Hey Stephen,

Read your website have to say it was quite intriguing! Just want to say you are a hero and a role model for me. Quite amazing what you’ve been through and I take my hat off to you dude! I am a 16 year old guy from Victoria BC Canada writing to you from my hospital bed on the pediatric 4d north tower. I also have neutrophillic predominant asthma I used to have eosinophillic asthma as my IGE level was 16,000 ug. Since then it has changed into neutrohilic and harder to take control of – I feel like you. Sorry if that offends you because I know it offends me when people ask me in the hospital what are you here for? and i say asthma they reply with oh yeah my son has asthma blah blah blah when they really have no idea…when I read your website I saw life through my moms eyes Pretty scary since im used to it. But I was wondering did you ever have high IGE at one point and then your lungs like changed into neutrophillic predominant? and like when you walk don’t you get out of breath at all? it was quite amazing how you walked al those miles. And have you ever used oxygen at home? And whats you’re criteria before you get to go home? for me its Q4 Nebs and 50% FEV1 which takes about 2 weeks every admission! WTF such a flipping frustration I’ve never met anyone like me before and I seem to see it in you. I’ve also been to national jewish hospital in america for further evaluation from ” the big shots” . My FEV1 varys from 45- 50% and FVC of 65%.

Drugs – Spiriva ( for copd) have you ever been on it?
Oxygen 1-2L nasal prongs when in hosp
Formorteral (oxeeze) 12mcg
flovent
azithromycin antibiotic apparently it helps with inflammation in the airways – that’s what they said in Denver at National Jewish hospital – Have you been there?
Ventolin Nebs Q4
Q30 mins when in hospital.
Prednisone 10mg one day 5mg the next alternating when in hops 60mg for 3 days since i had a steroid myopathy I cant get steroids for a long time because there worried abut that happening again ( Diaphragm paralysis) my diaphragm stopped working which made it hard for me to breath was on Bi pap for 6 months
I HATE PRED!
flutter – Chest physio
IVIG every 3 weeks
I am also getting a bronchoscopy which should tell them more about whats going on, as requested from Denver National jewish.

I’m sorry if im bugging you – just thought your page was really inspiring and something to look up to. Thanks for your time Stephen

Darcy Ablak

No Darcy, thank YOU for YOUR time.  It’s people like you who inspire ME !  Your letter made my day.

If (or when) I get sick and have to go to the hospital, all I have to do is grab the bag and GO!

When you spend as much time in the slammer as I do, there are certain essentials you’re going to need to make your stay a little more bearable.

So what do I have in my HSK ?

*Introduction note: (See this earlier post for more details), but basically it’s a note from your personal physician summarizing your medical condition.

*List of medications: Since I’m probably not gonna be able to do a lot of talking to the triage nurse or the doctors, a pre-written list of all my medications comes in really handy.

*Extra clothing : Underwear, t-shirt , Socks etc.

*Toiletries: A few of the things that can make you feel like a human again, especially if you’ve been on the ventilator for a few days , are some clean underwear, a shave, a shampoo , some deodorant, and of course some good oral care help.

*Extra inhalers: As crazy as it sounds, an extra albuterol inhaler is an essential part of the HSK. Even though you’re in the hospital, it can sometimes take too long to get a PRN neb treatment. I can’t tell you how many times having my inhaler, saved me from crashing. ( If you carry one, my advise is not to tell them or they might confiscate it.)

*Phone and Charger: Hospitals can be very lonely places. Not to mention the hospital room phones can be pretty gross. My cell phone or computer is often my only connection to the outside world. Since I’m sometimes too short of breath to talk, texting is the way to go. And of course the camera is useful for blogging purposes ( as we all know).

* Pencil and paper: If you have a breathing problems, or wanna remember peoples name, or just wanna be able to fill out the food menu without tracking down a nurse, these simple items can be very useful. If you end up on bipap or a ventilator, they’re absolutely essential (unless you’re good with sign language.).

* Credit card and cash: Hospitals are more like prisons than you might think. It’s always good to have a credit card or a little cash on hand, in case you need to buy something.

So, what do y’all carry in YOUR Hospital Survival Kits?

