(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

I’d been having vague flu like symptoms, such as stomach bloating and chills for about a week before my lungs started to act up. Less than 3 weeks earlier I had received the H1H1 vaccine as well as the regular annual flu shot, so the last thing on my mind is that I might actually be coming down with the flu.

By New Years Eve afternoon my peak flows started to trend downward, and by that evening they had dropped from 340 to 200. My sats fell from 97 to 89%. I was requiring neb treatments almost every hour and had considered going to the ER right then and there, but had decided against it because of it being New Years eve and all. I figured the hospitals would be jammed with New Years revelers , so I decided I would just try to tough it out till morning and then re-assess. Maybe by then I would feel better. After a horribly breathless and sleepless night spent next to the nebulizer machine, I figured I had had enough, bit the bullet and went to the ER.

As is usual for me, rather than being carted in or delivered by ambulance, I strolled into ER on foot. I told the triage Nurse what the problem was. She took down my name and asked if I was in serious distress at the moment ( since I never really look sick) , I said I was OK at the moment . She had me take a seat in the waiting room ( which by the way, was pretty much emptied at 11am). 5 minutes had past, then 10 minutes, and 30 , and still they had not called me in. By now it had been almost an hour since I had a breathing treatment and I was really starting to close up. I hate making a scene , but I thought I was going to pass out, so I stood up and walked back over the triage window. The Nurse took one look at me and said ” OH MY GOD .. You haven’t been seen yet??? I said no, and I think I’m going to pass out. Within 30 seconds I was on a gurney on my way to the resuscitation room . I didn’t actually pass out, but I sure prompted a lot of people into action. Before I knew it, I was on a continuous albuterol neb with people whirling around me trying to get IVs in. They asked the usual questions.. Have you ever been intubated? Before I could answer, one of the ER doctors recognized me and said “He’s a bad one….he’s been intubated a dozen times”
Within a record 30 minutes, the ICU team had completed their evaluation and I was on my way to the unit.

In the ICU they put me on the usual Bipap setting of 12/5 with 15mg/hr of Albuterol piped in. Because of my flu symptoms, they swabbed my nose with the rapid flu test, put me on droplet precautions and placed me in isolation, which means anyone coming in contact with me had to wear a mask and eye shields. Im sure the staff weren’t too please about that ( I know from personal experience what a pain it can be to work with a patient who is in isolation, especially a ventilator patient.)

For the first few hours, the bipap seemed like it was helping, my Sats had increased to 98% with an FIO2 of just 40%. Although I was saturating well, I was starting to feel that all familiar ache that I feel when my CO2 starts to climb. After several unsuccessful attempts at placing an Arterial-line ( which hurt like hell), they finally gave up and resorted to doing individual ABG draws.

(My Hannibal Lecter look before Intubation)

I had now been on bipap for about 4 hours and my PCo2 was starting to climb. The first PCO2 came back at 43, but I was on bipap and my resp rate was in 50s ( this is not a good sign). An hour later my PCO2 was 60. A half hour after that, it was 66 and my Ph 7.29 . It was time for the intubation talk. Rather than himming and hawing about how long to wait, this time I told them straight up, just intubate when you think Ive had enough. They agreed, and 30 minutes later it was lights out for me. 14 hours later I woke up with a tube down my windpipe.

Here’s a clip my camera-happy partner took. They were in the process of weaning me off the ventilator and just about to take the ET tube out.

About 1 hour after that video was taken, I was extubated and talking up a storm …or should I say cuzzing up a storm. Why was I not kept down longer? Why didn’t they use propofol to sedate me. Why were the RTs being so rude to me this time?

The anesthesiologist had promised me that they were going to use propofol and keep me asleep for at least 48 hours, but it turns out that I had the same weird reaction to propofol as I did during the previous intubation. Something called “infusion syndrome“,so they had to stop giving it to me. They thought it was strange, because propofol infusion syndrome usually occurs in people who are sedated for several days.
For that reason they had to use Versed and Fentanyl instead of propofol to keep me sedated, making it much harder to keep me asleep. At one point I actually remember walking up “paralyzed” and unable to move or communicate. Apparently they had not sedated me enough and I woke up before the paralytic agent (a drug they use when they insert the tube) wore off. Talk about a horrible experience. Nothing like being a zombie. In total, I was on the ventilator for less than 2 days.

After being extubated the RT gave me the choice of using the continuous neb or the bipap…. of course I chose the neb. I did Ok for about an hour , but then once again ,my PCO2 started to climb. Not happy with my recent ABGs, the RT comes into the room accusing me of causing this spike in my CO2, because of not following her instructions of using the bipap. WHAT THE F!
Since when is the patient suppose to decide what type of therapy he gets? Even an RT/ patient deserves someone else to call the shots when he’s sick. I didn’t like her attitude and I told her. The next thing I know, she sends in her supervisor who starts patronizing me. He says to me…” your Ph is 7.30 and your CO2 is climbing again. If you want , I can help you correct it. If you’re not willing to help,then there’s nothing I can do for you. WHAT THE F AGAIN? What’s with the all the attitude. Eveyone was nice to me before I got exubated. What did I do?

