Sorry for the huge gap in between posts. With my trip oversees, the Christmas holidays and a couple stints in the pokey… well, you know how it is. Lets just say that things have been a little crazy, not all bad, just crazy.

Ive been out of the hospital for about month now and like so many other times during these past couple of years after a bad exacerbation the “T” word has sprung up again. We actually began this conversation 2 years ago during my initial SARP visit. What makes this time a little different though, is that Ive actually agreed now to take the next step and have the assessment done. NO, this doesn’t mean that Ive changed my mind about not wanting a transplant, I still believe that I would just be exchanging one set of problems for another. But at the same time I don’t want to burn ALL of my bridges.

The evaluation will happen at either Stanford or the University of Pittsburgh later this spring. While I would prefer to have it done in Pittsburgh (So Dr Wenzel can follow me) it’s not really practical, because if I ever got listed for transplant in that region, Id have to relocate there. Standford makes much more sense since I only live about 60 miles away. At this stage of the game however, it really makes no difference where the evaluation takes place, as I’m too healthy to be considered for transplant at the present time, and even I was deemed sick enough I wouldn’t want it done just yet.

The evaluation itself consists of lots of diagnostic tests and meetings with various specialists, including surgeons, pulmonologists, cardiologists, psychiatrist, social workers and of course financial people. (Lung transplants are incredibly expensive, in excess of a million dollars, and that’s not including the follow up care that you need for the rest of your life.)

So, if I don’t want a transplant, why am I being evaluated you ask? Well, basically because there’s nothing else that can be done for me and my Pulmonologists think that I have nothing to loose and everything to gain by at least being evaluated. As is the case for many people with advanced Cystic Fibrosis, being evaluated for transplant at an early stage is a good way to get a general idea of where you stand as far as severity of your disease and what the likelihood is that you will be eligible for listing at some point. With an FEV1 % predicted still in 30′s, I’m not as sick as most who go in for evaluation, but then again I don’t have CF or the other more common transplantable diseases, so the criteria is a little different. Which brings us to the next issue, only a handful of people have ever received lung transplants because of severe asthma. I think the reason for this, is that asthma is not considered an ultimately fatal disease, as are CF, COPD, Pulm Fibrosis, etc. While 4500 Americans still die of this disease every year, asthma for the most part is considered a controllable disease. Only a very small fraction of asthmatics actually progress to the point where their lungs are destroyed by the disease like mine are. Then there are questions as to whether asthma can reoccur in the new lungs. Ultimately, the determining factor for in deciding who is eligible for lung transplant, is prognosis and quality of life. Most centers will only list you if your expected survival is less than 2 years or if your quality of life is poor. The reason the bar is set so high, is that median survival time for lung transplant recipients in only 3.5 years. They want to make sure that transplant will actually extend your life. Finally for me, there’s the age issue,Im 57 years old and rapidly approaching the cut-off age so I can’t put this off for too long.

Bottom line, I plan to live with the lungs I was born with for as long as I possibly can, which will hopefully be until I die a natural death. I would only consider lung transplant if (or when) the quality of life becomes totally unbearable. I see these upcoming evaluations simply as a way to measure and monitor which direction I’m heading in, so that I can be better prepared for whatever the future holds.

Well, after going back and forth with this for almost 2 years, I finally made the switch to a different medical group. Next week I’ll be seeing a Primary care physician as well as a new Pulmonologist. Both are part of the John Muir healthcare network in the eastbay town of Walnut Creek. Should I need hospital care, this is where my new prison cell will probably be. The facility also offers a service called “Care Pages” where inpatients can stay connected with family and friends via their own webpage. The new doctors offices and hospital are located much closer to where I live (15 miles versus 35).

During my last hospitalization at UCSF this past May, Dr Wenzel knowing the frustration I was having in finding a local doctor, put a courtesy call into to a lung specialist whom I had to tried to connect with a year prior, but who at the time wasn’t accepting any new patients. Well, that must have done the trick, because a couple of weeks ago I got a telephone call from this new doctor telling me that she would be more than happy to take me on as a new patient. (Dr Wenzel works her magic again!)

