Figured I better update my blog before people think I died or something.

Where do I start.

Walking ,I’m happy to report that while my lung function hasn’t been all that great this year, I am indeed still walking. I’m putting in about 22 miles a week, which is actually more than I was doing last year at this time. Unlike in previous years when I was doing all those races, I’m now walking primarily to stay active and in shape. Walking conditions my body in such a way, that makes it easier for me to tolerate my dyspnea. It also affords me the opportunity to get outdoors and to listen to my favorite tunes. Music always sounds better to me when its piped into my ears in high fidelity. Next to my guitar, I think my MP3 player is my favorite toy. I’m not ready to make an official announcement just yet, but there maybe another marathon attempt in my future. Stay tuned.

On the personal health front, I seem to be having more frequent severe exacerbations. Since April, Ive been hospitalized 3 times and had to be intubated during 2 of them. Fortunately, I now have wonderful pulmonologist following my care, which makes the difficult times just a little bit easier to get through. Knowing you have someone who you can call anytime and is there to help you, really makes a difference. I’m also having a VAP, venous access port put in. After 50 years and 104 hospitalizations, I have no veins left. This new port( which is implanted under the skin) will go a long way in stopping the torture I have to go through every time I need to have an IV started. Of course a central line carries it’s own risks, but to me it’s totally worth it.

Music, Well what can I say, except I love it and that it brings me a lot of joy. I wish I could play my guitar all day.
Ive only been playing now for about 4 months, but have regained most of what I had forgotten during my 35 year break. Bass playing styles and techniques have expanded exponentially since I last played. I’m really loving learning all these new methods. My real passion though is traditional jazz and rhythm and blues styles. I love latin and Motown too. Been experimenting with Mixcraft audio mixing software and have created a couple of tunes. ( I’ll post them in the future if you want). I’m hoping to attend one of Victor Wooton’s bass camps next spring. He’s a gifted bassist and a wonderful teacher.

Some traveling in the picture. So next month, if I don’t get sick, I’ll be taking my very first trip to the UK. Ive been to other parts of Europe , especially Italy where I have family, but Ive never been to England. I’m only going to be there for 12 days, but I have a lot crammed into those 12 day. I’ll be staying in both Bath and London and will travel to different areas of the country from those locations. I think England is such a beautiful country and I love the people. This trip has been in the planning stages for almost a year now. I’m getting itchy to go.

Asthma advocacy and support. I’m happy to report that membership and/or readership to both my blog forums and my Facebook SARP group continue to grow. We are creating a real community based on education, compassion and support for those suffering from this disease. Our members include world renowned scientists and physicians, Nurses and RTs , but mostly we have really nice people who have really bad lungs. If you have asthma or have an interest in it, please join us.

Finally, It’s my ( our) favorite time of the year, Autumn. Winston wanted to show off his Halloween costume with his fans.He’s a bit of a ham, like his human counterpart.

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.

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 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!

Ever since I got out of the hospital for this last flare-up, Ive been noticing that when I take deep breaths in, I can hear (and feel) a slight inspiratory wheeze or airy sound coming from somewhere in my throat. More bothersome than the sound, I can actually feel some resistance as well. It feels like I’m breathing through a narrowed tube.

At first I thought that because I was weaning off the pred too fast, that my airways were rebelling by tightening up, but this sensation feels different than regular bronchospasm. Although very mild, it feels more like a permanent constricture in, or around the area of my vocal cords.

Well , after a week of trying to rule out possible causes, it finally dawned on me….. I probably have some kind of Tracheal Stenosis” or a vocal cord injury, related to my last intubation. I spoke with Dr W and she totally agreed with my assessment. An ENT doctor will have to look down my throat with a scope to confirm whether this is actually the problem, but I’m pretty confident it is. My only question is, is it my vocal cords that are jacked up, or is there some narrowing of the upper airway itself, and more important, can it be fixed?

From what little I know about this subject from working as an RT, Tracheal Stenosis is basically a narrowing of the trachea , either above or below the glottis, and is usually due to trauma caused when an Endotracheal tube is inserted in your windpipe ( Intubation).Although modern ET tubes are designed to be gentle on the airways, the physical presence of the breathing tube in your airway, can still cause damage and scarring to the surrounding tissue. The result, is swelling and/or thickening of that portion of the airway. The amount of time that the ET tube is in your airway is an important factor, as you’re more likely to develop a stenosis if you were intubated for a long period. But, that’s not always the case, especially when you’ve been intubated as many times as I have.

Up till now, this has been little more than an annoyance ,which only bothers me when I try to take a deep breath in. I am a little concerned however, that this could turn into a very serious problem the next time I have a major flare, so I just as soon get it checked and corrected as soon as possible.

