Ive only been out of the hospital for 4 days now , and despite being still quite sick, I’m actually starting to feel more and more normal again (thats a scary thought huh). Though very limited, today I was able to resume my daily walks.
I don’t think healthy people realize just how much of an impact a single severe asthma exacerbation can have on the rest the body…It takes a lot out of you and sometimes the treatment is as bad as the disease. All the IVs and tubes they insert in you, and all the drugs they pump through them , effect not only your lungs, but the all the other body systems as well. I always come out of the hospital majorly bruised and beat up. This time in particular, it did a number on my arm and leg muscles. In just 10 days I went from having moderate upper body strength, to having absolutely none at all. Just 3 days prior to this last hospitalization, I was lifting weights in the 80-120 lb range on the weight training machines at the gym. Today, I can barely lift my arms over my head with NO weight.
The one thing I’m really good at, has been effected as well. Before I was incarcerated , I could easily walk 10 miles without batting an eye. Today , it took all the lung power I could muster just to limp my way through 3.5 miles. I’m having serious doubts now, as to whether I’ll still be able to do the SF half marathon next month. I may have to forgo that one, and set my sights on the ET marathon as my next race.
I’m very strong willed and I always seem to recover quickly after a bad one…but never fully. Each severe flare-up that I survive, takes just a little bit more out of me that I can never replace. It’s a constant uphill battle in just maintaining what little I have. It’s been a full week now since I came off the ventilator, but my throat is still sore from the tube and my dyspnea level has been at times, off the charts.
OK, enough of the whining and self pity routine. I’m going to put this latest chapter behind me , so I can start focusing on the things I really love doing …. namely racewalking, concert going, and avoiding hospitals.
I had been feeling really crumby most of that weekend prior. My dyspnea was increasing and my peak flows were gradually trending downward. By Sunday evening it was pretty evident that this flare-up was getting worse , not better. I bolused myself with 60mg prednisone and decided I would try to tough it out another 24 hours in order to give the steroids a chance to kick in.
On Monday morning I woke up lethargic and more breathless than the night before. My peak flows were now below 200 (my red-zone) and the neb treatments weren’t helping anymore. By early that afternoon I was starting to get really uncomfortable and fidgety ( this is usually a sure sign that my CO2 is rising), so I decided to call it day and headed to the hospital. At 2 pm my partner dropped me off in front of UCSF Emergency room . The next time I saw him, was 24 hours later after waking up on a ventilator.
We’ll start the gore fest with a little footage I took with my phone while I was in the ER. My Hannibal Lecter look (as Dave McGovern, my racewalking coach, so kindly puts it). It’s actually called Bipap, which is basically a machine that pushes air into your lungs and then holds that pressure in your airways through out the breathing cycle. The Bipap wasn’t cutting it though, and 8 hours later I ended up on a Ventilator.
Rewind to Monday afternoon: I high tail it to the UCSF Emergency (my home away from home) where they proceed to give me the usual continuous Albuterol nebs at 20 mg/hr along with Bipap set at 10/5. While there I received additional IV steroids, Mag Sulfate and a host of other asthma remedies. The first ABG results came back marginal , with subsequent gases getting gradually worse .My oxygen saturation was OK , but my CO2 was starting to climb. After a 6 hour stint in the ER, I was assessed by the ICU medical team and immediately transferred to the new 13th floor medical ICU , where they continued me on the Bipap, this time adding Heliox. They attempted multiple times to insert an arterial line in my wrists , but were unsuccessful. For the time being they would monitor my respiratory status using other means.
Over the next few hours, I was asked repeatedly by the doctors, if I thought I was tiring out ( something they always ask ), and each time I would respond to the negative, telling them, that at least for the time being, I felt like I was holding my own and did not want to be intubated. 6 hours later, despite being on continuous albuterol and bipap support, I was starting to poop out and finally caved in to their request. I was intubated at 2:30 am Tuesday morning.
The next thing I remember ( which turned out to be 14 hours later), was waking up with a tube shoved down my throat, gasping for air!
I have never experienced that degree of suffocation in my life. I was attached to the ventilator,yet..I couldn’t breath. Ive been intubated and ventilated many many times for severe asthma, but usually they keep me asleep for a couple days until the attack subsides. This was the first time Ive actually woken up on the ventilator during the peak of an attack. For the first time in a long time, I thought I was actually going to die. I remember hearing them saying ” you need to relax” ..and I can remember thinking..” you guys are going to kill me” … ” I can’t breath” . I thought something was wrong with the ventilator, but it turns out that it was my lungs that were all messed up.
