If there’s any good news in all this, it’s that there’s a new drug in the pipeline that could possibly help people like me who have this cellular abnormality.

Dr Wenzel to me;

( 2-24-2010)

Steve, At long last, some MICROSCOPIC pictures of your airway! These are “orange colored STAIN” to identify cells called mast cells. The first AE2typrt identifies mast cells which make tryptase (an enzyme…. we don’t really know what it does, but it identifies this type of mast cell) the 2nd AE2chym is a different enzyme (chymase) also made by mast cells, but a different “type” of mast cells. As you can VISUALLY tell from the 1st slide, you have “orange” everywhere. LOTS and LOTS of mast cells (even though almost all of the OTHER cells we associate with asthma (eosinophils, lymphocytes) are gone) And, interestingly, about 50% or more of these mast cells make the 2nd enzyme chymase, (2nd slide) which we ONLY see in severe asthma. WE think understanding what causes this increase in these cells is REALLY critical to understanding severe asthma. We are WORKING On that… but you clearly fit the picture that we have seen in other severe asthmatics, maybe even to a greater degree than many.

Finally, you ALSO have an epithelial layer (the top of the slide with the oval-like holes in it) and some cilia on top) which is MOSTLY mucus producing cells. LOTS AND LOTS of them too. We think the mast cells and the mucus cells are somehow related and we are working on that. And, there MAY be some drugs that block PGD2 (a prostaglandin molecule also made by mast cells) which MIGHT help your asthma… but probably wont be able to try those for another year or 2 as part of a study, and if they work, 5+ years as a marketed drug. But, there MIGHT be hope!

Slide#1


Slide#2

(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.

(I just noticed what it says on the pillow)

First , the good news…..

I finally got to meet Dr. Sally Wenzel (up close and personal you might say, considering she analyzed my DNA and probed around inside my lungs). It’s difficult for me to find just the right adjectives to describe how I feel about her, so I’ll just say … I love this women! She’s like my pulmonary physician soul mate. I admire her, not only because she’s an awesome Pulmonologist and research scientist, but mainly because of her fiery personality and the passion she has in trying to understand asthmatics and what makes us tick. And get this….she’s a good listener too! She actually cares enough about what you have to say, that she takes the time to listen. Imagine that.

I think Sally (Dr Wenzel) probably knows more about asthma pathology and the personalities of asthmatics in general, than any non-asthmatic person Ive ever met. It’s absolutely uncanny the things she knows about our disease and how we behave and live. She understands things about asthmatics that they don’t teach you in medical school. Things that you would only know by interviewing thousands of us and immersing yourself in the severe asthma culture. I could spend literally days just talking with her about this subject. We seem to teach each other. I am so lucky that I was given the opportunity to hook up with her. I think we will be friends for a long time.

The accolades don’t stop with Dr Wenzel, there were dozens of other wonderful people involved in this study as well. Here are just a few that Id like to mention by name and position.

Erin———–SARP research coordinator extraordinaire.
Cathrine RN—-Dr Wenzel’s assistant and other right hand
Mat tech——Very cool PFT tech.
Celo tech—–Just one of many super cool people on the bronch team
Trish RN——-A special Nurse. She actually called in on her day off to see how I was doing.
Lindsey RN—–Probably the sweetest Nurse Ive had the pleasure of meeting
Chuck RN——They don’t get better than this “young man”.
Rose RN——-Kind, Kind, Kind!
Michelle RN—-A Super Nurse.

To the above people , Id just like to say Thank You!
In all the years that Ive been in and out of various hospitals and clinics, Ive never come a cross a better team of compassionate and caring medical professionals like those associated with the SARP study, especially the people who took care of me in the Translational Research Care Unit at UMPC after my bronchoscopy. Kudo’s to you guys!

As for the SARP study itself, well, it’s probably the best coordinated and well thought out research experience Ive ever been a part of. With so many ancillary departments involved, like Nuclear Medicine, Pulmonary Functions and Diagnostics , it’s amazing how smooth the whole system runs. Everything is coordinated and timed down to the minute. In the bronchoscopy room, they actually had a group of lab personnel standing by in their running shoes, so that they could literally run the tissue samples over to the lab the moment they they were removed from my body. This method ensures that the samples will be ultra fresh. (I think).

