overall lung function, and the erratic bronchospastic nature of my airways. Believe me, there’s nothing worse than waking up in the middle of the night, gasping for air because your air passages decide to clamp up! This happens to me almost every night.

I should also mention that I don’t buy the argument that Albuterol inhalers are just as effective in delivering medication to the lungs as nebulizers. Granted, many, if not most people out there, don’t use their inhalers properly. But no matter how good or bad your technique is with an MDI and spacer, you have to enough lung function to inhale the drug into your lungs. With mild shortness of breath it’s no big deal, but when you’re tight as a drum, that’s a different story. I guess the key is not letting yourself get that SOB in the first place ( but that’s another post).

What Ive tried to do recently when I feel the need for a treatment, is to limit myself to 10-12 breaths on the machine and then wait a few minutes and re-check my peak flows. If my PFs improve even minimally, I’ll discontinue the treatment and do some mental imagery until I “feel” better. When I take treatments in the middle of the night, I’ll take as few as 5 or 6 breaths, so that I don’t wake up completely. I don’t get total relief, but because I’m still half asleep, it’s enough where I’m able to stumble back to bed and hopefully doze back off.

Fellow blogger and lung challenged marathoner featured on the CBS evening news.

Be sure to check out his blog @ Live to run, run to live

Can you believe I’ve had 118 arterial blood gases (ABG’s) drawn in just a 3 year period??

Without getting too medical on you , an arterial blood gas sample (ABG), is simply a type of blood test that is done when it’s necessary to measure the amount of oxygen ( PO2) , carbon dioxide ( PCO2) and Ph ( the acidity ) and a few other things in the blood collected from an artery. During a severe asthma exacerbation , the actual struggle to breath ( what they call “work of breathing”), can cause the CO2 in the blood to increase to dangerous levels. If the attack becomes severe enough, the body( lungs) can’t eliminate the CO2 fast enough and the blood then becomes acidic ( low Ph) … not a good thing) The point where the body is no able longer compensate effectively, is called “Respiratory Failure”. Trust me..you don’t want to be in respiratory failure.

Of course that 118 number doesn’t represent the actual number of punctures into my radial artery. If that were the case , my wrist would have fallen off by now. Some of those samples actually came from arterial catheters that were placed in my artery during different hospitalizations. I estimate that about 50 of the 118 ABG samples sent to the lab, were taken from an art-line. That still leaves a whopping 68 individual punctures in my poor wrists!

Unlike regular blood draws from a vein, ABG blood samples are not only harder to get (you can’t really see an artery like you can a vein), but they can be quite painful as well. So, if the doctors think they’re gonna to need to get frequent and/or multiple arterial blood samples, they will usually place an arterial catheter directly into the artery and then draw the sample from that. They can also attach a transducer to that catheter which allows them to monitor your blood pressure directly from the source! Pretty cool actually ! In total, I think I’ve had about 10 arterial lines inserted in just the past 5 years. In any case…a 118 blood gas samples….is a lot of blood gas samples! It might even be a record for an asthmatic.

Oh..and at $250 a crack, that’s about 25 grand just for this single blood test. See……I told you I was expensive.

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…..Well, not exactly. I’m still getting my fix through steroid inhalers, but as far as the prednisone goes…..I’m totally off it ! ( at least for the time being.) I was on a low dose of it continuously for 14 months, but decided to stop, as it didn’t seem to prevent the more severe flare-ups.

It’s now been a full 2 weeks since I tapered off that poison, and so far, so good .My adrenals seems to be working fine, doing what they’re supposed to do. My peak flow readings, though a little lower overall, seem to be less wobbly (variable) and have been consistently in the green zone. My dyspnea level has been for the most part…mild. About the only negative thing I can think of, is that my neck and back and shoulder pain have increased 10 fold , but that was to be expected . Too me though, pain is the lesser of the two evils and I can deal with that.

I guess only time will tell how this is all going to effect me. One things for sure, from now on I’m only taking the drug when I get really really sick, and then, just long enough to recover.

Again with the disclaimer…This is a personal choice I made after discussing it with my doctors.

The bills have been tallied.  During these past 12 months,  I’ve managed to rack-up an astounding $492,338.53 in hospital bills. Add to that, all the outpatient clinic charges, prescription costs and so on, and we’re easily over the half million dollar mark.  That’s pretty scary.

