Over the years Ive built up a pretty loyal following of friends who are interested in what Ive been up to and how I’m doing health wise , but the bulk of visitors to this blog still get here while searching for answers to asthma related questions or topics. The following (in order of popularity) are the top 3 internet search phrases that bring people to my blog. If you’re one of those people, let me help make your life easier by answering those questions for you right now.

1) Recovering from a Severe asthma Exacerbation

Ive written extensively on this topic from personal experience, but this is probably my favorite post on the subject.
The Recuperative phases of a severe asthma exacerbation

2) Can you have a normal O2 sat during an asthma flare?

This is another question that pops all the time, not only in the Google searches that brings people to this blog, but also in my asthma support groups and in private emails. So here’s the short answer:
YES , you most certainly can have a normal or near normal oxygen saturation during an asthma flare up. Asthma is a disease of the airways, NOT the alveoli ( air sacs) where oxygen exchange takes place. In fact, if you’re O2 saturation is low during an attack, this can be an ominous sign. O2 saturation is usually the last things to drop during an asthma flare. Having said that an asthmatic who had a low O2 sat is probably sicker than someone who has a higher sat. Regardless of someones O2 sat, an even more important indicator of respiratory failure is an elevated CO2 level( carbon dioxide). When in doubt, an ABG should be obtained. Here’s an article I wrote about oximeters and O2 sats
Btw, if you’re searching for answers to this question, you’re probably either a physician or a healthcare worker who has encountered a patient like this, OR, you’re an asthmatic who is trying to justify whether they are sick enough to warrant hospital care. Am I right?

3) Hospital Bills for Asthma

With over 100 hospitalizations for asthma during my life time, I know a thing or two about hospital bills. Thankfully Ive been fortunate enough to have fairly good medical insurance that covers most of my medical expenses. Asthma, especially severe asthma, is an extremely expensive disease and accounts for a large chunk of this countries healthcare costs.
The typical 7-10 day hospital for me averages about $180,000. That’s enough to by a small house here in the SF bay area. An ICU bed alone can cost $22,000 per DAY! and that doesn’t include any of the medications or treatments. In the past 3 years alone, my medical bills have exceeded $1 million. This is just one of the many posts Ive written about the topic. It’s getting expensive to stay alive

So what brings you here today?

The photo is from the movie “Awake” , but what happened to me last September was not fiction. It was the real deal.
I’ll share with you now, what I couldn’t 9 months ago because of pending legal action. Ive since withdrawn my lawsuit against the parties involved and am now free to talk openly about it. I think it’s important that my story be told, as it may comfort others who have been through similar experiences.

Back on Sept 20th of 2010, I was admitted to the hospital for a severe asthma exacerbation(so what else is new). About 8 hours into the exacerbation, my breathing took a turn for the worse and a decision was made to intubate me and put me on a ventilator. No big deal. Ive been intubated many times. They knock you out, stick a breathing down your throat, put you on a ventilator and usually by the time you wake up you’re breathing a little better. That’s what’s supposed to happen, but that’s NOT what happened this time.
For some reason when they knocked me out, I didn’t fall asleep. That’s right, I was awake during the entire intubation and subsequent placement on the ventilator. I felt and heard everything !

How is that possible you say?
Normally when they intubate a bad asthmatic, they use a combination of drugs, one to sedate you so that you fall into a deep sleep and another one that temporarily paralyzes all the muscles in your body to make it easier for them to insert the breathing tube and ventilate your lungs. Well for some reason, the “sedation” part of this intubation drug cocktail didn’t get into my bloodstream, so I never fell asleep. I was paralyzed, but fully AWAKE…..and no one knew it, except me. I was trapped in my body and couldn’t move a muscle to alert anyone.

