Member

And here are my new Locos to prove it.

Don’t worry, I’m not slacking off. I’m still a big time racewalking and endurance walking freak, but I’ve been, you might say, a little preoccupied with the asthma thing and haven’t had much time (or breath) to devote to my walking hobby. Hopefully , things will improve in the upcoming weeks and I’ll have some walk related training to write about instead of you know what.

My next scheduled race isn’t until the middle of August, so I still have plenty of time to get my act together. It’s the ET Full Moon Midnight marathon , and except for the fact that the starting line sits at 4800 feet and climbs to 5500 ft, it looks like it’s going to be an incredibly fun race. Since Ive never done a marathon walk at that such a high elevation, I decided to only do the 1/2 marathon. The date of this race makes it a good spring board for the Portland marathon which happens in October, but I’m not sure if I wanna walk Portland for the 3rd time .
I may just go along for the ride to be with my friends and for the pizza….OH MY GOD,the Pizza place we found the last time we there is worth the 1200 mile trip alone. That ….plus seeing my friend Anitas face as she grins her way across the finish line for the first time.

Tomorrow night, I’m going to my very first Giants Baseball Game at AT&T Park. My good friends and racewalking buds, Vicky and her husband Jim invited me to their Skybox ( whatever that is). As you can probably tell, I don’t know much about baseball , but it sounds like a fun evening in the city.

I can’t wait till I’m feeling better so I can break these puppies in…

Before we talk about me, I just wanna congratulate R- cane who recently became a Boston Qualifier…..Way to go Francis !

OK, now for more of my drama….

Here we go again

Yup, I just got out of the hospital AGAIN for the 3rd time in just 6 weeks. #91 occurred on May 6th at 7 pm.
But WAIT..there are two sides to this story. First there’s the “I can’t believe this S**t is happening again” story and then there’s the ” Following my asthma action plan pays off big this time” story. Lets start with former.

I was doing great with my steroid taper from the previous hospital stay, I was even beginning to walk again.Then this past Sunday night, without a hint of trouble brewing, I woke up in the middle of the night feeling warm. I took my temp and it was 101.3 , the only other symptom I had was a headache, so I took a Tylenol and went back to sleep .In the morning my temp was normal again and chocked it up as a 24 bug. Later that day, did feel a little tighter than usual and had to take extra neb treatments, but I didn’t think it was anything usual. Next night, same scenario, I wake up at 3 am , and this time I was burning up. My temp was 103.8 Somethings not write . I cooled myself down with some wet hand wash clothes, took Tylenol again and tried to sleep. but couldn’t. In the morning I rechecked my temp and it was down to 99. For the rest of the day I felt slightly flu..ish., but not terrible.

Fast forward to Monday afternoon……. I had a scheduled appt with my primary doc , it was a follow up visit from the previous hospitalization to figure out what went wrong that led me to that long hospital stay. Well, you know how they usually check your vitals and stuff before they actually out you in a room to see the doctor? Well, as the nurse was checking my O2 saturation, I could here her mumbling….”somethings not right.” ..”are your sats always this low? ” I looked at the the machine, it was reading 79% ! Yikes.. I took a few deep breaths and it jumped to 82%.. In disbelief , we tried putting the probe on different fingers, but kept getting the same low readings. I figured this can’t be right, I feel fine,something must be wrong with the machine, I mean there’s no way my Saturation was in the low 80’s, so we found another pulse ox machine and the same thing….. 82-83% ! This is too weird I thought. I was tired from not sleep , and I still had a slight headache, but I thoughtI was breathing fine. Well, I discussed the saturation findings with my doc, but she thought that in my case , we should ignore the numbers, and base things more on how I felt ( Just the opposite of what my pulmonologist assess me) She kept saying how great I looked and that the O2 sats were probably normal variations for me. Hmmm…I thought, 82% is not normal for anyone, especially an asthmatic. I didn’t press the issue because I didn’t want her to mention the “H” word ( hospital). My lungs sounded clear, she I looked great, so I just went with it.

Fast forward one hour later……. So I’m driving home from the doctors office, but I can’t get those lows saturation numbers out of head. Even now my breathing still felt OK. Why would my numbers be so low? So when I got home I decided to email one of my pulmonologists to see what he thought about all this.