My response to treatment, thus far, seemed to be making a lot of the doctors nervous. There was pandemonium in the room with doctors rushing in and out and nurses trying frantically to calm me down so that I wouldn’t self extubate. They finally gave a me a pen and paper on a clipboard to communicate with. I kept writing..” I can’t breath” . On more than one occasion, the feeling of suffocation got so bad ,that I had to disconnect myself from the ventilator just to get a breath of fresh air. Of course, all the alarms went off and RT got really upset with me.
The secretions in my lungs weren’t making things any better. All the junk that had accumulated in my chest was making it even more difficult to breath. You could hear me gurgling every time I took a breath. Being an RT, I knew how to self suction. You should have seen the look on their faces when I started to suction myself.! I(and they) were suctioning gobs and gobs of the grossest phlegm you can imagine. Dark reddish brown color with the consistency of jello instant pudding. Anyway, this nightmare of falling asleep and then waking up in a sitting position to find myself drowning in secretions, seemed to go on forever. Every time I got to the brink of wanting to rip the tube out of my throat, they would sedate me with Verced , and the cycle would start all over again. I would be out for an hour, and then I would wake up suffocating again. It was like the worse nightmare you could imagine. It was like hurdling down a long dark tunnel, and then suddenly, I would burst into conscientiousness ,waking up with a huge GASP. I was so miserable, I just wanted to die.
While all this was going on, I also experienced an episode of temporary blindness. Every time I would open my eyes, all I could see was a bright blinding light. I could make out silhouettes , but I couldn’t see people faces. It was really weird. They got worried about this new development and immediately called in an eye doctor to check me out. He couldn’t find anything obvious on his exam. He said it might have had something to do with pressure on the optic nerve. Thankfully the problem subsided and my eyesight came back.
So why on earth was I not sedated and kept asleep to begin with? Well, it turns out that I may have had a rare , but potentially serious reaction to the drug that they normally use to keep intubated patients asleep. The drug is called Propofol and it’s probably the #1 mostly used anesthetic in the world. It’s a wonderful drug, because you can basically turn on or off someone’s conscienceness like you’re turning on a light switch. It works super fast. It’s routinely used to keep intubated patients asleep, so that they don’t fight the ventilator like I was. When you want them to wake up, you simply stop the infusion. You wake up instantly. Works great when you want to wean someone off a ventilator. Though Ive been on this drug many times over the years, for some reason, my body wasn’t liking it this time and I began developing a lactic acidosis ( where your blood gets really acidic due to muscle breakdown.) My CKs and lactate levels were also getting really high. After ruling everything else out ( including too much albuterol , which can cause a similar problem), they concluded that it must had been the Propofol and immediately stopped the infusion. As an alternative ,they had to use a drug called Verced to sedate me. A nice drug for relaxing you , but not really designed to keep someone under for long periods.
Here are a few pics my partner took of me gorked out on the vent. There’s a good shot of the ventilator settings for you RTs out there. ( One of my ex co-worker/ RT friends, saw the pics on Facebook and noticed that the vent was in the weaning mode)
Finally after 2 days of pure hell, they decided that it was probably better to take me off the ventilator and let me breath on my own, rather than risk me blowing out a lung because of all the fighting I was doing on the ventilator. ( I’m just guessing that’s what they were thinking..I don’t know for sure).
Day 4, I’m now off the ventilator breathing pretty well and my blood gases have returned to normal. As the day progresses I start to get this strong urge to use the bathroom. I already had a catheter in me to handle number 1, but now, I had to go number two! After not going for 4 days I guess it was no big surprise that I would eventually have to go, but I wasn’t prepared for for what was about to happen.
Unfortunately, UCSFs new 13th floor ICU doesn’t have toilets in the patient rooms, so for the first time in more than 20 years I had to use a bedpan! But, if that wasn’t bad enough, I had the worse case of diarrhea and cramps you can imagine. I don’t think it bothered the Nurses, but it sure bothered me. I was hating life! For the next 2 1/2 days, my lower gut was in knots and the nausea and cramps that followed were unrelenting. They eventually set me up with a bedside commode ( basically a toilet on wheels), but with all the wires and tubes that were attached to my body, it took at 2 nurses and a physical therapist to get me from the bed to the commode. And guess what? Someone has to empty the commode. How embarrassing. On that first day , I went 5 times, on the 2nd day , 4 times ! ( You have to remember, I hadn’t eaten anything in the previous 5 days, so where this was all coming from I don’t know). Apparently , on top of all the other drug reactions, I was now having a reaction to all the antibiotics and all the other drugs they were pumping into me. To be on the safe side, they decided to put me in isolation for C-diff precautions.