Btw, if you’re not familiar with this part of the Country, the University of Pittsburgh and it’s affiliated medical schools ,hospitals and clinics, is massive in size. More like a small city, I counted at least 4 city blocks of medical buildings 2 and 3 deep. Some the size of mini skyscrapers, all connected through a series of enclosed pedestrian bridges. Pretty neat since it snows here in the winter.

Here’s an abbreviated version of my actual testing itinerary:

Wednesday Afternoon: Completed a ton of questionnaires,did a verbal interview, and did pre&post bronchodilator spirometry, sputum induction attempt.
Thursday: Allergy skin testing (scratch test, not sub q), Full PFT ( lung volumes) pre&post bronchodilator.
Friday: Bronchoscopy prep, ( ie pre-medications and neb treatments), then nasal brushing, then the actual bronchoscopy with brushings and biopsy, but no lavage because of the potential side effects, more pfts
Friday Evening-Saturday,:Monitored in the hospital overnight.

As with any long distance trip , I didn’t eat or sleep very well and I’m totally worn out, but the effort of getting here to Pittsburgh to do this study was totally worth it. Definitively a positive experience and I would gladly return again if asked.

(Matthew, myself and Erin in the PFT lab)

(Chuck and Trish, two of the best nurses in the world)

Look at all the blood they took from me

(And check out this reaction I had to Grass allergen compared to tree allergen,which is the little dot to the left.)

Now for the not so good news….

Because this was the first time Ive ever had a bronchoscopy, it’s really the first time anyone has ever gotten a close-up look at the inside of my lungs. And what Dr Wenzel saw down there, wasn’t good. What she saw was lung anatomy that had undergone extensive remodeling. My airways appeared very scarred, stiff and fibrotic in nature…. seems my disease is much more advanced than previously thought. She actually found it quite amazing that I was still able to function as well as I do, let alone still alive. What was baffling to me, is that she couldn’t find any physical evidence of air-trapping or any of the other tell tale signs of COPD or emphysema that I often thought I had. It will be a few more weeks before they’ll have a final report, as they sent bits and pieces of my lung tissue and blood samples to various university labs for analysis, but suffice it to say, my long term survival isn’t looking too rosy right now.

They recommended that I seriously consider lung transplant surgery somewhere down the road. We all agreed that I’m not even close to that point right now, but that when the time comes, I shouldn’t procrastinate, as the waiting time for new lungs can take up to 3 years (asthmatics are usually put at the bottom of the list.) My one saving grace so far, is that my blood oxygenation is still relatively good(probably from all the aerobic exercise I do), and I’m still able to exercise, though that probably won’t be the case for very much longer.

Who knows, maybe someday I’ll be able to RUN the Boston marathon … instead of walking it!

Update as of 12-15-2009: Results from the computerized quantitative lung scans, did indeed show significant air trapping.

The field of Asthma Research desperately needs human test subjects for a variety of invasive and non-invasive clinical studies. If you’re an asthmatic, or if asthma effects your life in someway, you should really consider getting involved. We need to put and end to the suffering that this disease causes.

So anyway, later today I’m off to Pittsburgh, Pennsylvania for the SARP study. While I’m there, I’ll finally get to meet the famous Dr. Sally Wenzel . She’s done so much to advance the knowledge of the severe forms of this disease. I admire her and feel like I already know her.

My plane leaves at 11 pm tonight, and with a connection in Chicago, doesn’t arrive in Pittsburgh until 9 am tomorrow morning. I hate overnight flights, but that’s cool this time, because it’s one less night I would have had to shell out for a hotel room. In that regard, I was able to find a hotel just 2 blocks from the University of Pittsburgh’s Asthma Institute, where they’re doing most of the research procedures.

I’m scheduled for 3 days of testing, beginning with spirometry , CT scans and sputum collection on Wednesday afternoon. Thursday will be a day of pulmonary function tests and blood work, and then on Friday morning, Dr Wenzel is going to take look inside my lungs (bronchoscopy) and take some lung tissue samples for analysis. As a precautionary measure, they want to monitor me overnight in the hospital following the bronchoscopy procedure. If there are no complications(knock on wood), I’ll complete the study late Saturday morning, just in time to catch my afternoon flight back to San Francisco.