The main reason I’m switching to John Muir health ( or at least trying them out), is because Ive had too difficult a time finding a Pulmonologist who I really clique with over at UCSF. It was also way too difficult to access the pulmonologists when I needed them the most. All of the doctors that I liked were Fellows(doctors in training)who eventually graduated and moved on to bigger and better things. Don’t get me wrong, UCSF is a great hospital to go to if you’re sick, but a great hospital doesn’t do much good if you don’t have a pulmonologist following you on a regular basis.

In the interim, Dr Wenzel has been doing an awesome job of overseeing my care from the other side of the Country( sometimes the other side of the world), but it’s just not practical anymore. Because my disease is so complicated, we both agree that I really need to establish a relationship with a local lung specialist so that I can have better continuity and access. More important to me though, is connecting with someone I actually get along with.

Of course, it’s too early to tell if things are going to work out, but at least for now I have a local Primary care doc and a Pulmonologist who I should be able to get a hold of a little easier if needed. The new Pulmonologist also came highly recommended from friends of mine who are Respiratory Therapists. Hopefully this new alliance will mark the beginning of a new and better chapter in my asthma care…and one with less prison stays:-) If not, the search will continue.

Just a quick update on what Ive up too the last couple weeks.

Lungs
I’ve pretty much fully recovered from that last exacerbation and hospital stint. I think the intubation is what caused me to get so sick in the first place. An endotracheal tube is the perfect conduit for introducing bacteria and viruses deep into the lungs. I was coughing up stuff for almost a month, something which is unheard of for me. The intubation also disqualified from participating in the 8 month NIH study in Maryland. The criteria says you have to be intubation free for 6-12 months. Oh well, probably would have got sick from all the air travel back and forth to Maryland.

Thanks to a good word put in by Dr Wenzel, a highly recommended and popular local Pulmonologist, whom it’s been in possible to get an appointment with, has agreed to take me on as a full time patient. I’m gonna give her a try and see if we click. First appt with the new doc is July 20th.

Everything Respiratory Magazine
I’m flattered to have my story featured in this magazine.

Walking
I may not be walking as much as I did prior to Boston, but I’m still walking everyday for an average of 21 miles a week. Ive had to cut back on my 5 mile bridge walks from 5 days to 3 days a week, as my lungs just can’t handle it anymore. In October I’m hoping to a half marathon in Sacramento. I was supposed to do it last year, but I ended up in the slammer that weekend.

Travel
It’s no secret that I love traveling overseas and if my lungs cooperate, I plan to do just that. In November I’ll be spending a couple weeks in England ( which Ive never been too ) and next March I hope to return to Italy to visit friends and family.

Music
For those of you who don’t know, one of my biggest passions and pleasures in life is music. In fact, if wasn’t for music I probably would not have taken up walking. I can’t tell you important my Mp3 player was in getting me to Boston.

As a young child I played the trumpet and actually became pretty good at it, even won a couple of talent shows. When the Beatles came out, I switched to piano and eventually to acoustic bass and finally bass guitar. In my early 20′s I became so fascinated with audio production that I my put my RT career on hold and got a job in a prominent recording studio in south Florida. I started by working as a roadie for local mobile sound production company and worked my way up to recording engineer and music producer. Unfortunately, that lifestyle ( at least in the early 80′s) wasn’t very conducive to good lung health, so after a couple of years I ended up going back to Respiratory therapy. Well, here it is 30 years later and I’m going back to what I really love, playing the bass.

I purchased a couple vintage Spector basses, one 4 a stinger and one a 5 stringer. The instruments themselves are like little works of art . Almost as fun to look at as they are to play. Of course it’s been a quarter of a century since Ive had a guitar in my hand, but modern technology has made it much easier to get back on track with all the cool digital tools that are available now. Being old school can have it’s advantages too, because early on I learned to read music…a rarity among bassists. No, I’m not going to join a band or anything like that. I play for the joy of playing learning and having fun.

