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.

I was talking with one of the Asthma Research Recruiters over at the NIH in Bethesda Maryland where I’ll be involved in a study later this year( more about that in a future post), and I was shocked to learn that they were having a really hard time getting volunteers for there asthma research projects, especially those with severe asthma.

Here’s the deal… asthma isn’t gonna go away anytime soon on it’s own. If you suffer from this disease and you want to improve the odds of having better treatment options available to you during your lifetime, you should seriously consider becoming a clinical research volunteer for an asthma research study or clinical trial in your area ( or if you’re adventurous like me, out of the area).

To make it easier for you, I’ve listed 4 of my favorite clinical trials search engines to get you started.

1) Clinical trials.gov

2) Research Match

3) Medpedia

4) Trial-X [You'll find a handy little search tool on my sidebar]

While searching for a study that interests you, ask yourself these questions:

* What is the purpose of the study?
* What is required of me?
* What is my role in the study — am I a healthy volunteer or a patient volunteer?
* Will the study directly benefit me?
* Will the study benefit others?
* Are there risks? If so, what are they and what are the chances that they will occur?
* What discomforts are involved?
* What is the total time involved?
* Are there other inconveniences?
* Have I discussed participation in the study with those who are important to me, such as family and friends?
* Do I wish to participate in this study?

We need to put and end to the suffering that this disease causes. There’s a lot of promising research going on right now, but they can’t go forward with without human test subjects. I know it’s hard to find the time required to get involved, but many of these studies will reimburse you for your efforts….some will even pay for your travel expenses. If you have moderate to severe asthma and can travel, you might also consider SARP at the University of Pittsburgh or one of the asthma studies conducted at the NIH.

Thanks for your help!

I haven’t blogged about this experience until now, because frankly, I been too sick to sit in front of the computer for more than a few minutes at a time. You see exactly 2 weeks today, I stopped taking one the most physically addictive substances known to man...Methadone ( Some might say even worse than heroin). But rather than doing it the smart way by slowly tapering the dosage down, I decided to stop taking it…. cold turkey! Believe me, this is a place you never wanna go.

Because I had been on a relatively low dose for only 11 months ( 20 mg), I mistakenly believed that I could stop taking the drug without tapering down first. I thought I could do this safely and suffer only minor withdrawal symptoms. I mean, how bad could it be?

Let me just say that detoxing of this drug was one of the hardest things Ive ever done in my life. You wouldn’t believe the incredible hold this drug can have over you. There were times I didn’t think Id make it.

I’m not totally there yet, but I’m definitely heading in the right direction now and can finally see some light at the end of the tunnel. As of this past Monday, there were no detectable levels left in my blood.

Some background
If you remember, about 11 months ago at the suggestion of a palliative care specialist, I began a trial of low-dose methadone to help quell my worsening dyspnea. It was felt that being placed on a maintenance dose of methadone would provide better around- the- clock coverage than the short- acting opiates that I had been prescribed previously.

Within the first few days of taking the drug, I didn’t like the way it made me feel and almost stopped taking it right then and there ( In retrospect I wish I would have). But after adjusting the dose, the unpleasant symptoms went away and I pretty much forgot all about it. Methadone just became another pill I had to take everyday to function. Other than the usual side effects that you would expect when taking opiates (mainly constipation) my dyspnea actually did improve. No doubt about it, methadone did help in masking my shortness of breath to some degree and it also gave me the perceived extra energy I needed to exercise the way I wanted to.

There’s always a catch
Yes, I was breathing better, but during this past year I started noticing that every time I was discharged home after a severe asthma hospitalization, I would suffer these really weird flu-like symptoms…only much more severe. Not a lot of fun to feel like you have the flu when you’re trying to recuperate from a severe asthma flare. At first I thought it might be from all steroids or maybe from some of the sedation meds that I receive when on the ventilator, but this had never happened before prior to last year.

