Figured I better update my blog before people think I died or something.

Where do I start.

Walking ,I’m happy to report that while my lung function hasn’t been all that great this year, I am indeed still walking. I’m putting in about 22 miles a week, which is actually more than I was doing last year at this time. Unlike in previous years when I was doing all those races, I’m now walking primarily to stay active and in shape. Walking conditions my body in such a way, that makes it easier for me to tolerate my dyspnea. It also affords me the opportunity to get outdoors and to listen to my favorite tunes. Music always sounds better to me when its piped into my ears in high fidelity. Next to my guitar, I think my MP3 player is my favorite toy. I’m not ready to make an official announcement just yet, but there maybe another marathon attempt in my future. Stay tuned.

On the personal health front, I seem to be having more frequent severe exacerbations. Since April, Ive been hospitalized 3 times and had to be intubated during 2 of them. Fortunately, I now have wonderful pulmonologist following my care, which makes the difficult times just a little bit easier to get through. Knowing you have someone who you can call anytime and is there to help you, really makes a difference. I’m also having a VAP, venous access port put in. After 50 years and 104 hospitalizations, I have no veins left. This new port( which is implanted under the skin) will go a long way in stopping the torture I have to go through every time I need to have an IV started. Of course a central line carries it’s own risks, but to me it’s totally worth it.

Music, Well what can I say, except I love it and that it brings me a lot of joy. I wish I could play my guitar all day.
Ive only been playing now for about 4 months, but have regained most of what I had forgotten during my 35 year break. Bass playing styles and techniques have expanded exponentially since I last played. I’m really loving learning all these new methods. My real passion though is traditional jazz and rhythm and blues styles. I love latin and Motown too. Been experimenting with Mixcraft audio mixing software and have created a couple of tunes. ( I’ll post them in the future if you want). I’m hoping to attend one of Victor Wooton’s bass camps next spring. He’s a gifted bassist and a wonderful teacher.

Some traveling in the picture. So next month, if I don’t get sick, I’ll be taking my very first trip to the UK. Ive been to other parts of Europe , especially Italy where I have family, but Ive never been to England. I’m only going to be there for 12 days, but I have a lot crammed into those 12 day. I’ll be staying in both Bath and London and will travel to different areas of the country from those locations. I think England is such a beautiful country and I love the people. This trip has been in the planning stages for almost a year now. I’m getting itchy to go.

Asthma advocacy and support. I’m happy to report that membership and/or readership to both my blog forums and my Facebook SARP group continue to grow. We are creating a real community based on education, compassion and support for those suffering from this disease. Our members include world renowned scientists and physicians, Nurses and RTs , but mostly we have really nice people who have really bad lungs. If you have asthma or have an interest in it, please join us.

Finally, It’s my ( our) favorite time of the year, Autumn. Winston wanted to show off his Halloween costume with his fans.He’s a bit of a ham, like his human counterpart.

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!

I just accepted an invitation to participate in a new clinical research project that studies the effects of a certain oral diabetes drug on people who have severe asthma. The technical name of the study is…..
“A Randomized, Placebo-Controlled, Double-Blind Pilot Study of Pioglitazone Hydrochloride in Severe, Refractory Asthma”

It’s being conducted at the NIH in Bethesda Maryland.
This means that I’ll be traveling between San Francisco and Washington DC every 4 weeks for the next 10 months…. a total distance of 50,000 miles if I complete the entire study. Hey, I’m already an accomplished long distance walker, might as well be a long distance lab rat, right?

Ive participated in lots of asthma studies, but this one is a little different in that not only is the research being funded by the government, the research center itself is owned by the government. What a lot of people may not know, is that the NIH funds almost all of the medical research that is done in this country, including SARP.

I don’t expect to benefit directly from this particular trial, but because research studies like this that focus on refractory asthma are extremely rare, and because its a little easier for me to travel than most with this disease, I feel I have an obligation to help out if I can. My participation in the study might also give me easier access to future studies at the NIH.

The study involves an 8 month clinical trial of a diabetes drug called that Pioglitazone Hydrochloride ,that might also help people with severe asthma. It’s a double blind study, in which the research subjects are given a placebo for 4 months and the actual drug for 4 months. No one knows in what order these are given, including the researchers ( hence the double blind).
The drug carries with it some potentially severe side effects (the most serious being congestive heart failure),so the study volunteers have to be screened and come in for blood work and other lab tests every few weeks.

The government picks up for all study related travel, but I’m not sure how my body is going handle all the flying back and forth.The research coordinator is doing her best to make getting to the facility as easy as possible for me. They’re going to book me only on non-stop flights will have a cab pick me up at the airport, so that I don’t have wait for the shuttle. We’ve also worked out a schedule where I’ll only be away from home 4 days a month and only mid-week. But still, just the stress of traveling in general can have a major effect on my breathing, so the plan right now is just to see how my body handles it and take it one step at a time.