Words cannot describe what it’s like to be completely paralyzed while having a plastic tube shoved down your wind pipe during the middle of a severe asthma attack… and not be able to react to it! To say it was a living hell, doesn’t do it justice. It was like being buried alive with a thousand pounds of dirt on top of you. I have a huge tolerance for respiratory discomfort, but the feeling of suffocation I felt at that moment was indescribable. You feel like you’re drowning, but can’t move a muscle to save your life. The sense of helplessness and terror you experience is overwhelming, and made a thousand times worse, because you know there are people just inches away from people who could help, but who don’t know there’s even a problem. I tried non-stop with all my might to move my fingers and toes in an attempt to catch someones attention, but to know avail. I could hear and feel everything that was happening to me. I could even see the shadows of people moving around me through my closed eyelids. What seemed like an eternity turned out to be only 22 minutes, but it was the most terrifying and agonizing 22 minutes of my life. There were moments that I pleaded with god to please let me die, so that I could escape the torture. I just wanted my brain to shut off.

And if the horrible feeling of suffocation wasn’t bad enough, there were also the episodes of excruciating pain to deal with. You see it’s standard practice in most ICUs that when a person is intubated and placed on a ventilator, that they also get a Foley catheter ( urinary catheter) inserted into their bladder. Normally not big deal, but for some reason the guy who was trying putting the catheter in me kept encountering resistance or a blockage of some kind. I could heard him talking to another nurse telling her that he was having a hard time getting the catheter in. So to overcome the obstruction he starts FORCING it in! He keeps pushing it harder and harder until it finally passes through whatever obstruction was there. It felt like someone was shoving an an icepick up my urethra.

Simultaneously , I could feel the all too familiar probing of an arterial line needle inside my wrist, as they were apparently trying to insert a second arterial line. They must have inadvertently hit my radial nerve, because all of a sudden it felt like a jolt of electricity split my chest wide open. The pain was so intense I thought I was going to have a heart attack. A few moments later I could hear panic in the voices of the people around people. The alarms on the cardiac monitor were going off and I could feel people brushing against me. and saying things like.. “Something’s wrong!”….”He’s Crashing!”…..” I don’t think he’s Sedated enough!”. Hearing those words I thought to myself, wow..maybe they finally figured that Im awake in here. For a few brief moments I thought this nightmare was coming to an end. I could even sense that I was regaining a little bit of muscle use, because I was able to wiggle my baby toe. I could then hear one of the doctors say…”He needs more sedation!” I thought to myself, they’re finally gonna put me out of my misery. I’ll be going to sleep shortly. ( I found out later that my systolic blood pressure was close to 300)

So then I can feel them injecting some medication into my foot IV, but as they’re pushing the drug into the IV port , I start to feel a burning sensation around the vein. Sure enough, the vein had blown and the medication that was supposed to be going into my vein was going into the surrounding tissue. I’m thinking …Oh my god, they think the medication is going into my bloodstream, but it’s not. They think they are sedating me , but they’re not. I was in so much despair at that point that I was actually crying and screaming with laughter inside my head. Is this some kind of a cruel joke? How could God let anyone be tortured like this. Will this horrible nightmare ever end? I kept thinking that if I actually did die, no one will ever know the hell I went through in the minutes before.

Then mercifully and almost miraculous , I started to feel the paralytic drug loose its effect and I was actually able to wiggle my toes and fingers a little, which caught a nurses attention. I could here the shock in her voice…”He’s awake!” said. A few seconds later I lost consciousness.

My next memory is of waking up periodically , still intubated and still on the ventilator and trying to alert someone of what had happened earlier. I had been asleep for about 12 hours since the event. The paralytic drug had long sense worn off and I was able to move all of my extremities again, but I still had the breathing tube in, so I couldn’t speak. They knew I was anxious about something because I kept setting off the ventilator alarms and motioning with my hands. Eventually one of the Nurses gave me a pen and paper to communicate with. Well, either they couldn’t read my writing or they thought I was just agitated from being on the ventilator, but for whatever reason I couldn’t get them to understand what I was trying to say. Frustrated, anxious and fearing that they would paralyze me again, I started to pull on my breathing tube, threatening to pull it all the way out. They decided that it would be safer just to extubate me. An hour later, they did just that.

