Greetings from the 14th floor isolation room a top the Moffitt building at UCSF medical center in San Francisco. Your guest host for tonight’s show is..well, me of course. I’ll be discussing how much fun it is being a patient in the hospital with severe asthma.

Just happy to be alive, I was hoping to broadcast live from my hospital bed last Saturday night, but I was too sick. In case you hadn’t heard, your favorite middle-aged marathon walker managed to rack up his 104th trip to the slammer and his 18th intubation for asthma. You heard right.. 18 intubations!! (we’re talking science fiction stuff here). Anyway, I must have been really sick, because it took me 4 whole days to get online and get word out about what was happening to me.

To hear the ICU doctors tell the story, it was my participation in the Boston marathon that did me in. The first thing that many of them said when introducing themselves to me was… Is it true you did the Boston marathon? (Most of them thought it was pretty cool). One of the residents had even read my blog and remembered me from an earlier hospitalization.
The fact is, I was breathing really well the day I left Boston and a full 5 days before going to the hospital. The marathon may have caused some major leg pain and body pain, but it didn’t cause my breathing to spiral out of control. What did me in was a nasty bug that decided to invade my chest, which I probably caught on the flight back from Boston. I knew I was in trouble that Sunday when it turned into bronchitis. With me, chest colds and asthma can be a deadly combination.
Knowing that any delay in seeking treatment would only make things worse, I only fought the attack for 2 days before hightailing it to the slammer, for which I was incarcerated for 12 days. A rather lengthy stay… even for me.

Not wanting to worry about leaving my car in the parking lot or on the street, I decided to take BART and Muni from my home in Crockett,Ca to the hospital in SF. I wasn’t in a lot of distress at the time, so I figured taking public transit wouldn’t be a big deal. As always though, I misjudged just how sick I was and by the time I completed the 90 minute trip to the hospital I was definitely in trouble.

I checked in at the triage desk in the ER and only had to wait about 10 minutes to be seen. It wasn’t really until the triage nurse was working me up that I realized just how sick I was. My sats on room air were only 84% ( they were 92% when I left the house) and my BP was through the roof at 220/114. I thought..oh shit here we go again. I could actually die from this freakin flare.
From the triage area the Nurse downgraded my condition to serious and put me in the cardiac resuscitation room (you know you’re sick when they put you in that room). A million people came rushing in trying to jab needles in me and place those sticky monitor leads all over. They began the usual protocol cont nebs, mag sulfate, steroid bulus, chest xrays, blood work, etc. Took em about 20 minutes to get an IV in me and get ABGs. After about an hour in the ER, the ICU staff came down and evaluated me. Because of my notorious history, they decided it would be safer to monitor me in the ICU.

I arrived at the 13th floor ICU sometime around 10 pm. Early blood gas results had shown that I was starting to retain CO2, so in addition to the 20mg/hr of cont albuterol and a huge bolus of prednisone they decided to put me on Bipap. After 2 hours on Bipap they rechecked my gases, but my CO2 was still climbing. At that point they decided that since I would be requiring frequent ABGs, that it would be better to insert an Arterial line, which they did. It was shortly after that that I remember them saying that my gases were getting worse and that I needed to be put on a ventilator. Reluctantly, I agreed and 20 minutes later I was out for the count.

The next thing I remember is waking up on the ventilator choking on the ET tube. Shortly after that I was breathing on my own and extubated. Total time elapsed from intubation to extubation was appx 21 hours( a fast turn around for me). I found out later that the reason they extubated me so soon, was because I had pulled out my A-line (a potential catastrophic situation) and had also threatened to self extubate ( pull the breathing tube out). Of course, I don’t remember doing any of this, but I did find it odd that my wrists were tied when I woke up. I also found an IV in my foot and another in my shin! Not mention a Foley catheter and and an NG tube in my stomach. Too many freakin tubes and wires!!

I spent the remainder of the day in ICU where things were starting to look up. While there they set me up with a PCA, so I could self-administer Dilaudid whenever I got short of breath. ( yes, I use opiates to quell my breathlessness)

Ah, but that expectation was shortly lived. Just hours before my planned discharge , I started wheezing and coughing uncontrollably. It was as if I was experiencing some massive allergen exposure to something in the air. It was bizarre. My nose became plugged up and then started dripping like faucet wide open. My lung sounds went from clear to sounding like a washing machine during the wash cycle. You could here me wheezing from down the hall. I somehow managed to pick up ANOTHER freakin virus right there in the hospital. Once it got in my chest, that was it, I couldn’t breath again. It was like the asthma attack was starting all over again. Not knowing what kind of virus they were dealing with, they moved me to a private isolation put me back on high dose continuous nebs and bumped up my pred to 120 mgs . I stayed on the continuous nebs for almost 4 days before the attack started to ease. Finally, 12 days after the initial attacked started I had met all the criteria they had set for discharge and was allowed to go home.

During the 12 days I spent in the slammer, I lost 11 pounds. I was so dehydrated that they skin on my toes was dried up and was peeling off.As far as battle scars go, I counted 66 holes in my arms and legs and of course that wonderful black and blue bruising you get from all those Lovenox injections in your stomach. Amazingly, I don’t have a sore throat from the intubation.

The first couple of days at home have been rough. Yesterday I was so short of breath I thought I was gonna die. My FEV1 had dropped to 22% ( .65 liters) The lowest its ever been. Part of the problem is that I was discharged from the hospital on high doses of pred ( 100mg) and sometimes this can actually have a reverse effect on my breathing. Today I’m down to 90mg and plan to wean by 10 mg per day till I get down to 50 mg and then slow the taper from there. Considering the trauma that my body has been through ( again) , I think Im doing pretty good. I think the training for that marathon helped me get through this better than most people would.

Spending time in the slammer is never fun, but all the Doctors , Nurses and RTs I encountered this time around were awesome… many remembered me from previous admissions. Dr Wenzel of course was a big help as was one of the attending physicians Dr Thompson who put in a good word for me to a local pulmonologist Ive been trying to hook up with.

Most important though, I wanna thank all my friends for the their love and support. I received over 200 emails and letters, not to mention some real artwork. Thanks Kerri and Sara M.