Not sure if I’ll have much time in between appointments to check out the sights, but I’d definitely like to try some of the local food joints. Pittsburgh is supposed to be home to some of the worlds finest fast food eateries. Primanti Bros and Original Hot Dogs, just to name a few. I saw both of these places on the travel channel a few years ago. The food looks awesome. Not exactly healthy cuisine, but it sure looks really tasty.

Ive decided not to haul my computer along on this trip, so I unless I have access to one while Im there and feel like blogging, I probably won’t be updating again until sometime next week.

Behave yourselves and try not to miss me too much.

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.

Dr Sorkness does a great job of explaining the basics of asthma as well as the research the SARP is doing, in trying to find out what makes the severe form of the disease different from the milder forms. This is the same SARP study that I will be participating in later this year. Listen here

As I eluded to in my last post, Dr. Wenzel along with the folks at the University of Pittsburgh’s Asthma Institute, have taken an interest in my case and have invited me to participate as a research subject in the Severe Asthma Research Program. The SARP is one of the most comprehensive studies of severe asthmatics ever undertaken. My study is scheduled for the 3rd week in November.

The project I’ll be involved in is titled : Inflammation, Myofibroblasts and Loss of Elastic Recoil in Severe Asthma.The Severe Asthma Research Program ( SARP for short), is a collaborative research effort involving 4 different Universities, each adding their own research specialties to the mix. The basic goal of the SARP is to determine what make “severe” asthma different than the moderate of mild forms of the disease. The information they gain by studying people like me, is added to their already extensive asthma database, which is available to lung researchers worldwide.

It’s an exhaustive study, involving several days of testing which includes; full pulmonary function testing and spirometry, allergy testing, spiral CT imaging, blood, sputum and DNA analysis…etc etc. They’re also going to do a bronchoscopy on me to look around inside my lungs and take tissue samples. The only part of the study I’m not too crazy about, is having to spending a night in the hospital following the bronchoscopy. They do this of course, just to be safe and to make sure that my asthma doesn’t worsened after being bronched.

I’m paying for all of my own travel expenses to Pennsylvania, but in return, the research program will be spending 10′s of thousands of dollars in the name of science to see what makes me tick, which I think is pretty cool. And though I probably wont benefit directly from the research, it gives me great satisfaction knowing I can contribute in someway to developing a better understanding of this awful disease.

I think the study is through invitation only, but if anyone out there with severe asthma is interested in volunteering , and can travel to one of the test sites, I’m sure the researchers would appreciate it. Here’s a link to the consent form , which includes many more details of the study.

PS……Remember this one?

The first half of the discussion was introductions followed by the usual opener questions like..” How does asthma impact your life? How does it impact your family? How does it make you feel as a person ?”, ” Do feel that current the currently available therapies are adequate?”..”How do you feel about all the medication you have to take and their side effects?”

Though the views expressed by the participants were supposedly unbiased , the outcome of the conference was pretty predictable. You could tell that the moderator was gradually guiding the discussion in the direction of the newly touted breakthrough treatment , called “Bronchial Thermoplasty”.

Three of the group’s participants had actually undergone the Thermoplasty procedure during the phase II and phase III clinical trials. During the last 15 minutes of the conference they were allowed to speak. As predicted, they had nothing but good things to say about the treatment.
Comments like… ” It changed my life”….. “It’s a miracle”…. “The best thing that ever happened to me”… “I can play sports again”……that sort of thing. I must say, that after hearing those 1st hand accounts of how this new procedure changed their lives, I was really jazzed up. It made me feel like maybe there was hope for people like me. It was also great to hear that the anticipated FDA target date for approval is for December of this year.

Now back to clearer thinking. If I remember correctly, none of the people in this focus group who had undergone the treatment, had what I would consider, severe asthma. Prior to their Thermoplasty treatments, they were describing mild to moderate symptoms at best. The other thing that kind of puzzled me, is that the clinical trials were blind studies. The research participants were not suppose to know if they received the real thing or placebo,so I’m assuming that they were told of the results once the research was complete.
It would have been nice to hear from other people who had less than miraculous results from the procedure. However, it was good to hear that the side effects of the procedure itself ( which is done via bronchoscopy), were relatively minor for most of the participants.
My general sense is that the purpose for this focus group, was to develop a marketing plan for the device and at the same time, obtain the AAFAs stamp of approval for it.