Here is the actual email exchange between myself and the lung doc ( who’s name I left off for privacy):

_{Dear docs , I wasn’t sure who to write to since I’m kind of in limbo until July, but I wanted to keep one of you guys in the loop with whats been happening since I was d/cd from the hospital 2 weeks ago.This past Sunday, I started getting headaches ( which I never have ) and on Sunday night I spiked a temp to 101.
NO biggie, but last night I woke up at 3 am with a fever of 104 . I took some ibuprofen and a few hours later it dropped to 100.
During the day today, it’s been around 99-100 while on Tylenol , I’m still having headaches.Today I had a follow up visit with my primary doc. During the exam my SPO2 was 82%. After some deep breathing and rechecking it on a several machines and fingers the highest I could get it up to was 85-87%. The doctor wasn’t too concerned because she has decided not to make decisions about my asthma care based on numbers. That’s fine , except I NEVER have a low sat when I’m breathing.My b/s were essentially clear, no pleurtic pain or cough. No sputum, peak flows are all over the place, but have been hovering in the high yellow and low green zones.My dyspnea is minimal at rest , moderate with exertion.Any ideas?
Please let me know.Thanks, Steve}

_{Stephen, I think we should take very seriously the low Sp02. I strongly advise you to come in to the ED to get a CXR, since I think it is very likely you have a brewing bacterial or viral pneumonia. This should not be managed by email given the severity of the things you describe.}

_{Dear Dr. Thanks for responding ! I didn’t mean to alarm you and I know its hard to dispense good medicine via email , but you don’t have to worry with me. I’m a little more educated than the typical asthmatic . As far as getting a Chest Xray done. My PCP thought I looked great today, and because my lung sounds were clear, she decided that a CXR was not indicated and that a new pneumonia probably wouldn’t show up this early anyway. I don’t care about the fevers, I’m sure they will diminish, I was just a little shocked that I had such low sats even though I’m breathing fine.If I go into the ER and have a CXR done , and it gets back to her, She’s going to be pissed, because shes going to think that I don’t trust her judgment. (At times I just feel that my case overwhelms her.) If its OK with you , I think I’ll just wait and if this weird fever returns tonight, I’ll get a CXR tomorrow. I promise !! I n the mean time, I just bought another pulse ox ,cuz now I’m wandering if Ive been getting inaccurate readings on the one I already own. The new one is FDA approved and I should get it by Wednesday. It wont help me this time, but it might come in handy in the future. Isn’t it strange that when Im having a hard time breathing, my sats are usually OK , but when Im feeling fairly good my sats are crappy . My body is so weird. Is it possible that I just have the flu and that my airways are still inflamed from the last flare-up, hence the low sats .? Thanks for taking the time to answer my email.}

_{Dear Stephen,
My recommendation remains to come in for evaluation and a CXR. You are free to refuse this advice, but I cannot in good conscience advocate otherwise given the severity of your disease.}

_{Dear Dr, If it was anyone else, I say forget it, but I respect you and know that you’re looking out for my best interest, so I’ll come in this evening. It will take me a couple of hours to get there. Thanks for hooking me up.}

So I reluctantly headed back to the city and called my partner Douglas (who’s Birthday it was that day) telling him that I just had to run over to UCSF for a quick XRAY and that I would be back in a few hours and that we would still be able to celebrate his birthday.

I arrive at the ER 45 minutes later, the place is absolutely packed. I tell the triage Nurse that I’m a high risk asthmatic and that my doctor sent me over for a Xray and a quick assessment. They told me that they were very busy and to please wait in the waiting room and that they would triage me as soon as possible. Of course there was no where to sit. There were people out in the waiting area that had apparently been waiting several hours to see a doctor, some of them getting very impatient and belligerent with the staff. I was beginning to wonder if Id have to wait a long time myself to be seen .Usually when I come here, Im having a hard time breathing and they rush me right in, but today I dont feel that bad. Well, I only had to wait about 20 minutes, when they called my name . As they were taking my vitals, one of the ER docs came in and was talking with my lung doctor on the phone. The next thing I new, they were whisking me to one of critical care rooms , and though I was no real distress they proceeded to hook me up to all the monitors and put an IV in. I explained that I was only here because I had experienced a few fevers and that my O2 saturations had been dropping earlier in the day. I told them that my breathing wasn’t that bad and that I was hoping they would be releasing me as soon as they were done doing all their tests.

