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 .

I took these pictures at 8 o clock Tuesday morning from my front and back decks, and I don’t know if you can see, but the sun has a weird ring around it and the sky has a thick orange haze. Everywhere you go in the bay area, it smells like smoke. It’s been like this for 5 days now!

There’s something like 1,000 wildfires burning right now in California, the majority of them in the Northern part of the state. Lucky me… I live in the SF bay area, not far from where one of the biggest fires is burning. Despite the offshore breezes, the air quality here in the bay area and central California is absolutely awful. There is so much smoke in the air , the winds aren’t helping. It’s not unusual to fires here during the summer, but in all my life Ive never seen it ( or smelt it) this bad.

So far it hasn’t had a noticeable effect on my breathing ( I even walked through it yesterday… like an idiot), but if the air doesn’t clear up soon, no doubt there will be lots of people getting sick….myself included.

Since no one seems to know why Ive been getting so sick, so frequently lately , and since there’s a tendency to blame walking as a trigger,  I decided to do a little experimenting to see if I could find a link between taking long walks, and my breathing flare-ups.

Last Saturday just 4 days after being released from prison, I went out and repeated the very same 8 mile walk that I thought might have put me behind bars in the first place. Let me first say, I wouldn’t have even attempted a repeat walk so soon after a hospitalization , but I was breathing easy the evening before, and with the steroids were making me so antsy , I decided to go for it. Though I had to walk slower than I would’ve liked (18 min/mile) , my lungs behaved nicely and the walk went relatively well. I felt so good in fact, that I actually ended up walking 9 miles instead of 8. I tried my darnedest not to racewalk, but foolishness got the best of me and I probably did about a dozen or so short sprints. During the 3 hour walk I experienced chest tightness about every other mile , and think I used my inhaler about 8 times( pretty much normal for me for that distance.) The biggest problem I had was muscle fatique and the tell tale signs of impending calf cramps, not surprising considering that I was on 40 mg of prednisone at the time and had been bed bound just a week earlier. Anyways, I finished the walk feeling strong. I came home, took an ice bath and had only minor breathing problems the rest of the day.

Sunday morning arrives, and my dyspnea level is noticeably worse than 24 hours earlier and it continues to escalate as the day wheres on. ( I know somethings not right when I get  SOB just walking around the house.) My peak flows are still pretty good , but my FEV1s start to drift down. By Sunday evening I’m miserable and to make things worse  I couldn’t blame anyone but myself for the way I felt.  After all, I brought it on myself right?

Monday morning rolls around and I’m breathing great again, so I think to myself…  OK, one day of  bad breathing doesn’t sound like a bad trade-off for one good day of walking,  so why not go for it again . That afternoon I did my 5 mile bridge walk.   Monday night I’m still breathing good, and in fact,  felt better after the walk than before. Tuesday morning, a repeat of Sunday…..I can’t believe it.  I do a walk , and 24 hours later…I can’t breath again!  This is just plain weird.  This time however the SOB spills over into Wednesday, and by that evening my dypnea level goes through the roof.    Wednesday night was so bad, I actually thought I was going to suffocate and that would be.   Not only did I feel hyper- inflated , but I could feel my airways tightening up ( bronchospasm) . I was so SOB that I even had a hard time using my nebulizer. I couldn’t take a deep enough breath to get the meds in.  Now,  I’m not an anxious person in general, but I can tell you , that the anxiety of not being able to breath was making things worse. Just the extra brainpower that you consume when you’re anxious, can make you more SOB.   Afraid of falling over the edge and having to  911ing it,  I pulled out every trick in the book to relax my lungs and my brain !   By doing  diaphragmatic breathing exercises, purse-lip breathing, anti anxiety meds, opiates and neb treatments every hour,  I made it though the night ( sitting up).   That was probably a dare devilish move on my part, but at least I’m home right now and not in the hospital.

Thursday morning , exhausted , and still dyspneic from the night before,  I did the unthinkable, ( actually two unthinkables).   First , I bumped up my steroids back to 40 mg , then I  went out for a 5 mile walk!    I figured what the heck,  I’m so SOB anyway, how much worse could it get.  I complete the walk in 2 hours  in 86 degree “Spare The Air Day” weather,  and surprisingly , I was breathing BETTER after that walk…. than    before I left!

Its now Friday morning and I’m still breathing fairly well.  My PF’s are back in the green zone and my FEV1 is 39%.   So whats up?   I do a walk when Im breathing well and I get sick 24 later.  But then I walk when Im sick and 24 hours later I’m breathing well again. I must be wired backwards or something.  Maybe bumping up of the steroids had something to do with , but it usually takes at least a day for the extra steroids to take effect.

After a week of good and bad days, the  question remains ..is my walking causing my flare-ups?  Maybe it’s something in the environment?  Maybe  its just me?   Is there some kind of physical stress that I don’t perceive when Im walking that causes a gradual worsening of my symptoms.   Was it foolish to walk when I was already way too SOB to begin with?   That last question is debatable because many so-called experts will tell you to exercise even when you’re SOB. ( in all fairness , that last statement refers primarily to COPDers and not so much to COPD/ asthmatics) .

