It’s been just over 2 weeks now since I did the Boston marathon, and except for today, which I can’t blame on the marathon, Ive managed to stay pretty healthy. That hasn’t always been the case right after a big race. Looking back on how things played out on Boston weekend, I think the strategy of proactively medicating with prednisone, paid off . If you remember, I bumped up my pred to 60 mg 2 days prior to the race and then rapidly weaned back down afterward. I still got really tight and wheezy immediately after the race and had to take several back to back neb treatments throughout that evening, but thanks to the prednisone I was able to keep things from escalating. I think a lot of the post-race flaring was caused by my body being in state of shock from all the exertion I put it through. As much as I hate the stuff, I think the prednisone did a great good job at protecting my airways during the race and in the hours and days that followed. It might have even kept me out of the hospital.

Another thing I learned from doing this marathon, is that I need to take off a few pounds. I mean it just makes sense that the lighter you are on your feet, the faster you’ll be on your feet. The less you weigh, the less stress you’ll put on your legs and feet and even your heart and lungs. I might not look real fat, but the fact is, I’m 10 lbs over my ideal body weight. For the Boston marathon I weighed in at 150 lbs, which is the heaviest Ive ever been at any of the marathons Ive done. Part of that weight gain was probably from steroids, but I’m sure the bulk of it was from eating too much fattening food during the winter holidays.
Back in 2006 when I walked my fastest marathon ever, I weighed 144lbs. We’re only talking 6lbs less , but that 6 lbs made a world of difference when it came to speed. I ended up finishing that race almost 30 minutes faster than I did this one. Too bad I didn’t pre-medicate with prednisone during that 2006 race, because two days after that race I ended up in the hospital. But back then, the whole marathon/ severe asthma thing was still new to me , and I wasn’t yet convinced that walking a marathon could actually make me sick(which by the way, I fully believe is the case now.) As far as my weight goes, you might not know this, but since I began walking for fitness back in 2004, Ive actually lost and kept off nearly 20 pounds. That’s right, the steroids along with a lack of physical activity, was turning me into a little blimp.

So anyway, to put into action the things Ive learned from the Boston experience, Ive set a goal to loose 7 lbs and then keep it off. I will accomplish this by doing more strength training at the gym and by eliminating some of the junk food from my diet. I hoping to knock these pound off in about 2 months, just in time for my next gig ( whatever that might me). And from now, every race I do, I’m going to bump up my pred. Yes, I hate the drug, but if it will keep me out of the intensive care unit, I’ll take it.

Speaking of the Boston marathon, my friend and ever so funny walking partner/guide in that race , Miss Dizzy Lizzy, is finally getting caught up on her blogging ( Some excuse about not having her laptop). Anyways, she promises to have a race report about the Boston marathon , up by this weekend. I love reading other people accounts of that race.

(Arterial Line)

Thanks everyone for your support and especially to Kerri and Dr Wensel for staying in close contact during my 98th hospitalization. Thanks also to ALL the wonderful nurses who took care of me..You guys are awesome! Most of all, thank you to my dear Douglas who goes through hell every time I get sick. I’m so sorry I put him through this. Yes, living with a brittle asthmatic is definitely not for wimps.

Im starting to sound like a broken record with these hospital reports, but no kidding, this flare-up was no picnic. It ranks up there as one of the worse on record for me. On a scale of 1-10, probably an 8 or 9. I was pretty sick there for a while and was starting to have doubts as to whether I was actually going to pull through it. But it seems I have more lives than all my kitty cats put together and will apparently live to do this all over again sometime the future ( I just hope it’s not the near future).
Not sure what the trigger was this time, but I’m guessing that the cold I had from the previous hospitalization never quite went away. ( walking in the rain last week probably didn’t help either)

The primary problem this time, and what usually happens when I get really sick like this, is something called CO2 retention. The act (or work) of breathing becomes so hard, that the level of CO2 in my blood climbs really high ( what they call respiratory failure). I was in failure for 4 days with PCO2s ranging from 38 to 70 (when breathing at a rate of 50, that’s not good) My lungs get so tight, that I can’t move any air…I don’t even wheeze! When you listen to my lungs ,you can’t hear any air moving.