I was so pissed off I wanted to scream, but I figured that they would treat me better if I did what they wanted. So I just sucked it up and did what they asked. The male RT set me up on what they call “non-Invasive” ventilation. It’s basically where they hook you up to a ventilator with a mask instead of an endotracheal tube. Its just a fancy way to give Bipap. He also encouraged me to play with the ventilator settings , so that I could adjust it the way I wanted. ( Remember, I’m an RT. I know how to operate ventilators). At this point I couldn’t figure out if he was making fun of me, or if he appreciated the fact that I was trying to play ball with him and cooperate. In any case, his act of showing a little kindness paid off, and within a short time my ABGs were stabilized and everyone was happy, including myself.

12 hours later I was strong enough to breath on my own and they were able to discontinue the breathing machine entirely. So, what was up with all the attitude they were directing my way? ( more about that later)

I have now been in the hospital for 3 days, been on and off the ventilator, and was starting to breath a little better. The Rapid flu antigen test came back negative, but because the test is only 50% accurate, they decided to do the more sensitive test for swine flu. That test takes 6 days and had to be send the to state for processing. What this basically meant, is that even if the test was negative, I would be spending the rest of my hospital stay in isolation. I really didn’t mind because it assured me a private room my entire hospital stay.

On Day 4 I was deemed stable enough to be transferred to the step down unit, where I stayed until my discharge 3 days later. While there , I was placed back on a continuous albuterol neb, but this time the dose was decreased to 5 mg per hour.I did fine on that , but began coughing much more than I usually do. My biggest complaint was the congested nose and the unrelenting chills from whatever virus I had. Eventually , my chest became congested as well. I was able to cough up some gunk , which they analyzed in the lab. Seems on top of this virus from hell, I also had a bacterial infection brewing and now had bronchitis. The next morning they started me on Doxycycline and decided to keep me in the hospital an extra day. On Friday I still felt like crap, but was home sick and convinced them that I felt well enough to go home.

So, what was all this rudeness and attitude I was detecting from some of the RTs and some of the doctors? Well , it turns out that some of the ICU doctors were concerned about my tolerance for opiates. The fact that I was requesting Fentanyl and Dilaudid to ease my breathlessness was apparently a red-flag to them. Despite the fact that my personal pulmonlogist’s condone the use of opiates to treat severe breathlessness, it’s still not a widely accepted practice in the ICU. For many critical care doctors and respiratory therapists, if you’re taking opiates, you either have an addiction to them, or you have psychosomatic illness. In either case, you are definitely treated differently. You’re basically treated like a psych patient instead of a medical patient. In my case , neither of their assumptions were true. The fact is, I only take opiates ( or request them) when the work of breathing becomes overwhelming to me. The breathlessness that I experience is caused by my narrowing airways during an attack. It’s this breathlessness that causes my anxiety, not the other other way around. And that’s the part that people have a hard time accepting.

I am not an anxious person, unless I’m suffocating to death. I can see now though, that my requests for painkillers to make my breathing easier, would probably account for why some of the doctors were acting weird around me. On more than one occasion, I has some of the doctors trying to convince me that I should try some long acting anti depressants and/or anti -anxiety meds, instead of opiates to manage my dyspnea. They also gave me a list of referral to various specialists who supposedly deal with dyspnea management ( all of whom, Id seen in the past without success). I reminded her, that I was taking opiates on the recommendation of one of UCSFs own highly acclaimed palliative care doctors.
In the end, I basically told her that we had been down this road many times before, and I that I refuse to discuss the matter any further. It’s my life, and if I choose to take opiates during bouts of severe breathlessness, that’s my choice, and it should in no way, change how I am treated during an active severe asthma exacerbation. Case closed!

Dont get me wrong, I’m grateful, and for the most part , satisfied with the medical care I received during this hospital stay. There were a lot of good things that happened as well. For example, for the first time ever, the doctors actually granted my request to not exceed 60 mg per day of Solumedrol or prednisone, which really helped. I’m am however, not too happy with the way I was spoken to by some of the other staff, especially the RTs . There seems to be this weird vibe I get from other Respiratory Therapists when they find out that I’m a Therapist myself. Either they like me right off the bat or they are intimidated by me… I’m not sure what’s up with that. I was also made to feel by some of the physicians, that I somehow brought this exacerbation on myself by over -reacting to my own dyspnea. That simply wasn’t the case. I’m pretty sure it was the flu that triggered this event, not anxiety. Besides, I think it would be pretty hard to go into full blown clinical respiratory failure, just from anxiety alone.