My initial appointment at the NIH is in June. At that time they’ll do a bunch a preliminary tests, including PFT’s, echocardiogram and Dexa scan to make sure I’m healthy enough to proceed with the study.

If you have severe asthma,can travel and are interested in volunteering for this study, here’s the info.

I was talking with one of the Asthma Research Recruiters over at the NIH in Bethesda Maryland where I’ll be involved in a study later this year( more about that in a future post), and I was shocked to learn that they were having a really hard time getting volunteers for there asthma research projects, especially those with severe asthma.

Here’s the deal… asthma isn’t gonna go away anytime soon on it’s own. If you suffer from this disease and you want to improve the odds of having better treatment options available to you during your lifetime, you should seriously consider becoming a clinical research volunteer for an asthma research study or clinical trial in your area ( or if you’re adventurous like me, out of the area).

To make it easier for you, I’ve listed 4 of my favorite clinical trials search engines to get you started.

1) Clinical trials.gov

2) Research Match

3) Medpedia

4) Trial-X [You'll find a handy little search tool on my sidebar]

While searching for a study that interests you, ask yourself these questions:

* What is the purpose of the study?
* What is required of me?
* What is my role in the study — am I a healthy volunteer or a patient volunteer?
* Will the study directly benefit me?
* Will the study benefit others?
* Are there risks? If so, what are they and what are the chances that they will occur?
* What discomforts are involved?
* What is the total time involved?
* Are there other inconveniences?
* Have I discussed participation in the study with those who are important to me, such as family and friends?
* Do I wish to participate in this study?

We need to put and end to the suffering that this disease causes. There’s a lot of promising research going on right now, but they can’t go forward with without human test subjects. I know it’s hard to find the time required to get involved, but many of these studies will reimburse you for your efforts….some will even pay for your travel expenses. If you have moderate to severe asthma and can travel, you might also consider SARP at the University of Pittsburgh or one of the asthma studies conducted at the NIH.

Thanks for your help!

You know what? I might be cursed a 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.)

Being sick for long periods like this, often has me thinking about lung transplant surgery and how wonderful it would be, at least in my mind, to not have to struggle to breath all the time. This month also marks the one year anniversary of my initial SARP work up, and the infamous meeting of the minds over at UCSF. At that time we had all decided that my disease wasn’t severe enough to be considered for transplant, and even if I did meet the criteria, I had pretty much made up my mind at that time, that transplant surgery was something that I wasn’t interested in. Well that was then, this is now.

Here I am a year later, getting more breathless everyday and starting to seriously re-think my earlier decision. But wait… even if I were to change my mind and actively pursue lung transplant surgery as a treatment option, my current baseline FEV1 of 35% is still too high to qualify. And if I’m suffering this much in the mid 30′s, I can’t even imagine how bad it must feel to be even lower.

The fact is, most people on the transplant waiting list have FEV1′s in the 20′s and sometimes in the teens. The majority are also on supplemental oxygen 24/7, and some of the sickest people are even on ventilators while they wait for donor lungs. I only require oxygen when I’m actively flaring and my FEV1 rarely drops into the 20′s unless I’m really really sick and Ive always managed to bounce back. [This whole oxygen criteria thing shouldn't even apply to an asthmatic waiting for transplant. The pathology of asthma is much different that Cystic Fibrosis or COPD. Asthma is a disease of the airways, not the alveoli. Most asthmatics don't require supplemental O2 unless they're actively flaring].

I suppose I should thank my lucky stars that my FEV1 readings are still in the mid 30′s, and occasionally even into the 40′s, but as good as I have it in comparison to those waiting for new lungs, life in the the 30′s is not exactly a picnic. And the fact that my lung function has dropped almost 30% in 6 years, tells me that my numbers will only continue on that downward path. It’s not a matter of if they will drop into the 20′s, but when .

Living in the 30 percent range is like living in a kind of breathless purgatory. Your days are filled with this low-level dyspnea that doesn’t get too severe unless you’re flaring, but is always there in the background effecting everything you do and making you miserable. In the 30′s percent range your lung disease becomes so advanced that most conventional therapies or medications no longer work, yet you’re not quite sick enough to qualify for transplant. Now, if I had emphysema and had lots of air-trapping, I would be a perfect candidate for LVRS or airway stents. But, I don’t have emphysema, nor do I have the type of hyperinflation or air-trapping that could be helped with airway stents. I have severe asthma with fixed obstruction and there’s very little that science can do for people like me.