Because of all the problems I experienced with lack of sedation while I was on the ventilator the last time, I chose not to be intubated this time ( probably a mistake,because it would have immediately lowered my Co2). Instead , we relied mostly on cont alb nebs, bipap, and steroids to reduce my CO2 indirectly. Thanks to a call put out to Dr Wenzel ( who btw, was in London England at the time), a huge increase in my steroids was ordered along with a few other strategies she recommended, seemed to set the stage for my eventual improvement. Finally on the 3rd day with the increased steroids on board, my lungs started opening up , my work of breathing decreased, and my CO2 started to fall. By day #4 my PCO2 was back to normal and I was starting to wheeze again ( a good thing) . Ironically, while all this was all going on, I found out that there was actually a world-wide shortage of propofol. So even if I chose to be intubated, they would have probably used an alternative sedative agent. Weird huh

On day # 5 I was stable enough to be transferred out of the ICU to the step down unit where I continued to improve. On day #7 I was bugging them to let me go home. On day #8 I was paroled.

This time around I thought Id do something different and post some of the good pictures instead of the bad ones. Of course, I still have to include my battle scars pics. I must have been stabbed 50 times just to gain access to 2 functional IVs and one arterial line. My arms look like black,blue and green swiss cheese and are really really sore.

Today, Im breathing a little better, though my lungs sound like a washing machine during the wash cycle. Course and wet sounding wheezes that you can hear from across the street. Again, this is a good thing and means that my lungs are opening up. The danger is not quite over, as there is a possibility that I could rebound during the next few days, but I think for the most part, I’m over the proverbial hump. In any event, I can already tell that recovering from this exacerbation is going to be slow and difficult process.

This may not come as a big shock to everyone, but these recent flares have taken such a toll on my body, that a Boston victory seems unlikely. There’s just not enough time to regain the training Ive lost. Having said that, I’m not going to let asthma stop me from doing what I love. Boston may, or may not happen. We’ll just have to wait and see.

Just one final thought…..Though I may look happy in the pictures above, it was all for the camera. I’m a ham, no doubt, but I’m also human. These recent exacerbations( 3 hospitalizations in 3 months) have left me incredibly frustrated and down on myself. Steroid induced or not, right now I’m in a pretty deep depression that I’m not sure how long will take to climb out of. I’m not really sure that I even wanna continue blogging about my disease. I hate to be selfish, but lately, just the word “asthma” or the thoughts it provokes, make me wanna run and hide. If I seem slow to respond or update, please bare with me. Thank you everyone for being such good friends. We have built a huge community around our disease and are getting the word out. You should all be very proud.

Postscript 2-7-2010; I had no idea I would strike such a chord with my friends over my comment about not wanting to blog about my asthma anymore.
Don’t worry, I will definitely continue to blog and post on asthma support sites. Maybe not as often , and maybe not focusing as much on my own asthma, but I will definitely keep everyone up to date on what’s happening in my crazy world. I’m just really burnt out right now and I need to focus my attention on things other than my own breathing. Ive been blogging about my asthma and my declining health for 5 continuous years now. I don’t want to be one of those people who chronicles their own death(as noble as that may be). I need to start paying more homage to my idol, the King of the ballad , Mr Manilow. (I haven’t even seen his new show at the Paris Vegas yet.)
So NO worries…. I’m not going away, my life is way too fascinating to keep all to myself

Sorry for the silence. This one kinda snuck up on me. I ended up in the slammer very very sick, but am starting to improve.
I’ll write more after I get home. (It’s really difficult to type when you have a ton of IVs in your hands and arms).

Thanks for the cards,calls and wishes.

There are tons of inhaled steroid preparations on the market, so why an older product like Qvar? Well, the manufacturer claims that it’s steroid formulation has a smaller particle size than the others. This means better deposition into the lungs where my airway inflammation is thought to be occurring. In other words, the drug gets down deeper where it needs to be.
Why the claim of smaller particle size doesn’t seem to hold true for the generic forms is still quite debatable, but perhaps it has something to do with the way the drug is manufactured. Regardless, I think it’s worth the time and the few extra dollars if it will help me breath even a little bit better.

I started the trial 7 days ago with a dose of 2 puffs ( 80mg strength) twice a day, along with my regular dose of Advair 550/50 , 1 puff twice a day and my 15 mg daily maintenance dose prednisone.
Anything to reduce my dependency on the evil candy would certainly be welcome. Inhaled steroids carry some side effects as well, but nothing like prednisone. I’ll try to do monthly updates on how it’s going.

