I didn’t even know that this was out there until an RT blogger friend on Facebook told me. Mike and I are on page 61 of the current issue of the “AARC Times”.
The Times is a publication of the American Assoc for Respiratory Care, a national organization that thousands of Respiratory Therapists belong to. They also put out a science journal called “Respiratory Care” in which I was featured back in 2008.
Had a great weekend, one of the best actually, in quite some time. On Saturday I was breathing so well, that I was able to go a full 12 hours without having to take a neb treatment. I did use my inhaler a couple times, but overall, I think it was the best breathing day Ive had in the last 3 months and I am grateful.
Spent part of the weekend with two of my runner friends, Brandon and Rachel who came up for the marathon. I gave them a mini tour of the city like I always do, this time including a drive up to Twin peaks followed by lunch and shopping in the Castro. The weather was classic San Francisco with fog at the beach and total sun on the other side of the hill, perfect temps all weekend long.
After lunch we went out to the marathon Expo so my friends could pick up their bibs and goodie bags . I’m not sure why the SF marathon promoters moved the Expo so far away from the starting area where most people stay , but this is something Ive noticed happening at more and more marathon events. At the Rome marathon for example, the Expo is actually located a full 10 miles away from the actual race course. The Boston Expo is located 25 miles away from the starting line. I guess it has something to do with size and cost.
Later in the day we kicked back in their hotel room and picked through the goodie bags like they were Halloween candy bags or something. It was pretty much the standard stuff though… race advertisements, magazines, discounts coupons for shoes, chapstick a couple candy bars, etc.
My friend actually bought a bag full of 2006 finisher medals that they were selling at the Expo as coasters. They’re the actual finisher medals from that year,but without the ribbon attached. If you’ve never seen a SFM medal, these things are huge.
After a nice afternoon I said goodbye to my friends and headed home. I will meet up with them again in Las Vegas in 2 weeks for the ET marathon.
Sunday’s breathing wasn’t as good as Saturdays and I ended up needing a couple more neb treatments, but my breathing was still much better than in the previous weeks. Spent most of the day hanging around the house, eating junk food and trying to figure out what I’m gonna wear for ET race (costumes are big in that event.)
After a very depressing 3 months of bouncing in and out of the hospital and thinking I was near my end, this weekend gave me a little more reassurance that I still have a few good breathing days left in me…that are worth living for.
Congrats to all those who participated in the San Francisco marathon this weekend!
In much the same way that you would keep a diary of your asthma symptoms, I came up with the concept of posting my daily breathing parameters as a way of letting others out there know, (i.e. my doctors, family and fellow asthmatics), on how my lungs are doing on any particular day. I often forget though, that while most chronic lungers know what this stuff means, a lot of people who visit my blog probably don’t. So, if anyone is interested, here’s a little explanation of what all that junk means…. I hope it’s not too confusing.
There are 4 major components to my daily breathing stats: a Peak flow measurement , an FEV1 measurement a Breathing Update ( which is basically a subjective description of how I’m breathing on that particular day, and lastly, a section labeled Todays Fitness Activity where I jot down what, if any, exercise I did for that day. (Ive used the above links for general definitions of what Peak Flows and FEV1 measurements are )
Peak Flows : I do my peak flow measurements several times throughout the day on a digital peak flow meter, which also measures the FEV1. Those readings are then stored on a chip and uploaded to a database which can then be used to plot out trends and other useful info. I designed the peak flow meter graphic on my blog to correspond with my actual Green-Yellow-Red breathing zones , the same you would see on a real peak flow meter.
FEV1 : As far as pulmonary function terms go, FEV1 ( which stand for Forced Expiratory Volume in 1 second) is one of the most useful measurements in quantifying the severity of airway obstruction in a person with COPD or asthma. It’s usually expressed as a percent of normal, but can also be expressed as an actual volume. In the example shown in the graphic above, my FEV1 was 35% of predicted ( based on my height weight ,age etc ). The actual exhaled volume measured to come up with this percentage was 1.05 liters. This means, that blowing out as fast as I could, I was only able to exhale 1 liter of air from my lungs in the first one second, or appx 35% of what I should have been able to do if I was healthy. Since my FEV1 hovers in the 30-40% range, my disease severity is considered to be in the severe to very severe category.
Breathing update: Because I am a real person and not a machine, the way I “feel”, doesn’t always jive with what the numbers say I should feel like. Everybody perceives breathing discomfort differently. What I might perceive as mild respiratory distress, you might perceive as major distress, and visa versa. For that reason, Ive included a subjective description of my symptoms… or lack of.
Todays Fitness Activity: Finally, because this is after all… a fitness/asthma blog, I wanted to place to record my physical fitness activity. This is where I usually input what kind of exercise I did ( or did not do ) on a particular day. As far as my fitness and /or racewalking goes, all the miles I walk are represented by the little odometers you see just below the header of the blog. These are not estimates, they are the actual number of miles Ive walked and are taken from my Garmin Forerunner GPS.