But what a difference a few extra days can make. I think it was Thursday that I finally …”Turned the corner”. As happens so many times when I think I’ll never recover from a severe exacerbation, I just woke up one morning, and all of sudden… I was breathing better and feeling better! It’s as if whatever was causing my lungs to act up in the first place, just burned itself out and left my body.

It’s astonishing how fast the transformation can happen too… One minute you’re feeling crappy, the next you’re feeling fine. This probably sounds strange, but for a while there it actually felt kinda weird to be breathing easy. All day yesterday I caught myself conscientiously trying to analyze my own breathing to see if indeed I was breathing normal…or I was imagining it. No wheeze, no difficulty exhaling, no discomfort…just normal breathing! So weird, but so appreciated. Id give anything to be able to breath like this all the time. Healthy people take their breathing for granted.

So with this most recent revelation, and after having survived literally dozens of these types of exacerbations, I put all my observations together and made a list. Ive been able to identify 6 distinct phases that I go through during the recovery phase of a severe asthma exacerbation that required a hospital admission.

Just for fun I call it ” The Recuperative phases of a severe asthma exacerbation” . The word hospitalization is important here, because the recovery phase from a severe exacerbation that did not require hospitalization, doesn’t seem to follow the same pattern.

Here’s the list in the order of occurrence. Can anyone else relate or add to this?

So that’s my asthma recovery check list. I think every physician and RT who takes care of asthmatics should familiarize themselves with this list to get a better insight as to what we go through AFTER we get out of the hospital.

(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

Thanks for the cards,calls and wishes.

For fun, I threw in one of the 12 pages of itemized charges to give you an idea how much individual things cost. Like for example, the Ventilator charge per day. Or how much the continuous nebulizer costs for the first hour, and then how much it costs for each additional HOUR. (Remember, I was on a continuous neb for 48+ hours!)

The cost of inpatient hospital care is just mind boggling.

Yes, I have medical insurance ( at least for now)

I’m not totally out of the woods yet and I don’t want to jinx myself, but for the first time in 2 weeks, I actually feel like a human being again. I can breath!
To celebrate, I went ahead and got the first of those 3 goodies that I promised myself…..namely, a haircut! (Yikes…I look a little too str8 now). The new shoes and the Manilow Paris Las Vegas show tickets are in the mail.

You know with all the suffering that’s been going on in the world lately, I feel extremely fortunate in so many ways. I may have really bad asthma, but I also have access to some of the best medical care on the planet. I’m surrounded by caring people, and blessed with the support of others who know what’s it like to live with a chronic disease. I would say I’m pretty lucky and have very little to complain about.

And in case you haven’t heard, SARP is now on Facebook. And thanks to Kerri’s efforts, there’s also a Fan page.

Dyspnea : As with most of my post hospital recovery periods, days 5 and 6 have been the hardest to deal with in terms of being short of breath. I was breathing well for the first couple days after being discharged from the hospital, but then my dyspnea levels gradually crept back up again. Yesterday it was unbearable. A mixture of bronchospasm ,air-trapping, stomach bloating and humid weather, I felt like I was suffocating . I’m not sure what today will bring, but I hope things turn around soon as I’m starting to get to really tired of this.

Steroid Withdrawals : This time around they’ve been fairly mild. No major psychosis, just some mild muscle cramps, acne and mood swings. The main reason Ive been spared this time, is because my maximum dose in the hospital was only 60 mg per day. In previous hospitalizations, Ive been on as high as 300-500 mg per day, which can lead to weeks of intense withdrawals and even the potential to re-exacerbate. I have to thank Dr Wenzel for this one. She’s been pretty much able to prove, that high doses of steroids don’t do much for someone with my type of asthma. Currently on my taper, I’m down to 30mg.