By Friday afternoon the stomach cramps were diminishing in intensity and my breathing was much better, so they transferred me out of the unit to a private room ( thanks to my isolation order) in the step-down unit ….with a private toilet…YEAHH . My C-Diff test eventually came back negative.
Things were looking up. The only problem I had to address before going home , were my swollen ankles and my oxygenation level. Because I had no IV access in my arms, earlier in my stay they had to place multiple IVs in my feet. Normally this wouldn’t have been a big deal, (Ive had IVs in my feet before) , but this time because of all the fluids I received, somehow the vein in my foot must have blown , so some of the fluids that were supposed to go in my veins actually ended up in the tissue surrounding my right ankle. As a result , this caused my foot to arch downward ( what they call foot drop).
When I was finally strong enough to get out of bed, just standing up was painful because it forced my feet to flex back to the normal position. For the next 2 days, I did multiple short walks , and when I was in bed, I propped my feet up with pillows and iced my ankles which really helped a lot.
The very last challenge I had to meet before being discharged home, was being able to walk without desaturating. On my first attempt at walking down the hallway, my sat went from 95 to 79% in 2 minutes. After doing several more walks I was only desating down to 85%, but this was not acceptable to them. After a lot of coaxing and a threat of not being discharged, I agreed to go home on Oxygen until I got better. On Sunday afternoon at 2pm, almost 7 days to the minute, my 94th sentence was commuted and I was released on good behavior.
96 hours later, I looked like this! In total, I found 36 holes in my arms legs and neck.
This was a tough one, but I’m thankful that I got through it, more or less in tack. I have a lot of hard times ahead of me,because the hardest part of this exacerbation actually begins now. For the next two weeks I’ll be fighting off the prednisone withdrawal symptoms and trying to regain some of my strength. Months of fitness conditioning and endurance building were wiped out in just a single week in the hospital. Then again…. all that conditioning is probably the reason I’m still around to blog about it.
I’d like to thank the following people for putting up with my shit (literally) and for treating me like a human being instead of a medical oddity;
Dr. Erika Moseson, Dr. Daniels, and all the other interns and residents who helped save my life…..again.
Also to ICU nurse James, and TCU Nurse Jen O.
Yeah, I made it to Boston , Ive walked the Rome and Portland marathons a couple times, and yeah Ive been written up in lots of walk magazines and medical journals, but I think a lot of people who hear about me or read my blog, assume that because Ive done all these things, that I lead an exciting life and that my asthma is well controlled and more of a nuisance than anything else. What they don’t see, and what I rarely write about unless I’m really sick, is the hell I go though on a daily basis when I’m not doing all those “fun” things.
Most days start out pretty good with my best breathing occurring during the morning hours. That effect however, rarely extends into the afternoon. Generally, as the day progresses, so does my breathlessness. If I eat even a small meal for lunch or dinner, the bloating that results, only adds to my breathing discomfort. By early evening I’m usually so short of breath , that I will have to take neb treatments every hour or two until bedtime. On most evenings I have to take Ativan or a strong opiate to quell my dyspnea enough to where I can nod off. When it’s time to go to bed I pre- medicate with a neb treatment , 2 Motrins and a half a vicodin.
If I’m able to sleep at all, it’s usually for no more than 2 hours at a time and then I wake up gasping for air. Sometimes I’m so physically exhausted that I will lay there in a semi- awake state feeling myself suffocating…it’s an awful feeling. After about 5 minutes of that, I have to sit up to catch my breath and then get up and take a breathing treatment. By the time I finish with the breathing treatment, I’m unable to fall back asleep and will lay in bed wide awake until the sun rises. By 4 am my shoulder muscles are hurting so bad from shrugging them all night long, that I’m forced to get out of bed just to relieve the pain. Finally by 6am when the 9 pills and the 3 different inhalers I took finally kick in, I’ll usually start to feel pretty good again. After that, if all goes well, I have about a 8 hour window of decent breathing, in which to get my daily chores done, walk , and get my daily exercise and/or training in.