There’s another criteria for lung transplant surgery that creeps me out a little and even makes my doctor a little uneasy, and that is, the longevity issue. How long can I be expected to live if I do nothing? Ive had doctors give me predictions of as much 5 years all the way down to one year. In order to be a transplant candidate you have to have a life expectancy of 2 years or less. Most transplant centers base that prediction on a BODE score of 5 or more.Currently, my BODE score is a 4.

I know I should be grateful for all Ive achieved through fitness and pure stubbornness, but sometimes I feel like I’m being penalized for doing the right thing and staying in shape. Had I not done all these healthy things, my FEV1 would have surely declined faster, putting me in a position where Id be eligible for transplant by now. Let’s face it, not too many people with an FEV1 of 35% have completed 7 marathons. What’s really ironic though, is that transplant candidates are scored on their level of physical fitness. Transplant centers want people who will be healthy enough to survive the wait time, ( up to 4 years in some cases), the surgery and the recovery. The stronger you are going in, the better the results. How that’s possible with an FEV1 in the 20′s or teens is be beyond me, but that’s the way it is. I have the required physical and mental stamina now, but will I still have them when my other numbers finally catch up. And even if I do meet all the criteria, will it happen in time? Most institutions set the maximum age for lung transplants at 60, I’m 56.

So as I’m getting ready to finish the closing paragraph of this post, the “But” part of the title hits me in the head like a ton of bricks. Life sucks with an FEV1′s in the 30′s, but I’m not to the point yet where I dread waking up everyday. I’m not to the point where everything I do is a total struggle. I still have the occasional “good breathing day” (or “not so bad breathing day”, whichever way you want to look at it). I’m not ready yet to trade my lungs in for a pair that may, or may not give me more of those precious “good breathing days”. But most importantly, and regardless of all the other criteria, I know I’m not ready for a lung transplant, because I’m still questioning whether I can live without one. I’ll know Ive hit my rock bottom when I’m no longer able to walk and life is no longer worth living…it’s as simple as that! I can see now why they set the transplant bar so high. It’s meant as a last resort, not a treatment option. So on that note, I’ll stop crying poor me and get on with life.

And as far as predicting how long I’ll be able to continuing walking, who knows, but it sure would be cool to rack up 3 Bostons in a row, before throwing in the towel.

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.

It’s been almost a year since Ive updated my asthma status. Here’s the latest report card. For the year, I give myself a C +

In general my lung function has only declined a couple percent which is good. The problem of course, is that when you’re down in the lower ranges like I am, even the slightest change can have a huge impact on the way you feel. My baseline FEV1 now ranges from 33-42%, compared to 36-47% a year ago.

Probably the most noticeable change, and my biggest complaint by far, is that I get short of breath much faster now when engaging in even physical activity. Magnify that 3 or 4 fold when I do activities like racewalking or marathon walking.

My dependence on opiates and anxiolytics to quell my breathlessness keeps growing. Where I used to only take these drugs occasionally, I now take them on a daily basis.
The good news is that they do help and have probably kept me out of the hospital on more than on occasion.

My medical establishment labels are unchanged ( no big surprise there). Under the GINA guidelines, I’m still labeled a severe persistent asthmatic. Under the brand new SARP phenotypes for severe asthmatics, I’m labeled a Catagory/Cluster 5, Childhood onset asthmatic. ( Thank you Dr Wenzel)

Symptoms
• I’m pretty much short of breath to some degree all the time now (even when I’m in my green zone). Most of the time it doesn’t bother me because I’m used to it. But in addition to the low level chronic breathlessness, I’ve also been getting these short, but very intense bouts of dyspnea which seem to spring out of nowhere. The sensation is like that of sudden suffocation. It’s like someone put a bag over my head. It feels like my respiratory muscles are too weak to expand my lungs when I take a breath in. The sensation makes me anxious, which then perpetuates this viscous cycle of not being able to catch my breath. It’s awful. This video ,which Ive used before in my blog posts, does a great job of depicting what these intense mini attacks kinda feel like. The only difference is that I don’t struggle the way the actor does in the clip.
  Thankfully these bouts only last an hour or two and are usually relieved with meditative breathing, multiple back to back neb treatments and sometimes opiates. Unfortunately, these intense flares seem to be occurring more frequent now….almost daily. They’re probably a result of declining lung volumes and increased sensitivity to air-trapping.
• For the last 6 months I’ve also noticed a slight, but persistent audible insp wheeze when I breath. Hence, the “Inhaler voice” It’s more annoying than anything else, but I hate the way it makes my voice sound. ENT actually checked my vocal cords and they look fine ( no stenosis)
• It’s becoming increasingly more difficult for me to sleep laying flat. I now have to pretty much sleep with my back propped up, almost to a sitting position. Last year I switched from a conventional bed to a foam bed, which helped ease my lower back pain.
• A noticeable decreasing tolerance to exercise and physical exertion in general. I get winded much easier now when I do any type of exercise or walks.