Nothing really interesting going on since I got out of the hospital. Though Ive taken a couple of short slow walks, overall Ive been trying to let my lungs heal as much as possible before jumping back into a physical fitness regimen full time. Been spending a lot of this post hospital recovery time doing non physical activities, including some asthma advocacy and research stuff. Keeping mentally busy, helps me cope with my breathlessness and the not so pleasant symptoms of prednisone withdrawal. The downtime has also allowed me to play catch up on some personal stuff.

Next Friday, Saturday and Sunday will hopefully, be a little more exciting and a little more normal for me. I’m supposed be going down to Solana beach ( near San Diego) for Dave’s advanced racewalking clinic. Ive been really run down lately from the steroid taper and its an awful long drive (450 mile each way), but I’m hoping that I’ll feel well enough by then to go.

If I do go, it will be mainly to hang out with other racewalkers and to meet some of the super stars of the sport. Three time Olympian, Philip Dun and two time Olympian Tim Seaman just to name a few, will be there coaching. Of course Dave Mc Govern , who’s a legend himself, will be running the whole show. My lungs are way too messed up to participate in much of the actual training, but sometimes just watching the elite walkers walk, and/or having my own racewalking form critiqued by them, provides me an adequate level of learning. Most of all though, I go to these weekend clinics because I have a passion for the sport and for the crazy people who engage in it.

In the coming weeks I have a ton of the usual medical appointments, but also a referral to a brand new service called “Symptom Management”. This new clinic is an off-chute of the Palliative care program over at UCSF. I’m going primarily, to see if there are any new therapies or strategies out there that can help me with my worsening dyspnea. To my knowledge, I’ll be the first asthmatic to receive treatment at this new clinic. I’ll be blogging more about the topic of palliative care in a future post.

Sunday was the Nike Womens Marathon. The last few miles of the marathon course passes by my old neighborhood at Ocean Beach in the outer Sunset. I know several people who are doing this years race. I hope they all had a great time!

As far as incarcerations go, this one went pretty smooth and was fairly minor in intensity without any major surprises. Because the ER staff at UCSF know me so well, I didn’t have to spend that much time in the ER and was admitted promptly to the ICU. And because I had the smarts to come in early on in the exacerbation, I managed to avoid intubation…. which also means I suffered less trauma to my body in general. They didn’t have to put any IVs in my feet this time, but they did have to put one in my thumb…ouch!

In total I spent just 2 days in the Intensive Care Unit and day and a half in the step down unit. I was released on good behavior ( and because I’m an RT) Friday afternoon. They know I can take care of myself pretty good at home, so they’re always willing to discharge me sooner than they would with other asthma patients. My PFs on discharge were still in my red zone, but trending upward.

About the only complication I had this time around, was some benign,but really annoying heart palpitations/ectopy ( PVCs) probably caused from all the albuterol. Over a 4 day period, I received a total of 270 mg of Albuterol . To give you an idea of how much Albuterol that is, a single neb treatment contains only 2.5 mg , which means I received the equivalent of about 108 individual neb treatments. I also received 2 grams of Magnesium over 30 minutes ( instead of 1 gram) ,which is something new they’re doing for patients at UCSF with status asthmaticus.

While I was in the ICU they also gave me the (regular) flu shot, which was pretty cool , because now I don’t have to make a separate trip back to the hospital just for that. Because of my hypoxemia,they also wanted to test me for HIV , which I agreed to, and which of course was negative. Also new this time, is that they had Propofol ( the Micheal Jackson drug) listed as one of my allergies on my allergy bracelet, because of the reaction I had to it the last time I was intubated. Unfortunately, most of the alternative sedative drugs don’t work as well as Propofol. Hopefully, I won’t have test that theory anytime soon.

The Nurses I encountered during this 96th hospitalization were incredibly kind and professional. The ICU and TCU nurses in particular were awesome. Thank you Jen RN, Linda RN, Kevin(ICU Nurse Practitioner) and Susan RN , for putting up with me. The RTs were awesome as well. Thanks Oscar and Carl and the others for all your help. It’s tough taking care of someone like me over and over again…I drive everyone crazy. Last , but not least , a special thanks to Norm, one of the hospitals spiritual counselors, for spending time with me and for arranging a laptop to be send to my bed in ICU.. Thanks Norm!

I’m still pretty sick and on a lot of medication, so it may be some time before I can resume my regular fitness and/or blogging activities. Thanks again everyone for your continued support . Also give a shout out to Tammy for taking 1st place in the racewalking division at last weekends Portland Marathon .