Keep in mind that the above scenario only plays out when I’m having a relatively GOOD breathing day. On the not-so -good breathing days, you can skip the exercise part all together…or anything physical for that matter. If my asthma gets out of hand, then I have to deal with the uncertainty of just how bad it will get and the added stress of possibly being admitted to the hospital…or worse. Then there’s burden that these things place on the people who care about me.
So yeah, Ive done some pretty amazing things and I hope to continue doing more, but at the end of the day I’m just a regular dude with really bad asthma and a tremendous will, dealing with this disease the best I can.
Boston is definitely tough act to follow, but there are still a lot of fun races out there, and many more challenges I’d like to tackle. Next up for me are the SF and ET half marathons, both of which Ive done before , but want to do again…. each for different reasons.
The San Francisco marathon choice was pretty much a no brainer for me. Not because of its a very challenging and beautiful course, or the fact that the race is held in one of the most fascinating cities in the world, but mainly because it was the very first race I ever did. It was the race that started it all for me. Its also one of the few races I don’t have to hop on an airplane to get to…lol. Having done this race 4 times already, it’s kinda like comfort food for me. I’m totally at ease with it. No pre-race stress, don’t have to arrive 3 hours early. I know every twist and turn in the course and I know that after I finish the race, I can be home in less than 20 minutes.
Another reason I want to do this race again, is to see if I still have what it takes. In 2007, I walked my fastest half marathon to date( 2:50 ). I’m not expecting anything close to that this time around, as my lungs are pure crap now, but it sure would help my psyche if I could even pull off a 3 hour half marathon just one more time.
On the downside though,the overall organization of the event has deteriorated over the years. The Expo is way out in the boonies now, and the post race food is a total joke. Considering the high registration fees, you’d think they could do a lot better.If it weren’t for the above reasons, Id probably skip this race . In my opinion,there are much better marathons out there for walkers.
If you decide to do this race, do it for the views and the hills, not for the royal treatment, unless you’re an elite runner.
Here’s a picture of me(in long pants no less), crossing the finish at my very first SF half marathon in 2005. The feeling of accomplishment for finishing that race was as intense as finishing my first Portland or even Boston race.
Next on my list, and only two weeks after the SF marathon, is the ET midnight marathon. Forget about PR’ing here,this one you do for the adventure.
I wanna do this one again, because last year I couldn’t fully appreciate how special an event it actually is. I was sick as a dog from dehydration and heat stroke. Not from doing the race, but rather from poor trip planning on my part, and from spending way too much time in the Las Vegas heat in the hours preceding the race. I shouldn’t have started the race at all the way I was feeling, but I had come all that way and I didn’t want to miss out. I finished the race, but it took me 4 full hours to do it and I damn near killed myself in the process. If there was anytime that I needed an IV for hydration, it was then. I was so dehydrated I was starting to get delirious. Judging from my symptoms, it’s a miracle I didn’t go into full blown shock.
But, despite all the bad things that were happening to my body, I still remember how incredibly beautiful and how eerily quite the desert was. There was a full moon that night, and the way the scenery was lit, it felt like we were walking up the side of a huge crater on the moon or something. It was very cool.
This race is like no other Ive ever done. Kudos to race organizer, Joyce, for putting this thing together. For starters there are only about 300-500 participants, and just getting to the starting line is a major feat ( a 3 hr bus ride from Las Vegas). One thing that stands out in my mind, is the sheer vastness of the open desert. The stillness and the sense of loneliness of being out in the middle of the desert in the middle of the night, is very surreal. You’re imagination runs wild!
Of course you’re not totally alone out there, occasionally a group of runners or a single car will pass you by, but in between those welcome distractions, it’s so quiet out there you could here a pin drop. You can actually hear yourself breathing! The other thing that I love about this event, is the special post race breakfast. Talk about UFOS, the post race food and activities are out of this world! Were talking a full country breakfast ,pretty much cooked to order in this really odd coffee shop//motel/UFO gift store, called the Lil’ale Inn located at the finish line in a town called Rachel, Nevada.
Here’s a photo of the actual course and the mountain range that you descend from. The finish line is near those buildings on the left.
This time around I plan to do a much better job of preparing myself physically for the special needs of the desert climate, so that I can enjoy the race and take in all the little things that I missed last year. I’ll also be driving out to the race site instead of taking the marathon bus. And new for this year, they’ve added a 51K race ! Get it? “Area 51″ “51K race”. OK you ultrathoners..