So while I’m still very excited about this new procedure and how it will help thousands of asthma sufferers, I’m not convinced that it will produce the same miraculous effects for someone like me . In fact, I’m not even sure I will be a candidate for the procedure. If you remember , I was turned down for the clinical trials for this procedure because my asthma was considered too severe. Anyone with an FEV1 of less than 65% was excluded from participating . My FEV1 is only 36% now and it doesn’t reverse very much after bronchodialators. I have they call “fixed asthma”, which basically means that my airways have become stiff and permanently narrowed . It’s questionable whether Thermoplasty, which targets the bronchial smooth muscle responsible for bronchoconstriction, would be of much benefit.
Then there’s the issue of cost and whether or not the insurance companies will pay for it. I would say, probably not, at least for the first few years. Though if you look at how much the insurance companies currently fork out every time I’m hospitalized, even if this new procedure helped prevent just one hospital stay per year, it would surely be in their best interest to approve it.

If I thought there was even the slightest chance that Thermoplasty could help me breath easier, Id travel to the far reaches of the planet and pay any amount to have it done. I guess we’ll just have to see how it goes after this new treatment option gets into full swing next year.

So anyways, tonight they’re doing a sleep study on me to see if they can pin down a cause for this PND, then next week their gonna do an echocardiogram to see what my heart is doing. One of the thoughts, is that my oxygen saturation might be dropping and my CO2 rising when I sleep ( possibly a result of sleep apnea), causing me to wake up gasping for air. I’m not sure I buy the whole sleep apnea and CO2 theory, but it does make sense that since I normally use my accessory muscles to breath while I’m awake, that when I fall asleep and stop using those muscles,that I would start breathing more shallow ,which in turn could then cause my CO2 to rise starting a vicious cycle.
Next week they’re gonna do a Transthoracic Echocardiogram to check my heart valves and to see if my pulmonary hypertension is getting any worse(most COPDers have elevated PA pressures). Congestive heart failure could also be the culprit.

Ive been very resistant to having sleep studies done, because I know that if anything abnormal shows up, they’re gonna want me use CPAP or Bipap when I sleep. YEAH….like that’s ever going to happen! There’s no way I could sleep with that contraption strapped to my face. You’d have to knock me out with sedatives just for me to be able to tolerate it, which would kind of defeat the whole purpose. What’s more, if it turns out that I’m desaturating while I sleep, they’re mostly likely going to want me to sleep with oxygen as well.

Lets see, I already have Oxygen at home, an O2 sat monitor , a PFT machine, a nebulizer system, injectable drugs…and now a bipap machine?
All they need to do now, is give me a ventilator and an intubation tray with a little propofol, and I’ll be able to set up my own ICU right in my own home:-)

OH..one thing that I thought was kinda cool, is that UCSF does their inpatient sleep studies at a local Hotel. Yeah, they actually rent out the entire 5th floor of the Hotel Tomo located in Japan town, because the ward they used to have at the hospital was too noisy due to the garbage trucks coming twice a night. The patients couldn’t get any sleep there. So if you’re so inclined, you could actually spend the day sightseeing SF and then take care of your sleep study business that night:-)

I opted for the home study because I have a really difficult time sleeping in hospitals OR hotels!

I’m also requesting a referral to be seen at the University of Pittsburgh Asthma Institute in Pittsburgh Pennsylvania . World renowned Pulmonologist and severe asthma researcher, Sally Wenzel who’s part of the SARP team, has agreed to take me on as a patient. Dr Wenzel takes care of some of the most severe asthmatics on the planet and has done some fascinating research in the field. While she may not have much new to offer to my current care plan, there’s a lot that she and her team might be able to learn from me as a research subject, which might then get me in the door for future experimental therapies.