Incarcerations

• 2 hospital admissions so far this year, totaling 12 days. 8 of those in the ICU, and 2 of those on a ventiltor.
• Ive had one intubation this year, bringing my lifetime total to 16 ( we’re talking Ripleys Believe it or not stuff)

Fitness and Diet
• Despite my worsening dyspnea, I still force myself to walk at least 4 days a week ( 4-6 miles per walk) and even farther when I’m training for a race.
• Earlier this month, I switched to an all organic diet. Additionally, Ive cut my sugar intake in half and eliminated HFCS almost completely. It’s way too soon to see how much of an impact this new way of eating will have on my health in general, but I suspect it will eventually be a positive one. How could it not.

Treatment Plans
• My Asthma action plan and medication list are pretty much unchanged, except that I take methadone (10mg) every evening now. [UPDATE---Methadone discontinued on Feb 3rd 2011]

New Treatment Options
• Bronchial Thermoplasty is no longer an option for me. My asthma is too severe, my lungs are too scarred. I don’t have much smooth muscle left to shrink. (* Speaking of Bronchial Thermoplasty, this is one of better articles Ive read on the subject. It’s objective, factual and well written)
• I’m waiting for clinical trials to begin ( hopefully by this time next year) on some new Th2 (IL-4/IL-13) blocking drugs.

  Th2 blocking drugs (if they turn out to work), block protein factors related to, but not the same thing as, allergy. These blockers are believed to work “higher up” on the immune inflammatory cascade (where things are getting started) so that they “could” block more things of relevance to asthma. I have a problem with mucus blocking my tiniest airways, which causes me to air trap. (air trapping is the number 1 cause of my suffering). We’re hoping that this new class of drugs might help with that. ( per Dr Sally Wenzel)

( read more)

Well, after all the training, all the planning, and all the hoping like crazy that my sore foot will somehow heal in time and that my lungs won’t act up too bad, for better or worse, to finish or not, the big daddy of race weekends is finally here!

Saturday night I catch the red eye out of San Francisco and should be in Boston bright and early Sunday morning. Mike was kind enough to pick up my Bib and Goodie-bag at the Expo today. This saves me from the hassle of having to go all the way into downtown on the subway after flying all night. The Boston marathon Expo is massive and a great place to buy race merchandise and get all psyched up about the race itself, but there’s nothing I really wanna buy this year and Ive already done the race once, so I’d just as soon skip the crowds and spend the day hanging around the hotel and resting up.The million dollar views of the Boston harbor and skyline from my hotel room are worth the trip alone.

My race top, courtesy of the University of Pittsburgh’s Asthma Institute and the best asthma doctor in the world, Sally Wenzel.
I figure that for every mile I walk, appx 10,000 people will see my shirt sleeves. My hope, is that my presence in this race will attract some much needed attention in the areas of severe asthma research, education and treatment.

Later on Sunday, Mike, myself and the crew are all gonna get together for an early dinner at a nice Italian restaurant. That’s probably where we’ll discuss the logistics of the race and who’s gonna to be doing what, when and where.The plan right now, is to arrive at the Athletes Village in Hopkinton around 7am. This will give us a couple hours to warm up and hopefully meet up with some of the other mobility impaired athletes, some of who’s stories are truly inspiring. The latest weather reports are forecasting intermittent scattered showers along the marathon course. Light, brief showers I can deal with, as long as it’s not too cold.

It’s weird, but I feel just as nervous and excited about this year’s trip, as I did last year. And even though I sorta know what to expect when I get there, it’s all still very much a big adventure for me. The only thing that will put a damper on the fun, is if I have to pull out of race because of my bad foot or my lungs. But no matter how the race turns out, I plan to have a kick-ass time in Boston!

So, that’s it. I’ll let you know how it all went next week after I return home.

To all the other runners out there who are doing Boston, good luck, have a blast, and keep an eye out for me!
To all my friends and readers, thanks so much for your continued support!

Oops…almost forgot, I know a lot of you who live in Canada and elsewhere might not be able to receive the Boston Marathon ATT athlete text alerts, so for those of you who are still interested on how we’re doing in the race, my friend Lis, has agreed to send out tweets throughout the day . Her twitter name is SFAUDIOGAL . I’m sure I’ll be updating on Facebook as well. Cheers!

This news came in after I posted……….

VIEW ALL NEWS HEADLINES

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

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

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

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

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.