Then about 4 weeks ago, right after being discharged from my most recent hospitalization, it happened again, only this time the symptoms were a hundred times more intense. We’re talking violently ill. Severe chills, restless legs, agitation, anxiety, insomnia, etc. I knew I was experiencing some kind of opiate withdrawal, and the only thing I was doing differently was taking methadone. Sure enough, as soon as I would resume taking the drug, those horrible symptoms would instantly go away. I was physically addicted.

It had finally dawned on me that the reason I had been suffering these mini withdrawals after coming home from the hospital, was because I was NOT receiving the drug while in the hospital. I later discovered that the half-life of methadone is longer than any other opiate ( 15-32 hours ), so most people don’t start experiencing withdrawal symptoms for several days after their last dose. This then would explain the delayed withdrawal and why they wouldn’t start until I got home from the hospital. Things were starting to make sense now, but I did not like what I was learning.

I’m not sure why they didn’t give me methadone during some of my hospitalizations. Maybe in all the commotion of trying to stabilize me in the ER during the more severe attacks, the drug just got overlooked or something. All I know is that in 2 of the 3 hospital admissions I had during that time period, methadone is not listed on any of the itemized hospital bills , nor is it listed in my medical records. In any case, that was the deal breaker for me. If there’s anything I hate more, it’s being a slave to something that has so much power over you. What if 5 years down the road I lost my health insurance and was unable to get my daily fix? Id be in some real do-do then. I figured it would be in my best interest to get off this poison immediately. So on Tuesday Jan 4th at 5 am, I took my last 20 mg dose. No weaning, no tapering, just cold turkey. A mistake? Maybe, but I wanted this s**t out of me as soon as possible.

Preparation
I may be just a tad impulsive, but I’m not a total bonehead. I knew there would be some nasty withdrawal symptoms, so in the hours leading up to my quit day, I tried to do some research to find out ways to make them more bearable . I went to the local GNC and purchased the ingredients needed for a modified version of the “Thomas recipe” that I had found on the web. The science behind it seemed right and for the most part I think it helped. (The only problem for me was the sheer quantity of pills and capsules I had to consume everyday, about 30 capsules. They made me extremely bloated , which in turn made it hard for me to breath).

The Withdrawals

Let me preface this paragraph by saying that I have a very high tolerance to most forms of physical discomfort. My history of life -long lung disease has toughened me up in a sense. Having said that, I’m also 56 years old and like I said…. have very severe lung disease!
Perhaps I was a little hasty in making my decision to stop cold turkey, because by day # 4 I wanted to blow my brains out and from there it just got worse. I don’t think Ive ever been so sick in my life, at least not while being conscience.

Methadone withdrawal is considered within the opiate dependent community, as the worst opiate withdrawal a human being can experience. The thing about this drug (and I suppose other opiates,) is that when you stop using it, your brain starts flooding your body with extra adrenalin. You can’t sit still, your limbs go crazy, your skin becomes hypersensitive and you get this souped up version of restless leg syndrome (RLS). You wanna jump out of your skin. It’s awful. But I think the worst thing about detoxing from methadone is the insomnia. Not only do you have to endure all the horrible withdrawal symptoms, but you can’t use sleep as an escape.

By day 6 my blood pressure was getting so high that my doctor was worried I’d have a stroke and wanted me to come into urgent care center to be evaluated. Needless to say she wasn’t too please at my decision to go cold turkey from this drug in the first place and tried to talk me into re-starting the methadone so that I could safely taper. I figured I had endured this hell for 6 days , there was no way I was going to back to it, no matter how fast it would have ended my suffering. Sympathizing with me, a Nurse Practitioner at the clinic agreed and prescribed me Clonidine, which is a blood pressure medicine that also helps reduce the severity of some opiate withdrawal symptoms. She also gave me a little Valium to help with sleep. That night I got 3 hours of sleep, the first sleep in a week. By day #8 most of my symptoms had peaked and I was gradually feeling better. I could finally see some light at the end of the tunnel.