Opiate Withdrawals: Next to the bouts of severe breathlessness, the worst problem Ive had to deal with this time, are opiate withdrawal symptoms. While I was in the hospital, I received a lot of IV narcotics for my dyspnea. And because I was on a ventilator this time, I received even more than I normally do. I was getting them almost every hour for the first 4 days and then about every 2-3 hours for the last 3 days. That figures out to more than 100 doses of intravenous Dilaudid and/or Fentanyl. That’s a lot of opiates to put in your body in just a 7 day period. And since I don’t take any of these more potent morphine-like drugs outside of the hospital, stopping them abruptly ( ie cold turkey), always causes me some pretty nasty withdrawal symptoms. Insomnia, nonstop chills/rigors, restless leg syndrome and muscle cramps, just to name a few. The symptoms gradually fade, but the first week can really be a bear.

Body Trauma and weakness: Laying in a hospital bed for a week, working really hard to get a breath, getting jabbed with needles and pumped with drugs and having a tube shoved in my wind pipe (and one in another place), has been pretty traumatic to this old body. I’m starting to feel all the aches from all the IV bruises and Im still weak as hell. You should see the welts left on my belly left from the Lovenox injections.

Looking forward to better days: No matter how bleak the situation seems during the first week of a rough recovery, I always try to focus on better days ahead. Consider this if you will; Yesterday, I could barely walk from my bedroom to the living room without getting totally winded, a distance of less than 10 meters. In just 13 weeks from now, I will attempt to walk 42 THOUSAND meters, at the Boston marathon. That means that between now and April, my endurance will have to increase 4000 fold! The way I feel right now, it seems an impossibility. Give me another week, and my outlook will probably be totally different.

Doing something special for myself: Finally, and maybe this is the selfish part of me, but if survive this exacerbation ,I plan to treat myself to a few goodies. This time, a haircut, a new pair of racing comps (shoes), and a ticket to Barry’s new show over at the Paris Las Vegas. Ok, so I’m a little spoiled.

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.

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

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

Newly discovered Horror pictures

Next Friday, Saturday and Sunday will hopefully, be a little more exciting and a little more normal for me. I’m supposed be going down to Solana beach ( near San Diego) for Dave’s advanced racewalking clinic. Ive been really run down lately from the steroid taper and its an awful long drive (450 mile each way), but I’m hoping that I’ll feel well enough by then to go.

If I do go, it will be mainly to hang out with other racewalkers and to meet some of the super stars of the sport. Three time Olympian, Philip Dun and two time Olympian Tim Seaman just to name a few, will be there coaching. Of course Dave Mc Govern , who’s a legend himself, will be running the whole show. My lungs are way too messed up to participate in much of the actual training, but sometimes just watching the elite walkers walk, and/or having my own racewalking form critiqued by them, provides me an adequate level of learning. Most of all though, I go to these weekend clinics because I have a passion for the sport and for the crazy people who engage in it.

In the coming weeks I have a ton of the usual medical appointments, but also a referral to a brand new service called “Symptom Management”. This new clinic is an off-chute of the Palliative care program over at UCSF. I’m going primarily, to see if there are any new therapies or strategies out there that can help me with my worsening dyspnea. To my knowledge, I’ll be the first asthmatic to receive treatment at this new clinic. I’ll be blogging more about the topic of palliative care in a future post.

Sunday was the Nike Womens Marathon. The last few miles of the marathon course passes by my old neighborhood at Ocean Beach in the outer Sunset. I know several people who are doing this years race. I hope they all had a great time!

When you suffer an asthma attack that is severe enough to warrant hospitalization, once that critical acute phase is over , there’s also a recovery phase that you have to deal with. Though not as dramatic, can nevertheless make you feel just as miserable as the initial attack and can last twice as long!
You just don’t walk out of the hospital after a bad exacerbation and go about your business as if nothing ever happening. A severe asthma exacerbation and all the medications and interventions used to treat it, can reek all kinds of other havoc on your body, leaving you weak and breathless for days and weeks after the initial assault.There’s also an accumulative effect, whereby each subsequent exacerbation takes that much longer to recover from.

The length and severity of this recovery phase varies for everybody. For me, it’s usually determined by how severe the initial attack was, how many days I spent in the hospital,and how many steroids they had me on at the time of discharge. Generally, the longer the hospitalization and the higher the steroid dose, the longer it will take me to fully recover. Age and overall health play a role as well I’m sure.