Before I knew it, 2 hours had already gone by and despite the fact that they had given me 3 neb treatments back -to-back ( standard ER treatment protocol at UCSF) I could feel my lungs getting tighter and my sats were starting to drop again, uh oh …I thought, maybe I really am sick and it’s now just kicking in. Sure enough, after the first ABG came back , that confirmed it, my PCO2 was creeping up and my O2 sliding down . Here the actual ABG drawn at 11 pm (for you medical people — PH 7.34 PCO2 54, PO2 45 on room air) Next ABG at 12midnight ( PH 7.30, PCO2 59, PO2 127 on 100% O2) Yup I was on my way to full blown respiratory failure. I could feel it now. It was getting harder and harder to breath. They put me on a continuous albuterol neb, gave a 125 mg solumedrol ,some Mag sulfate, placed another line, drew a million labs and got the intubation cart ready just in case. Shortly after that they put an isolation sign on the door of my room just in case I had the influenza bug. ( the last thing you want is a flu epidemic in an ER) Great..Now every time someone comes into the room they have to wear a face mask. They probably think I have some weird disease because the warning sign doesn’t actually specify what it is you are being isolated for . It just says ” isolation for dropplets ” (meaning ..don’t let me cough on you.)

The sign on my door

Geeze lousie, I had gone from feeling only minimally distressed, to full blown respiratory failure , to an isolation room, in under than 6 hours. That’s how fast my body can turn on me. So, obviously the fevers and the dips in my O2 at were a signal that something had been brewing all along. How come I didn’t put 2 and 2 together? I’m more tuned in to my body than most people, yet I can’t seem to sense the severity of my own asthma symptoms.

Now the second part to the story;, Because they had jumped on my so fast , by 5 am, by ABGs took a turn for the good and I breathing a lot easier. The 5 am ABS was ( ph 7.35, PCO2 48, PO2 49 Hco3 26 on room air. Because I had showed in the ER before my attack had gotten out of hand, they we able to reverse the attack in less than 8 hours. I can’t tell you how rare this is.

Even though I had been admitted as an inpatient just a couple of hours after arriving in the ER , there were no hospital beds available ….the hospital was full (not uncommon for UCSF) so, I remained in the ER on an uncomfortable gurney for 18 hours. It was now 3 pm the next afternoon! I was breathing much better, not perfect, but it was obvious that the critical part of this attack was over and that things were starting to wind down. I asked if I could go home, but because my Flu ( dfa) and other tests hadn’t come back yet, they requested that I stay at least one more night to be monitored . Luckily , they finally found me a real bed in a private room upstairs. It had to be private, because I was placed in isolation. The next morning I felt great, all of my tests came back negative and I was discharged at 11 am , a total of 42 hours…..thats a record for me. My final diagnosis was flu and asthma exacerbation ( the flu want the real bad kind).

OK , so why was this a milestone event. Well, first of all , this is the first time that I followed my care plan and my doctors instructions to the “T”. and because of that, I went in early and narrowly escaped a lengthy ICU stay ( this time I didn’t even go to ICU) .Secondly , but kinda frightening to me, is that even though I didn’t feel short of breath, there was a potentially lethal asthma exacerbation brewing inside …..and I didn’t even know it! Despite the fevers, the headaches and the dropping saturations, I still felt like I was breathing OK. so in my mind I thought..why do I need to go in, all I have is a little flu bug. In fact the only reason I went in to the ER is because of those emails you just read. But it’s a good thing I did cuz apparently whatever flu bug I caught was silently effecting my lungs, even though the symptoms didn’t stat manifesting themselves until later that evening when I was in the ER. Had I waited until the next day, like I wanted to, I’d probably be on a ventilator today and not writing this post.

So,all and all, I guess a lot good lessons came out of this creepy experience. The main one being, that its better for me to come in at the first hint of trouble, and spend one day in the hospital (even if it happens monthly) , than it is for me to wait till I know definitely that I’m sick and end up spending a week in the ICU 3-4 times a year.
The only downside to this hospitalization, is that I’m now back on 60 mg of prednisone and will I have to re-start my steroid taper again. That means big time leg cramps, which means, limited walking for the next few weeks.
PS….This is the 2nd year in a row that I’ve been in the Hospital on his Birthday…I owe him big time!

I was looking back though my blog archives , and found out that this most recent hospitalization makes the 11th one I’ve had since I began fitness walking back in the summer of 2005. That means Ive had to retrain myself to walk , 11 different times in a 3 year period. Thats an average of once every 4-5 months. It’s amazing I can get anything accomplished.
It’s frustrating cuz I cant seem to excel or PR anymore. Just when things start to go well and I obtain a certain level of fitness .. .WHAM ! I get sick and lose all my gains.