Recovery
It’s now been 14 days, and while I’m still having some residual symptoms, such as intermittent chills, insomnia and mild depression, they’re not as intense as before and I’m finally starting to feel half way human again. I’m now in what they call the post withdrawal phase, which will probably continue for several more weeks. It’s a period in which cravings for the drug can be overwhelming for some people, especially for addicts and those who have been on high doses for a long time. The temptation to end one’s suffering by just popping another a bill can be a tough wall to hurdle when you’ve been through weeks of this hell. Fortunately for me, I was never on real high doses of the stuff and never got a “buzz” from it , so I don’t seem have a psychological dependence for it at all.

What I’d like to know is why was I never told or warned that withdrawing from the drug abruptly, or even slowly, would bring on such severe withdrawal symptoms? The only thing I can think of, is that the doctor who prescribed it to me assumed that I would be taking the drug for the rest of my life, so why bother. Who knows.

Things that helped
I believe exercise played a huge role in hastening my recovery. Starting around the 4th day of withdrawals, I forced myself to get outside and walk at least a couple of miles twice a day. I did this in the rain sometimes, and even did it while having a fever and severe chills. Not only does exercise make you sweat out the drug faster, it also helps reduce the RLS symptoms and make you feel emotionally better. I also found that by taking frequent hot baths offered a few minutes of welcome relief from the unrelenting chills and RLS. Finally, I can’t over emphasize just how important the support you get from online chatrooms, forums and even Youtube are in trying to get though the worst days. Reading about others who were going through it, or who had been through it, helped tremendously.

Conclusion
I still believe that opiates have a place in alleviating the suffering that comes from the breathlessness of severe lung disease or conditions that cause retractable pain, but I think you have to consider all the pluses and the minuses before going down that road. And by all means, people need to informed that these powerful drugs are extremely addictive and that they come with a lot of not so pleasant side effects. Unless the person prescribing this drug is an expert in the field of medication withdrawals effects, if you ever go on this drug, make sure you seek the advise of addiction specialist if you ever decide to come off it.

UPDATE: 11-6-2011 It’s now been full 10 months, almost to the day, since I quit methadone cold turkey. As I mentioned in the original post, the worst of the withdrawal symptoms last about 10_ 14 days. Looking back on it now , I can tell you that I continued to have residual symptoms, especially evening chills and RLS for at least 4 months. It wasn’t until about June ( or 6 months from when I quit )that noticed all of my withdrawal symptoms had faded away.

Today’s Breathing Basics review is all about Oxygen Saturation and Oximeters.

If you have lung disease of any kind, no doubt you’ve come across the words “Oxygen saturation” or “O2 Sats” , “Pulse-Oximeter”?
I use those terms on my blog all the time, but do you really know what they mean ? I suppose you could Google a definition, but I think I can probably do a better job of explaining it in a way that makes more sense to the average person, and hopefully in a way that won’t bore you to death.

O2 Saturation is simply a numerical representation ( expressed as a percentage) of how much oxygen is a numerical representation of how much oxygen your blood is carrying at any given moment. This is a useful number to know when someone with a respiratory disorder is ill, because it indicates how well the lungs are functioning and/or how much oxygen is available to the vital organs of the body.

Before I get into how we measure oxygen saturation, let me explain what the term “oxygen saturation” actually means. If you remember some basic human biology, then you already know that we have these little donut shaped cells in our blood called “Red” blood cells or RBC’s for short. Inside these red blood cells is an iron-rich protein called “Hemoglobin” also known as Hb. Well, when hemoglobin comes in contact with oxygen ( in your lungs) it soaks it up like a sponge. It’s actually the combination of oxygen and hemogloblin that gives blood it’s bright red color. The more “saturated” the hemoglobin is, the brighter red the blood becomes. When the Oxygen saturation of the hemoglobin is low, ( usually below 75%), the blood actually gets darker…almost black in color(such as the blood that’s carried in your veins). Each hemoglobin molecule has a certain capacity for oxygen in which it can bind with, and it’s this capacity for oxygen that we are actually measuring when we do a oxygen saturation check… ie. O2 sat. So, if I check my O2 sat and the reading is 95%, this tells me that my hemoglobin is saturated to 95% of it’s carrying capacity. So naturally the more oxygen that gets into the blood stream, the higher the saturation should be.