You know what? I might be cursed a crappy lungs, but I sure seem to be blessed with some cool and caring friends. Case in point:

After spending a pretty ugly night in the local ER, I woke up the next day to find a bunch of Facebook alerts on my phone. My talented friend and one women cheering section Kerri M, created this incredible mural for me and put it on my Facebook Fan Page (which she also created). I also found out that she had been posting updates about my condition on her blog. Kerri always finds way to cheer me up when times are not so good, so I guess I shouldn’t be surprised ….but custom artwork? How many people would take the time to do something like that! I love it, and am going to have it printed and framed. Thank you Miss Lovely.
Are you sure you weren’t born in the 1960s?

And how about this one from Danielle(another one of my asthmatic buddies up in Canada) ….So cool.

Thanks Danielle!

OK, Case in point #2:
After finding out that I had been hospitalized again, Sally Wenzel took time out from a convention she was attending in Chicago just to see how I was doing. She spoke to one of the doctors who was taking care of me and made herself available to them if needed. Mind you, Dr Wenzel who is one of the world’s imminent asthma specialists, has never been paid a dime for any of the help she’s ever provided me. She continues to be my strongest advocate for lung transplant and is a dear friend.

Case in point# 3:
During my hospital stay I had the privilege of sharing a room with one of the kindest, most compassionate and non pretentious people Ive ever met. His name is Larry M. And despite facing major open heart surgery in the coming hours , he was more concerned about my predicament than is own. Larry and I have very different views on religion, (not to mention the sexual orientation thing), but in the 2 short days that I got to know him and his family, I now consider them dear friends and I think the feeling is mutual. In a couple of months after Larry heals from his surgery, we plan to do some serious walking together. Maybe we’ll make up the “Heart and Lung” contingent for a future Boston marathon.

I don’t know if it’s the Christmas season or if it’s all the hardcore drugs they have me on, but during this 101st hospitalization for this thing they call asthma, Ive been reminded over and over again just how kind and caring people can be.
To all the people who sent me cards, emails and Facebook comments, thank you SOOOOO MUCH !
I might not get a chance to thank you all personally, but I know who you are and I will never forget your kindness. People whom Ive never even met before have taking the time to reach out. Well, I think that’s pretty great.

As for this current exacerbation, it was a relatively mild one and I was discharged from the hospital today. And and while I’m still very short of breath, I’m holding my own and thankful be home in time for Christmas. So many people aren’t as fortunate.

Now you know I couldn’t end this post without a video clip of some kind, right? But this time instead of posting images of me gorked out on a ventilator or sucking on a neb, I’ll leave you with this corny but totally appropriate snippet of the little doggy Christmas party we had in room 3104. ( I took this with my phone so the quality is not so great, especially with my thumb on the lens half the time.)

Being sick for long periods like this, often has me thinking about lung transplant surgery and how wonderful it would be, at least in my mind, to not have to struggle to breath all the time. This month also marks the one year anniversary of my initial SARP work up, and the infamous meeting of the minds over at UCSF. At that time we had all decided that my disease wasn’t severe enough to be considered for transplant, and even if I did meet the criteria, I had pretty much made up my mind at that time, that transplant surgery was something that I wasn’t interested in. Well that was then, this is now.

Here I am a year later, getting more breathless everyday and starting to seriously re-think my earlier decision. But wait… even if I were to change my mind and actively pursue lung transplant surgery as a treatment option, my current baseline FEV1 of 35% is still too high to qualify. And if I’m suffering this much in the mid 30′s, I can’t even imagine how bad it must feel to be even lower.

The fact is, most people on the transplant waiting list have FEV1′s in the 20′s and sometimes in the teens. The majority are also on supplemental oxygen 24/7, and some of the sickest people are even on ventilators while they wait for donor lungs. I only require oxygen when I’m actively flaring and my FEV1 rarely drops into the 20′s unless I’m really really sick and Ive always managed to bounce back. [This whole oxygen criteria thing shouldn't even apply to an asthmatic waiting for transplant. The pathology of asthma is much different that Cystic Fibrosis or COPD. Asthma is a disease of the airways, not the alveoli. Most asthmatics don't require supplemental O2 unless they're actively flaring].

I suppose I should thank my lucky stars that my FEV1 readings are still in the mid 30′s, and occasionally even into the 40′s, but as good as I have it in comparison to those waiting for new lungs, life in the the 30′s is not exactly a picnic. And the fact that my lung function has dropped almost 30% in 6 years, tells me that my numbers will only continue on that downward path. It’s not a matter of if they will drop into the 20′s, but when .

Living in the 30 percent range is like living in a kind of breathless purgatory. Your days are filled with this low-level dyspnea that doesn’t get too severe unless you’re flaring, but is always there in the background effecting everything you do and making you miserable. In the 30′s percent range your lung disease becomes so advanced that most conventional therapies or medications no longer work, yet you’re not quite sick enough to qualify for transplant. Now, if I had emphysema and had lots of air-trapping, I would be a perfect candidate for LVRS or airway stents. But, I don’t have emphysema, nor do I have the type of hyperinflation or air-trapping that could be helped with airway stents. I have severe asthma with fixed obstruction and there’s very little that science can do for people like me.

There’s another criteria for lung transplant surgery that creeps me out a little and even makes my doctor a little uneasy, and that is, the longevity issue. How long can I be expected to live if I do nothing? Ive had doctors give me predictions of as much 5 years all the way down to one year. In order to be a transplant candidate you have to have a life expectancy of 2 years or less. Most transplant centers base that prediction on a BODE score of 5 or more.Currently, my BODE score is a 4.

I know I should be grateful for all Ive achieved through fitness and pure stubbornness, but sometimes I feel like I’m being penalized for doing the right thing and staying in shape. Had I not done all these healthy things, my FEV1 would have surely declined faster, putting me in a position where Id be eligible for transplant by now. Let’s face it, not too many people with an FEV1 of 35% have completed 7 marathons. What’s really ironic though, is that transplant candidates are scored on their level of physical fitness. Transplant centers want people who will be healthy enough to survive the wait time, ( up to 4 years in some cases), the surgery and the recovery. The stronger you are going in, the better the results. How that’s possible with an FEV1 in the 20′s or teens is be beyond me, but that’s the way it is. I have the required physical and mental stamina now, but will I still have them when my other numbers finally catch up. And even if I do meet all the criteria, will it happen in time? Most institutions set the maximum age for lung transplants at 60, I’m 56.