Of course I’m grateful for the medical care I receive in that big building on the hill, but if you think about it, all they really do for you in the hospital, is stabilize you enough so that hopefully you won’t die. There’s no actual concern about “how you’re feeling” as long as your numbers are survivable. Once you’re over the hump clinically, you’re booted out and basically left to fend for yourself. There are no Nurses, Doctors or Respiratory Therapists to hold your hands or monitor your progress after you leave the hospital (unless of course, you live with one). At best, you might have a follow-up a appointment with your doctor a couple weeks down the road , but by then you’ll probably be back to normal ,which kind of negates the whole purpose of such an appointment.

Still, after going through this a million times, I consider myself lucky. There are some poor souls out there who’s asthma is so severe, that they never fully recover from their exacerbations. They are in a state of perpetual exacerbation and recovery. They are never symptom free. These are the people I feel for the most.

Maybe I’m asking too much, but I really think its important to have some kind of ” immediate” post hospital follow-up care for severe asthmatics. Even a phone call to see how you’re doing would help. Some of the Kaiser hospitals, to their credit, already do this.

Addendum : 4 hours after publishing this post, I actually received a phone call to see how I was doing. Not by the hospital personnel as you would expect, but from an understanding case worker from the insurance company . Needless to say, I was pleasantly surprised. The folks at Brown and Toland have their act together.

I’m not slamming any particular health organization or hospital for the lack of follow up care options for severe asthmatics, I’m just trying to bring attention to the fact, that there is often a prolonged and difficult recovery phase following an asthma hospitalization.
I have a pretty strong support network ( ie..this blog) , but many severe asthmatics don’t.

If this topic interests you, here are a few other posts Ive written in the past.

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.

A few days ago I chatting with friend and famous asthma researcher , Dr. Sally Wenzel , and I had mentioned to her how I wasn’t feeling that great , and how I had just upped my pred to 50mg in an attempt to stave off a prison stay. I told her I feared that if the pred didn’t do the trick that Id probably end up in the slammer, but that I would try to hold off from going in as long as possible.

This was her response :

” Grrr. Sorry you are on the high dose pred at the moment! We need to TRY the Qvar in you, for sure. MIGHT limit the bumps (might not, but won’t know until we try). Funny, your words on prison, slammer, not going until you really need to, etc, are SOOOO typical!!!! Sometimes I think you guys must all get together and come up with the lingo. There really is a “severe asthma personality” I think!”

Well fellow asthmatics……. I think the jinx is up ! She’s wise to us …..

Actually…….She’s an awesome Asthma-tologist ! ……. (I just made that one up right now)

Btw…The the evil candy did it’s job and I was able to avoid that incarceration. The trick now, is to wean off that poison without backsliding.

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.

I don’t think healthy people realize just how much of an impact a single severe asthma exacerbation can have on the rest the body…It takes a lot out of you and sometimes the treatment is as bad as the disease. All the IVs and tubes they insert in you, and all the drugs they pump through them , effect not only your lungs, but the all the other body systems as well. I always come out of the hospital majorly bruised and beat up. This time in particular, it did a number on my arm and leg muscles. In just 10 days I went from having moderate upper body strength, to having absolutely none at all. Just 3 days prior to this last hospitalization, I was lifting weights in the 80-120 lb range on the weight training machines at the gym. Today, I can barely lift my arms over my head with NO weight.

The one thing I’m really good at, has been effected as well. Before I was incarcerated , I could easily walk 10 miles without batting an eye. Today , it took all the lung power I could muster just to limp my way through 3.5 miles. I’m having serious doubts now, as to whether I’ll still be able to do the SF half marathon next month. I may have to forgo that one, and set my sights on the ET marathon as my next race.

I’m very strong willed and I always seem to recover quickly after a bad one…but never fully. Each severe flare-up that I survive, takes just a little bit more out of me that I can never replace. It’s a constant uphill battle in just maintaining what little I have. It’s been a full week now since I came off the ventilator, but my throat is still sore from the tube and my dyspnea level has been at times, off the charts.

OK, enough of the whining and self pity routine. I’m going to put this latest chapter behind me , so I can start focusing on the things I really love doing …. namely racewalking, concert going, and avoiding hospitals.

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.