Bottom line…Much like credit report, incorrect statements or diagnosis that end up in your chart , can have a negative effect on the type of medical care you receive for years to come. I think this is especially true when it comes to medically complex patients (such as severe asthmatics.) A lot of this misinformation could be avoided if physicians were allowed to follow their patients in the hospital. Of course, that’s not going to happen. Evidence based medicine is here to stay.

On asthma severity scale of 1-10, this probably only ranks a 6 or 7, though having the flu at the same made it feel like a 10. Number 97 is behind me now, but I still have a long recovery ahead. It will take me weeks to regain the strength I lost in just one week of illness. As Ive said before, the aftermath of a severe asthma exacerbation is often more difficult to deal with than the actual attack itself.
It often takes several days after the hospitalization before you start feeling the trauma of what your body has been through. Being jabbed dozens of time with needles and catheters. Lack of sleep, sensory overload, having a hose shoved down your windpipe, being place on artificial life support. And then of course , there’s all those potent drugs. All these catch up with you. Yes, the recovery is often the worse than the treatment.

If there are any bright spots to this other wise crappy week, it would be the wonderful Nurses I encountered in both the ICU and Step down units who have taken care of me many times. They are angels.

And finally, a special thank you and hug for Kerri and Dr Wenzel who took the time to check up on me everyday while I was in the hospital via telephone. Dr Wenzel recommended that they do a PFT on me for discharging me,..and they actually did it! Now, that’s what I call clout!

PS…In all fairness, the RTs in question were new to me . I had never worked with them before. Maybe they weren’t aware of my little quirks, but it still doesn’t give them the right to treat me like a 2 year old. As far as some of the physicians concerns, I suppose they were justified, I just wish they would talk to me before rushing to conclusions.

As far as incarcerations go, this one went pretty smooth and was fairly minor in intensity without any major surprises. Because the ER staff at UCSF know me so well, I didn’t have to spend that much time in the ER and was admitted promptly to the ICU. And because I had the smarts to come in early on in the exacerbation, I managed to avoid intubation…. which also means I suffered less trauma to my body in general. They didn’t have to put any IVs in my feet this time, but they did have to put one in my thumb…ouch!

In total I spent just 2 days in the Intensive Care Unit and day and a half in the step down unit. I was released on good behavior ( and because I’m an RT) Friday afternoon. They know I can take care of myself pretty good at home, so they’re always willing to discharge me sooner than they would with other asthma patients. My PFs on discharge were still in my red zone, but trending upward.

About the only complication I had this time around, was some benign,but really annoying heart palpitations/ectopy ( PVCs) probably caused from all the albuterol. Over a 4 day period, I received a total of 270 mg of Albuterol . To give you an idea of how much Albuterol that is, a single neb treatment contains only 2.5 mg , which means I received the equivalent of about 108 individual neb treatments. I also received 2 grams of Magnesium over 30 minutes ( instead of 1 gram) ,which is something new they’re doing for patients at UCSF with status asthmaticus.

While I was in the ICU they also gave me the (regular) flu shot, which was pretty cool , because now I don’t have to make a separate trip back to the hospital just for that. Because of my hypoxemia,they also wanted to test me for HIV , which I agreed to, and which of course was negative. Also new this time, is that they had Propofol ( the Micheal Jackson drug) listed as one of my allergies on my allergy bracelet, because of the reaction I had to it the last time I was intubated. Unfortunately, most of the alternative sedative drugs don’t work as well as Propofol. Hopefully, I won’t have test that theory anytime soon.

The Nurses I encountered during this 96th hospitalization were incredibly kind and professional. The ICU and TCU nurses in particular were awesome. Thank you Jen RN, Linda RN, Kevin(ICU Nurse Practitioner) and Susan RN , for putting up with me. The RTs were awesome as well. Thanks Oscar and Carl and the others for all your help. It’s tough taking care of someone like me over and over again…I drive everyone crazy. Last , but not least , a special thanks to Norm, one of the hospitals spiritual counselors, for spending time with me and for arranging a laptop to be send to my bed in ICU.. Thanks Norm!

I’m still pretty sick and on a lot of medication, so it may be some time before I can resume my regular fitness and/or blogging activities. Thanks again everyone for your continued support . Also give a shout out to Tammy for taking 1st place in the racewalking division at last weekends Portland Marathon .

PS..As it turns out, no one was really pissed off that I did the Rock&Roll race on Sunday and that it may have contributed to this flare-up. In fact, most of the doctors thought it was pretty cool that I did the race, and if it made me sick?… so what.. was their attitude.

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.

On Monday morning I woke up lethargic and more breathless than the night before. My peak flows were now below 200 (my red-zone) and the neb treatments weren’t helping anymore. By early that afternoon I was starting to get really uncomfortable and fidgety ( this is usually a sure sign that my CO2 is rising), so I decided to call it day and headed to the hospital. At 2 pm my partner dropped me off in front of UCSF Emergency room . The next time I saw him, was 24 hours later after waking up on a ventilator.