So as I’m getting ready to finish the closing paragraph of this post, the “But” part of the title hits me in the head like a ton of bricks. Life sucks with an FEV1′s in the 30′s, but I’m not to the point yet where I dread waking up everyday. I’m not to the point where everything I do is a total struggle. I still have the occasional “good breathing day” (or “not so bad breathing day”, whichever way you want to look at it). I’m not ready yet to trade my lungs in for a pair that may, or may not give me more of those precious “good breathing days”. But most importantly, and regardless of all the other criteria, I know I’m not ready for a lung transplant, because I’m still questioning whether I can live without one. I’ll know Ive hit my rock bottom when I’m no longer able to walk and life is no longer worth living…it’s as simple as that! I can see now why they set the transplant bar so high. It’s meant as a last resort, not a treatment option. So on that note, I’ll stop crying poor me and get on with life.

And as far as predicting how long I’ll be able to continuing walking, who knows, but it sure would be cool to rack up 3 Bostons in a row, before throwing in the towel.

We all know what it’s like to be in asthma purgatory for a few days or maybe even a few weeks, but for 2 months? Geeze, cut me some slack would ya!
Seriously, except for a string of 6 days in the middle October when I still on high doses of pred, Ive been in the yellow zone almost continuously since the beginning of September. Just just check my peak flow records. (A year ago I was blowing 360′s)

I can’t figure out if I’m still flaring from the original exacerbation that landed me in the slammer back in September, or if this is a new exacerbation, or if my lung function is irreversibly declining because of so many exacerbations. Granted, I was pretty sick during that last hospitalization, and all the emotional crap that’s ensued probably hasn’t helped matters , but Ive been much sicker than this in the past ,and it didn’t take me nearly as long to recover. I’m really beginning to wonder if I ‘ll ever get back to where I was before I got sick.

Bumping up my pred dose would probably help improve my pfs and my breathing in general, but I’m hesitant to do so, because prednisone, as much as I hate it, is one of the last drugs I have left in my breathing arsenal. If I start getting dependent on higher and higher doses to keep my lung function up, I might not ever be able to come off it. At this stage of the game, that’s basically a death sentence for me.

The worse part for though, is not being able to get out there and exercise. I feel like a prisoner being held captive by my own disease. Held in kind of a white collar crime prison where you’re given some freedom, but not all. Sure, Im breathing well enough where I can do those really slow 2 mile evening walks, but as far as the real stuff goes? the workouts I really enjoy? the walks that are 5 miles or more? Well, I just get too short of breath, and without those longer walks, I can’t really train for any races, and well……just Get me outta Here!

PS…. One of the cool things about digital pf meters, is that you can upload the results to your computer, or in my case to something called the Microsoft Health vault, where you can analyze, trend and/or share the results with others.
If you wanted to impressive your Lung doctor, you could print out a report, complete with graphs and bring it with you to your next appointment. No more having to keep a written diary.

October has traditionally been a bad month for my asthma (and I’m sure I’m not alone on that), but this is the first time Ive been sick for most of September as well. No doubt about it… this has been a humdinger of a flare.

Ive been out of the hospital for an entire month now, and I still don’t feel like I’m any where near back to my old self. Frankly, I’m beginning to wonder if I ever will. This last exacerbation could very well have been the straw that broke the camels back. Maybe my luck has finally run out. Maybe this disease has finally caught up to me. We won’t go there just yet, but it’s a reality that I know I’m gonna have to face eventually.

Besides the physical discomfort of being constantly short of breath and just feeling worn out in general, lately I find myself getting emotionally upset over the silliest little things. It’s like all of my senses are on overload. I feel like I’m in a state of perpetual road-rage or something. I have no patience for anything or anyone. I lash out at the slightest provocation. This is not normal for me and I don’t like it.

At first I thought all this bitchiness was due to the steroids, but I haven’t been on high doses for a couple of weeks now. My doctor thinks I’m exhibiting the classic signs of PTSD (post traumatic stress disorder), probably caused from the intubation incident in the hospital. Whatever it is, I gotta get past it, because between my breathing problems and all this emotional turmoil, it’s making it doubly difficult for me to recover.

I just want all my friends to know that despite these difficult times, that I’m doing my best to maintain a positive outlook and that I’m trying to take things one day at a time. My blogging frequency might drop a little until I get a better handle on what’s going on with my health, but I’ll try to keep my sidebar updates current.

In the meantime, keep those Halloween guesses coming in. Only 10 days left until I announce the winner.

Oh, and Ive also been getting reports that this blog might be haunted. Has anyone seen anything peculiar on my blog lately? I think this whole Halloween thing is going to peoples heads.

You train hard and wait months in anticipation to accomplish a goal you’ve been aiming for, and then BAM! ….in a matter of hours, a severe asthma flare erases it all.
Sadly, it looks like I’m not going to be able to do next weekend’s “Urban Cow Half Marathon”.

To say I’m disappointed would be an understatement. Had I been able to do this race as planned, it would have been my 13th- 13.1 miler (half marathon), in just 5 years. That would have been very cool.

I was hoping that I might be able to pull off a last minute save and squeak through this race like Ive done in others in the past, but this last exacerbation did a bigger number on me than I thought and recovery has been excruciatingly slow. I’m just too short of breath and out of shape right now to walk 13 miles. Doing so would be reckless and stupid. I’d end up back in the slammer again for sure.

It’s not so much the missing out on the event itself that bothers me, as it is the wasted time and effort that went into the preparation of it. Many of the races I do are planned 4-6 months in advance. Time and physical well being are precious commodities to me and I hate wasting them. A crystal ball would sure be nice, wouldn’t it?

My next scheduled race, if I decide to do it, isn’t for another 6 months ( Boston Marathon). But who knows, maybe another race will pop-up before then in which everything clicks for a change. I think that would more than make up for this weeks disappointment.

On a brighter note, Ms Kerri finished her very first 10K race. I’m very proud of her for tackling her fears and going for it. You go girl!

I actually had something else prepared for this weeks post, but since there’s a good chance I’ll be heading to the slammer shortly, I thought Id do a quick update on what’s been happening.