On Location
For the last few days, the town of Crockett has been inundated with huge Movie production trucks and personal. They’re actually filming right across the street from my house right now. They’re are lots of vintage 1930′s cars and props lining the neighborhoods streets and tons production people milling around. It’s a movie by Paul Thomas Anderson (who did Boogie Nights and Magnolia and a bunch of other hits) The story is about a man who returns after witnessing the horrors of WWII and tries to rediscover who he is in post-war America. Philip Seymour Hoffman plays the lead character. Oh…and I didn’t recognize him at first, but Joaquin Phoenix who is also in the movie, walked right past me (still in character) and say’s… how’s it going? . Pretty cool!

Well, that’s the latest. Hope everyone is staying reasonably healthy and enjoying their summer.

Cheers!

So in just a few hours Bib# 21619 is off to the Boston area to take another stab at the mother of all foot races. Monday morning I will attempt to finish my 3rd Boston marathon in a row and my 8th full marathon since starting this incredible fitness journey 5 years ago.

May not sound like a big deal to walk a marathon,but put in perspective; only 1% of the population will ever walk or run a marathon in their lifetime, and most of those people will be totally healthy. The number of people who have completed 7 or more marathons is astronomically small. So, even if I don’t finish the race this year, I’m still ahead of the game.

Btw, Y’all know that the Boston marathon doesn’t actually start in Boston, right? It finishes in Boston, but it actually starts 26.2 miles away in a quaint little New England town called Hopkinton. For the last 115 years on Patriots day, the towns’ population explodes with tens of thousands of some of the fastest runners in the world as they gather at athletes village to make their way to Boston. Some will finish the 26.2 mile course in less than 2 and a quarter hours.

And then there’s me……..
In 2010 , I became the last official finisher to cross the finish line. Out of the 22,672 people who completed the race, I came in dead last! In other words, I finished up in 22,672nd place.
Don’t ya just love it!

But regardless of how the race turns out, I probably wouldn’t be here at all if weren’t for the help of some generous and caring individuals. So let me take this opportunity to thank in advance, the officials at the BAA and my support crew, affectionately known as Team Wheezy . Helping me out again this year are Tom of Caire Inc, plusJon and Chris from the BAA. Jon and Chris will be spotting for me on bike and Tom will be providing logistical support on the course as well as transportation to and from the event. As a disabled athlete, I’m also allowed to have someone accompany me on the course, but this year I will be doing the race alone.

I also wanna thank some of the folks that contributed behind the scenes…. The wonderful folks at the Runningwarehouse for providing me with the shoes I’ll be wearing during the race, the very generous people at Rabbitair for providing me with clean air in my home, so that I could stay healthy while trained for the race, the Sony corporation for providing me with a bunch of their portable music players, which came in handy during those long training walks, to and to Microlife for providing me with the state of the art peak flow meters. Last, but not least, my Pulmonologist and dear friend, Sally Wenzel for supporting my fitness endeavors, no matter how extreme they might me.

While in Boston for the marathon, I’m also going to be participating in a medical study for runners over the age of 40 who take statin drugs (statin drugs are used to treat high cholesterol). The study is titled “The effects of chronic statin therapy on markers of skeletal and cardiac muscle damage in Marathon runners”.
They’ll be drawing my blood before and after the race and then a 3rd time 24 hrs later. After the study is complete, they’ll send me a detailed report of my lab results, including Lipid Panel, Liver Function Test, Muscle Myoglobin, CK Isoenzymes, Hemoglobin and Hematocrit and Cardiac Troponins. It’s basically a bunch of tests I need done anyway, so might as well contribute to science and get paid at the same time ($100 if you complete the study):-)

As far as the lungs go, I’ll pre-medicate with the usual bronchodilators. I’ll also have my portable neb with me on the course, along with a couple of epipens and a pocketful of inhalers. The riskiest time for me is usually not during the race, but afterward. The symptoms I experience in the hours immediately preceding the race will dictate how severe the flare will be. There’s really no way for me to stop or prevent a flare from occurring after exerting myself to this extent, but to increase my chances of keeping the flare at manageable levels, I’ll up pred to 50 mg the day before the race and then rapidly taper.