Needless to say I was pretty stressed out. I was still very short of breath from the asthma and the memory of being tortured and buried alive was making my breathing worse. I had my cell phone with me an I was frantically calling and texting everyone I could think of. I just wanted someone to listen to me. I pleaded with everyone who entered my room, to please hear me out….I WAS AWAKE!! I kept saying it over and over again. One of the Nurses who was actually on duty the night I was intubated told me, she thought something was wrong, because my vital signs were going crazy. She also told me that they had a difficult time getting IVs into me and the Foley catheter. I said, I know..I know… I WAS THERE!! She along with others , including a supervising nurse, admitted to me that “mistakes” had been made. ( Documents that I later received, proved these people correct).

Anyway, later that day still angry and not satisfied that none of the doctors would talk to me about what had happened, I began threatening to yank out all of my IV’s, walk out of the hospital against medical advise and sue them for malpractice. Finally ,one of the doctors who was present during my intubation agreed to talk to me about it. Rather than offer any apologies or sympathies for the hell Id been through, she basically blamed the whole situation on the fact that they couldn’t give me the drug they wanted to (propofol,) because they had read in my chart that I was allergic to it. She explained that they had to use less effective sedation drugs like Presidex and Versed and that I probably just dreamt the whole thing. Of course her statements made me even more furious. I’m not stupid, I told her. I was awake and was even able to recite statements that I heard her say while I was supposedly asleep. Still she insisted it was just a bad dream.

Two days later I was transferred out of the ICU in to the step down unit. Angry, stressed out of my mind, and still reliving the nightmare, they sent a couple psychologists in to evaluate me. They determined that I was suffering from PTDS as a result of the incident and recommended that I seek continued counseling after leaving the hospital. Finally on the morning of my discharge, the hospital administrator and the head of Anesthesiology finally came to my room and offered their apologies. They’re exact words were ” We’re sorry this happened to you”. “This sort of thing is extremely rare, but it does happen”..We’re so sorry”.

It was now the weekend and I was finally home and way from that hell hole, but all the emotional stress of the last few days had caused my asthma to re-flare to the point where I need to be re-hospitalized. Afraid to go back to the same hospital for fear of being intubated again, I went to a different hospital and told them that if I got really bad or if I stopped breathing, that I did not want to be intubated or receive any form of CPR. Fortunately, they got my breathing back under control fairly quickly and after just one day in the ICU and 2 days in the medical ward, I was well enough to go home…again. Before leaving the hospital, I told the doctors what had happened to me at the other hospital. They were very sympathetic, but were also worried that my decision to make myself a DNR ( do not resuscitate) was made based on what had happened to me at the other hospital. They let me know that as tragic and unfortunate as it was, it was just a fluke, a mistake, and not worth making myself a DNR over. I knew they were right and knew I had to seek counseling.

The next couple of weeks were very difficult for me, both mentally and physically. Not only was I suffering from a very severe depression, but my body was still recovering from the asthma itself. I was reliving the nightmare at least 20 times a day, which of course was making my asthma recovery even more difficult. I was starting to withdrawal from people and the activities that I normally like to do. It was like I was in a constant state of road rage. The slightest thing seemed to piss me off.

Finally I got up the courage to seek outside counseling and contacted the psychologist that the inpatient shrinks had recommended. The first few sessions with her were difficult because her office was located only 50 yards from the ICU where the incident occurred. Talking about the incident was even harder, because that meant I had to re-live it again. As the weeks and months went by however, it became easier to talk about it and my PTSD symptoms got easier to live with. She had given me tools to help diffuse the “bomb”, if you will, that would go off on my brain anytime a memory of the event was triggered.

Shortly after I began seeing the shrink, I filed a complaint with hospital itself and also with the State. As expected the hospital’s Patient Relations department investigation findings, showed no wrong doing on the hospitals part. Nevertheless, and knowing that I was severely and psychologically harmed by this event, I contacted a medical malpractice attorney who agreed to take my case.

It took almost 6 months of therapy and a bunch of other distractions in my life ( like my methadone withdrawals adventure and training for the Boston marathon), but finally I was at a point where felt like I wasn’t loosing my mind anymore. The thoughtof ever having to be intubated again for my asthma no longer seem like a death sentence.