I always try to write a little something about each and every hospitalization Ive experienced, but this is one Id just as soon forget about. In total , I spent 7 days in the hospital, 6 of them in the Intensive care unit, 3 of those days spent on continuous Bipap with an Albuterol bleed-in of 15mg/hr, in what seemed more like a living hell then a type of therapy.
This time around when asked what my wishes were concerning intubation, I chose not to.. ( not to be intubated that is) …..Big Mistake, I thought I was doing the brave thing by declining to be intubated if my breathing got bad enough. Feeling like a old pro at this, I thought I could easily fight off the attack with only continuous nebs and Bipap. Had I known just how difficult it was going to be to breath on a bipap machine during an asthma crisis, I would have definitely opted for the breathing tube and ventilator. Bipap therapy supposedly decreases the work of breathing during an acute attack, though in my opinion, the feeling of suffocation you get from having a mask strapped tightly over your face, outweighs any clinical benefits you might have achieved . We were however, able to prevent my CO2 from climbing into the 70s, though it took 3 days to do it. I can’t fault the medical staff, they were great as usual. During those first critical hours they asked me repeatedly..are you “getting tired?” I kept refusing, confident that I could tough it out on the bipap.
Can you say Ativan and Dilaudid? Very untraditional for a severe asthmatic to receive opiates during a respiratory crisis, but in my case these drugs help quell the severe air- hunger associated with fighting the attack.
Hey…I’m usually the first to poke fun at my own disease , and sometimes I’ll even video tape some not- so- pleasant moments in the hospital, but the video my partner captured this time, actually made me cringe. At the end of the clip you can hear the Nurse jokingly say….”your CO2 hasn’t even hit 60 yet”! She says this because Ive been known to have PCO2 as high as 90 during an attack without being intubated. ( Btw…normal PCO2 is 45 or less)
Today, thankfully I’m home breathing considerably better, but the whole experience has left me physically and emotionally drained. Its taken me 95 hospitalizations to finally come to the realization, that I’m probably going to die from this stinking disease. That’s fine, but you know what? …Screw the “dying with dignity” bit! If my death should come in the form of an asthma attack, I hope it happens quickly, or at the very least ,with a tube shoved down my throat, with me peacefully asleep on a ventilator. I’ve lived 54 long years with this disease. I have no desire to suffer anymore. Ive paid my dues. Call me a coward if you want, but I’m changing my advance directives back to a “full code”. Though I would prefer not being resuscitated if it was evident that I would suffer probable brain damage in the process.
Released from the hospital on July 14th, but still very sick. This was a real bad one. Will try to update in a few days when I’m breathing better. Thanks for all the well wishes!
I was going to blog about a nicer topic this evening, but my breathing kinda put a damper on that. Ive been flaring mildly on and off all week, but on Monday afternoon, my peak flows took a nose dive. In a matter of minutes my chest got really tight and my peak flows dropped from 350 to 190. A possible suspect for the flare -up could be allergies ,as my eyes having been bothering me too. The fact that I’m so tight and not wheezing, has me a little concerned.
It’s now 4 am Tuesday morning and I just emailed my doctors to tell them whats going on. Ive been awake all night trying to fight off this attack,but I’m starting to get a little pooped out. Ive been taking neb treatments every 30 minutes with only minimal relief and a few minutes ago I bolused myself with 60mg of pred. As crazy as it sounds, the only reason I haven’t gone to the ER yet, is because based on the way I’m feeling right now, they would for sure intubate me…yeah it’s that bad. I just can’t deal with the whole hospital thing again so soon. The thought of being jabbed and tortured with a million needles is a strong deterrent.
Its really difficult for me to update my blog to let people know how I’m doing when I’m sick or in the ER, but I always try to get word out ( my family reads my blog too). Hopefully this flare -up is more bark than bite, and I’ll shake it off by tomorrow. If not, number 95 might come sooner than expected. If I do end up in the slammer (it will say so on the sidebar), you can use this link to reach me.
OK.. I’m too short of breath to write anymore tonight. Everyone have a great week!
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 !
(click to enlarge)
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!
Last Saturday I did my first post-hospital semi long training walk for the new racing season, but it turned out to be much more difficult than I thought it would be. I was pretty much breathless the entire distance and had to terminate the walk at mile 7 instead of mile 8 as planned. Since my lungs tend to dictate how far and fast I can walk, it looks like the San Francisco (1/2) marathon is NOT going to happen for me this year. My lungs are just too screwed up right now to tackle a 13 mile walk. That last flare up really did a number on my body, and with less than 4 weeks to prepare, there’s no way Id be able to pull it off. I’m a little bummed, because I really thought Id be healthy enough, to not only do the race, but also be able to push myself hard enough to PR it.
I may, as the date approaches, sign up to do the 5K or progressive marathon just for fun. A lot of my friends do the various races at the SF marathon every year and it would be nice to at least hook up with them.