We’ll start the gore fest with a little footage I took with my phone while I was in the ER. My Hannibal Lecter look (as Dave McGovern, my racewalking coach, so kindly puts it). It’s actually called Bipap, which is basically a machine that pushes air into your lungs and then holds that pressure in your airways through out the breathing cycle. The Bipap wasn’t cutting it though, and 8 hours later I ended up on a Ventilator.

Rewind to Monday afternoon: I high tail it to the UCSF Emergency (my home away from home) where they proceed to give me the usual continuous Albuterol nebs at 20 mg/hr along with Bipap set at 10/5. While there I received additional IV steroids, Mag Sulfate and a host of other asthma remedies. The first ABG results came back marginal , with subsequent gases getting gradually worse .My oxygen saturation was OK , but my CO2 was starting to climb. After a 6 hour stint in the ER, I was assessed by the ICU medical team and immediately transferred to the new 13th floor medical ICU , where they continued me on the Bipap, this time adding Heliox. They attempted multiple times to insert an arterial line in my wrists , but were unsuccessful. For the time being they would monitor my respiratory status using other means.

Over the next few hours, I was asked repeatedly by the doctors, if I thought I was tiring out ( something they always ask ), and each time I would respond to the negative, telling them, that at least for the time being, I felt like I was holding my own and did not want to be intubated. 6 hours later, despite being on continuous albuterol and bipap support, I was starting to poop out and finally caved in to their request. I was intubated at 2:30 am Tuesday morning.

The next thing I remember ( which turned out to be 14 hours later), was waking up with a tube shoved down my throat, gasping for air!
I have never experienced that degree of suffocation in my life. I was attached to the ventilator,yet..I couldn’t breath. Ive been intubated and ventilated many many times for severe asthma, but usually they keep me asleep for a couple days until the attack subsides. This was the first time Ive actually woken up on the ventilator during the peak of an attack. For the first time in a long time, I thought I was actually going to die. I remember hearing them saying ” you need to relax” ..and I can remember thinking..” you guys are going to kill me” … ” I can’t breath” . I thought something was wrong with the ventilator, but it turns out that it was my lungs that were all messed up.

My response to treatment, thus far, seemed to be making for a lot of the doctors nervous. There was pandemonium in the room. Doctors rushing in and out. Nurses trying frantically to calm me down so that I wouldn’t self extubate. They finally gave a me a pen and paper on a clipboard to communicate with. I kept writing..” I can’t breath” . On more than one occasion, the feeling of suffocation got so bad ,that I had to disconnect myself from the ventilator just to get a breath of fresh air. Of course, all the alarms went off and RT got really upset with me.

The secretions in my lungs weren’t making things any better. All the junk that had accumulated in my chest was making it even more difficult to breath. You could hear me gurgling every time I took a breath. Being an RT, I knew how to self suction. You should have seen the look on their faces when I started to suction myself.! I(and they) were suctioning gobs and gobs of the grossest phlegm you can imagine. Dark reddish brown color with the consistency of jello instant pudding. Anyway, this nightmare of falling asleep and then waking up in a sitting position to find myself drowning in secretions, seemed to go on forever. Every time I got to the brink of wanting to rip the tube out of my throat, they would sedate me with Verced , and the cycle would start all over again. I would be out for an hour, and then I would wake up suffocating again. It was like the worse nightmare you could imagine. It was like hurdling down a long dark tunnel, and then suddenly, I would burst into conscientiousness ,waking up with a huge GASP. I was so miserable, I just wanted to die.

While all this was going on, I also experienced an episode of temporary blindness. Every time I would open my eyes, all I could see was a bright blinding light. I could make out silhouettes , but I couldn’t see people faces. It was really weird. They got worried about this new development and immediately called in an eye doctor to check me out. He couldn’t find anything obvious on his exam. He said it might have had something to do with pressure on the optic nerve , but it went away.

So why on earth was I not sedated and kept asleep to begin with? Well, it turns out that I may have had a rare , but potentially serious reaction to the drug that they normally use to keep intubated patients asleep. The drug is called Propofol and it’s probably the #1 mostly used anesthetic in the world. It’s a wonderful drug, because you can basically turn on or off someone conscienceness like you’re turning on a light switch. It works super fast. It’s routinely used to keep intubated patients asleep, so that they don’t fight the ventilator like I was. When you want them to wake up, you simply stop the infusion. You wake up instantly. Works great when you want to wean someone off a ventilator. Though Ive been on this drug many times over the years, for some reason, my body wasn’t liking it this time and I began developing a lactic acidosis ( where your blood gets really acidic due to muscle breakdown.) My CKs and lactate levels were also getting really high. After ruling everything else out ( including too much albuterol , which can cause a similar problem), they concluded that it must had been the Propofol and immediately stopped the infusion. As an alternative ,they had to use a drug called Verced to sedate me. A nice drug for relaxing you , but not really designed to keep someone under for long periods.