Severe exacerbations and the subsequent steroid tapers and recovery phases, take a lot out of you. These 3 to 4 week ordeals are huge stressors on the body… (and mind) .It’s absolutely incredible how weak your legs and lungs become after recovering from a severe attack. It’s not like you can just get out of the hospital, rest a little and then pick up where you left off ( though I’ve done it before). After almost every hospitalization, I have to literally start my training from scratch. And forget about racewalking , during the first 3-4 weeks following a bad attack,my legs muscles are so and my lungs are so messed up, that I can barely do mild fitness level walking, let alone racewalking. Often , I’m lucky to be able to walk a half a mile or so without making myself sicker.

Once Ive wean down a little from the steroids, the re-training process kinda goes like this; I’ll start out by doing very tiny distances at a 20 min/mile pace( which I’m doing now) .Then about every other day I’ll increase the distance. As my airway inflammation resides and my breathing capacity and leg muscle strength increases , I’ll eventually make it back to my baseline maintenance distance of 4-5 miles ,3 times/week. The whole redo process takes me about a month to 6 weeks,assuming I dont backslide from more flare ups. Once I’m healthy enough to walk a 5 mile stretch at about a 15 min/mile pace, then I start slowly injecting some short racewalking intervals into the mix. For me , racewalking breaks the monotony of long distance workouts and it also helps me improve my speed and burn a more calories. But just as with regular walking, I have to re-train myself to racewalk. Even if you’re totally healthy, if you racewalk regularly, your shin muscles get weak and you tend to loose the coordination and technique. Remember also, that racewalking is a lot like running as far as amount the lung capacity it requires, so even on a good breathing day, I can only racewalk 50-100 yards at a time. When I’m at my peak, I can racewalk a short interval at a 7-8 min/mile pace.Blend those intervals into a half marathon and we’re talking about a 12 min/mile for a 13 miler.( My one and only PR for a half marathon). Not bad for an old dude with bad lungs.

Now getting back to the retraining thing;while it’s true that on a couple of occasions Ive managed to pull off a marathon within just days of a hospital discharge, I can assure you though that in those rare instances, I damned near killed myself doing it. My first Portland marathon for example , which I did just 2 weeks after walking out of the Intensive Care Unit, it took me nearly 9 hours to finish the race and it agonizingly painful. Not exactly a race I’m proud of. It was brutal! Not so much because of my breathing, but because of the non-stop leg cramps caused by the prednisone.

The good news for #90, is that I have no pending races to worry about or to prepare for, so I can take as long as I want to heal from this most recent bout. What a relief.

I’ll let you in on a little secret. Ironically, I think one of the reasons Ive been able to complete a 26.2 mile walk so close to a hospitalization, is because of the asthma itself.
Ive said this before and I really believe it, in some respects a marathon and a severe asthma exacerbation are similar in that they are both endurance events. Both require a lot of inner strength and fortitude to prevail. If you have the tenacity to get through one, you can certainly make it through the other.

Here are the bills for that fancy hotel I stayed at last month.

(keep clicking to enlarge)

Heres the bill for the first 7 days

and here's the bill for the last 11 days

Below, are just two out of 28 pages of itemized charges . Gives you an idea of just how much it can cost to treat an asthmatic in San Francisco. I’m sure the insurance company just loves me.

Just a sample of the itemized charges. Notice ventilator and room charge? That's PER DAY !

How about those continuous neb and Heliox charges?

PS…..Just kidding, the food was fine

Last Sunday was the Big Sur marathon,and while I obviously wasn’t able to do the marathon, I felt well enough to make the drive from San Francisco to Carmel to be with my friends who did do it. After such an awful month, this get together was heaven! Meanwhile 1500 miles away, our very own Walkingfasterclub member Mike, finished the Oklahoma City marathon !

Meet my good friend Hansi ( she did Rome with me). Shes one of the fastest runners in the world in her age group. Last week she came in 1st place at the Boston Marathon ( again) and 6 days later came in 1st place at the Big Sur marathon ( again) , then came home and threw a post race part ....Incredible!

As an added bonus, a lot of my Walkingfasterclub group members ( racewalker) showed up

Then theres my racewalking buddies Brandon and Anita. Brandon is a marathon maniac and Anita is one of the most talented writers and the kindest person Ive ever met

Anita had this bracelet made for me....I love it !

