Today I received my entry confirmation for the 2009 Maratona Di Roma in Rome Italy next March. I know it’’s still 5 months away, but I”m very psyched! This to me, is the marathon of all marathons. And new for 2009, they’ve incorporated St Peters Square into the Marathon course. How cool is that?

Seriously, if you ever get the opportunity…. Do the Rome marathon! — It’s a life changer! And if you need help registering (which can be a daunting task if you”re in the United States) , contact me and I’ll show you how to cut through some of the red-tape.

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 in the first place. 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 then 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 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), werent 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 !