The experiment was inconclusive.   Because of the delayed response from the time I exercised , till the time I develop symptoms,  I still cannot say with 100% certainty,  that  walking in and of itself, is making me sick.  The search for the elusive trigger continues…  but until its found, I will continue to walk my ass off.

As I was mentioning to AsthmaMom , (whose blog I really like), the first rule of etiquette for a severe asthmatic who has just survived a traumatic hospital stay,  is to thank those who helped him get through it .   For those who held your hand , for those who kept a constant eye on you, for those who tolerated your moodiness and still managed to smile. For the one’s who felt bad when they had to poke you with needles.

During my Hospital stays I have the closest contact with the Nurses and Respiratory Therapists, but I will acknowledge phlybotomists, Xray techs, even the housekeeping staff, if they are kind and courteous to me.   I usually send one of those ‘ Thank an Employee ” cards that you find near the elevators or in waiting areas of a hospital. Sometimes I’ll  contact the hospital administrator or dept head directly to make sure that the individuals involved receive the recognition they deserve .
At UCSF ,   they have what they call the ”Star Program” .
I’m not sure how it works at other places,  but here when you send in these cards, the staff receive these little fabric purple stars that they proudly display on their ID badges. Some of them have so many of these stars , that you can’t read the name on their card.

So why the need to acknowledge my caregivers?   They get paid big bucks don’t they ?  Do you have any idea of whats it’s like to work as an ICU or Critical Care Nurse or Respiratory Therapist? Have you ever been a patient in an Intensive care unit?  I hope you never have to , but if you do , you’ll know why I take the time to do this.

To all those unseen heroes who work behind the locked doors of the Intensive Care Unit or Emergency Room saving lives……Thanks for saving mine!

As I type this post up, I’m slowly recovering from what was my 91st Hospitalization. By asthma exacerbation standards, it was only a moderate attack, but it was by far one of the most stressful hospitalizations I’ve ever had. And to think I may have brought the attack on myself….I can only describe my feelings as … unsure of anything now.

Ok, so for whatever reason, I ended up in the hospital and ( ICU again) , but I’m still not totally convinced that my walking was the only culprit. In defense of the medical establishments stance on this subject , I have to agree that there is mounting evidence to support their theory that because my asthma is so severe and because I air trap , that I may be unknowingly exacerbating my own flare ups by “over-doing it”. Not just with my walking, but with ANY activity that causes physical or emotional stress . They also point out that regardless of how well I keep my internal living and breathing spaces clean and free of allergens, there are potential environmental triggers outside my home that could be making the milder exacerbations more severe. As logical as this all might sound, it’s still at best, speculation, an educated guess, one of the only explanations left , if you will. It could also be just as true, that no matter what I do, or how well I safeguard myself from all triggers, I’m going to get sick. It’s a classic catch 22. If I exercise ( or live) too much, I put myself at risk for death, if I don’t exercise , I will die an unhappy blob. Given a choice, which path do you think Id choose?

Coming in for treatment early probably thwarted off an intubation, but I’m beginning to wonder if all these preemptive hospital interventions are worth the huge emotional and physical drains they inflict on me. Never have I felt so much like a medical oddity or burden on the system. Never have I been poked , prodded or questioned by so many lung specialists in such short order. For the first time ever I got an uneasy feeling that they just wanted me be to do what a nice stoic severe asthmatic is supposed to do…not argue with them , take my steroids, and quietly fade away, (preferably at home). Never have I felt so beaten up depressed , or defeated after such a short hospital stay. As crazy as this might sound, when I used to wait until I was critically ill to come in, at least I felt justified that I was sick enough to be there in the first place and therefore the resulting torture was somehow acceptable.

Contrary to popular belief, I am not Superman and I am NOT a gluten for punishment . If I am making myself sick by pushing myself too hard during exercise, then I need to modify my training. Having said that,I am not afraid of dying doing something that I love.
Right now I’m working on an exercise plan to reduce both the mileage and intensity of my training walks, while at the same time maintaining a minimal level of endurance needed to complete the goals Ive set up for myself. Ive decided to eliminate the majority of my daily bridge walks, as this is where I’m most tempted to racewalk, (which is probably the main culprit in my walk related exacerbations.)

In the meantime, I’ve been referred to yet another team of ” asthma specialists” who work with the worst of the worst … ie me. From reading their bios, it looks like they deal primarily with behavior modification. I think they’re hoping that they can somehow brainwash me into thinking that I’m not short of breath, thereby eliminating the dyspnea-anxiety cycle. I’ve agreed to try anything except psych meds or anything that makes you “feel” that it’s OK to suffocate.

For those of you who think Ive wimped out because of this recent set back, this Saturday, just 4 days after getting out of the hospital, I will redo the 8 miler that supposedly made me sick to begin with. This time however, I will not push myself as hard. If I can pull this off without getting sick, then the plan is to continue with bi-weekly LSDs to prepare me for the upcoming summer races.