PS..As it turns out, no one was really pissed off that I did the Rock&Roll race on Sunday and that it may have contributed to this flare-up. In fact, most of the doctors thought it was pretty cool that I did the race, and if it made me sick?… so what.. was their attitude.

Thought my fellow asthmatics might get a kick out of this.

A few days ago I chatting with friend and famous asthma researcher , Dr. Sally Wenzel , and I had mentioned to her how I wasn’t feeling that great , and how I had just upped my pred to 50mg in an attempt to stave off a prison stay. I told her I feared that if the pred didn’t do the trick that Id probably end up in the slammer, but that I would try to hold off from going in as long as possible.

This was her response :

” Grrr. Sorry you are on the high dose pred at the moment! We need to TRY the Qvar in you, for sure. MIGHT limit the bumps (might not, but won’t know until we try). Funny, your words on prison, slammer, not going until you really need to, etc, are SOOOO typical!!!! Sometimes I think you guys must all get together and come up with the lingo. There really is a “severe asthma personality” I think!”

Well fellow asthmatics……. I think the jinx is up ! She’s wise to us …..

Actually…….She’s an awesome Asthma-tologist ! ……. (I just made that one up right now)

Btw…The the evil candy did it’s job and I was able to avoid that incarceration. The trick now, is to wean off that poison without backsliding.

I always try to write a little something about each and every hospitalization Ive experienced, but this is one Id just as soon forget about. In total , I spent 7 days in the hospital, 6 of them in the Intensive care unit, 3 of those days spent on continuous Bipap with an Albuterol bleed-in of 15mg/hr, in what seemed more like a living hell then a type of therapy.

This time around when asked what my wishes were concerning intubation, I chose not to.. ( not to be intubated that is) …..Big Mistake, I thought I was doing the brave thing by declining to be intubated if my breathing got bad enough. Feeling like a old pro at this, I thought I could easily fight off the attack with only continuous nebs and Bipap. Had I known just how difficult it was going to be to breath on a bipap machine during an asthma crisis, I would have definitely opted for the breathing tube and ventilator. Bipap therapy supposedly decreases the work of breathing during an acute attack, though in my opinion, the feeling of suffocation you get from having a mask strapped tightly over your face, outweighs any clinical benefits you might have achieved . We were however, able to prevent my CO2 from climbing into the 70s, though it took 3 days to do it. I can’t fault the medical staff, they were great as usual. During those first critical hours they asked me repeatedly..are you “getting tired?” I kept refusing, confident that I could tough it out on the bipap.

Can you say Ativan and Dilaudid? Very untraditional for a severe asthmatic to receive opiates during a respiratory crisis, but in my case these drugs help quell the severe air- hunger associated with fighting the attack.

Hey…I’m usually the first to poke fun at my own disease , and sometimes I’ll even video tape some not- so- pleasant moments in the hospital, but the video my partner captured this time, actually made me cringe. At the end of the clip you can hear the Nurse jokingly say….”your CO2 hasn’t even hit 60 yet”! She says this because Ive been known to have PCO2 as high as 90 during an attack without being intubated. ( Btw…normal PCO2 is 45 or less)

Today, thankfully I’m home breathing considerably better, but the whole experience has left me physically and emotionally drained. Its taken me 95 hospitalizations to finally come to the realization, that I’m probably going to die from this stinking disease. That’s fine, but you know what? …Screw the “dying with dignity” bit! If my death should come in the form of an asthma attack, I hope it happens quickly, or at the very least ,with a tube shoved down my throat, with me peacefully asleep on a ventilator. I’ve lived 54 long years with this disease. I have no desire to suffer anymore. Ive paid my dues. Call me a coward if you want, but I’m changing my advance directives back to a “full code”. Though I would prefer not being resuscitated if it was evident that I would suffer probable brain damage in the process.

Ive only been out of the hospital for 4 days now , and despite being still quite sick, I’m actually starting to feel more and more normal again (thats a scary thought huh). Though very limited, today I was able to resume my daily walks.