Did you know , that a single day in the Intensive Care Unit at UCSF medical center in San Francisco, now runs almost $16,000. For that price you get the Nurses, Physicians and a monitored bed.  Everything else is charged separately! Even If you’re lucky enough not to need the ICU, a bed in the step down unit will still cost you $5,000 a day.  I think a regular semi-private room on the medical ward goes for around $2000. I’m not sure , because Ive never actually stayed in a regular hospital room. They always put me in ICU or TCU (whether I think I need it or not.)

I’m extremely fortunate (at least for the time being), that I have good medical insurance and don’t have to pay the bill. But, looking though the itemized charges, I quickly found over $50,000 in billing errors and/or charges for stuff I never received!   For example…$150 for a pediatric airway adapter?? ( I don”t even know what that is) How about $600.00 for Bipap masks when I wasn’t even on Bipap? One of my favorites though , is $ 900.00 for a bottle of Flonase. You know…nasal spray? And how about the legitimate charges; $190.00 for a single nebulizer treatment. $500 per day for Oxygen, $200 for a single blood gas, or how about $3000 per day if you need a ventilator? I wonder if the insurance companies ever bother to scrutinize these line- by- line charges? I know they have contracted rates with the hospital and end up paying less than 10 cents on the dollar anyway, so maybe it doesn’t matter to them. I’m just floored every time I receive a hospital bill.

How on earth do people with serious health problems survive without insurance?

PS…As of Oct 1st 2009, the average cost of an ICU bed in San Francisco is $19,000 per day..and that doesn’t include any extras.

Back in the old days when you got sick and ended up in the hospital, it was probably because your primary care doctor put you there. Boy, have things changed.

Nowadays you have one set of doctors who see you in the clinic when you’re doing well, another set of doctors who see if you need emergency care, and yet another set of doctors who take care of you if you become hospitalized . Many times, these “hospital” doctors know little, if anything, about you except what they observe right there on the spot and /or what they can read about you from prior admissions. If you receive your medical care at a huge teaching institution like I do, it gets even more impersonal, because you have multiple teams of student doctors and residents that rotate through the system a every 3 or 4 months. Chances are, you’re gonna see a different doctor every time.

This system seems to work fine if you’re generally healthy and don’t need frequent medical care, but if you have a complicated medical history and don”t fit the mold ( like yours truly), then things can get a little frustrating…especially in the Emergency room.

That’s where the patient “intro letter” comes in. More and more Physicians are writing these kinds of letters for their medically complex patients (not just severe asthmatics) to carry with them. If you ever end up having to go to an Emergency room ,the letter basically introduces you to the staff and provides the physician with some basic information about current health problems. It can save you from having to recite your entire medical history over and over again to people who don’t know you ( this is especially helpful, when you can”t breath). It can include valuable information on what seems to work best in treating your condition.

The letter below was just updated a few days ago by my Pulmonologist, and is the actual letter I sometimes bring with me to the ER . Yes…sometimes being in a place I don’t want to be when I’m having a hard time breathing , can make me a little anxious. But c’mon…. when you’re struggling to breath and they’re threatening to shove a tube down your throat, you”re bound to get a little antsy!

IV Fentanyl in small doses sometimes works for me in helping blunt the feeling of suffocation. The only problem is, most opiates can also suppress your breathing , so most physicians are reluctant to give them unless they know you will react to it.

First of all , thank you everyone! for all the nice comments. They mean a lot to me. My apologizes for the self pity thing in the previous post. I guess even us butch super hero types carry a bit of the drama queen gene. I don’t care how many times I go through this, I always feel worse during the first 5 days following a hospital discharge. The medical establishment tends to release you as soon as there is clinical evidence that you’ve “turned the corner” , but not necessarily when you’ve started to feel better. There’s a huge difference.

Anyways, this time is no exception. Two days out of prison and I feel like hell. On top of steroid withdrawals, I picked up an horrendous cold/and or allergies ( I’m not sure which) , my lungs are still tight , and all those needle pokes I received in the hospital are finally starting to ache. Believe it or not they put IVs in my knuckles ! I have no decent veins left, so they had to use the tiny ones in my thumb and first finger knuckles. Ouch! That bit about trying to convince some of the doctors that I wasn’t faking my asthma , was probably a result of mild hypoxia , mixed with a little hypercapnia, and some steroid induced psychosis sprinkled in. Geese, they must have thought I was a lunatic. Last time I was in the hospital , I felt the need to convince everyone , that I was indeed a 4 time marathon finisher (that probably got a lot of laughs too). It’s amazing how a combination of IV steroids and heart -pounding, sleep depriving drugs can change can make you paranoid.