My closest friends Rachel and Brandon.

Mike finishes the Oklahoma city Marathon in 8:13 . Mikes not your ordinary marathoner (click his picture to read more about this incredible guy)

I gained back 4 lbs, I look almost normal again

Thats about as fast as I can go without rebounding, dropping down at a rate 10 milligrams per week if I’m lucky. Knowing my disdain for the drug, I could probably do it much faster, but thats gotten me into trouble on more than one occasion.This time I’ll play it by the rules and wean much slower. I’ve had my share of breathing tubes and hospitals for the year , thank you very much.

Thats what the “recovery phase” is all about…the taper. It’s an art form where timing and symptom recognition are everything. Wean too fast, symptoms come back with a vengeance. Wean to slow, your body will become dependent on the drug. Right now Im at 50 mg and my target /maintenance dose is 15mg , so were looking at about 3 weeks until my life gets back to some resemblance of normalcy and I can resume some physical activities. After more than 200 steroid tapers in my lifetime (and probably more), it never gets easier. If anything, the older I get, the harder the taper. My body is so used to being fed steroids, that its too lazy to makes it own.

Im sure Ive mentioned in many other post hospital rants, that the”recovery phase” following a long hospital stay is often worse than the initial exacerbation itself , at least is for for me and I’m sure for many others. It’s not a problem so much with the breathing, most people breath a lot better when they’re on steroids, it’s trying to wean off the steroids thats the tough part. During that time, I’ll experience a whole slew of physical side effects including ,chest acne, finger , toe and neck muscle cramps, paper thin skin, muscle weakness, weight loss, weight gain, bloating and insomnia to name a few.

Then theres’ the mental rush , an outpouring of emotion you cant imagine unless you’ve experienced it . Extreme depression mixed with brief periods of extreme exhilaration and dare-devilness. In addition I also go through this weird process spending countless hours ( and I do mean countless, cuz insomnia is one of the side effects of prednisone), pondering all things related to asthma . Stuff like asthma care , blogging about asthma (like this post), the latest asthma research ,new therapies, advocating, writing for and joining various organizations, speaking with different asthma groups,seeking new lab rat opportunities. etc. ( Well I guess if your’e going to be manic you might as well focus that energy on something positive.) Then as I gradually wean off the drug, I find myself caring less about the importance of the disease, and instead , focus my attention on all the fun things I plan to do when I get back to feeling and breathing normal again. Things like the next marathon or the next big challenge. When I get to the point where Ive weaned all the way down to my maintenance dose, it’s almost like I was never in the hospital or sick to begin with. “Asthma amnesia” I call it. Probably some form of post traumatic distress amnesia . I’m assuming a defense mechanism to help you get on with your life.

Finally , when i do wean off, I’ll experience anywhere from one to 4 weeks of near perfect breathing. That short reprieve will usually give me enough time regain the endurance I lost and life will be wonderful again till the next flare.

Its hard to believe that just 5 weeks ago I walked over 50km in a single day in Rome, yesterday I barely got through 5. The loss of muscle strength , coordination and endurance in such a short period of time, is incredible.

PS…The Big Sur Marathon is Sunday!!!! tons of my friends are doing it. Even if I was breathing OK and in shape, the course is way too hilly . Breathtakingingly beautiful….but hilly. Hmmm…..I may just drive down there anyway.

I wasn’t going to post these ventilator pictures because I didn’t want to freak my friends and family out. But you know what? I’ve spent a good part of my life in places like this, so why should I hide them now. I apologize for all the medical terminology, but I didn’t want to water down the severity of this exacerbation by using too many prison metaphors. I’ve tried however, to use informational links when possible for the hardcore medical stuff.

In total, I spent 18 out of the last 30 days in a hospital bed ( conscience for 16 of those days) . 15 days in the Intensive care unit and 4 days in the transitional care unit , both at UCSF Medical center in San Francisco . I’m going to be unusually frank this time, by saying that this ordeal has totally trashed my body, left me weak, frustrated , fed up and depressed. I also feel somewhat guilty as I’m at least partly responsible for this second admission.( I tapered way too fast after the the last bout) Overall, Id only rate the severity of this exacerbation at about a number 5 , relatively minor on a scale of severe attacks. Ive had much worse, but this one seemed to linger forever. It took over a week for my lungs to open back up. One things for sure ,this one definitely darkened my ordinarily bright outlook on life. Maybe Im a little brain drained and dissolutioned after being poked , prodded and examined to death for 19 days, but this whole Superman asthma thing is starting to lose its appeal. Its becoming an increasingly difficult game for me to play, and I know that I will eventually lose. Still, I hold on to the remarkable title of “Still active and breathing after 53 years in the game”