Here’s a picture of my friends and I finishing the race in 2008
The Nevada experience will be doubly exciting this year, because on the very same evening of the ET race, I also have a front row seat to see the Man at the Las Vegas Hilton. Getting out to the race site immediately after Barrys show is going to be an adventure in itself, but never fear….I have a plan. More about that in the future post.
Last but not least, though I haven’t decided the exact date or location, I want to do another one of Dave Mc Governs racewalking clinics. They are so much fun and worth every penny of the $175.00 fee. I haven’t done one for a couple years now and I could really use a good review and critique on my racewalking skills ( or lack of). He puts on a clinic for his advanced students in Southern California in October, which Id like to do, but I’m not sure yet, as the Portland, San Jose R&R, and Boston half marathons are all happening that month.
This past week my partner has been on vacation , which is the only time we really get to spend with each other. We really don’t venture too far from home , because he hates to to travel, so we’ll do a lot of things locally. One of his/our favorite things to do, is browse through vintage and alternative clothing stores. There are several scattered throughout the city. The Haight and upper Market street have some of the best. They’re basically high-end thrift stores that specialize in clothing and shoes from the 70′s ,80′s and 90′s ,as well as current fashions you’d find in European countries. Sometimes you can find really cool, one- of- a kind items. Another thing we like to do, is drive up along the coast , just above San Francisco ,stopping at different Antique stores along the way. We’ll usually make a whole day of it and then loop back down to the city where we’ll spend the late afternoon roaming the financial district or the waterfront. Nothing better on a cool spring evening, than grabbing a burger at Taylors Refresher on the Embarcadero and watching the people go by. When dusk approaches we’ll race over the hill to Ocean beach to watch the sunset. Yeah, it’s a tough job, but someones gotta do it!
I think this is the first time in 4 years, that Ive gone an entire month without working out or training for…. something. And you know what? I can’t say that I’m missing it all that much. Of course, I’m still doing my routine 5 mile walks 3 or 4 days a week, but I haven’t done any long distance walks or spent a single day in the gym since the Boston marathon. My metabolism has slowed so much in fact, that Ive actually gained 5 lbs.
Is this withdrawal from exercise a trend? Not really. It’s more of a self-imposed temporary disconnect from anything related to heavy “training”. The Boston and Rome marathon trips took a lot out of me, and that little side trip to Mass General didn’t help matters. My lung function hasn’t been that great lately and Ive also been having a lot muscle weakness and pain in both my legs and my arms, so I think I owe it to my body , to cool it for awhile. It’s almost summer anyways, and there’s nothing really happening on the race scene until late July. I’ll start gradually ramping back up in a week or so for the SF marathon.
With all this spare time, I finally got a chance to frame and mount some of my favorite race photos ,which have been sitting in a pile in my closet for the past 3 years. I’m slowly turning the guest bedroom into my personal trophy room. That’s right, if you stay at my house, you’ll be forced to look all my race memorabilia… lol
I sometimes jokingly claim that Ive inhaled more bronchodilators(asthma medicine), than any living person! Well, after doing some rough calculations , that claim might not be as far fetched as it sounds.
This past week I had a lot downtime due to crappy breathing , so I thought it might be a fun diversion to sit down and try to figure out how much Albuterol Ive inhaled over my life time.
For the sake of simplicity, and the fact that Albuterol ,has only been around about 25 years, I decided to include ALL the inhaled bronchodialator medicines that Ive taken. The results of course ,will be a rough estimate.
OK, assuming that Ive been using inhalers for appx 45 years , and assuming that I was taking just the minimum recommended dose of 1-2 puffs 4 x day. That works out to 131,400 hits off the inhalers.
The math ( 8 puffs per day x 365 days x 45 years= 131,400 puffs).
But wait , that’s just the beginning. Now, lets add in all the Albuterol Ive inhaled in the nebulized form and we’ll convert that number into the equivalent number of inhaler puffs.
For calculation purposes, I will use the generally accepted formula, of one unit dose of Albuterol solution, equaling 4 puffs of Albuterol from an inhaler taken with a spacer. ( without a spacer, it would be more like 8 puffs)
Since Ive been taking neb treatments 4 times per day on a regular basis for about 10 years, that would equate to a whopping 87,600 inhaler puffs!