Each severe flare-up and subsequent hospitalization, takes a little bit more of the fight out of me. And though I sometimes complain that I will never put myself through it again, the reality is , when you can’t breath , you’ll grasp at anything you think might help. It’s probably because of my high level of physical conditioning, that I’ve been able to endure so many of these severe exacerbations. Sometimes I wonder if everything I do to try to fight this disease is really worth the hassle. But I suppose as long as the good days out number the bad, it is.

OK time to put this episode to rest. All I wanna do now is get well, so I can plan my next adventure. I haven”t been outdoors in almost 2 weeks, and it’s driving me batty.

Here are a few grainy pictures I captured with my phone while in the ICU. I don’t think they’re worthy enough for a slot in my “Gross Hospital pictures ” album , but they capture the moment.

A week of continuous Albuterol running at 20mg/hr, mixed with feelings of guilt and overwhelming frustration, was pretty much the theme for incarceration number 92.

Maybe I’ve been reading too many other bloggers accounts of their brittle asthma experiences while in the hospital setting, or maybe it was the steroid psychosis kicking in, but this was the first time I found it necessary to incessantly try and convince some of the doctors caring for me, that I indeed had very severe asthma and wasn’t faking it.

A few days into this stay, my Pulmonologist finally showed at my bedside and basically told me to cool it. “Why do you keep pondering this crazy notion that you might not be a severe asthmatic?” “Stop ruminating on this! ” …were his exact words.

Perhaps, missing out on the Portland marathon had something to do with the intensity of this flare-up and the feelings of failure. I think the fact that some of my friends ( who were sick themselves) were doing races in my honor, somehow made me feel even more useless.

Anyway, I was discharged from the hospital Sunday afternoon, but am totally trashed. I don’t think I wanna go through this anymore. I’m tired of being constantly short of breath. I’m tired of the stress I put my loved ones through every time I get sick. I’m tired of chasing dreams I’ll never obtain. I’m tired of playing this game…. period.

OK, I’m feeling a little sorry for myself right now. I’m sure I’ll feel better once the steroids leave my body, but I’m not so sure if I want to continue blogging about my asthma. Ive made too much a game out of it.

Monday, Visit with Dyspnea specialist Dr.Susan Jansen
She spent a generous amount of time with me (almost 2 hours) and I actually learned quite a bit. I was impressed by her knowledge of pulmonary mechanics and the neuro-mechanisms of dyspnea . Because she knew I was an RT by trade, she was able to speak in highly technical and clinical terms, which I think made the conversation easier for the both of us. We talked a lot about “dynamic hyperinflation in asthmatics” ( which I suffer from constantly), and how to better deal with the problem. She taught me some really cool imagery and relaxation techniques that I can try when my dyspnea levels get out of control. She also brought me up to date on the latest happenings in the world of asthma/dyspnea research. I think what I liked the most about her , was her enthusiasm in this under-researched field, and the fact that she completely understands and supports my my desire to push myself to extreme physical limits … regardless of the perceived consequences! She believes that people with severe lung disease, even brittle asthmatics, should do what they want and not worry about about their breathing (using common sense of course.) At the end of the visit, she put together a basic asthma care plan for me, which was pretty much the same as previous versions from other doctors..

Tuesday, Lab tests
No doctors or scientists today, just an xray of my neck and some misc blood tests.

Thursday, Follow-up visit for the SOB self-management research program.
This was my final follow up and graduation visit for this 12 month study, and I’m happy to report that I surpassed my earlier PR’s and set a new all time record in the following tests:
* 6 min walk test ( which is actually 5 minutes if you deduct the turn-arounds), I walked 2,256 ft!
*Arm lift test, I completed 121 reps in 1 minute!
*Treadmill endurance test, I maxed out the timer and made it to the 16% grade level without tiring out.
Lastly, I blew an FEV1 of 43 % for my  post bronchodialator PFT, which is the best Ive done in an entire year!
Because I’m such a unique specimen, we discussed the possibility of me signing up with a severe asthmatic volunteer research network.  Apparently there’s shortage of severe asthmatic guinea pigs in the United States, especially those who are as weird and physically fit as I am.  Most of these research studies involve invasive procedures , like bronchoscopy and biopsies, but the compensation can be in the thousands of dollars.