I guess I should thank my lucky stars that I was wasn’t having abdominal surgery or something , as I’m sure the outcome would have been much worse. But what I went though still haunts me and despite all the therapy Ive been through, not a single day goes by that I don’t re-live at least small parts of the event. The difference now is that I know when my brain is messing with me and Im better able quash the bad memories before they suck me all the way in.

You have to remember..I’m an RT. Ive worked in and around ICUs for decades. I know what goes on in them. I know that mistakes are sometimes made and sometimes even covered up. All these people had to do was man up. All they had to do was acknowledge that they screwed up, or that a mistake was made and then apologize. Instead, they blamed it on me because of a supposed allergy to Propofol, OR that I just thought that I was awake. I was just as awake then, as I am now. Anesthesia doesn’t always work the way it’s supposed to.

If you’re wondering why I withdrew my lawsuit, there were actually two reasons. The first one was kind of a self preservation thing. I didn’t want to keep reliving the horrible memories, which Ive tried so hard to put behind me. The second reason ( and one I really struggled with) was the notion of punishing people who were actually trying to save my life. It was not their intention to harm me, nevertheless they did. Mistakes were made and I suffered a lot, but I got through it pretty much intact. For what little compensation I would have received from a lawsuit judgement, in the end it just wasn’t worth it to me. Don’t get me wrong, I had a very strong case and legal team and and am very confident that I would have prevailed, but what would I have really gained? I would have never been able to receive care again at an otherwise stellar medical institution. I would have been labeled as someone who like to sue..etc etc. Instead, I elected to take the high road and get on with my life.

In closing Id just like to say to those reading this who have asthma themselves; hopefully you’ll never be in a situation where your asthma gets so bad that you need to be intubated in the first place. But if you do, don’t let my story freak you out. Though there are always risks involved with any type anesthesia or intubation, the odds of going through what I went through are extremely rare and the benefits will almost always outweigh the risks. Intubation can often mean the difference between life and death for a severe asthmatic. Most people who are at the point of needing an emergent intubation are usually too out of it to realize what’s going on anyway.

Post script…..To show how far Ive come in just 9 months. On May 25th of this year, during yet another severe asthma exacerbation, I faced my fears and went back to the very same hospital for treatment. I ended up in the same ICU and had to be intubated AGAIN. I made it clear to all the doctors taking care of me that I was scared to death because of what had happened to me the last time. This time, everything went smoothly, they put me into a deep sleep and didn’t feel a thing. I didn’t even have a sore throat afterwards, which I usually do.

The idea for this post came to me during the middle a recent severe exacerbation. Actually, it was the same exacerbation that put me in the hospital for 12 days, for which I am still recovering.

Foremost on my mind during one of these really bad flares is the question….how bad will it get? Is this exacerbation going to escalate to the point where I need hospital care? If I don’t go in, will this be the one that kills me? After all, 5,000 people in this country still die every year from asthma. Many of them before they get to a hospital.

Like most severe asthmatics, I tend to downplay or ignore the severity of my symptoms for as long as possible, because I know what’s in store for me if I end up in the slammer. But in doing so, am I playing asthma Russian roulette? Should I go in at the first sign of trouble, or should I try to tough it out and hope it gets better on it’s own?

Assuming that the flare isn’t too severe and that Ive already followed the general recommendations in my action plan (which only exists in my head), I will usually try to use objective criteria, such as my peak flows, FEV1s and sats, as well subjective observations, such as my dyspnea level, to try and assess whether I need a higher level of treatment and monitoring. I say monitoring, because that’s essentially all that happens when you go to hospital to be treated for asthma. Most of the drugs they give you in the hospital are the same exact ones you take at home, only in higher concentrations.