Depending how the day goes, I’ll try to post or tweet. If you’re dying to know how I’m doing, you can follow my progress via the AT&T athlete program. My bib# is 21619 (Not sure it will work if you live outside the US)

Had the great fortune of having lunch last week with one of my most favorite people in the whole world. Dr Wenzel was in town for the annual AAAAI convention in San Francisco and managed to squeeze in some private time with me in between her busy presentation schedule.

Although we keep in close contact via email, this is only the 3rd time we’ve had a face to face. It was so good to see her again. I love her to pieces (and I think the feeling is mutual). Ive never met a person, especially a physician, who has such a passion for severe asthma and the people who live with the disease everyday. She works tirelessly traveling all over the world trying to change peoples perception about severe asthma and to find better treatments for the most severe forms of the disease.

Among a million other things, we discussed the need for forming a grass roots national asthma advocacy and/or support organization geared for patients, as none currently exists. She can’t get involved directly herself because of her research interests, but she would be there to support such an effort in other ways. She also asked me if I would be interested in becoming a patient spokesperson for theNIH’s asthma research programs. I think I told her yes. The topic also came up about conducting a quarterly tele/cyber asthma support group which would be organized through the University of Pittsburgh’s asthma institute. I think it’s a wonderful idea.

The next time we meet up, will be in Pittsburgh. I’m scheduled to return there this summer for a SARP follow up ( and maybe a half marathon…..hehe)

Did I mention how much I love this women?

Oh yes, and word has it that SARP 3 is going to be funded!!! …YAH the research continues!

You know what? I might be cursed with crappy lungs, but I sure seem to be blessed with some cool and caring friends. Case in point:

After spending a pretty ugly night in the local ER, I woke up the next day to find a bunch of Facebook alerts on my phone. My talented friend and one women cheering section Kerri M, created this incredible mural for me and put it on my Facebook Fan Page (which she also created). I also found out that she had been posting updates about my condition on her blog. Kerri always finds way to cheer me up when times are not so good, so I guess I shouldn’t be surprised ….but custom artwork? How many people would take the time to do something like that! I love it, and am going to have it printed and framed. Thank you Miss Lovely.
Are you sure you weren’t born in the 1960s?

And how about this one from Danielle(another one of my asthmatic buddies up in Canada) ….So cool.

Thanks Danielle!

OK, Case in point #2:
After finding out that I had been hospitalized again, Sally Wenzel took time out from a convention she was attending in Chicago just to see how I was doing. She spoke to one of the doctors who was taking care of me and made herself available to them if needed. Mind you, Dr Wenzel who is one of the world’s imminent asthma specialists, has never been paid a dime for any of the help she’s ever provided me. She continues to be my strongest advocate for lung transplant and is a dear friend.

Case in point# 3:
During my hospital stay I had the privilege of sharing a room with one of the kindest, most compassionate and non pretentious people Ive ever met. His name is Larry M. And despite facing major open heart surgery in the coming hours , he was more concerned about my predicament than is own. Larry and I have very different views on religion, (not to mention the sexual orientation thing), but in the 2 short days that I got to know him and his family, I now consider them dear friends and I think the feeling is mutual. In a couple of months after Larry heals from his surgery, we plan to do some serious walking together. Maybe we’ll make up the “Heart and Lung” contingent for a future Boston marathon.

I don’t know if it’s the Christmas season or if it’s all the hardcore drugs they have me on, but during this 101st hospitalization for this thing they call asthma, Ive been reminded over and over again just how kind and caring people can be.
To all the people who sent me cards, emails and Facebook comments, thank you SOOOOO MUCH !
I might not get a chance to thank you all personally, but I know who you are and I will never forget your kindness. People whom Ive never even met before have taking the time to reach out. Well, I think that’s pretty great.

As for this current exacerbation, it was a relatively mild one and I was discharged from the hospital today. And and while I’m still very short of breath, I’m holding my own and thankful be home in time for Christmas. So many people aren’t as fortunate.