If you’ve been watching my sidebar lately you probably noticed that my numbers have been all over the place. Ive been flaring for about a week now. On Thursday I bumped my pred up to 60 mg, and by the time the weekend rolled around I was starting to feel better. Since Sunday night though, and despite being on high dose pred, I’m started to get tight again. For the first time in more than 6 months, I woke up in my red zone. My sats are starting to drop as well and my joints are starting to ache, which is usually an indication that my CO2 is rising. In other words, I’m getting pooped out from breathing.

Not sure of the trigger this time, if any. It could be the season change. September and October have historically been bad months for my lungs. Ive also been really run down lately with a lot of muscle pain and difficulty sleeping, not sure what that’s about.

As luck would have it , my asthma started flaring at a time when I should have been wrapping up my training for my next scheduled race , which is only 2 weeks out. The 11 mile training walk that I did last week, which was supposed to be the longest and the most important training walk for this race, turned out to be a total disaster. Everything went wrong. I got way over heated, had constant GI problems, and my legs and shoulder muscles were throbbing in pain. My shoulder muscles hurt so bad during the last 3 miles, that I seriously considered catching a taxi cab the rest of the way.
I’m gonna give it one more shot later this week if I’m feeling better, but if that walk fails or I’m still sick or hospitalized, I’ll have to withdraw from the race.

In other news, I turned 56 this week( thanks everyone for all the greetings on Facebook), and on Saturday I withdrew from an Italian language class I was taking. It’s an advanced class and I just wasn’t prepared (and wasn’t feeling well). I’ll attempt it again in the winter semester.

Monday morning as I write this post, I’m holding my own, but if my numbers don’t turn around real quick, or if my O2 sats keep dropping, I’m gonna have to take my own advise and get my butt to the hospital. If by chance I do end up in the slammer today, I’ll try to get word out about my status

It sucks to have to write a post like this. Thanks for sticking by me.

Suffice it to say, I wasn’t exactly a happy camper when I wrote that last post about my little prison stint. I apologize for that. At the time, I was roided out of my mind and was still very sick. Dr W helped me get through this awful time by reassuring me that what anguish I was experiencing was a normal response after suffering such a severe flare up, and that my complaints were not really unique. (darn…seems the only thing unique about me or my asthma, is the number of times Ive been intubated)

But what a difference a few extra days can make. I think it was Thursday that I finally “Turned the corner”. As happens so many times when I think I’ll never recover from a severe exacerbation, I just woke up one morning and all of sudden…Wham! I was breathing better and feeling better. It’s as if whatever was causing my lungs to act up in the first place, just burned itself out and left my body.

It’s astonishing how fast the transformation can happen too. One minute you’re feeling crappy, the next you’re feeling fine. This probably sounds strange, but for a while there it actually felt kinda weird to be breathing easy. All day yesterday I caught myself conscientiously trying to analyze my own breathing to see if indeed I was breathing normal…or I was imagining it. No wheeze, no difficulty exhaling, no discomfort…just normal breathing! So weird, but so appreciated. Id give anything to be able to breath like this all the time. Healthy people take their breathing for granted.

So with this most recent revelation, and after having survived literally dozens of these types of exacerbations, I put all my observations together and made a list. Ive been able to identify 6 distinct phases that I go through during the recovery phase of a severe asthma exacerbation that required a hospital admission.

Just for fun I call it ” The Recuperative phases of a severe asthma exacerbation” . The word hospitalization is important here, because the recovery phase from a severe exacerbation that did not require hospitalization, doesn’t seem to follow the same pattern.

Here’s the list in the order of occurrence. Can anyone else relate or add to this?

So that’s my asthma recovery theory/ check list. I think every physician and/or RT or Nurse who takes care of severe asthmatic patients should familiarize themselves with this list to get a better insight as to what we actually go through AFTER we get out of the hospital.

I’m not totally out of the woods yet and I don’t want to jinx myself, but for the first time in 2 weeks, I actually feel like a human being again. I can breath!
To celebrate, I went ahead and got the first of those 3 goodies that I promised myself…..namely, a haircut! (Yikes…I look a little too str8 now). The new shoes and the Manilow Paris Las Vegas show tickets are in the mail.

You know with all the suffering that’s been going on in the world lately, I feel extremely fortunate in so many ways. I may have really bad asthma, but I also have access to some of the best medical care on the planet. I’m surrounded by caring people, and blessed with the support of others who know what’s it like to live with a chronic disease. I would say I’m pretty lucky and have very little to complain about.

And in case you haven’t heard, SARP is now on Facebook. And thanks to Kerri’s efforts, there’s also a Fan page.

So after each bad asthma exacerbation or flare-up, I feel compelled to write something about the recovery phase that follows. You would think that after going through this process more than a hundred times, that I would get use to it. You learn to deal with it a little better, but you never get used to it.
Better in some ways, and worse in others, the anatomy of this recovery is pretty typical. So far, this is how it’s been going……

Dyspnea : As with most of my post hospital recovery periods, days 5 and 6 have been the hardest to deal with in terms of being short of breath. I was breathing well for the first couple days after being discharged from the hospital, but then my dyspnea levels gradually crept back up again. Yesterday it was unbearable. A mixture of bronchospasm ,air-trapping, stomach bloating and humid weather, I felt like I was suffocating . I’m not sure what today will bring, but I hope things turn around soon as I’m starting to get to really tired of this.

Steroid Withdrawals : This time around they’ve been fairly mild. No major psychosis, just some mild muscle cramps, acne and mood swings. The main reason Ive been spared this time, is because my maximum dose in the hospital was only 60 mg per day. In previous hospitalizations, Ive been on as high as 300-500 mg per day, which can lead to weeks of intense withdrawals and even the potential to re-exacerbate. I have to thank Dr Wenzel for this one. She’s been pretty much able to prove, that high doses of steroids don’t do much for someone with my type of asthma. Currently on my taper, I’m down to 30mg.