Here are a few pics my partner took of me gorked out on the vent. There’s a good shot of the ventilator settings for you RTs out there. ( One of my ex co-worker/ RT friends, saw the pics on Facebook and noticed that the vent was in the weaning mode)

Finally after 2 days of pure hell, the decision was made that it was probably better to take me off the ventilator and let me breath on my own, rather than risk me blowing out a lung because of all the fighting I was doing on the ventilator. ( As an RT, I’m just guessing that’s what they were thinking..I don’t know for sure).

Day 4, I’m now off the ventilator breathing pretty well and my blood gases have returned to normal. As the day progresses I start to get this strong urge to use the bathroom. I already had a catheter in me to handle number 1, but now, I had to go number two! After not going for 4 days I guess it was no big surprise that I would eventually have to go, but I wasn’t prepared for for what was about to happen.
Unfortunately, UCSFs new 13th floor ICU doesn’t have toilets in the patient rooms, so for the first time in more than 20 years I had to use a bedpan! But, if that wasn’t bad enough, I had the worse case of diarrhea and cramps you can imagine. I don’t think it bothered the Nurses, but it sure bothered me. I was hating life! For the next 2 1/2 days, my lower gut was in knots and the nausea and cramps that followed were unrelenting. They eventually set me up with a bedside commode ( basically a toilet on wheels), but with all the wires and tubes that were attached to my body, it took at 2 nurses and a physical therapist to get me from the bed to the commode. And guess what? Someone has to empty the commode. How embarrassing. On that first day , I went 5 times, on the 2nd day , 4 times ! ( You have to remember, I hadn’t eaten anything in the previous 5 days, so where this was all coming from I don’t know). Apparently , on top of all the other drug reactions, I was now having a reaction to all the antibiotics and all the other drugs they were pumping into me. To be on the safe side, they decided to put me in isolation for C-diff precautions.

By Friday afternoon the stomach cramps were diminishing in intensity and my breathing was much better, so they transferred me out of the unit to a private room ( thanks to my isolation order) in the step-down unit ….with a private toilet…YEAHH . My C-Diff test eventually came back negative.

Things were looking up. The only problem I had to address before going home , were my swollen ankles and my oxygenation level. Because I had no IV access in my arms, earlier in my stay they had to place multiple IVs in my feet. Normally this wouldn’t have been a big deal, (Ive had IVs in my feet before) , but this time because of all the fluids I received, somehow the vein in my foot must have blown , so some of the fluids that were supposed to go in my veins actually ended up in the tissue surrounding my right ankle. As a result , this caused my foot to arch downward ( what they call foot drop).
When I was finally strong enough to get out of bed, just standing up was painful because it forced my feet to flex back to the normal position. For the next 2 days, I did multiple short walks , and when I was in bed, I propped my feet up with pillows and iced my ankles which really helped a lot.

The very last challenge I had to meet before being discharged home, was being able to walk without desaturating. On my first attempt at walking down the hallway, my sat went from 95 to 79% in 2 minutes. After doing several more walks I was only desating down to 85%, but this was not acceptable to them. After a lot of coaxing and a threat of not being discharged, I agreed to go home on Oxygen until I got better. On Sunday afternoon at 2pm, almost 7 days to the minute, my 94th sentence was commuted and I was released on good behavior.

This was a tough one, but I’m thankful I survived more or less in tack. I have a lot of hard times ahead of me,because the hardest part of this exacerbation actually begins now. For the next two weeks I’ll be fighting off the prednisone withdrawal symptoms and trying to regain some of my strength. Months of fitness conditioning and endurance building were wiped out in just a single week in the hospital. Then again…. all that conditioning is probably the reason I’m still around to blog about it.

I’d like to thank the following people for putting up with my shit (literally) and for treating me like a human being instead of a medical oddity.

Dr. Erika Moseson, Dr. Daniels, and all the other interns and residents who helped save my life…..again
Also to ICU nurse James, and TCU Nurse Jen O.

It was an absolutely gorgeous Saturday morning and a perfect day for walking in San Francisco, but once again, a couple hours after finishing the walk ( 13 miles this time), my lungs decided to protest by clamping down really tight and putting me through another evening of hell . Within just 2 hours of completing the 3.5 hour walk, my peaks flows dropped from 350 to 130. It took a full 24 hours of back to back neb treatments and an epi-pen shot just to get me back into my yellow zone. As I write this post my PF is back up to 290 ( which is still 80 below my baseline), and I’m still very SOB.