The main benefit of being in the hospital during a severe flare is that you have Doctors, Nurses and RTs in close proximity if things get out of control, which they can easily do with asthma. If you’re sick enough where you actually need to be admitted to the hospital and are at high risk for death or might need to be intubated, they’ll usually put you in the intensive care unit where they can keep a close eye on you. Generally though if you’re stable and breathing on your own, they’ll usually put you in a regular hospital room and check on you every few hours, not much different than being at home with a caregiver. Of course as an inpatient in the hospital, they can also perform diagnostic tests, give you IV meds, etc, but the hospital’s basic function for asthmatics is to monitor you until you’re over the hump. Your asthma flare is going to break when its darn good and ready, and nothing the Doctors, Nurses or “Hospital” can do is going to make that happen any faster. Most of the time your asthma flare won’t burn itself out until you’ve already been discharged from the hospital.

There are really no rules are guidelines to tell you if you should go to the ER for your asthma. And though an action plan can be helpful, I think most people rely on their gut feeling to make that decision.

So, what criteria do YOU use to determine if, or when, you should go to the hospital ? And how high do you set the proverbial ER bar? Do you wait until you’re at the brink of respiratory failure, or do you go in at the first sign of trouble? And how about asthmatic children? How do you know when it’s time to take them in?

Oh wait, I just remembered that I’m also an RT. I guess I better offer my professional two sense on the subject: I think the vast majority of acute asthma flares can probably be treated safely and effectively at home as long as you keep a close eye on your symptoms and follow your action plan. However, if you have a history of severe asthma or have been intubated in the past, Id say don’t mess around and get your your butt to the hospital pronto! As far as children go, they can’t cant speak for themselves, so by all means take them in right away if their symptoms don’t improve.

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 with 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 2 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.

How many times have you had a really bad asthma flare, but had serious trepidations about going to the emergency room for treatment? How many times have you felt guilty that maybe you weren’t sick enough to be admitted to the hospital?

Well, that’s pretty much been the case for me for as long as I can remember. This, despite the fact that Ive become critically ill on more than one occasion, because I waited too long to come in for treatment.

Why do so many chronic asthmatics suffer from low self esteem or feelings of guilt? Why do we often deem ourselves unworthy of emergency care when we truly need it? Why do most of us procrastinate going in for treatment, when we know that the earlier we get in, the better the chances are of reversing a flare up before it gets out of control? Why do so many of us feel guilty or even ashamed and embarrassed about having asthma?

You don’t see people with cancer or other serious medical conditions delaying treatment because they don’t think they’re sick enough. So what makes us so different?
I think it was Dr Wenzel who told me, that this strange behavior is actually quite typical among asthmatics.

Where does all this psychological crap that we pile on ourselves come from? For me it seems to have started in early childhood.

I grew up at a time in the 1960′s and 70′s where ignorance about this disease was rampant. Asthma was considered more of a nuisance illness than a serious medical condition. There was this notion that asthma was a result of weak genes that one would inherit and that there was nothing you could do about it. There was virtually no patient education or preventative care available at the time, and what little was known about the disease turned out to be mostly incorrect. My doctor at the time smoked cigarettes!

There was one incident in particular, that I think really messed with my head. It was an asthma exacerbation I had when I was 14 year old. A mild asthma attack, that almost took my life!
Here’s a little bit of what I remember….

I had been feeling short of breath for several days and none of my medications were working. My Mom had decided that I should probably go to the Emergency room for treatment. We didn’t own a car, or for that matter a working telephone, so the only way I could get there was to take the bus. My Mom wrote a letter for me to give to the doctors giving them permission to treat me, and then sent me on my way.

When I arrived at the hospital I was still able to walk, but I could barely breath. I remember going up to the ER desk and handing the Nurse the note my Mom had written. The intern on duty, a young dude ( we’ll call him Dr. Meany #1) walks up to me and asks “What’s the problem here?” I tell him that I’m having a really bad asthma attack. He rolls his eyes, starts laughing and says…. “That’s like telling me you’re having a heart attack!” “You don’t look like you’re having an asthma attack!” He then listens to my lungs with his stethoscope and says… “I don’t hear any wheezing– you can’t be that bad”. He then orders the nurse to put me in one of the rooms and to give me some kind of injection. The next thing I remember, is waking up in the intensive care unit with a tube shoved down my throat and hooked up to respirator. Less than 30 minutes after being laughed at by the ER doctor I had gone into full blown respiratory arrest while inside the hospital’s elevator on my way to have a chest xray done. (Due to the statue of limitations on the retrieval of medical records, I was unable to ascertain whether I had suffered a cardiac arrest as well.)