Opiate Withdrawals: Next to the bouts of severe breathlessness, the worst problem Ive had to deal with this time, are opiate withdrawal symptoms. While I was in the hospital, I received a lot of IV narcotics for my dyspnea. And because I was on a ventilator this time, I received even more than I normally do. I was getting them almost every hour for the first 4 days and then about every 2-3 hours for the last 3 days. That figures out to more than 100 doses of intravenous Dilaudid and/or Fentanyl. That’s a lot of opiates to put in your body in just a 7 day period. And since I don’t take any of these more potent morphine-like drugs outside of the hospital, stopping them abruptly ( ie cold turkey), always causes me some pretty nasty withdrawal symptoms. Insomnia, nonstop chills/rigors, restless leg syndrome and muscle cramps, just to name a few. The symptoms gradually fade, but the first week can really be a bear.

Body Trauma and weakness: Laying in a hospital bed for a week, working really hard to get a breath, getting jabbed with needles and pumped with drugs and having a tube shoved in my wind pipe (and one in another place), has been pretty traumatic to this old body. I’m starting to feel all the aches from all the IV bruises and Im still weak as hell. You should see the welts left on my belly left from the Lovenox injections.

Looking forward to better days: No matter how bleak the situation seems during the first week of a rough recovery, I always try to focus on better days ahead. Consider this if you will; Yesterday, I could barely walk from my bedroom to the living room without getting totally winded, a distance of less than 10 meters. In just 13 weeks from now, I will attempt to walk 42 THOUSAND meters, at the Boston marathon. That means that between now and April, my endurance will have to increase 4000 fold! The way I feel right now, it seems an impossibility. Give me another week, and my outlook will probably be totally different.

Doing something special for myself: Finally, and maybe this is the selfish part of me, but if survive this exacerbation ,I plan to treat myself to a few goodies. This time, a haircut, a new pair of racing comps (shoes), and a ticket to Barry’s new show over at the Paris Las Vegas. Ok, so I’m a little spoiled.

Battle scars: 4 failed arterial line attempts and 12 failed IV attempts. I have no veins left and my radial arteries are so scarred up from previous insertions, that it’s virtually impossible to get access unless they put a central line in. Very frustrating for the doctors and very painful for me.

I’d been having vague flu like symptoms, such as stomach bloating and chills for about a week before my lungs started to act up. Less than 3 weeks earlier I had received the H1H1 vaccine as well as the regular annual flu shot, so the last thing on my mind is that I might actually be coming down with the flu.

By New Years Eve afternoon my peak flows started to trend downward, and by that evening they had dropped from 340 to 200. My sats fell from 97 to 89%. I was requiring neb treatments almost every hour and had considered going to the ER right then and there, but had decided against it because of it being New Years eve and all. I figured the hospitals would be jammed with New Years revelers , so I decided I would just try to tough it out till morning and then re-assess. Maybe by then I would feel better. After a horribly breathless and sleepless night spent next to the nebulizer machine, I figured I had had enough, bit the bullet and went to the ER.

As is usual for me, rather than being carted in or delivered by ambulance, I strolled into ER on foot. I told the triage Nurse what the problem was. She took down my name and asked if I was in serious distress at the moment ( since I never really look sick) , I said I was OK at the moment . She had me take a seat in the waiting room ( which by the way, was pretty much emptied at 11am). 5 minutes had past, then 10 minutes, and 30 , and still they had not called me in. By now it had been almost an hour since I had a breathing treatment and I was really starting to close up. I hate making a scene , but I thought I was going to pass out, so I stood up and walked back over the triage window. The Nurse took one look at me and said ” OH MY GOD .. You haven’t been seen yet??? I said no, and I think I’m going to pass out. Within 30 seconds I was on a gurney on my way to the resuscitation room . I didn’t actually pass out, but I sure prompted a lot of people into action. Before I knew it, I was on a continuous albuterol neb with people whirling around me trying to get IVs in. They asked the usual questions.. Have you ever been intubated? Before I could answer, one of the ER doctors recognized me and said “He’s a bad one….he’s been intubated a dozen times”
Within a record 30 minutes, the ICU team had completed their evaluation and I was on my way to the unit.

In the ICU they put me on the usual Bipap setting of 12/5 with 15mg/hr of Albuterol piped in. Because of my flu symptoms, they swabbed my nose with the rapid flu test, put me on droplet precautions and placed me in isolation, which means anyone coming in contact with me had to wear a mask and eye shields. Im sure the staff weren’t too please about that ( I know from personal experience what a pain it can be to work with a patient who is in isolation, especially a ventilator patient.)

For the first few hours, the bipap seemed like it was helping, my Sats had increased to 98% with an FIO2 of just 40%. Although I was saturating well, I was starting to feel that all familiar ache that I feel when my CO2 starts to climb. After several unsuccessful attempts at placing an Arterial-line ( which hurt like hell), they finally gave up and resorted to doing individual ABG draws.

(My Hannibal Lecter look before Intubation)

I had now been on bipap for about 4 hours and my PCo2 was starting to climb. The first PCO2 came back at 43, but I was on bipap and my resp rate was in 50s ( this is not a good sign). An hour later my PCO2 was 60. A half hour after that, it was 66 and my Ph 7.29 . It was time for the intubation talk. Rather than himming and hawing about how long to wait, this time I told them straight up, just intubate when you think Ive had enough. They agreed, and 30 minutes later it was lights out for me. 14 hours later I woke up with a tube down my windpipe.

Just a few hours later I was extubated and talking up a storm …or should I say cuzzing up a storm. Why was I not kept down longer? Why didn’t they use propofol to sedate me. Why were the RTs being so rude to me this time?

The anesthesiologist had promised me that they were going to use propofol and keep me asleep for at least 48 hours, but it turns out that I had the same weird reaction to propofol as I did during the previous intubation. Something called “infusion syndrome“,so they had to stop giving it to me. They thought it was strange, because propofol infusion syndrome usually occurs in people who are sedated for several days.
For that reason they had to use Versed and Fentanyl instead of propofol to keep me sedated, making it much harder to keep me asleep. At one point I actually remember walking up “paralyzed” and unable to move or communicate. Apparently they had not sedated me enough and I woke up before the paralytic agent (a drug they use when they insert the tube) wore off. Talk about a horrible experience. Nothing like being a zombie. In total, I was on the ventilator for less than 2 days.