Now you know I couldn’t end this post without a video clip of some kind, right? But this time instead of posting images of me gorked out on a ventilator or sucking on a neb, I’ll leave you with this corny but totally appropriate snippet of the little doggy Christmas party we had in room 3104. ( I took this with my phone so the quality is not so great, especially with my thumb on the lens half the time.)

Wow, has it been an entire year already? I guess so, because I just completed my one year follow-up interview for SARP.

This time it was just a phone interview. One of the researchers called me last weekend and asked me a bunch of follow-up questions. Most of the questions had to do with whether my asthma was getting better, was the same , or was getting worse. What kind of medications I was taking and how often, the frequency of my symptoms, and questions about whether or not I had seen a doctor, been hospitalized, or intubated. Based on the data they collected during my initial evaluation, I’m sure the researchers found my responses predictable. Since doing SARP my asthma has gotten worse. Two intubations in one year is definitely not good.

One thing that makes SARP different from most other asthma studies, is that they continue to follow their study subjects basically forever, or until the programs end. After the initial SARP study, they do telephone and mail follow-ups every 6 months. Additionally, there’s an in-person visit that you’re supposed to do after the first year, so that they can recheck your PFTs and do some other tests. Unfortunately, I can’t afford to fly all the way to Pittsburgh Pennsylvania for a 2 hour follow-up research visit, so what I might do, is combine the SARP follow-up visit with something else that might coax me out to that part of the country.

Ah and wouldn’t you know it, every year in May the University of Pittsburgh Medical Center sponsors the Pittsburgh Marathon, conveniently located near the SARP center. Depending on how I’m feeling, I might just sign up to do the half marathon and while I’m town, do the SARP follow up as well. Combine a little business with a workout if you will. Ive read some good reviews about this race , so this gives me double the reasons to do it. Yeah, this is sounding like something that might just work out.

Anyways, I’d really be interested to hear about other peoples experience with SARP at the University of Pennsylvania, and/or the Pittsburgh Marathon. Hmmm… maybe I can get some of the SARP staff to do the race with me.

Just got my lung biopsy report back from Dr Wenzel. Seems I have high levels of a type of cell called a mast cell. A “normal” (not cancer) cell that has long been seen in asthma patients. But, mine are a slightly different version, which seems to be more common in people with really bad asthma. These new findings, along with all my other test results from the SARP study, are starting to paint a clearer picture of why my asthma is so severe.

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!

Sally E. Wenzel, MD
Director, University of Pittsburgh Asthma Institute @UPMC/Univ of Pittsburgh SOM
Pulmonary, Allergy and Critical Care Medicine
NW 931 Montefiore
3459 Fifth Ave
Pittsburgh, PA 15213

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

So after each bad asthma exacerbation or flare-up, I feel compelled to write something about the recovery phase that follows. You would think that after going through this process more than a hundred times, that I would get use to it. You learn to deal with it a little better, but you never get used to it.
Better in some ways, and worse in others, the anatomy of this recovery is pretty typical. So far, this is how it’s been going……

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.

Battle scars: 4 failed arterial line attempts and 12 failed IV attempts. I have no veins left and my radial arteries are so scarred up from previous insertions, that it’s virtually impossible to get access unless they put a central line in. Very frustrating for the doctors and very painful for me.

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.

Just a few hours later 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. Evey one 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.

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.

Bottom line…Much like a 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 likely to happen.

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.

Before I begin, let me preface this post by saying that I haven’t made up my mind as to whether I would even want lung transplant surgery, should it ever get to that point. I wanted however, to see what some of my Pulmonologists views were on this subject, and to get a feel for what kind of support I would have in whatever treatment option I pursued.

So last week I got together with 3 of my UCSF Pulmonologists to discuss my SARP evaluation and Dr Wenzel’s recommendation that I consider lung transplant surgery in the future. I began the conversation by bringing up all the wonderful things that the SARP study was accomplishing, which seemed to put a smile on a everyone’s face. But, the minute I mentioned the “T” word, you could sense the tension in the air. You might even say, that tempers were starting to flare…including mine.