( My buddy Brandon and I at last years race)
Assuming my lungs cooperate and I’m able to get myself back in the groove, my next real race will be the ET midnight marathon on August 8th. Once again though, I’ll probably downgrade to the 10K , because I don’t wanna stress myself too much until Ive had a chance to recondition. Last year I did the 1/2 marathon , but I think considering the environment, it was a bit too much for me. The 1/2 marathon course goes basically up the side of mountain for 7 miles and then down for 6.
The plan this year, is to fly out to Las Vegas the day of the event and then rent a car for the drive out to the actual race site. It will definitely be more tiring to do it this way, but I’ll have the flexibly of coming and going as I please and wont have to sit on a cramped bus for 3 hours.
I’m still mulling over my race choices for the fall. Some of the best races around here occur in October, November and December.
As asked by Physicians when I’m in the hospital and ranked in order of dislike.
( I’m sure my fellow lungers can relate)
#1) What triggered your asthma attack this time?
#2) Why does your asthma get so bad?
#3) Do you think anxiety makes your asthma worse?
#4) Do you know how to check your peak flows ?
#5) What can we do to keep you out of the hospital?
#6) Have you ever been intubated for your asthma?
#7) Why did you wait so long to come in for treatment?
And this is how I usually answer them.
#1) I don’t know.
#2) I have bad asthma.
#3) Suffocating to death tends to make me a little anxious .
#4) I know more about pulmonary functions then you can ever hope to know.
#5) How about taking care of me when I’m NOT sick.
#6) I hold the worlds record.
#7) Because I hate answering stupid questions like these.
Had a follow up appt with my pulmonologist, Dr. Lazarus yesterday. Among other things, we were talking about why my asthma is so bad. I jokingly blurred out…. it’s was because I was a victim of the 1970′s asthma mentality, where they were into over-treatment and under-treatment, but never prevention. It was a time in asthma history where patients were treated with toxic amounts of certain drugs . I told him about this doctor I saw a few times in the early 80′s , who used to overdose me on aminophylline injections. He gave me so much of the drug one time ,that my heart went into a weird fast rhythm and I had to go the hospital. When they checked my blood level, my theophyline level was 30. That’s about 8 times higher than it should have been. Aminophylline is basically a powerful stimulant that works as a bronchodialator, but is usually given slowly through an IV or in pill form. It was a popular asthma medication in the 60s, 70′s and 80′s and still is in the UK .
Anyways, at the end of my appt, Dr Lazarus tells me to check out this clip from the late 1970′s he found on Youtube called ” Aminophylline”. He wouldn’t tell me what it was about, but just that I should watch it when I get a chance.
So I get home, I look up the video on Youtube and watch it. Imagine having you asthma cured with a simple injection. But wait !.. theres more to this story. Try to watch the entire clip if you can.
Now that you’ve seen the video, here’s the really weird part, you know that “doctor” I mentioned earlier in the day? He’s the doctor in the video….Dr. Robbins! Those aminophyline injections that his patients claimed cured them, did nothing for me except make me nauseated and tachycardic all the time.
But, here’s the funny part….. You know that “other” doctor they show in the clip? Thats Dr Lazurus! ( 35 years ago) who has been my lung doctor at UCSF now for 6 years. That would explain why he wanted me to see this video. How funny is that!
(As a side note, Methylzanthines (aminophyline), are still used to treat asthma and COPD today, but not as often or widespread, and certainly not in toxic high doses like it was in the 1970′s).
Despite all the difficult times, I’m very lucky to call this place my home. Close enough to the city center , so we never get bored, but far enough away so we can enjoy the quiet.
My great great grandfather was one of the first pioneers here, arriving in San Francisco from Ireland in 1848. He made his fortune by selling goods and real estate during and after the gold rush.
Yesterday , Douglas and I hung out at some of our favorite spots. The steroid taper is going well.
My Front yard:
My Backyard:
Inside My House :
At the request of my friend Kerri ( Sorry , only a few pics, as this is our private sanctuary.)
Ive resisted this for a long time, but I suppose it had to happen eventually……I now have oxygen in my home. ( Just the sight of these little green cylinders bums me out). Hopefully, after I recover from this current bout, they will stay hidden in the closet , never to see the light of day again. The good news is that my O2 sats are near normal again when I exert myself. Ive only been desaturating to the low 90′s, compared to the low 70′s just a week ago.
Having O2 available in my home, was one of the conditions of my release from prison last week. They weren’t going to discharge me unless I agreed to it. I’m only going to use it during flare-ups, but some of my doctors think that because my asthma is so severe, that I should be on it all the time. Apria ( the O2 company) even tried to set me up with a concentrator ( a machine that makes oxygen), but I refused to take delivery. I was able to get the order changed to just small cylinders.
Asthma is not emphysema…my diffusion studies are near normal. Just because a person has severe asthma, doesn’t mean that they require supplemental oxygen. For the most part, my O2 saturations are very good when I’m feeling well. I only desaturate during exacerbations or too much exercise.