Don’t get me wrong, I have some of the best Pulmonologists in the world taking care of me right here, right now, in San Francisco, but UCSF doesn’t really specialize in the treatment and/or research of the more severe forms of this disease. If you have severe asthma that doesn’t respond to conventional therapies, I think it’s crucial that you seek out alternative treatment options, even if they’re considered risky. Never settle for the status quo. If it turns out that nothing more can be done for me, that’s fine , but at least I’ll know I gave it my best shot…..right?

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.

The plan for now , is to treat it conservatively with Physical Therapy . They want me to go to PT twice a week for 6 weeks , then they’ll re-evaluate. If it doesn’t get better, there are other options, including surgery to cut away some of the muscle( yea..right )
Hopefully the Physical therapy will help and I’ll be able to resume some upper body strengthening in the future,  but for now it looks like the only exercising I’ll be doing is walking and stretching…..It’s always something huh.

The thing that seems to perplex everyone the most , is why the delay in onset of symptoms? Why are these exacerbations occurring several hours AFTER the exercise event. These types of flare-ups seem to be more characteristic of an allergic response than exercise induced asthma. Made even more baffling when you consider the reason I walk along the waterfront in the first place, is to avoid the inland landscape that I’m definitely allergic to.

One of the theories being floated, is that I’m not getting the appropriate anticholinergic response or coverage I should be getting from all the Atrovent I take ( Atrovent works differently then Albuterol). They think it’s possible that I’m either immune to, or that the effect of the drug is wearing off long before I finish these longer walks. A possible explanation as to why my asthma symptoms don’t surface during the walk itself , is because vigorous exercise triggers what is known as a “sympathetic response” …..the release of bronchodialator type chemicals into the blood stream that actually helps dilate the airways in asthmatics. When the exercise seizes, so does this bronchodialating effect, and all of a sudden…I have a problem breathing. (You’d think it would be the other way around.)

To test some of these theories, they’re actually going to devise a special exercise stress test to see whats going on with my lungs in real time AFTER I finish a long walk . I’ve done several exercise tests in the past , on a bike in the lab, but because I can walk such far distances without a problem, they have never been able to induce an asthmatic response in the time allowed . For this new experiment, I’m actually going walk 15 miles along my normal route on the San Francisco waterfront ( including crossing the Golden Gate bridge) and will end the walk at the doors of the UCSF airway research clinic.
As soon as I walk through those doors, their going to do a series of pulmonary function tests spaced over several hours, in hopes that they can catch any delayed symptoms or exacerbation that might occur and If my peak flows bottom out, at least I’ll be in the right place.

They haven’t told me yet, what they hope to achieve with the data they collect , other than possibly increasing my daily doses of Atrovent, but I think this will be a worth while experiment and I appreciate all the effort that my doctors and the researchers at UCSF are putting forth in trying to solve this problem.

You know , despite all the incredible things Ive accomplished through fitness and exercise, no one has ever never been able to solve the mystery as to why I sometimes get critically ill after walking. What causes it , what are the triggers, why does it happen?
Five years ago , the answer to that question would have been ” You’re crazy for doing what you’re doing…or…You’re disease is too advance… or… You’re over doing it! ” and the recommendation would have been…” Stop training for marathons” .
Well, times have sure changed. I think through all my achievements and of proving people wrong time and time again, that Ive actually gained the respect of these scientists. Now instead of telling me to stop doing marathons, they’re actually encouraging me!

One of the biggest reasons people with severe asthma or chronic lung disease don’t exercise in the first place, is for fear that they will become even more short of breath. The truth is, if you don’t exercise regularly, you risk becoming so de-conditioned that it actually gets harder to breath. Hopefully, small experiments like this will shed some light on possible solutions.

Because I’m in the middle of training for the next marathon, we’re trying to work out the logistics and the best day in which to schedule the test. I’ll be sure to post more about this experiment in the coming weeks.

Here are just a few of the wonderful people who take care of me on a regular basis and who are involved in cutting edge asthma research:

Here’s a picture of some of the UCSF clinical airway researchers ( and muah) taken a couple of years ago in Golden Gate park for the ALA’s asthma annual walk.