I don’t think healthy people realize just how much of an impact a single severe asthma exacerbation can have on the rest the body…It takes a lot out of you and sometimes the treatment is as bad as the disease. All the IVs and tubes they insert in you, and all the drugs they pump through them , effect not only your lungs, but the all the other body systems as well. I always come out of the hospital majorly bruised and beat up. This time in particular, it did a number on my arm and leg muscles. In just 10 days I went from having moderate upper body strength, to having absolutely none at all. Just 3 days prior to this last hospitalization, I was lifting weights in the 80-120 lb range on the weight training machines at the gym. Today, I can barely lift my arms over my head with NO weight.

The one thing I’m really good at, has been effected as well. Before I was incarcerated , I could easily walk 10 miles without batting an eye. Today , it took all the lung power I could muster just to limp my way through 3.5 miles. I’m having serious doubts now, as to whether I’ll still be able to do the SF half marathon next month. I may have to forgo that one, and set my sights on the ET marathon as my next race.

I’m very strong willed and I always seem to recover quickly after a bad one…but never fully. Each severe flare-up that I survive, takes just a little bit more out of me that I can never replace. It’s a constant uphill battle in just maintaining what little I have. It’s been a full week now since I came off the ventilator, but my throat is still sore from the tube and my dyspnea level has been at times, off the charts.

OK, enough of the whining and self pity routine. I’m going to put this latest chapter behind me , so I can start focusing on the things I really love doing …. namely racewalking, concert going, and avoiding hospitals.

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.

.

…..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.

Funny how many parallels you can draw between the endurance sports and severe asthma exacerbations. Though I never actually walked one until I was 52 years old, in many respects I’ve been training for marathons my whole life.

These are some of the thoughts that were running through my head while I was suffocating in the hospital last week:

A severe asthma attack is like the “ultimate” ultra endurance event, only this race starts in the Emergency room, you cant quit or stop to rest during the race, and you never know at what point the finish line will come. Could be 20 miles… could be 200. Once you start, you’re in it till it’s over….If you just can’t go anymore, they knock you out and put you on auto-pilot with the help of a ventilator. Regardless, you never cross the finish line until after your lungs finally open up. Sometimes this race can last for several days. Oh..and you’re not allowed to walk this event..You have to run as fast as you can or you’re disqualified…. …PERMANENTLY !

Assuming you finish the race, as most people do, you get a beautiful medal , but it ends up costing you tens of thousands of dollars.

Then there’s the excruciatingly slow recovery period… Speaking of which….

I’ve been out of prison now for 5 days, and I’ve been able to taper down to 40 mg ( prednisone). I also took my first post-prison walk today ( a little over 3 miles) , but boy ….it was difficult! My legs are mush , and my endurance is not existent.
I can see now, that this is going to be one of those long slow recoveries .

(The Prednisone Molecule)

Thanks everyone for checking up on me. I’m fine! ( well,… almost)

I’ve been out of the hospital for 5 days now, and while I’m finally breathing better again, the party has just begun. Thankfully, I’m already well into my steroid taper ( the worse part) and hope to be off it completely by next week. This is one subject I know a lot about because I been there and done it! …. over and over and over again.
You see, there are two parts to a severe asthma episode. There’s the acute phase ( the emergency part) and then there’s the steroid taper phase . Let me tell you…. the latter is no picnic.

Although prednisone( the evil candy) can save your life , you pay a hefty price in the form of nasty side effects.
For those of you who’ve ever had the pleasure of taking high-dose prednisone for any length of time , Im sure I don’t have to tell you how fun it can be. In my case it’s the insomnia, the bloating , the skin bruising, the muscle cramps, the rapid weight gain ( 6lbs in three days ) , the wild mood swings and the general sense that you’re going crazy, that bothers me the most. There are steps you can take to minimize these side effects, but you’ll never eliminate them completely.

The steroid tapering experience is different for everyone . As a severe brittle asthmatic, if you wean off too slowly , you run the risk of of developing secondary infections and dependency. If you wean too fast, you run the risk of relapse or rebounding (meaning your symptoms come back twice as fierce) . For me, weaning off those last few milligrams, is always the most difficult. It’s at that point where my symptoms tend to reemerge with a vengeance. I can usually taper from 100 mg/day down to 10 mgs/day in just a few days without problems, but going from 10 mgs to zero, can take me weeks. Some asthmatics have such severe disease that they are never able to completely wean off the drug. To survive they have to take 20-40 mgs every single day. It breaks my heart that people have to live like that. I’m lucky in that I’m only on the drug about 50% of the time which gives my body time to at least, partially heal before the next bout.

Oh..and another common side effect of prednisone withdrawal, is the constant need to whine about it.