I hesitate in calling this event “exercise induced” , because generally , exercise induced asthma flare-ups occur during the exercise , not after it. I did feel a little tighter than usual at the beginning of the walk and probably used my inhalers more than the normal for me , but I didn’t feel so short of breath that I had to stop at any point. I was actually having more problems with the muscle pain in my shoulders and neck than with my breathing. In a way , I think Ive become so conditioned to being short of breath when I exert myself for long periods, that I don’t sense the decline in my lung function until it reaches a dangerous level.
This sensory disconnect, if you will, is starting to get really problematic for me. If only there was a way I could more accurately judge how tight I’m getting in advance, perhaps I could prevent some of these flare-ups from progressing . I’ve even considered taking a peak flow meter along on my walks, but I’m not sure how useful the results would be, since my breathing pattern would be affected by the exercise even if I was breathing OK .

It’s no secret to the people who read my blog that I have a tendency to “over do it” when it come walking, and that sometimes this over zealousness can lead to bouts of hyperinflation and air trapping after the event. But, these most recent post walk flare-ups seem to come out of the blue with symptoms that intensify very rapidly. First I’ll feel a little SOB, then I’ll start wheezing diffusely, and then my PFs will totally bottom out …all within a matter of minutes! Basically a full pledged , bronchospastic, classic text book asthma attack. I don’t like this one bit.

So I guess the big question is, am I gonna have go through this every time I do a long walk from now on ? or were these last two episodes just flukes?
So far, Ive been lucky and have turned around without having to hightail it to the ER , but next time who knows. And if I’m getting this sick after only 13 miles, whats gonna happen after 26 miles? It’s a kind of a scary thought when you consider that my next 26 miler is supposed to take place 6,000 miles from home.

My next scheduled walk is supposed to be 10 miler next weekend, followed a 15 miler the week after. Assuming I’m breathing well enough to walk by then, I think the 15 miler will be the deal breaker as to whether or not I will (or should) walk Rome this year.

Here’s some phone pics from the happier part of the day. (Hard to believe that there was an attack brewing).

Not always practicing what I preach.
As I’m sure Rick would agree, It’s a not always easy being a Respiratory Therapist/Asthmatic. Many times, what you’ve learned as a health professional is at odds with how you deal with your own disease. I cant tell you how many times Ive gone to the ER to instruct a patient on the “correct” way to use their inhaler and spacer, only to turn around a few minutes later and take a few puffs off my own inhaler with complete disregard for technique… or even a spacer for that matter!

RT/Patient
Imagine, you have a really bad asthma flare-up, you’re admitted to the hospital, and first words you hear out of peoples mouths is….” So I heard you’re an RT! ” or ” So , is this why you decided to become an RT?”
I don’t know why, but when I’m the patient, I prefer that the medical staff taking care of me not know that I’m an RT. It just seems to make things more awkward. I think mainly because you can sometimes sense that the people taking care of you, are a little uneasy or let’s say.. not too thrilled about the idea of taking care of an RT/patient.

On the plus side though, I’m sure it keeps the staff on their toes. You can pretty much bet that everything is going to be done by the book. For example: With every single breathing treatment, you’re also going to get; pre & post breath sounds (listening to your lungs with a stethoscope before and after breathing treatments) pre & post oximetry (checking you oxygen saturations) , pre & post PFs, (checking your PFs before and after your treatments)… etc etc. Many times Ill try to put the RT’s at ease by telling them… its OK ..You don’t have to hover over me..my breath sounds haven’t changed in the last hour. Just give me the neb. Go ahead and do another patient while I do my own neb ( a big no-no by the way).

But you know what the most awkward moment usually is? It’s when they need to do an ABG ( arterial blood gas) on you. Even if they don’t show it, you can tell they’re sweating bullets hoping like crazy to hit that artery on the first poke.Nothing more frustrating for an RT, than missing a bounding pulse ( been there–done that).
Come to think of it, the only time I’m treated like a “regular” patient is when I’m intubated (you can’t really talk back). They’re going to suction you no matter what. And when it’s time for you to breath on you’re own ( cpap trial or t-piece) ..they’re ruthless.
Of course when you’ve been admitted to the hospital as many times as I have, its almost impossible for people not to know……its all over my medical records.

MDI Protocol
The last time I was hospitalized, they put me on a continuous Albuterol neb at 20mg/hr. (In case you don’t know, that’s the equivalent of 8 Albuterol treatments PER HOUR! .) And to make the medication work even better, they nebulized it with Heliox . As is pretty typical, they kept me on the continuous neb for about 96 hours. That’s’ around 736 Albuterol treatments in just a 4 day period ! Though my potassium always drops big time, amazingly, my heart rate never gets that high, maybe to about 120-130…(but that’s another blog post).

The point is, when they finally transferred me out of ICU over to the step-down unit, the hospital’s respiratory care protocol kicked in and I was switched from a continuous neb ( which was now at 10mg/hr ), to an Albuterol inhaler of 2-4 puffs Q6 prn. That’s a pretty drastic cut. Needless to say, it didn’t work and a couple hours later I re-flared almost ended up back in the unit.
They ended up putting me back on nebulized treatments , this time Q2 ( every 2 hrs) as needed , which I remained on until discharge. Which brings me to another point. One of things RT’s hate the most (though they may not admit it), is having to give neb treatments to a patient every 2 hours…especially at night. Knowing this, I try to tough it out for as long as I could so dont have to bother them as often.