A couple of days went by and I was eventually extubated and moved to a regular room. The nightmare however, did not end there. I remember complaining to the nurses that the medicines they were giving me, were making my heart pound and making me nauseated. The next thing I know, another doctor, whom I had never seen before, enters my room and starts yelling at me. He actually starts blaming me for being sick “This is what happens when you don’t take care of your asthma! ” “Why did you wait so long to come in for treatment–You could have died!”
I remember I started to cry while he was scolding me. (Have you ever tried to cry when you can’t breath?)

That’s about all I really remember about that hospitalization, but I know now that it had a profound effect on how I would deal with my asthma in the years that followed. After that incident I would always delay going to the hospital when I got sick, for fear of being ridiculed, laughed at or not taken seriously. I found myself continually raising the ER bar if you will, to higher and higher levels. I would only go to the ER for treatment, if I “looked” sick enough. Even today, 40 years after the fact, I still catch myself trying to hold off from going to the ER until I’m on deaths door, because I don’t want to burden people. How crazy is that!

As for those mean doctors, I can only guess that Dr.Meany#1, had never witnessed a stoic asthmatic child in the middle of a severe flare. The reason I wasn’t wheezing, was because I wasn’t moving ANY air. Hopefully he learned from his near tragic mistake, that not all severe asthmatics act the same when they’re in respiratory failure.
Dr.Meany #2, was probably just annoyed from being called in from home during the middle of the night to treat a patient who had no medical insurance. Or, maybe he was just a jerk. Who knows… All I know is that his comments made me feel like I was a worthless piece of s**t and that my asthma was placing a burden on others.

It’s taken me nearly a half a century and a lengthy career in Respiratory Therapy to finally realize that it’s NOT MY FAULT that I have this disease. Bad things happen to Good people all the time. I think in my case, I was just born at the wrong time in history. I can only imagine how awful it must have been for some asthmatics who were born prior to the 1950′s…. It’s amazing anyone survived!

Thankfully, times have changed for the better now and asthma is receiving a lot more attention. Hospitals and Emergency rooms are much better equipped and the staff much better trained to deal with asthmatic patients. The ER I go to now (UCSF) is excellent. All patients with asthma symptoms are triaged the minute they come though the front door and are given priority based on severity.

My advise to those asthmatics who tend to procrastinate in seeking medical care, for whatever reason, is to figure out why you have these irrational feelings and work on fixing them. If you don’t already have one, get together with your health care provider and devise an asthma action plan that spells out exactly when you should come to the hospital for treatment. If you find yourself not feeling right, but not quite sure if you should go the the ER, just go in. With asthma it’s always better to err on the side caution, even if it means a brief prison stay.

I receive of dozens of letters from people living with really bad asthma, but this one really touched me, because the person who wrote it….. is only 16 years old.

Hey Stephen,

Read your website have to say it was quite intriguing! Just want to say you are a hero and a role model for me. Quite amazing what you’ve been through and I take my hat off to you dude! I am a 16 year old guy from Victoria BC Canada writing to you from my hospital bed on the pediatric 4d north tower. I also have neutrophillic predominant asthma I used to have eosinophillic asthma as my IGE level was 16,000 ug. Since then it has changed into neutrohilic and harder to take control of – I feel like you. Sorry if that offends you because I know it offends me when people ask me in the hospital what are you here for? and i say asthma they reply with oh yeah my son has asthma blah blah blah when they really have no idea…when I read your website I saw life through my moms eyes Pretty scary since im used to it. But I was wondering did you ever have high IGE at one point and then your lungs like changed into neutrophillic predominant? and like when you walk don’t you get out of breath at all? it was quite amazing how you walked al those miles. And have you ever used oxygen at home? And whats you’re criteria before you get to go home? for me its Q4 Nebs and 50% FEV1 which takes about 2 weeks every admission! WTF such a flipping frustration I’ve never met anyone like me before and I seem to see it in you. I’ve also been to national jewish hospital in america for further evaluation from ” the big shots” . My FEV1 varys from 45- 50% and FVC of 65%.