Friday, Neurology appointment
Lastly, to cap the week off, today I saw a Neurologist regarding problems Ive been having with my right hand. For the past year or so, I’ve been having numbness and tingling on my right side that started in just a couple of fingers, but has now progressed all the way up my arm to my shoulder socket. I still have a lot of strength and can grip things , but I at times I cant feel what Im gripping. Its probably just a pinched nerve in my shoulder or spine, but because Ive had so many arterial lines placed on that side, I wanted make sure that my ulnar or radial nerve ( the main wrist nerves), weren’t damaged or that something more serious isn’t going on. As it turns out, its definitely a nerve problem , but they wont know exactly what kind of nerve problem until they do a nerve conduction test and electrical shock test ” EMG” which is scheduled in a couple of weeks……It’s always something huh!

With all the excitement and the welcome distraction of the recent races Ive participated in, it’s easy to forget that just 4 months ago I was sucking on the end of a size #7.0 ET tube, attached to a ventilator. Despite a fairly long run of good breathing days with a few races sprinkled in between, the reality is, I’m still a very severe and labile asthmatic. It’s just that when I’m feeling good, I tend not to think or blog about it much. Well, playtime is over, at least for a while. It’s back to the real world where the search for better breathing never ends.

This week I have a slew of medical appointments and research follow up visits at UCSF . Among them, I have a hard-to-get appointment with a Dr. Susan Jansen (one of the most eminent asthma researchers in the world). Only the worst of the worst get referred to her. ( Gee, that makes me feel important)
Nothing else can be done for my asthma in the conventional sense, but the hope is that Dr. Jansen might be able to show me some techniques to more accurately perceive what my body is doing, i.e. teaching me how to recognize and differentiate those asthma symptoms which are life threatening, from those that are not. Thereby giving me more control over my disease and hopefully reduce the number of hospitalizations in the future.

Probably not the magic cure, but I sure hope these visits will at least render some useful information… If not for me , perhaps someone else. Ive been to so many of these kinds of “looks promising” appointments, that I don’t wanna get my hopes up. Besides, I hate being anyway near a hospital or medical building when I’m not real sick.

Follow -up report by the end of the week. Enjoy the last week of Summer vacation all !

This chart represents my dyspnea levels ( shortness of breath levels ), recorded daily for the past 330 days , and is part of a year long research study I’m involved in that deals with dyspnea, it’s effect on ones ability to exercise, and the most effective ways of providing education and support to those with chronic shortness of breath.

You’ll notice in the center of the chart , there was an extended period from early November through the end of January, where I enjoyed lot of mild to only moderately difficult breathing days ( 1s & 2s on the chart) . Then , as we get into February , I’m not so lucky. My breathing gets progressively worse,and from late March to Late April, my dypnea levels shoot up in into the severe zone ( 3s & 4s), where it stays for quite a while (the #4s coincide with my hospitalizations). Finally , in early June my dyspnea levels start trending back down to to my baseline where they have pretty much remained since.

Along with my daily dyspnea levels, I also have to record all of my physical activity as well as my exercise goals . At the end of the study on Aug 28th, the researchers will analyze all the data and come to some sort of conclusion. I’ll post the findings after they’re published.

First, the good news; I got the results of my latest bone density scan , and guess what? I don’t don’t have osteoporosis anymore ! Since my last scan back in 2003 , my T score actually improved from – 2.7 to -1.9 They believe that this improvement is directly attributable to my walking and daily exercise program. A T-score of 1.9 still indicates a greater risk for bone fracture than most people my age, but it sure feels good to know that my exercise efforts have helped to substantially reduce lower that risk (btw…Osteoporosis is one of the more severe side effects of chronic steroid use).

Now for the not so good news; for the last 3 months Ive been experiencing numbness in my right hand . It started out as more of a nuisance than anything else, and I figured it was probably some type of medial nerve problem ( ie.. Carpel Tunnel Syndrome). But now the numbness has spread all the way up my arm to my shoulder and it drives me crazy. Sometimes my hand gets so numb , I can’t tie my shoelaces.
Yesterday they did a bunch of preliminary neurological tests and scheduled me to hook up with a Neurologist. They think it might be a pinched nerve or have something to do with a compressed disk in my neck, but until they rule everything else out, I’m supposed to wear this uncomfortable wrist brace at night .