There are several factors that effect how much oxygen our hemoglobin can hold (O2-oxyhemoglobin disassociation curve), but that’s beyond the scope of this discussion… at least for now. The important thing to understand, is what oxygen saturation is, and how it relates to your particular type of lung ailment. For asthmatics, knowing your O2 sat is probably less important than someone with CF or pulmonary fibrosis or emphysema. That’s because asthma is not a disease that normally effects our ability to oxygenate. Unless you have an extremely chronic and severe form of the disease, you can suffer a pretty nasty asthma attack and still have normal or near O2 sats.

Now that we know what O2 saturation is, how do we measure it? Well, that’s where the handy pulse-oximeter comes in. Hard to believe that this device has only been around for a couple of decades. When I first started working as an RT back in the 1970′s we didn’t have such a luxury. Back then, to measure someones O2 saturation, we had to actually take a blood sample from an artery.. i.e. an ABG ( arterial blood gas), then run it through a special machine that would measure the amount of oxygen dissolved in the plasma, and then hand calculate the results with a slide rule. Talk about a long and drawn out process… not to mention painful.

A pulse ox works is this, when you place the probe on your finger, the top of of it contains a transmitter that shines a beam of light through finger. That beam is absorbed by the hemoglobin in the blood cells as they pass through the the tiny blood vessels in your finger. The receiver at the bottom of the probe, measures the difference in of the returning wavelengths and calculates the O2 Saturation ,which is then displayed on the meter. Because the oximeter needs to be able to differentiate the light absorbed by arterial blood from other interferences, it looks for your pulse. Arterial blood is pumped by the heart, so it pulses and fades with each heartbeat. The oximeter subtracts the trough from peak levels, and the difference is the light absorbed only by the arterial blood. This is why it’s important that you verify that the pulse reading on the oximeter is correct. If your skin to too cold or your blood pressure to low, then it becomes very difficult for the oximeter sense the pulse Pretty cool.

PCO2( carbon dioxide in your blood) is actually more of a concern than O2 saturation when you have an obstructive disease like asthma. We’ll talk about PCO2 the next time around.

The following is a perfect example of what prednisone can to an otherwise intelligent and creative mind……

I was at the town grocery store the other day, where I noticed they were having a contest to see if you could guess the weight of this huge pumpkin they had as part of a Halloween display. As I was walking home I thought to myself hmmm… I should have a contest of my own, but rather than pumpkins, I’ll have people try to guess how many empty albuterol/atrovent vials I have laying around. Out of this, the inaugural Breathinstephen Halloween Contest was born.

The rules are simple:
All you have to do is guess how many vials are in the bowl and send it to me via email or comment by Oct 29th.

The person who comes closest to guessing the actual number of vials, will win a brand new digital peak flow/FEV1 meter valued at $75.00, courtesy of the kind folks over at Microlife . The Microlife peak flow meter kit comes complete with batteries, a nice carrying case and a usb cable so you can track your data on your computer. I love this flow meter, because in addition to peak expiratory flow rates, it also measures FEV1, which is a better indicator of lung function.

**Here’s a hint…The empties in this bowl represent roughly a month and a half of neb treatments for me.**

Good luck!

(PS….Wait till you see what I’m planning to make out of these things when I get enough of them.)

As this new treatment for severe asthma becomes more readily available to the general public, I think it’s important that prospective patients arm themselves with as much information as they can about the procedure.

A physician by the name Steve Gupta, a board certified internist and an allergy immunology specialist practicing in Southern California, has some pretty strong opinions about the use of Bronchial Thermoplasty to treat severe asthma. And while I’m not exactly sure how he arrived at some of his conclusions, most of what he says makes total sense.