Something new that I learned about myself during #90 , is that even though I’m 53 years old, I’m still way too naive, and way to willing to divulge specific information about my disease and my personal life.( can you say BLOG?) Anyway, during a rare moment of weakness while in the Emergency room, I did the unthinkable, I spoke candidly with a resident /intern doctor about my recent trip to Rome and the marathon. I can’t stress this enough! … When speaking to a resident/intern, never …NEVER, combine the words ” Walking a marathon in Rome ” with ” I am a severe asthmatic” in the same sentence. To the uninformed medical practitioner , if one statement is true, then the other certainly has to be false. This Physician actually made the remark that if I was able to travel all the way to Rome to walk a marathon, then there’s no way my asthma can be as bad as I claim. He implied that I must be faking it or exaggerating the severity of my symptoms. The sad part , is that I actually started feeling guilty about taking up valuable bed space and began to think that maybe there was some truth in what this guy was saying. After all, I did do a marathon . Well if I’m an actor, I must be a pretty damn good one, because 18 hours later , my PCO2 climbed through the roof , I went into respiratory failure and ended up on a ventilator for 2 days. After I came off the vent I barely remembered the incident , but I was told that he was reprimanded and removed from my care ( no doubt over concerns about a potential lawsuit, if any of that nonsense showed up in my chart) . His comments bothered me, but I really cant blame him. Like my pulmonary doc says, I’m the odd ball, the exception , not the rule . The burden of proof will always be on me, not the medical establishment.I cant proof my disease with words, because I don’t fit the mold, I look too healthy. I have to prove it clinically with years of medical records and the documentation of hundreds of tests. Anyways , from now on, Im not volunteering anything. I cant help it that I’m an RT and asthmatic ….and an athlete. (Actually I became an RT because of my asthma.)

Another first, is that I finally caved in to my pulmonary doctors subtle coaxing to have a Psych evaluation done. Not because he thinks Im crazy (which I probably am) , but because it’s a known medical fact that everyone with a chronic disease has anxiety issues. It goes with the territory. The question here was whether anxiety was causing my asthma flare-ups or whether the asthma attacks themselves were causing the anxiety . OK, So lets see…. If someone puts a pillow over your face and then sits on it, would that make you anxious? Probably .. And , would that anxiety make it harder to breath? Probably…, and if so, would that increased anxiety make you suffocate even faster? Probably ! . So what did 3 different Psychiatrist’s , during three days of interviews and psychoanalysis find out about me ? Well, First of all, I exhibit both type A and B personality traits, Im also very stoic when it comes to my disease which pretty much negates the anxiety causing the asthma thing. Secondly, I’m no crazier than your typical asthmatic, though I do tend to be a little dare-devilish at times. I definitely don’t have psychosomatic illness ( meaning I don’t cause my own asthma) and I don’t have Münchhausen’s. In fact, just the opposite is true, I don’t like attention or people worrying about me, and I hate hospitals. They do believe however, that once the asthma cycle starts , that anxiety does play a role which can trigger a vicious cycle. Additionally, I have a very real problem with steroid induced psychosis ( everyone does) , and that a little Klonopin can go along way in blunting some of that anxiety. So, now on top of 18 other drugs, I’m on a trial Klonopin to keep the anxiety at bay while I’m weaning of the steroids . I also started taking ambein instead of ativan for for sleep . Lastly they added a nice combination of potent opiates for that occasional onset of severe dyspnea. Thank god all these drugs are formulary.

So to put #90 to rest, and knowing how much I love numbers, here are some fun statistics. First of all, I’m the real deal. Sorry skeptics. I have severe persistent asthma and I have one of the most complex cases of the disease ever documented in a person still living…Completely verifiable. OK , what else, during this hospitalization I inhaled anywhere from 10-20 mg of albuterol per hour CONTINUOUSLY for 6 straight days with Heliox!! ( sound like donald Duck)Thats the equivalent of more than 900 individual nebulizer treatments in a one week period. I received a total of 2500 mg of steroids via IV. I was intubated , I spent appx 12 hours on Bipap and 40 hours on the ventilator. I received more than 100 finger sticks for glucose checks ( diabetes caused by the steroids). Because I have no veins left ( steroids) , they had to use my neck and foot veins. I received appx 120 injections of Fentanyl( my favorite opiate) for dyspnea . I received 30 hits of heparin and lovenox ( in the stomach no less) and countless other medications. The cost for this fancy hotel was a something like 280 grand….Thant’s 280 THOUSAND DOLLARS!