In the good old days, if they trusted you, and you were physically able, they would leave extra meds at your bedside and let you do your own neb treatments.

Ive been in my “green” breathing zone pretty much steadily now for the last 6-7 weeks and Ive been off the prednisone for almost 5 weeks! That’s a very good thing, because it means Ive been able to exercise more. And when I’m able to exercise more, everything in my life seems to go better.

On the not so good side of things, Ive been requiring more frequent nebulized Albuterol treatments. It used to be that on a good day, I could go 6 to 8 hours in between breathing treatments….now, it’s more like 3 or 4 hours! It used to also be, that when I’d wake up in the middle of the night short of breath, I could take a couple hits off the inhaler and get enough relief to fall back a sleep. Now when I wake up, I’m so SOB that the inhaler just doesn’t cut it . Instead, I have to get out of bed and take a neb treatment.

I don’t think this increased need for bronchodilators can be totally blamed on stopping the prednisone, as this was happening even when I was taking prednisone on a daily basis. More than likely, there are several factors including; a more acute perception of respiratory discomfort, a decline in overall lung function, and the erratic bronchospastic nature of my airways. Believe me, there’s nothing worse than waking up in the middle of the night, gasping for air because your air passages decide to clamp up! This happens to me almost every night.

I should also mention that I don’t buy the argument that Albuterol inhalers are just as effective in delivering medication to the lungs as nebulizers. Granted, many, if not most people out there, don’t use their inhalers properly. But no matter how good or bad your technique is with an MDI and spacer, you have to enough lung function to inhale the drug into your lungs. With mild shortness of breath it’s no big deal, but when you’re tight as a drum, that’s a different story. I guess the key is not letting yourself get that SOB in the first place ( but that’s another post).

What Ive tried to do recently when I feel the need for a treatment, is to limit myself to 10-12 breaths on the machine and then wait a few minutes and re-check my peak flows. If my PFs improve even minimally, I’ll discontinue the treatment and do some mental imagery until I “feel” better. When I take treatments in the middle of the night, I’ll take as few as 5 or 6 breaths, so that I don’t wake up completely. I don’t get total relief, but because I’m still half asleep, it’s enough where I’m able to stumble back to bed and hopefully doze back off.

For those of you who don’t know what I’m talking about; an asthma action plan is basically a set of instructions agreed upon by the patient (me) and the physician (my lung docs), on how to best manage one’s asthma on a daily basis. It includes such things as, how to interpret peak flow readings, when to increase or take certain medicines, what to do if your symptoms get worse, when to contact the your doctor…that sort of thing. The goal for most people of course, is to keep your asthma under control so that it will never escalate to the point where you have a crisis and need to seek emergency medical care.
Well, with very brittle asthmatics, things are a little trickier. The primary goal of the action plan often becomes not one of avoiding the ER, but rather, of going to the ER right away.

The way it worked before, was at the first sign of increased symptoms (ie. my yellow zone) , I would take a loading dose of prednisone (60-80mg) and then wait at least 24 hours for the steroids to take effect. If after that period I felt better…fine. If not , I would call my doctor for further instructions or go to the ER for treatment depending how I felt.

This new action plan eliminates that 24 hour waiting period altogether.
Now , they want me to go to the emergency room immediately after taking the first dose of prednisone and regardless of whether I think it’s necessary or how I feel.
In other words, no more waiting to see if things will get better.

The rationale for all this is ? In their words (not mine):
#1 ) I’m a poor judge when it comes to recognizing the severity of my own symptoms.
#2) Sometime I like to push the envelop.
# 3) It’s better and much safer for someone like me to spend maybe one day in the emergency room, than to spend a week in the intensive care unit….or worse.

Let’s hope I don’t have to put this new plan to the test for a long..long time.
I have a marathon to train for, and even a single day in the hospital is going to screw things up.

Today’s test walk was very disappointing. I was so short of breath, I couldn’t racewalk..at all! The best I could do was some regular walking with an occasional sprint thrown in so I that wouldn’t get bored.

My Peak flows are all over the place as well. Today before my walk they were 375, after my walk…240 (almost my red zone). Even when I’m not exerting myself, they’re dipping 100-200 points without rhyme or reason. In addition, my shortness of breath has been near constant, which makes me very irritable and quite bitchy. I havent been able to break through to my green zone in weeks now.