I’m particularity alarmed by the fact that severe asthmatics ( those with a baseline FEV1 of less than 60% as defined by the National Asthma Education and Prevention Program [EPR3] )were excluded from participating in the clinical trials ( myself included). Seems to me you would want to study the effects on the group that you are targeting the treatment for.

Anyone considering having this procedure done should read Dr Gupta’s letter to the FDA.

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!

How’s this for a view!

In just a few weeks , if all goes as planned, I hope to be standing on that very same rock with a half a dozen of my COPD friends.

The brainchild of my Boston marathon walking partner Mike Mc Bride, the “COPD Mt Evans Challenge” as he calls it, is simply about a bunch of friends with severe lung disease, getting together for a day and hiking to the summit of one of the tallest mountains in the Rockies of Colorado…. just for the heck of it! No, we’re not going to scale an entire mountain, but we will be walking up the steepest portion of one.

Starting in Idaho Springs,elevation 8,700 ft, we’re gonna drive up the mountain road 9 miles to Summit Lake, which is situated at the 12,800 ft level. From there we’re gonna hike the last 5 miles on foot up to the summit of the mountain, which sits 14,220 ft above sea level. My COPD friends will be using high -flow oxygen @ 15 lpm to make the trek up the mountain I hopefully, will not need supplemental O2, but I’ll be closely monitoring my O2 sats just in case.

As you can see in this photo taken earlier this year during a race up the mountain, the grade along certain portions of the road is pretty steep. The part that we’re gonna be doing, gains approximately 1600 ft in elevation in just over 5 miles.

( Mike Mc Bride and Roxlyn Cole testing out their oxygen equip)

What makes this particular walk such a challenge for me (and for the other lungers), is the altitude and the steepness of the climb.
Excluding being a passenger in a pressurized airplane, this will be the highest altitude my body has ever been exposed to. The last walk I did that involved a mountain, was back in 2008 when I did the ET midnight marathon in the Nevada desert. And while it was a much longer walk ( 13.1 miles) , we only reached a maximum elevation of 5,500 feet during the race. The summit of Mt Evans is almost 3 times higher.

My lungs are not a big fan of climbing hills. I can barely walk uphill the two blocks it takes to reach my house, let alone 5.5 miles up the side of a mountain. Putting the physical challenges aside though, the main reason I wanna do this is, is to take in the sheer beauty of it all. I think Mountains are awesome.

If you’d like to read more, or maybe even join us, check out at Roxlyn Coles blog

]]> http://breathinstephen.com/i-think-ill-go-climb-a-real-mountain/feed/ 10 http://breathinstephen.com/annual-asthma-report-card/ http://breathinstephen.com/annual-asthma-report-card/#comments Tue, 29 Jun 2010 14:45:10 +0000 Stephen http://breathinstephen.com/?p=15009

It’s been almost a year since Ive updated my asthma status. Here’s the latest report card. For the year, I give myself a C +

In general my lung function has only declined a couple percent which is good. The problem of course, is that when you’re down in the lower ranges like I am, even the slightest change can have a huge impact on the way you feel. My baseline FEV1 now ranges from 33-42%, compared to 36-47% a year ago.

Probably the most noticeable change, and my biggest complaint by far, is that I get short of breath much faster now when engaging in even physical activity. Magnify that 3 or 4 fold when I do activities like racewalking or marathon walking.

My dependence on opiates and anxiolytics to quell my breathlessness keeps growing. Where I used to only take these drugs occasionally, I now take them on a daily basis.
The good news is that they do help and have probably kept me out of the hospital on more than on occasion.