After being extubated the RT gave me the choice of using the continuous neb or the bipap…. of course I chose the neb. I did Ok for about an hour , but then once again ,my PCO2 started to climb. Not happy with my recent ABGs, the RT comes into the room accusing me of causing this spike in my CO2, because of not following her instructions of using the bipap. WHAT THE F!
Since when is the patient suppose to decide what type of therapy he gets? Even an RT/ patient deserves someone else to call the shots when he’s sick. I didn’t like her attitude and I told her. The next thing I know, she sends in her supervisor who starts patronizing me. He says to me…” your Ph is 7.30 and your CO2 is climbing again. If you want , I can help you correct it. If you’re not willing to help,then there’s nothing I can do for you. WHAT THE F AGAIN? What’s with the all the attitude. Evey one was nice to me before I got exubated. What did I do?

I was so pissed off I wanted to scream, but I figured that they would treat me better if I did what they wanted. So I just sucked it up and did what they asked. The male RT set me up on what they call “non-Invasive” ventilation. It’s basically where they hook you up to a ventilator with a mask instead of an endotracheal tube. Its just a fancy way to give Bipap. He also encouraged me to play with the ventilator settings , so that I could adjust it the way I wanted. ( Remember, I’m an RT. I know how to operate ventilators). At this point I couldn’t figure out if he was making fun of me, or if he appreciated the fact that I was trying to play ball with him and cooperate. In any case, his act of showing a little kindness paid off, and within a short time my ABGs were stabilized and everyone was happy, including myself.

12 hours later I was strong enough to breath on my own and they were able to discontinue the breathing machine entirely. So, what was up with all the attitude they were directing my way? ( more about that later)

I have now been in the hospital for 3 days, been on and off the ventilator, and was starting to breath a little better. The Rapid flu antigen test came back negative, but because the test is only 50% accurate, they decided to do the more sensitive test for swine flu. That test takes 6 days and had to be send the to state for processing. What this basically meant, is that even if the test was negative, I would be spending the rest of my hospital stay in isolation. I really didn’t mind because it assured me a private room my entire hospital stay.

On Day 4 I was deemed stable enough to be transferred to the step down unit, where I stayed until my discharge 3 days later. While there , I was placed back on a continuous albuterol neb, but this time the dose was decreased to 5 mg per hour.I did fine on that , but began coughing much more than I usually do. My biggest complaint was the congested nose and the unrelenting chills from whatever virus I had. Eventually , my chest became congested as well. I was able to cough up some gunk , which they analyzed in the lab. Seems on top of this virus from hell, I also had a bacterial infection brewing and now had bronchitis. The next morning they started me on Doxycycline and decided to keep me in the hospital an extra day. On Friday I still felt like crap, but was home sick and convinced them that I felt well enough to go home.

I am not an anxious person, unless I’m suffocating to death. I can see now though, that my requests for painkillers to make my breathing easier, would probably account for why some of the doctors were acting weird around me. On more than one occasion, I has some of the doctors trying to convince me that I should try some long acting anti depressants and/or anti -anxiety meds, instead of opiates to manage my dyspnea. They also gave me a list of referral to various specialists who supposedly deal with dyspnea management ( all of whom, Id seen in the past without success). I reminded her, that I was taking opiates on the recommendation of one of UCSFs own highly acclaimed palliative care doctors.
In the end, I basically told her that we had been down this road many times before, and I that I refuse to discuss the matter any further. It’s my life, and if I choose to take opiates during bouts of severe breathlessness, that’s my choice, and it should in no way, change how I am treated during an active severe asthma exacerbation. Case closed!

Dont get me wrong, I’m grateful, and for the most part , satisfied with the medical care I received during this hospital stay. There were a lot of good things that happened as well. For example, for the first time ever, the doctors actually granted my request to not exceed 60 mg per day of Solumedrol or prednisone, which really helped.

Bottom line…Much like a credit report, incorrect statements or diagnosis that end up in your chart , can have a negative effect on the type of medical care you receive for years to come. I think this is especially true when it comes to medically complex patients (such as severe asthmatics.) A lot of this misinformation could be avoided if physicians were allowed to follow their patients in the hospital. Of course, that’s not likely to happen.

On asthma severity scale of 1-10, this probably only ranks a 6 or 7, though having the flu at the same made it feel like a 10. Number 97 is behind me now, but I still have a long recovery ahead. It will take me weeks to regain the strength I lost in just one week of illness. As Ive said before, the aftermath of a severe asthma exacerbation is often more difficult to deal with than the actual attack itself.
It often takes several days after the hospitalization before you start feeling the trauma of what your body has been through. Being jabbed dozens of time with needles and catheters. Lack of sleep, sensory overload, having a hose shoved down your windpipe, being place on artificial life support. And then of course , there’s all those potent drugs. All these catch up with you. Yes, the recovery is often the worse than the treatment.

If there are any bright spots to this other wise crappy week, it would be the wonderful Nurses I encountered in both the ICU and Step down units who have taken care of me many times. They are angels.

And finally, a special thank you and hug for Kerri and Dr Wenzel who took the time to check up on me everyday while I was in the hospital via telephone. Dr Wenzel recommended that they do a PFT on me for discharging me,..and they actually did it! Now, that’s what I call clout!

PS…In all fairness, the RTs in question were new to me . I had never worked with them before. Maybe they weren’t aware of my little quirks, but it still doesn’t give them the right to treat me like a 2 year old. As far as some of the physicians concerns, I suppose they were justified, I just wish they would talk to me before rushing to conclusions.

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!

A lot of attention is focused on what goes on during a severe asthma exacerbation, but very little about what occurs after. What a lot of people ( and even some physicians ) don’t often realize, is that once the initial asthma crisis is over, the party has only just begun. There’s a perception that once you get past the acute phase of an asthma exacerbation, that your breathing rapidly returns to normal and everything is fine again. Well, that may be true in a very small percentage of asthmatics, but for severe chronic lungers like myself, the reality is much different. No matter how many of these severe exacerbations I go through, (and believe me, Ive been through a lot of them), it’s always the post hospital recovery period that’s the most difficult for me.

When you suffer an asthma attack that is severe enough to warrant hospitalization, once that critical acute phase is over , there’s also a recovery phase that you have to deal with. Though not as dramatic, can nevertheless make you feel just as miserable as the initial attack and can last twice as long!
You just don’t walk out of the hospital after a bad exacerbation and go about your business as if nothing ever happening. A severe asthma exacerbation and all the medications and interventions used to treat it, can reek all kinds of other havoc on your body, leaving you weak and breathless for days and weeks after the initial assault.There’s also an accumulative effect, whereby each subsequent exacerbation takes that much longer to recover from.