My lung doctors have been expressing their frustration as well. Not so much about the speed of my current recovery , but because I’ve ended up in the hospital 5 times this year and I seem to be getting critically ill now , at the drop of a hat.
They’re now classifying me as a type-1 brittle asthmatic (changed from a type-2) . We’re currently working on a new asthma action plan which includes close monitoring of even the most minor of flare-ups , so they don’t escalate into life- threatening ones. They also want me to stay on steroids ….permanently!
I’ve agreed to stay on a daily maintenance dose of 20mg, but anymore than that is totally out of the question. I might have agreed to more if I was 23 years old, but I’m not…. I’m 53 years old now. I’ve lived a long life with this disease and I’m just too tired to ride the steroid roller coaster anymore. Besides…. a higher maintenance dose would kill me way before the disease does. I ‘ll take my chances without them.

On occasion I receive emails from other asthmatics, commenting on how it is that I’m able maintain such a happy outlook on life with such severe disease. Some have even accused me of being in denial or hiding something. I hope this post dispels those notions. I have bad days just like everyone else, I just don’t let them get the best of me.

This week………

I’m gradually starting to feel somewhat normal again
( normal for me that is…) , but it’s still a one-day-at -a time kind of process.

As my docs always tell me…..”It’s pretty amazing how fast you seem to bounce back after a serious attack”. Well, I don’t know if it’s amazing, but I’m sure thankful for it. There have times where it’s taken me MONTHS to recuperate after one of these flare-ups.

Actually , this recovery hasn’t been as easy as it sounds…there’s been a lot of bumps along the way. Tapering off the steroids is always a tricky affair, and I have a long way to go before I wean down to my baseline dosage of 20mg.

Starting tomorrow I’m going to attempt to begin walking again on a regular schedule. It’ll take me several weeks , if not months, to regain what I’ve lost , but I don’t have any pending races, so I guess that’s cool.

These are some of the thoughts that were running through my head while I was suffocating in the hospital last week:

A severe asthma attack is like the “ultimate” ultra endurance event, only this race starts in the Emergency room, you cant quit or stop to rest during the race, and you never know at what point the finish line will come. Could be 20 miles… could be 200. Once you start, you’re in it till it’s over….If you just can’t go anymore, they knock you out and put you on auto-pilot with the help of a ventilator. Regardless, you never cross the finish line until after your lungs finally open up. Sometimes this race can last for several days. Oh..and you’re not allowed to walk this event..You have to run as fast as you can or you’re disqualified…. …PERMANENTLY !

Assuming you finish the race, as most people do, you get a beautiful medal , but it ends up costing you tens of thousands of dollars.

Then there’s the excruciatingly slow recovery period… Speaking of which….

I’ve been out of prison now for 5 days, and I’ve been able to taper down to 40 mg ( prednisone). I also took my first post-prison walk today ( a little over 3 miles) , but boy ….it was difficult! My legs are mush , and my endurance is not existent.
I can see now, that this is going to be one of those long slow recovery’s .

In an attempt to keep better tabs on my constantly fluctuating peak flows , and to identify what the critical values are for me, the clinical airway research folks at UCSF gave me this electronic peak flow meter . I’m supposed to blow into it 4 times a day on a set schedule ; morning, afternoon ,evening and night. In addition , I’m to use it before and after exercise or whenever I start to feel more short of breath than usual.
The device displays and records my peak flows and other pulmonary function data, then stores it for analysis at a later time back at the clinic.

The hope is that by keeping a constant and close tab on my pulmonary functions numbers throughout the day, that I’ll be more likely to recognize the warning signs and symptoms of an impending severe attack, much earlier on. Even a few hours advanced notice could buy me enough time to allow the steroids to do their job, and hopefully reverse the attack before it gets out of hand
Just another tool in my anti-asthma arsenal.

Here’s more of my arsenal. These are just a few of the asthma drugs I take everyday in order to walk:

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]]> http://breathinstephen.com/new-asthma-toy/feed/ 1 http://breathinstephen.com/im-a-drug-addict/ http://breathinstephen.com/im-a-drug-addict/#comments Wed, 14 Mar 2007 22:59:00 +0000 Stephen http://breathinstephen.com/?p=367 These are just some of my daily asthma medications and the gadgets I use to get them into my body. One of these drugs ( Xolair), costs $1,000.00 per injection.

All this keeps me walking……

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]]> http://breathinstephen.com/im-a-drug-addict/feed/ 0 http://breathinstephen.com/cool-new-neb/ http://breathinstephen.com/cool-new-neb/#comments Tue, 23 May 2006 22:21:00 +0000 Stephen http://breathinstephen.com/?p=238
I was turned on to this cool new nebulizer while I was a patient in the hospital last week. I have to say, as a Respiratory Therapist and patient, I really like this thing!

Its called the “AeroEclipse” ( from the same company that manufactures the “Aerochamber”) and its a breath actuated nebulizer. It uses a demand valve so that the medication is only nebulized during inspiration. (You can also set it to nebulize continuously) . I’ve noticed that this thing nebulizes much faster than a conventional neb.

These nebs are probably a little more pricey than the standard cheap o- disposable nebs, but I think they’re worth every penny. I highly recommend this one.

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]]> http://breathinstephen.com/cool-new-neb/feed/ 1