My medical establishment labels are unchanged ( no big surprise there). Under the GINA guidelines, I’m still labeled a severe persistent asthmatic. Under the brand new SARP phenotypes for severe asthmatics, I’m labeled a Catagory/Cluster 5, Childhood onset asthmatic. ( Thank you Dr Wenzel)

Symptoms
• I’m pretty much short of breath to some degree all the time now (even when I’m in my green zone). Most of the time it doesn’t bother me because I’m used to it. But in addition to the low level chronic breathlessness, I’ve also been getting these short, but very intense bouts of dyspnea which seem to spring out of nowhere. The sensation is like that of sudden suffocation. It’s like someone put a bag over my head. It feels like my respiratory muscles are too weak to expand my lungs when I take a breath in. The sensation makes me anxious, which then perpetuates this viscous cycle of not being able to catch my breath. It’s awful. This video ,which Ive used before in my blog posts, does a great job of depicting what these intense mini attacks kinda feel like. The only difference is that I don’t struggle the way the actor does in the clip.
  Thankfully these bouts only last an hour or two and are usually relieved with meditative breathing, multiple back to back neb treatments and sometimes opiates. Unfortunately, these intense flares seem to be occurring more frequent now….almost daily. They’re probably a result of declining lung volumes and increased sensitivity to air-trapping.
• For the last 6 months I’ve also noticed a slight, but persistent audible insp wheeze when I breath. Hence, the “Inhaler voice” It’s more annoying than anything else, but I hate the way it makes my voice sound. ENT actually checked my vocal cords and they look fine ( no stenosis)
• It’s becoming increasingly more difficult for me to sleep laying flat. I now have to pretty much sleep with my back propped up, almost to a sitting position. Last year I switched from a conventional bed to a foam bed, which helped ease my lower back pain.
• A noticeable decreasing tolerance to exercise and physical exertion in general. I get winded much easier now when I do any type of exercise or walks.

Incarcerations

• 2 hospital admissions so far this year, totaling 12 days. 8 of those in the ICU, and 2 of those on a ventiltor.
• Ive had one intubation this year, bringing my lifetime total to 16 ( we’re talking Ripleys Believe it or not stuff)

Fitness and Diet
• Despite my worsening dyspnea, I still force myself to walk at least 4 days a week ( 4-6 miles per walk) and even farther when I’m training for a race.
• Earlier this month, I switched to an all organic diet. Additionally, Ive cut my sugar intake in half and eliminated HFCS almost completely. It’s way too soon to see how much of an impact this new way of eating will have on my health in general, but I suspect it will eventually be a positive one. How could it not.

Treatment Plans
• My Asthma action plan and medication list are pretty much unchanged, except that I take methadone (10mg) every evening now. [UPDATE---Methadone discontinued on Feb 3rd 2011]

New Treatment Options
• Bronchial Thermoplasty is no longer an option for me. My asthma is too severe, my lungs are too scarred. I don’t have much smooth muscle left to shrink. (* Speaking of Bronchial Thermoplasty, this is one of better articles Ive read on the subject. It’s objective, factual and well written)
• I’m waiting for clinical trials to begin ( hopefully by this time next year) on some new Th2 (IL-4/IL-13) blocking drugs.

  Th2 blocking drugs (if they turn out to work), block protein factors related to, but not the same thing as, allergy. These blockers are believed to work “higher up” on the immune inflammatory cascade (where things are getting started) so that they “could” block more things of relevance to asthma. I have a problem with mucus blocking my tiniest airways, which causes me to air trap. (air trapping is the number 1 cause of my suffering). We’re hoping that this new class of drugs might help with that. ( per Dr Sally Wenzel)

]]> http://breathinstephen.com/annual-asthma-report-card/feed/ 5 http://breathinstephen.com/going-organic/ http://breathinstephen.com/going-organic/#comments Thu, 17 Jun 2010 19:07:39 +0000 Stephen http://breathinstephen.com/?p=14498

Here’s a question Ive been asking myself a lot lately (thanks to a most cool brother);

When it comes to improving my fitness, why should I go through all the pain and sacrifice of exercising my body hard everyday, if I’m gonna continue to throw toxic chemicals into it? Doesn’t make much sense.. does it?

Good old fashioned common sense (which sometimes eludes me), tells me that eating healthy and natural untainted foods, surely must be better you for you than ingesting food that is treated with hormones and pesticides. How could it not?
Convinced that this is not only the right thing to do, but also the wisest, I’ve decided to switch from a conventional diet, to an all Organic one.