The length and severity of this recovery phase varies for everybody. For me, it’s usually determined by how severe the initial attack was, how many days I spent in the hospital,and how many steroids they had me on at the time of discharge. Generally, the longer the hospitalization and the higher the steroid dose, the longer it will take me to fully recover. Age and overall health play a role as well I’m sure.

Of course I’m grateful for the medical care I receive in that big building on the hill, but if you think about it, all they really do for you in the hospital, is stabilize you enough so that hopefully you won’t die. There’s no actual concern about “how you’re feeling” as long as your numbers are survivable. Once you’re over the hump clinically, you’re booted out and basically left to fend for yourself. There are no Nurses, Doctors or Respiratory Therapists to hold your hands or monitor your progress after you leave the hospital (unless of course, you live with one). At best, you might have a follow-up a appointment with your doctor a couple weeks down the road , but by then you’ll probably be back to normal ,which kind of negates the whole purpose of such an appointment.

Still, after going through this a million times, I consider myself lucky. There are some poor souls out there who’s asthma is so severe, that they never fully recover from their exacerbations. They are in a state of perpetual exacerbation and recovery. They are never symptom free. These are the people I feel for the most.

Maybe I’m asking too much, but I really think its important to have some kind of ” immediate” post hospital follow-up care for severe asthmatics. Even a phone call to see how you’re doing would help. Some of the Kaiser hospitals, to their credit, already do this.

Addendum : 4 hours after publishing this post, I actually received a phone call to see how I was doing. Not by the hospital personnel as you would expect, but from an understanding case worker from the insurance company . Needless to say, I was pleasantly surprised. The folks at Brown and Toland have their act together.

I’m not slamming any particular health organization or hospital for the lack of follow up care options for severe asthmatics, I’m just trying to bring attention to the fact, that there is often a prolonged and difficult recovery phase following an asthma hospitalization.
I have a pretty strong support network ( ie..this blog) , but many severe asthmatics don’t.

If this topic interests you, here are a few other posts Ive written in the past.

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.

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.

…………..As in my 94th hospital admission for asthma.

I had been feeling really crumby most of that weekend prior. My dyspnea was increasing and my peak flows were gradually trending downward. By Sunday evening it was pretty evident that this flare-up was getting worse , not better. I bolused myself with 60mg prednisone and decided I would try to tough it out another 24 hours in order to give the steroids a chance to kick in.

On Monday morning I woke up lethargic and more breathless than the night before. My peak flows were now below 200 (my red-zone) and the neb treatments weren’t helping anymore. By early that afternoon I was starting to get really uncomfortable and fidgety ( this is usually a sure sign that my CO2 is rising), so I decided to call it a day and headed to the hospital. At 2 pm my partner dropped me off in front of UCSF Emergency room . The next time I saw him, was 24 hours later after waking up on a ventilator.

We’ll start the gore fest with a little footage I took with my phone while I was in the ER. My Hannibal Lecter look (as Dave McGovern, my racewalking coach, so kindly puts it). It’s actually called Bipap, which is basically a machine that pushes air into your lungs and then holds that pressure in your airways through out the breathing cycle. The Bipap wasn’t cutting it though, and 8 hours later I ended up on a Ventilator.

Rewind to Monday afternoon: I high tail it to the UCSF Emergency (my home away from home) where they proceed to give me the usual continuous Albuterol nebs at 20 mg/hr along with Bipap set at 10/5. While there I received additional IV steroids, Mag Sulfate and a host of other asthma remedies. The first ABG results came back marginal , with subsequent gases getting gradually worse .My oxygen saturation was OK , but my CO2 was starting to climb. After a 6 hour stint in the ER, I was assessed by the ICU medical team and immediately transferred to the new 13th floor medical ICU , where they continued me on the Bipap, this time adding Heliox. They attempted multiple times to insert an arterial line in my wrists , but were unsuccessful. For the time being they would monitor my respiratory status using other means.

Over the next few hours, I was asked repeatedly by the doctors, if I thought I was tiring out ( something they always ask ), and each time I would respond to the negative, telling them, that at least for the time being, I felt like I was holding my own and did not want to be intubated. 6 hours later, despite being on continuous albuterol and bipap support, I was starting to poop out and finally caved in to their request. I was intubated at 2:30 am Tuesday morning.

The next thing I remember ( which turned out to be 14 hours later), was waking up with a tube shoved down my throat, gasping for air!
I have never experienced that degree of suffocation in my life. I was attached to the ventilator,yet..I couldn’t breath. Ive been intubated and ventilated many many times for severe asthma, but usually they keep me asleep for a couple days until the attack subsides. This was the first time Ive actually woken up on the ventilator during the peak of an attack. For the first time in a long time, I thought I was actually going to die. I remember hearing them saying ” you need to relax” ..and I can remember thinking..” you guys are going to kill me” … ” I can’t breath” . I thought something was wrong with the ventilator, but it turns out that it was my lungs that were all messed up.

My response to treatment, thus far, seemed to be making a lot of the doctors nervous. There was pandemonium in the room with doctors rushing in and out and nurses trying frantically to calm me down so that I wouldn’t self extubate. They finally gave a me a pen and paper on a clipboard to communicate with. I kept writing..” I can’t breath” . On more than one occasion, the feeling of suffocation got so bad ,that I had to disconnect myself from the ventilator just to get a breath of fresh air. Of course, all the alarms went off and RT got really upset with me.

The secretions in my lungs weren’t making things any better. All the junk that had accumulated in my chest was making it even more difficult to breath. You could hear me gurgling every time I took a breath. Being an RT, I knew how to self suction. You should have seen the look on their faces when I started to suction myself.! I(and they) were suctioning gobs and gobs of the grossest phlegm you can imagine. Dark reddish brown color with the consistency of jello instant pudding.

Anyway, this nightmare of falling asleep and then waking up in a sitting position to find myself drowning in secretions, seemed to go on forever. Every time I got to the brink of wanting to rip the tube out of my throat, they would sedate me with Verced , and the cycle would start all over again. I would be out for an hour, and then I would wake up suffocating again. It was like the worse nightmare you could imagine. It was like hurdling down a long dark tunnel, and then suddenly, I would burst into conscientiousness ,waking up with a huge GASP. I was so miserable, I just wanted to die.