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.

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.

Just in time for Halloween! Some newly discovered horror show pictures.

Last week while I was clearing out my cell phone, I stumbled upon these eerie photos that my partner Douglas must have taken when I was in the hospital this past June. If you recall, I was intubated for an asthma exacerbation, but had a reaction to the drug propofol, known as propofol infusion syndrome . As a result, they had to stop giving me the drug, which made it difficult to keep me sedated while I was still on the ventilator.

These are some photos of me waking up on the ventilator during that event. You probably can’t tell from the photos, but I had the worst feeling of suffocation imaginable, but at the same time I was so doped up… I couldn’t react to it. It was awful!
When I first saw these pictures, it was kinda like deja vu. Now, they just plain gross me out, so I thought Id share them with my ghoulish asthmatic friends.

Newly discovered Horror pictures

This is a picture of me on a ventilator last year during a severe asthma exacerbation ( what they call status asthmaticus). See the little IV bottle inside the blue rectangle with the milky looking stuff inside ? That’s Propofol !

Also known as Diprivan or “Milk of Amnesia” in medical circles, this is the drug that the media has been talking so much about in the Michael Jackson tragedy. When I heard the allegations that they found this drug in his home, I couldn’t believe it. This is the very same stuff they use on me when my breathing gets so bad that I require a breathing tube and a ventilator to breath.

I can tell you from personal experience that is an extremely powerful sedative anesthetic. A great drug for keeping someone under during surgery (or in my case, being maintained on a ventilator), because it works so fast. You can basically control someones conscienceness with the flip of a switch. The moment the drug hits your blood stream you’re out instantly , and depending how rapidly the drug is infused , it can induce a coma state. When it’s time to wake you up, they simply stop the infusion and within seconds….. bam, you’re awake ( hopefully). But if something went wrong and you got too much of the drug or weren’t monitored properly, you could easily stop breathing. There can be other adverse side effects as well, such as lactic acidosis, something of which has happened to me on more than one occasion while on the drug.

The use of propofol during a severe asthma attack, is to basically put you to sleep (after you’ve been intubated), so that the ventilator can take over your breathing and your body can rest. They usually keep you in this coma-like state for a couple of days until you’re lungs are functioning better and you’re able to breath again on your own.

I guess the keywords here are …BREATHING TUBE and VENTILATOR…. You’ll notice in the picture, I’m wired from head to toe and hooked up to a breathing machine, not to mention I’m in an Intensive Care Unit! I can’t even imagine anyone being given this drug outside of a hospital setting.

If it turns out that there were physicians or nurses administering him this drug outside of a hospital setting,they should have their licenses revoked …….permanently!

…………..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.

Can you believe I’ve had 118 arterial blood gases (ABG’s) drawn in just a 3 year period??

Without getting too medical on you , an arterial blood gas sample (ABG), is simply a type of blood test that is done when it’s necessary to measure the amount of oxygen ( PO2) , carbon dioxide ( PCO2) and Ph ( the acidity ) and a few other things in the blood collected from an artery. During a severe asthma exacerbation , the actual struggle to breath ( what they call “work of breathing”), can cause the CO2 in the blood to increase to dangerous levels. If the attack becomes severe enough, the body( lungs) can’t eliminate the CO2 fast enough and the blood then becomes acidic ( low Ph) … not a good thing) The point where the body is no able longer compensate effectively, is called “Respiratory Failure”. Trust me..you don’t want to be in respiratory failure.

Of course that 118 number doesn’t represent the actual number of punctures into my radial artery. If that were the case , my wrist would have fallen off by now. Some of those samples actually came from arterial catheters that were placed in my artery during different hospitalizations. I estimate that about 50 of the 118 ABG samples sent to the lab, were taken from an art-line. That still leaves a whopping 68 individual punctures in my poor wrists!

Unlike regular blood draws from a vein, ABG blood samples are not only harder to get (you can’t really see an artery like you can a vein), but they can be quite painful as well. So, if the doctors think they’re gonna to need to get frequent and/or multiple arterial blood samples, they will usually place an arterial catheter directly into the artery and then draw the sample from that. They can also attach a transducer to that catheter which allows them to monitor your blood pressure directly from the source! Pretty cool actually ! In total, I think I’ve had about 10 arterial lines inserted in just the past 5 years. In any case…a 118 blood gas samples….is a lot of blood gas samples! It might even be a record for an asthmatic.

Oh..and at $250 a crack, that’s about 25 grand just for this single blood test. See……I told you I was expensive.