No Way! … are you even close to being a candidate for lung transplant surgery, was their general response. After all, you can walk marathons! ( yeah…like I didn’t see that one coming )
Even if my FEV1s were to totally bottom out and I was at the point where I was needing supplemental oxygen 24 hours a day, if I were still able to walk ….even just a 10K, I would not be eligible for new lungs. It just wouldn’t look right.

They went on to reassure me however, that even though I have extremely severe asthma, that my PFTs have been relatively stable over the past 4 years and that there’s no scientific evidence to suggest that people with severe disease plateau at a certain level and then suddenly experience a rapid deterioration . (I’m not an MD or a scientist, but I don’t totally agree with that last statement.)

Beyond whether or not I would meet the actual criteria for acceptance into a transplant program, I think their main concern, was that I somehow didn’t understand all the implications of having this life-altering , can’t- undo-it , type of procedure done . In their view , I would just be exchanging one set of problems for another. Though they agree that I would probably be breathing a lot easier after transplantation, there’s also a good chance that my life would be cut short. This is why they prefer you to be on deaths door before considering such radical treatment. Tissue rejection is still a huge problem in lung transplant recipients, as they haven’t quite figured a way to administer just the right amount of medication to prevent rejection, without killing the patient in the process.

They claim, that while there are a few miracle stories out there of people thriving and living long lives after receiving new lungs, the fact is, the vast majority of lung transplant recipients are not so lucky. The survival rate is still very dismal and pretty much a crap shoot. Only 2 out of 5 people will survive 5 years after transplant, and many of the people who do survive, are plagued with frequent life threatening infections due to weakened immune systems. You have to be on potent anti-rejection drugs for the rest of your life and will need constant medical monitoring. I’m not sure I like the idea of having to be around hospitals, anymore often than I am now.

OK, so I see their point about this being an option of last resort, and I appreciate all the concern . I don’t agree with all of it, but I understand it. I think the real reason I got the response I got, is because I have asthma as a diagnosis. There have only been a few asthmatics that have ever been transplanted. The fact that I don’t require supplemental oxygen ( yet) is a huge factor too. In every other way, my lungs are trashed, but Im able to oxygenate.

I guess I should be relieved that I’m not considered sick enough to warrant transplant surgery, but at the same time, when one of the most respected asthma doctors in the world, tells you that you should seriously consider it, I think it’s worth learning as much as you can about it , so that you’re better prepared if the time should come. And while my current feeling is that I wouldn’t want the surgery done, who knows how I’ll feel about it a year from now, or if I get to the point where I’m struggling for every breath.

That bit about “being able to walk marathons” really got me to thinking about just how misunderstood I am and how misinformed people can be. It felt as those they were using my incredible physical fitness achievements, against me. For some reason there’s this crazy notion, even among lung doctors, that people with severe lung disease are supposed to fit a certain mold.
My response to that would be… why would I even want to.

They agreed that we should revisit this issue again in 6 months. Maybe things will be different then.

Last week after finding out just how damaged my lungs really are, the only thing going through my head was..WHY? All of the assumptions I had made about my asthma throughout the years, suddenly didn’t seem to make sense anymore. I was beginning to wonder if I really ever had asthma at all? Maybe I just thought it was asthma, when it was actually something totally different? These are the crazy things that were going through my head. I had a ton of questions I desperately needed answered , and since she knows my lungs inside out ( literally) , who better to ask than Dr Wenzel.

Well, not only did she take the time to answer all of my questions, but the answers she gave ….made total sense.
I’m posting some of that discussion here, because I think it might help others out there who are in a similar situation. At the very least, it makes a great refresher course for the RT’s out there.

[Steve ] Because my larger airways are so scarred and stiff, does that mean that they ‘re incapable of clamping up or spasming or narrowing? [Dr. Wenzel]  No, not completely, but certainly will be harder to spasm.