Finally, recovery from this one is going to take a little longer than usual. For the first time ever, I’m actually going to follow my doctors advice and wean off the steroids very slowly… I don’t want a 3rd relapse. That doesn’t mean I’m going to sit on my ass until I’m a 100% back to normal. Already Ive gained back 3 of the 15 lbs I lost and starting as early as tomorrow Im going to attempt a 1 mile walk. I tried to do it today, but my legs were so wobbly , I kept falling over.

OK…Now for some more gross pictures.

Day #2 , too tired to breath

Day #4, time to come off the ventilator

My Superman Band that Brandon gave me. I wore it the whole time

Day#9 finally out of the ICU

Did I mention I lost 15lbs ?

I have no veins left ,so they have to put IVs in my neck

Day 10 , up and walking again

Favorite Nurse and RT

Counting the days till freedom

Even though I ate very little of it, UCSFs food is pretty good and there\'s lots of it.

OH..and here’s kind of a scary thing thats never happened to me before. Actually, I didn’t remember it until one of the Nurses asked me about it after I was off the ventilator. Apparently, right after I was intubated, I got really agitated and they couldn’t figure out why.They knew something was wrong but didnt know what . They told me that I kept on trying to point to the letters P- A -R A on the letter board. To play it safe they decided to turn the Propofol back on and knock me out (turning the propofol on is like turning a sleep switch on ….it works really fast) . It wasn’t until I was extubated 2 days later that they put 2 and 2 together and figured out what had probably happened.You see, when they intubate you , the anesthesiologist uses a quick acting sedative to put you to sleep, then administers a paralytic to paralyze you and to stop your breathing so they can insert the tube into your windpipe without you gaging or fighting. They also do it in asthmatics to rest the breathing muscles. Well, it turns out that I probably wasn’t getting enough propofol before the paralyzing agent wore off. It was a scary feeling because I was fully awake but couldn’t covey this weird state of semi-paralyze to the Nurses or doctors. I could move my fingers a little , but not the rest of my body. Im so glad the Nurse cared enough to investigate this matter further. At least I know I didnt dream it.

MANY THANKS TO THE MANY PEOPLE WHO HAVE TO DEAL WITH PEOPLE LIKE ME…. FOR A LIVING $$$$ THEY DONT PAY YOU GUYS ENOUGH!

Respiratory Therapists: To many too mention , UCSF has the best RTs !

ICU Nurses: Too many to mention

TCU Nurses: Polina, Lili, you’re the best!

Physicans: All of then except the jerk who believes you cant have severe asthma and live a life.

This was one of the toughest hospitalizations I had so far, (definitely hard time,) and it will probably take me a full week to recall and write about most of the details, but I think its a story that will be worth reading ….even if you’re not an asthmatic.

Give me a few days to heal and I’ll tell you more about it.

Thanks for sticking with me…..

OK, I violated my parole and have been re-sentenced to another stint in the UCSF pokey. The provisions of my earlier release called for the gradual reduction in my shortness of breath ,while at the same time, showing an increase in my peak flow numbers. Well, for some reason none of that has happened. After being out on bail for almost 10 days, I’m still very SOB. Not sure if it has something to do with my steroid dosage or the possibility that I was hit by another trigger ( allergies?) Whatever it is, its causing me to re-flare over an existing exacerbation. This is not a good thing.

It’s kinda weird that Im able to write about this before the fact, but I was actually given advance notice of their intention to re-incarcerate me yesterday. I waited until today to surrender, because I thought I could come up with new evidence that would clear me. Well, no such luck, my PF’s still suck.
This will be the first time in over 20 years that Ive had to be re-admitted for backsliding, rebounding, re-flaring or whatever you want to call it. Am I ever gonna heal ? The summer racing season approaching and there’s a lot I want to see and do.
Cmon lungs…give me a break.

Here are a few more pictures taken during the marathon. It’s just now starting to sink in that I was actually there and walked 26.2 miles through Rome.

Click on this wide angle shot and see if you can spot me .

Birds Eye View

Rome Marathon Start