While all this was going on, I also experienced an episode of temporary blindness. Every time I would open my eyes, all I could see was a bright blinding light. I could make out silhouettes , but I couldn’t see people faces. It was really weird. They got worried about this new development and immediately called in an eye doctor to check me out. He couldn’t find anything obvious on his exam. He said it might have had something to do with pressure on the optic nerve. Thankfully the problem subsided and my eyesight came back.

So why on earth was I not sedated and kept asleep to begin with? Well, it turns out that I may have had a rare , but potentially serious reaction to the drug that they normally use to keep intubated patients asleep. The drug is called Propofol and it’s probably the #1 mostly used anesthetic in the world. It’s a wonderful drug, because you can basically turn on or off someone’s conscienceness like you’re turning on a light switch. It works super fast. It’s routinely used to keep intubated patients asleep, so that they don’t fight the ventilator like I was. When you want them to wake up, you simply stop the infusion. You wake up instantly. Works great when you want to wean someone off a ventilator. Though Ive been on this drug many times over the years, for some reason, my body wasn’t liking it this time and I began developing a lactic acidosis ( where your blood gets really acidic due to muscle breakdown.) My CKs and lactate levels were also getting really high. After ruling everything else out ( including too much albuterol , which can cause a similar problem), they concluded that it must had been the Propofol and immediately stopped the infusion. As an alternative ,they had to use a drug called Verced to sedate me. A nice drug for relaxing you , but not really designed to keep someone under for long periods.

Here are a few pics my partner took of me gorked out on the vent. There’s a good shot of the ventilator settings for you RTs out there. ( One of my ex co-worker/ RT friends, saw the pics on Facebook and noticed that the vent was in the weaning mode)

Finally after 2 days of pure hell, they decided that it was probably better to take me off the ventilator and let me breath on my own, rather than risk me blowing out a lung because of all the fighting I was doing on the ventilator. ( I’m just guessing that’s what they were thinking..I don’t know for sure).

Day 4, I’m now off the ventilator breathing pretty well and my blood gases have returned to normal. As the day progresses I start to get this strong urge to use the bathroom. I already had a catheter in me to handle number 1, but now, I had to go number two! After not going for 4 days I guess it was no big surprise that I would eventually have to go, but I wasn’t prepared for for what was about to happen.
Unfortunately, UCSFs new 13th floor ICU doesn’t have toilets in the patient rooms, so for the first time in more than 20 years I had to use a bedpan! But, if that wasn’t bad enough, I had the worse case of diarrhea and cramps you can imagine. I don’t think it bothered the Nurses, but it sure bothered me. I was hating life! For the next 2 1/2 days, my lower gut was in knots and the nausea and cramps that followed were unrelenting. They eventually set me up with a bedside commode ( basically a toilet on wheels), but with all the wires and tubes that were attached to my body, it took at 2 nurses and a physical therapist to get me from the bed to the commode. And guess what? Someone has to empty the commode. How embarrassing. On that first day , I went 5 times, on the 2nd day , 4 times ! ( You have to remember, I hadn’t eaten anything in the previous 5 days, so where this was all coming from I don’t know). Apparently , on top of all the other drug reactions, I was now having a reaction to all the antibiotics and all the other drugs they were pumping into me. To be on the safe side, they decided to put me in isolation for C-diff precautions.

By Friday afternoon the stomach cramps were diminishing in intensity and my breathing was much better, so they transferred me out of the unit to a private room ( thanks to my isolation order) in the step-down unit ….with a private toilet…YEAHH . My C-Diff test eventually came back negative.

Things were looking up. The only problem I had to address before going home , were my swollen ankles and my oxygenation level. Because I had no IV access in my arms, earlier in my stay they had to place multiple IVs in my feet. Normally this wouldn’t have been a big deal, (Ive had IVs in my feet before) , but this time because of all the fluids I received, somehow the vein in my foot must have blown , so some of the fluids that were supposed to go in my veins actually ended up in the tissue surrounding my right ankle. As a result , this caused my foot to arch downward ( what they call foot drop).
When I was finally strong enough to get out of bed, just standing up was painful because it forced my feet to flex back to the normal position. For the next 2 days, I did multiple short walks , and when I was in bed, I propped my feet up with pillows and iced my ankles which really helped a lot.

The very last challenge I had to meet before being discharged home, was being able to walk without desaturating. On my first attempt at walking down the hallway, my sat went from 95 to 79% in 2 minutes. After doing several more walks I was only desating down to 85%, but this was not acceptable to them. After a lot of coaxing and a threat of not being discharged, I agreed to go home on Oxygen until I got better. On Sunday afternoon at 2pm, almost 7 days to the minute, my 94th sentence was commuted and I was released on good behavior.

This was a tough one, but I’m thankful that I got through it, more or less in tack. I have a lot of hard times ahead of me,because the hardest part of this exacerbation actually begins now. For the next two weeks I’ll be fighting off the prednisone withdrawal symptoms and trying to regain some of my strength. Months of fitness conditioning and endurance building were wiped out in just a single week in the hospital. Then again…. all that conditioning is probably the reason I’m still around to blog about it.

I’d like to thank the following people for putting up with my shit (literally) and for treating me like a human being instead of a medical oddity;
Dr. Erika Moseson, Dr. Daniels, and all the other interns and residents who helped save my life…..again.
Also to ICU nurse James, and TCU Nurse Jen O.

I’m still in a Boston, but unfortunately in Hospital. I’m doing well enough to be discharged tomorrow or at least transferred to my local prison.

Some friends turned me on to these media clips.

Boston.com
Boston Globe

BTW…I got my medal ! ( they actually delivered it to the hospital)how cool is that!

It’s gonna take me some time to recuperate, but I hope to have a race report up within the next week.

Again, thanks for all the comments and well wishes..it’s means a lot to me. Boston was awesome!

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 was an asthmatic, 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 some kind of a lunatic or something. 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 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 latest 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.

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 the 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 best 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 fatigue 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 wears 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 it.   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 I’m breathing well and I get sick 24 later.  But then I walk when I’m 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.