[Steve] If that’s the case, and my larger airways are not clamping down, when I have an exacerbation, is it the smaller airways that are reacting? [Dr.Wenzel] Yes, they most certainly are likely to be and because it is also likely that they are narrower to begin with, just a little spasm COULD effect it a lot.

[Steve] I thought there was no smooth muscle in the smaller airways? [Dr.Wenzel] There IS smooth muscle in your small airways. But, you probably ALSO have “Scarring”/fibrosis in those airways which probably leaves them normally much narrower than normal small airways. Just a little mucus or spasm and they will close.

[Steve] You mentioned earlier that I might not actually have chronic inflammation of my airways.  If there’s no inflammatory process going on, or no smooth muscle spasm going on, what causes the obstruction or air flow limitation when I flare-up? [Dr.Wenzel]  See answers above. In addition, you likely have “loss of alveolar-airway attachments”. The alveolar septae attach to the outside of the small airways and actually help to “tether” the airway open. When those get destroyed, as we think they do in SEVERE asthma, that tendency to PULL the airway open from the outside is lost.

If my airways are non twitchy or non-reactive because they are so stiff,  how is it that I can have severe asthma exacerbations that land me in the hospital and sometimes even on a ventilator? [Dr. Wenzel] Your lungs (I think) are very stiff and when you have an attack your work of breathing becomes VERY BIG. That is why your CO2 increases. In addition, you did have a couple of attacks where your lactate levels did increase… that also goes along with your breathing VERY HARD and causing your muscles to start breaking down.

[Steve] If my airways are so damaged, why do I respond, and even partially reverse, with certain bronchodilators and steroids.[Dr. Wenzel] Although you likely don’t have much inflammation, the little that is there (plus some edema) reverses with the steroids. The bronchodilators likely just relax your smooth muscle enough to have an effect, albeit not a big one!

[Steve] Do I have any elements of COPD or Emphysema? [Dr.Wenzel] NO you don’t have COPD OR EMPHYSEMA!!!!

[Steve]Isn’t that generally the course that asthma takes over the long term? [Sally] NO!!! ASTHMA ALMOST NEVER BECOMES EMPHYSEMA…unless you smoke!

[Steve] Regarding my FEV1s, I think the reason I got a 50% reading that one time, was because I exhaled less forcefully during that particular manover ( I was still sleepy from the bronchoscopy). For some reason, when I blast out as hard and as fast as I can, I get slightly lower numbers. ( I think because my airways are narrowing too fast?) [Sally] YES, that is most certainly the case. There is a FORCED vital capacity and a SLOW vital capacity (meaning just that, that you exhale SLOWLY from Total lung capacity to residual volume) It IS likely that your SMALL AIRWAYS do collapse when you exhale fast due to the external force on the airway being greater than the force holding them open during expiration (when you have negative pressures in the airways themselves) .

And finally, there was this….
[Steve] BTW…..The wager we had regarding me being able to ever blow a 50% FEV1 as a result of using Qvar , was that you would get a new set of golf clubs. [Sally]  hee-heee… I expect only the finest clubs when I get you there!

(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 Id been bronched since early adulthood, it’s really the first time anyone has ever seen the damage that decades of severe asthma exacerbations had caused. 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 a little 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 COPD or emphysemic changes that I often thought I had. Seems I have pure asthma and nothing else. 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

( here’s a photo taken looking down into my left lower lung lobe)

Dr Wenzel recommended that I seriously consider lung transplant 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 1-2 years (asthmatics are usually put at the bottom of the list.) My one saving grace so far, is that my blood oxygenation is still really 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.

Found this interesting and informative article about Dr Sally Wenzel, and why she decided to get involved in severe asthma research. It gets a little technical in the middle , but well worth the read.

The more I hear about this amazing women and all of her contributions to the study of this disease, the more excited I am to meet her and become one of her research subjects.

As Dr Wenzel jokingly told me the other day;
“A little MORE closing the loop still needs to happen. That is why I am so excited that I will get to meet you and have you personally participate in closing the loop.”

Wouldn’t that be something, if my DNA, lung tissue or some other bio marker did actually help close the loop?