Without getting too medical on you , an arterial blood gas sample (ABG), is simply a type of blood test that is done when it’s necessary to measure the amount of oxygen ( PO2) , carbon dioxide ( PCO2) and Ph ( the acidity ) and a few other things in the blood collected from an artery. During a severe asthma exacerbation , the actual struggle to breath ( what they call “work of breathing”), can cause the CO2 in the blood to increase to dangerous levels. If the attack becomes severe enough, the body( lungs) can’t eliminate the CO2 fast enough and the blood then becomes acidic ( low Ph) … not a good thing) The point where the body is no able longer compensate effectively, is called “Respiratory Failure”. Trust me..you don’t want to be in respiratory failure.

Of course that 118 number doesn’t represent the actual number of punctures into my radial artery. If that were the case , my wrist would have fallen off by now. Some of those samples actually came from arterial catheters that were placed in my artery during different hospitalizations. I estimate that about 50 of the 118 ABG samples sent to the lab, were taken from an art-line. That still leaves a whopping 68 individual punctures in my poor wrists!

Unlike regular blood draws from a vein, ABG blood samples are not only harder to get (you can’t really see an artery like you can a vein), but they can be quite painful as well. So, if the doctors think they’re gonna to need to get frequent and/or multiple arterial blood samples, they will usually place an arterial catheter directly into the artery and then draw the sample from that. They can also attach a transducer to that catheter which allows them to monitor your blood pressure directly from the source! Pretty cool actually ! In total, I think I’ve had about 10 arterial lines inserted in just the past 5 years. In any case…a 118 blood gas samples….is a lot of blood gas samples! It might even be a record for an asthmatic.

Oh..and at $250 a crack, that’s about 25 grand just for this single blood test. See……I told you I was expensive.

Anyways, this time is no exception. Two days out of prison and I feel like hell. On top of steroid withdrawals, I picked up an horrendous cold/and or allergies ( I’m not sure which) , my lungs are still tight , and all those needle pokes I received in the hospital are finally starting to ache. Believe it or not they put IVs in my knuckles ! I have no decent veins left, so they had to use the tiny ones in my thumb and first finger knuckles. Ouch! That bit about trying to convince some of the doctors that I wasn’t faking my asthma , was probably a result of mild hypoxia , mixed with a little hypercapnia, and some steroid induced psychosis sprinkled in. Geese, they must have thought I was a lunatic. Last time I was in the hospital , I felt the need to convince everyone , that I was indeed a 4 time marathon finisher (that probably got a lot of laughs too). It’s amazing how a combination of IV steroids and heart -pounding, sleep depriving drugs can change can make you paranoid.

Each severe flare-up and subsequent hospitalization, takes a little bit more of the fight out of me. And though I sometimes complain that I will never put myself through it again, the reality is , when you can’t breath , you’ll grasp at anything you think might help. It’s probably because of my high level of physical conditioning, that I’ve been able to endure so many of these severe exacerbations. Sometimes I wonder if everything I do to try to fight this disease is really worth the hassle. But I suppose as long as the good days out number the bad, it is.

OK time to put this episode to rest. All I wanna do now is get well, so I can plan my next adventure. I haven”t been outdoors in almost 2 weeks, and it’s driving me batty.

Here are a few grainy pictures I captured with my phone while in the ICU. I don’t think they’re worthy enough for a slot in my “Gross Hospital pictures ” album , but they capture the moment.

Me and my buddy, Frank ( lab director)

On Monday I did , what I hope was the last of the “poke and prod Steve” tests for the year. This particular study was designed to see how exercise effects my lung function, specifically my airway resistance ( in lay terms…does exercise cause my breathing passages to constrict? ). They decided to use the bike for this test because it gave them more precise data on the workload they were subjecting me to. They also allowed me to use my inhalers as much as I needed to during the testing, which is something new.

From start to finish, the test took about 2 hours. I was able to stay on the bike for just over 20 minutes and achieved a maximum work load of 110 watts. By comparison, last years test I only lasted 10 minutes on the bike, but was able to get to 120 watts. If you’ve never done a stress test on a bike, it’s kinda like riding up the side of a mountain in high gear. Anyways, at around the 20 minute mark, it was getting extremely hard to breath and pedal, and my blood pressure got so high that they decided stop the test. I was so nauseated, it was all I could do , not to puke.