Ive already started with fruits and vegetables because they’re easier to find at the local markets. As I get better at doing this, I’ll start including dry and canned goods, and then eventually on to meats and dairy. I’d like to be 90% organic in 3-4 months.

Going Organic is obviously more expensive, but cost shouldn’t be an excuse. I spend $60 on gym fees and $25 for a haircut every month without batting an eye. Why would I even think twice about spending a little extra on something that can only make my life better. Besides, there are informational web tools out there that can help you get the biggest bang for your organic buck… you just have to be a savvy shopper and know what to look for. Remember too, that locally grown food takes less gas to transport it to market, which means less environmental pollution. So there’s a positive impact on more than just ones own body.

Without getting into politics of what’s considered safe and healthy, the turning point for me was this; Why do something only half right? Improving your health requires more than just working out regularly, you also need to fuel and nourish your body with clean natural food.
I love this line by Michael Palin……
“All I ask of food, is that it doesn’t harm me.” (Monty Python’s Flying Circus)

Buon appetito!

]]> http://breathinstephen.com/going-organic/feed/ 6 http://breathinstephen.com/university-of-pittsburgh-newsletter-may-2010/ http://breathinstephen.com/university-of-pittsburgh-newsletter-may-2010/#comments Wed, 19 May 2010 13:05:46 +0000 Stephen http://breathinstephen.com/?p=13025

( click to view )

]]> http://breathinstephen.com/university-of-pittsburgh-newsletter-may-2010/feed/ 7 http://breathinstephen.com/no-thermoplasty-for-steve/ http://breathinstephen.com/no-thermoplasty-for-steve/#comments Mon, 10 May 2010 17:31:13 +0000 Stephen http://breathinstephen.com/?p=13038

Ive been getting a lot of email lately from people asking me if I’m gonna have the new Bronchial Thermoplasty procedure done. The answer is No. Unfortunately, my asthma is too severe even for the thermoplasty ,which is being touted as a treatment reserved for the most severe form of asthma …go figure. Actually, I don’t have a lot of the reactive smooth muscle in my larger airways that Thermoplasty targets. Most of my airway narrowing takes place deep down in my lungs in the smaller airways, where they cant reach with this device.

Hopefully this new treatment will help a few people, but I’m not convinced that this is the magic bullet that we’ve all been waiting for. It also seems that the company’s definition of “very severe asthma”, is somewhat different than my own. Ironically, I was denied entry into the clinical trials phase of this new procedure back in 2006, because my asthma was deemed “too severe” by the study investigators.

People with very severe chronic asthma usually have a fair amount of scarring, and some have less twitchiness in their large airways. It would seem to me, that this new procedure has a better chance of success on those individuals who have mild to moderate persistent asthma, whose primary problem is spastic airways and who don’t have a lot of airway remodeling. Although in both cases, inflammation can play a significant role in asthma and its symptoms. Bronchial thermoplasty is not known to do anything to inflammation.

Even if I was a suitable candidate for the procedure, I’m not really sure I’d want to have it done. There just hasn’t been enough research on it in the real world, and any scientific proof that it actually works, is marginal at best. Now that this device is approved for use in the US, I think it would be wise to wait a while and see what the outcomes will be like.

]]> http://breathinstephen.com/no-thermoplasty-for-steve/feed/ 4 http://breathinstephen.com/lessons-learned-from-boston/ http://breathinstephen.com/lessons-learned-from-boston/#comments Thu, 06 May 2010 18:55:55 +0000 Stephen http://breathinstephen.com/?p=12991

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

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

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

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

]]> http://breathinstephen.com/lessons-learned-from-boston/feed/ 1 http://breathinstephen.com/behind-that-finish-line-smile/ http://breathinstephen.com/behind-that-finish-line-smile/#comments Tue, 27 Apr 2010 17:27:42 +0000 Stephen http://breathinstephen.com/?p=12742

Ok, so I look really strong in some of my finish line photos, but believe me.. looks can be very very deceiving. I’m an expert at hiding what I feel inside (I think most asthmatics are, to some degree.) Behind those smiles were waves of excruciating pain shooting down my legs. My breathing was really labored at times and my calf muscles felt like they were going to explode, but I told myself at the start of this race that if I made it past mile 21, that no matter how bad my breathing was, or how much pain I might be in, that I would push on with positive thoughts in my head and a smile on my face….And that’s exactly what I did! And if for no other reason, that’s why I’m so proud of myself for finishing the race in style.

