Well, the hospital bills have reached new levels of absurdity. I thought my medical bills from a few years back were crazy, but this one takes the cake. I particularity like the $1900 charge for an Advair inhaler ( listed as “FLUTICAS/SALMETER INH 500/50″) on the bill, and $900 for Fluticasone nasal spray( ie Flonase). [...]
stephen Gaudet
My name is Steve. I reside in the San Francisco Bay Area and have lived with severe refractory asthma since birth. I’ve lived a lot longer than people thought I would. My walking story, and the concept for this blog, begins in Sept of 2004, when my disease finally impacted my ability to earn a decent living. At the ripe old age of 49, I was forced to retire from my 28 year career as a Respiratory Therapist……Seems I was spending more time as a patient in the hospital, than as an employee in one. Despite being constantly short of breath, out of shape and unable to work full time, I didn’t want to lay around the house feeling sorry for myself waiting for this disease to kill me. I decided to put into practice what I had preached to my chronic lung patients over the years. And that is …..”Exercise , Exercise…Exercise ! Even when you’re short of breath…”You need to exercise!” Though I may look totally healthy on the outside, on a good day my lung function is only 30-40 % of normal and I’m pretty much short of breath all the time. Walking and/or running a marathon is much harder than it looks, and can be dangerous for someone like me, but I’m living proof that it can be done. In fact, Ive done it 7 times now. My doctors still can’t figure out how the heck I can physically do it, or for that matter, why the heck Id want to in the first place. I do it because it makes me feel good about myself. My lungs might be trashed, but my brain isn’t. I push on with life despite my breathlessness, I train very very hard to be able to walk marathons, and I never ever give up. My goal now, is to keep breaking barriers and turn heads for as long as my body will allow, and to demonstrate to others, that even people with severe lung disease can do some pretty amazing things if they have the will and the passion. And if I educate a few people along the way, that would be great too! My Cure Talks:
24 Hours in the life of an Asthmatic
Check out Kerri’s vlog post and follow us through a typical day living with asthma.
Dupilumab , A Game Changer ?
When I heard the news today that there’s a new drug in the pipeline for severe asthma, I about fell out of my chair. When you hear one of the world’s most respected asthma researchers proclaiming that this new drug is a “game changer”, you can’t help but feel a little more optimistic about the [...]
How to run like a severe asthmatic, by Bill Swan
Saw this blog post by Bill Swan and liked it so much I just had to re-post it here. Bill provides us with a step by step instruction guide on how to run like a severe asthmatic. ( I think the photo says it all, don’t you?) Read more about Bill on his blog at [...]
Plan B
Yesterday I completed my final “test” walk in a series of trial walks that started a month ago to see if training for a future marathon might be doable. The plan was to do the Portland marathon this October ( my 3rd time) and then hopefully obtain a qualifying time to enter Boston in 2014 [...]
Just call me Bubble Boy.
Exposure to this …… And this…. Is there anything Im not allergic too? I think I need to live in one of these… So two hospitalization in just two months has me and my Pulmonologists scratching our heads as to what it is that keeps causes my asthma to spiral out of control so often. [...]
Self Service
Just one of the advantages of being an asthmatic Respiratory Therapist, though the hospital staff might not be so thrilled. They get a little grouchy when the patients start adjusting ventilator settings Now for the serious educational part: The rational for using non -invasive bipap therapy during a severe asthma exacerbations is simply to reduce [...]
Musical friends hard at work
My friend Don is up for a Juno award next month. Couldn’t have happened to a nicer guy. If you haven’t yet, check out his music 2013 has also been a really busy year for friend and bass mentor Rick Shaw. He just completed an 8 show tour in Japan with the Gordon Goodman’s Big [...]
3 Good Weeks
For the life of me I can’t figure out why my breathing was so good from those last 2 weeks in January all the way till Feb 3rd. When I say “good” I don’t mean like a return to normal lung function or even a significant decrease in symptoms, but still what I experienced during [...]
Duke …aka snuggle bug
When it rains it pours. Our hearts have never been so broken for so long. Why does this keep happening to the ones that bring us so much joy. It’s barely been 4 weeks since Milo’s passing, and now this morning we had to put to asleep yet another one of out beloved cats. His [...]
Yes, I still walk.
Haven’t trained for or entered any races, or even taken any walks greater than 5 miles in almost 2 years now. However,come rain or shine, crappy breathing or not, I still get out and walk 3 to 4 miles almost every single day. My main motivation for doing so nowadays, is mostly to preserve what [...]
Farewell Sweet Angel
The oldest of our 4 cats who shared his live with us for almost 19 years, was given back to god at 10:10 am February 13th,2013 Milo was a proud and fiercely independent little Persian kitty that we adopted from the SF SPCA in 1996 and became a huge part of our family unit. Milo [...]
Guest Post by Kerri
It’s a real pleasure to have my good friend and asthma advocacy partner Kerri MacKay here as my first guest poster. Thank you Kerri! For as long as I can remember, defining moments in my life have had some sort of musical connection to them. To use two very cool album titles in the [...]
What’s in a number?
I still have a hard time believing it, especially the way Ive been feeling this past year, but during my most recent Pulmonary function test a few weeks ago, I blew an incredible FEV1 of 50%! OK, blowing an FEV1 of only half of normal may not sound like a big deal, but it’s the [...]
My Trip to Churchill
My journey begins in Winnipeg (my very first time crossing the Canadian border). Just 2 days earlier there had been a pretty bad snow storm and potential weather delays at the airport were a big concern.Fortunately things worked out and I got there on time without any problems. Within minutes of stepping off the plane [...]
12 month Update
It’s almost 2013 and I just realized I really haven’t posted a breathing status update in almost a year. Probably the biggest change that I’m noticing, is that my dyspnea is getting more pronounced and more constant. Where I used get 8 or so “good” breathing hours a day, Im down now to less than [...]
The next great adventure
This one doesn’t involve marathon walking , or music, or sightseeing through an ancient city. Nope, this adventure is totally different. I’m going on a Polar Bear expedition in Churchill Manitoba in north eastern Canada. Okay, so maybe the word expedition is a slight exaggeration. I guess a more appropriate description would be “Tour”, but [...]
Bassist Extraordinaire…. Rick Shaw
A couple of Saturdays ago I had the pleasure of meeting one of my favorite bassists of all time, Rick Shaw. Rick has worked with all kinds of recording artists and is also the bassist for Johnny Mathis and Gordon Goodwin’s Big Phat Band, my favorite jazz band. As a novice bass player, it’s difficult [...]
Temporary Reprieve
Earlier this week I had my long awaited lung transplant evaluation at Stanford University. Dr Weill and the other team members were awesome. I learned a lot and am satisfied with the outcome. In fact I think everyone involved in my care to this point has learned something. Very few asthmatics are ever referred for [...]
Lung Transplant Evaluation Approved.
It’s been way too long since I posted to my blog. Been doing most of my updating via my asthma support group on Facebook. So anyways, after 6 months of going around and around with the insurance company, they have finally agreed to pay for a full lung transplant evaluation. My appointment is scheduled for [...]