So, what was the result? I wont know until they sift through all the data, but from what little I could gather, it’s not the duration of exercise that seems to set me off…it’s the intensity! I’ll post the final results when I get them.

1. Asthma Care Plan –We tweaked my current asthma action plan whereby I won’t come into the hospital for treatment unless my peak flows drops below 250 and remains there for more than 24hours. The way it was written before, it would have me coming into the hospital every other week. We also changed the Peak flow threshold for bumping up my steroids from 340 to 290.

2. Anti Leukotrienes– They added Zileuton ( Zyflo ER) to my drug regime . Zileuton is an anti leukotriene inhibitor used to treat asthma and severe allergies. I’m already taking Singulair which is also anti -leukotriene drug, but it uses a different pathway to block leukotrienes ( Btw…leukotrienes are kinda like really potent histamines that can cause bronchospasm.) There is some evidence that taking both drugs together, may offer better receptor blocking for patients with difficult to control asthma . The only downside ,is that Zileuton comes in a horse pill ( 600mg.) Fortunately, they now have a time release version that you only have to take twice a day.

3. Antibiotics– Because I take steroids everyday which lowers my immune system, they also want me to start taking Septra ( antibiotic) everyday, to prevent me from contracting pneumocystis pneumonia ( No, I don’t have HIV) . Coming down with that type of pneumonia in someone with my lung function, would kill even superman. Unfortunately continuous use of Septra can cause some pretty nasty skin rashes.

4. Exhaled Nitric Oxide–They’re going to start checking my exhaled Nitric Oxide levels every couple of months when I come in for my PFTs. A high level of exhaled NO is an indicator for airway inflammation and is a good tool to use for adjusting an asthmatics prednisone dosage. My most recent NO was 12.5 ( normal.) which would indicate that there is no need to increase my steroids at this time.
5. Effects of Exercise–I’m scheduled to have a repeat exercise stress test done. They want to see definitively, if I have an “exercise induced ” component to my disease, or if I’m experiencing excessive air trapping , or both conditions, when I exert myself. They can do this by hooking me up to a pulmonary function machine and monitoring my airway resistance continuously while I’m on the treadmill. If my airway resistance increases as the test progresses, that would be a strong indication that my air passages are narrowing and therefore I’m experiencing exercise induced bronchospasm. Hopefully this will solve the mystery as to whether or not, too much exertion is detrimental for a certain asthmatic I know. ( wouldn’t that be the pits!) If you’ve ever done this type of test before, then you know they’re not very fun. They basically exercise you until you puke or you pass out. Ohhh I can hardly wait.
6. Acid Reflux—Though I don’t have any symptoms of heartburn or acid reflux disease ( GERD), a high percentage of difficult asthmatics apparently have it , and don’t know it. The problems is that it can make your asthma worse if left untreated. So, next month they’re going to cram a tube down my nose into my esophagus and leave it there for 24 hours to measure the acid down there. I’m betting that I don’t have reflux, but Ive agreed to do this, to put and end to this issue once and for all.
7. The Rome Marathon –All of my Pulmonologists are dead against me doing this marathon. Citing the uncertainty of how my lungs will tolerate the local climate, the 15 hour flight over and back, the air quality in Rome, and the availability of specialty care if I should need it. My response……..I’d rather die than live in a bubble!

Another exercise test I have to do at every follow up visit, is called a “6 minute walking test”. (I don’t think they knew I was a marathon walker)
Anyway ,this is kind of a standard test they administer to people with lung disease , to see how short of breath they become when they exert themselves. Basically , you walk as far as you can in 6 minutes , and then they check your vital signs, your oxygen level and then ask you to rate how short of breath you felt during and after the walk ( known as the BORG scale)

Well , having just been discharged from the hospital 5 days prior to this research visit and being all jacked up on the roids , I thought it might be fun to racewalk the test… so that’s exactly what I did ….. and I caught a small snipit on video!

BTW…To complete the 6 minutes of walking , I had to walk up and down that hallway 30 times ! I would have done even better if didn’t have to stop and turn around 30 times..

PS.. If you’re reading this post after Aug 2008, it turns out that among those tested who had similar lung function, I ended up walking farther than anyone on record at UCSF. On average I walked 2400 feet ( almost a half mile) in six minutes.