If you look really deep, you can see the pain starting to come through
(Finish line photos)

I don’t care how healthy you are, even if just walking a marathon, when you get to a certain distance in a race, your body starts to hurt really bad (I think that’s what they mean by “Hitting the WALL”). The problem is, you can’t really stop moving or you run the risk of your whole body cramping up. It’s happened to me before, and I’m telling ya..it ain’t a pretty scene. A full body cramp would end the race for you , right then and there. So after 20 miles, you do whatever you can to stretch out those muscles while you’re moving, but you never stop.

So what did it take to get this 55 year old severe asthmatic across the finish line at the Boston marathon?
Well, how about lot’s of training, lots of medications and a ton of determination and willpower! Having a good friend walking along side of you , who makes you laugh constantly, probably helps as well.. Thank goodness for Lizzy.

Here are couple photos I left out of the main photo set. I think you know why…

(Had to stop to sneek a neb treatment about every 7 miles along the course… this eats up a lot of time )

( Needed 3 neb treatments back to back after crossing the finish line. )

Here are a few other things you probably didn’t know

*To control my asthma during this 26.2 mile race, in addition to the neb treatments every 7 miles, I took appx 24 hits off my inhaler ( about 3 puffs per hour). On top of the inhaled drugs, I swallowed 10 mg of prednisone every hour , chased by an antacid to control the stomach burning that the prednisone causes in the first place . Thank You Jon ( our spotter who went and got me some TUMS in the middle of the race.

*To control the pain in my calve muscles and the metatarsalgia pain in my feet, I took 2 Motrins every 2 hours along the course, 6 in total.

*For energy and hydration , I consumed 2-4 oz of plain water every mile, alternating with Gatorade every other mile. I did this for the first 20 miles, then switched to a 50-50 blend of electrolytes and water (2 oz) every mile for the rest of the race. In addition, I swallowed one Powerbar gel ( tangerine with double caffeine) every 6 miles.

So as you can see, doing this race ( or any other for that matter) wasn’t as as easy for me as most people might think. I just make it look that way:-)

]]> http://breathinstephen.com/behind-that-finish-line-smile/feed/ 2 http://breathinstephen.com/knocked-down-but-not-defeated/ http://breathinstephen.com/knocked-down-but-not-defeated/#comments Fri, 05 Feb 2010 20:23:19 +0000 Stephen http://breathinstephen.com/?p=11174

(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

]]> http://breathinstephen.com/knocked-down-but-not-defeated/feed/ 12 http://breathinstephen.com/tracheal-who/ http://breathinstephen.com/tracheal-who/#comments Tue, 26 Jan 2010 16:01:46 +0000 Stephen http://breathinstephen.com/?p=11062

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.

]]> http://breathinstephen.com/tracheal-who/feed/ 3 http://breathinstephen.com/an-expensive-new-years-party/ http://breathinstephen.com/an-expensive-new-years-party/#comments Tue, 19 Jan 2010 01:43:42 +0000 Stephen http://breathinstephen.com/?p=10863

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)

]]> http://breathinstephen.com/an-expensive-new-years-party/feed/ 3 http://breathinstephen.com/back-to-life/ http://breathinstephen.com/back-to-life/#comments Sat, 16 Jan 2010 15:35:49 +0000 Stephen http://breathinstephen.com/?p=10770

[Not lookin too bad for someone who was on a ventilator just 11 days earlier..eh?]

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.

]]> http://breathinstephen.com/back-to-life/feed/ 9