Drugs – Spiriva ( for copd) have you ever been on it?
Oxygen 1-2L nasal prongs when in hosp
Formorteral (oxeeze) 12mcg
flovent
azithromycin antibiotic apparently it helps with inflammation in the airways – that’s what they said in Denver at National Jewish hospital – Have you been there?
Ventolin Nebs Q4
Q30 mins when in hospital.
Prednisone 10mg one day 5mg the next alternating when in hops 60mg for 3 days since i had a steroid myopathy I cant get steroids for a long time because there worried abut that happening again ( Diaphragm paralysis) my diaphragm stopped working which made it hard for me to breath was on Bi pap for 6 months
I HATE PRED!
flutter – Chest physio
IVIG every 3 weeks
I am also getting a bronchoscopy which should tell them more about whats going on, as requested from Denver National jewish.

I’m sorry if im bugging you – just thought your page was really inspiring and something to look up to. Thanks for your time Stephen

Darcy Ablak

No Darcy, thank YOU for YOUR time.  It’s people like you who inspire ME !  Your letter made my day.

This is what I call my Hospital survival kit. Always packed and on standby 24/7, my HSK is a small carry bag I keep in my bedroom, that’s filled with everything I might need for a hospital stay.

If (or when) I get sick and have to go to the hospital, all I have to do is grab the bag and GO!

When you spend as much time in the slammer as I do, there are certain essentials you’re going to need to make your stay a little more bearable.

So what do I have in my HSK ?

*Introduction note: (See this earlier post for more details), but basically it’s a note from your personal physician summarizing your medical condition.

*List of medications: Since I’m probably not gonna be able to do a lot of talking to the triage nurse or the doctors, a pre-written list of all my medications comes in really handy.

*Extra clothing : Underwear, t-shirt , Socks etc.

*Toiletries: A few of the things that can make you feel like a human again, especially if you’ve been on the ventilator for a few days , are some clean underwear, a shave, a shampoo , some deodorant, and of course some good oral care help.

*Extra inhalers: As crazy as it sounds, an extra albuterol inhaler is an essential part of the HSK. Even though you’re in the hospital, it can sometimes take too long to get a PRN neb treatment. I can’t tell you how many times having my inhaler, saved me from crashing. ( If you carry one, my advise is not to tell them or they might confiscate it.)

*Phone and Charger: Hospitals can be very lonely places. Not to mention the hospital room phones can be pretty gross. My cell phone or computer is often my only connection to the outside world. Since I’m sometimes too short of breath to talk, texting is the way to go. And of course the camera is useful for blogging purposes ( as we all know).

* Pencil and paper: If you have a breathing problems, or wanna remember peoples name, or just wanna be able to fill out the food menu without tracking down a nurse, these simple items can be very useful. If you end up on bipap or a ventilator, they’re absolutely essential (unless you’re good with sign language.).

* Credit card and cash: Hospitals are more like prisons than you might think. It’s always good to have a credit card or a little cash on hand, in case you need to buy something.

So, what do y’all carry in YOUR Hospital Survival Kits?

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.

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 attack, 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.

(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.

I wasn’t going to post this, but I just couldn’t resist. Here’s the bill for my little New Years week stint at the local pokey.

For fun, I threw in one of the 12 pages of itemized charges to give you an idea how much individual things cost. Like for example, the Ventilator charge per day. Or how much the continuous nebulizer costs for the first hour, and then how much it costs for each additional HOUR. (Remember, I was on a continuous neb for 48+ hours!)

The cost of inpatient hospital care is just mind boggling.

Yes, I have medical insurance ( at least for now)

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.