The math. (1 neb treatment = 4 puffs albuterol x 6 times per day x 356 days x 10 years = 87,600 puffs!)
We’re not done yet…Lets not forget about all the continuous nebs Ive been on while hospitalized during those same 10 years. I’ll use a conservative figure of 2 hospitalizations per year and a figure of 72 hours of continuous nebs per hospitalization. I’ll also calculate the average dose of Albuterol at 10 mg/hr (very conservative, as I’m usually on 20mg or more per hours) We’ll also assume that we are using the standard 5% solution.
The math ( 10mg per hour of continuously nebulized albuterol, is the equivalent of taking 144 individual neb treatments in a 72 hour period. 144 neb treatments x twice a year = 288 neb treatments x 10 years = 2880 neb treatments.
2880 neb treatments is the equivalent of 11,520 puffs from an inhaler!)
So, we have, 131,400 + 87,600+ 11,520 for grand total of 230,520 or roughly a quarter of a million hits off an inhaler !
Just to put this into perspective, there are about 100 actuations or puffs in a single inhaler, which means Ive gone through the equivalent of 2300 inhalers.
2,300 inhalers divided by 50 years = 46 inhalers per year ( starting at the age of 4) That’s just a little less than one inhaler per week over the course of my entire life. That’s a lot of inhalers! It’s amazing I don’t glow in the dark or something.
This is my account of what actually happened at the end of the race; ( warning: this is another long post)
I think it started around mile 20 as we were descending into downtown Boston. The winds kinda whipped up out of nowhere and within a matter of minutes the temperature must have fallen 20 degrees…. I was freezing! It was then that I started to feel a noticeable change in my breathing . My lungs were getting progressively tighter anyway because it had been more than 6 hours since Id had a neb treatment, but now I was starting to audibly wheeze, which I rarely do, even when I do marathons. I remember I was also air-trapping pretty bad, so I had to purse-lip non-stop for the rest of the race to prevent it from getting worse.
We had now been walking non-stop for nearly 7 hours and as we approached the last mile, I remember telling Mike that my inhaler just wasn’t cutting it anymore and that I would definitely need a neb treatment once we finished the race. No problem I thought, since I had my portable neb machine in my belongings bag, which Mikes crew were holding for me in the finish area. I knew that I was probably in for a long night of bad breathing, but I figured once I got a good deep neb treatment into my lungs, that it would at least take the edge off enough ,where Id be able to enjoy some the post race activities.
30 minutes later at 4:31 pm, we finally crossed the finish line. For a few brief moments I was in heaven. I couldn’t believe what I (we) had just done. We had just finished a race that most runners only dream of…. We finished the Boston Marathon! I was very short of breath and wheezy , but I had finished the race in under the time limit and I was very proud of myself.
Well, not even 10 seconds had passed since we crossed the finish and I was still in a daze on cloud nine, when one of the medical people intercepts me and says ..” You don’t look so good…buddy!”. I told him that we were the two lung impaired guys who did the marathon and that it was pretty normal for me to flare-up a little after a race. ( Mike and I both looked pretty trashed from the race and both of us were huffing and puffing, so I’m not exactly sure why they singled me out as the one who needed medical attention.) So, anyway, this person put his arm around my shoulder and insists that I take a few moments to rest in the medical tent and get checked out by one of the Nurses. I tried again to reassure this guy that it was no big deal and that I would be fine. The guy just wouldn’t take no for an answer. He whispered in my ear ( I’m not sure why) ..” I’m an asthmatic too” ” just let us check you out to make sure everything is OK”. Finally, but reluctantly, I agreed to go to the medical tent to get checked out. By this time, I was starving. I had been awake for 12 hours, and had just walked 26.2 miles with only water and a little Gatorade. All I wanted to do… was eat and take a breathing treatment . He then walks me to the tent , leaving Mike to wait outside.
The Tent
The scene inside the tent was pretty disturbing. There were runners sprawled out on cots everywhere… some with IVs going! There were people vomiting, others moaning and growning…. some in ace bandages. It looked more like a MASH unit than a marathon medical tent. There was staff running all over the place , bumping into each other, shouting out medical stuff. They had Nurses, paramedics and even Firemen carrying people out on stretchers…It was really pretty gruesome.
The second I set foot there, they took down my personal info and then escorted me to a triage area where they took my vital signs, listened to my lungs and hooked me up to a couple of machines that measured my O2 sats and my exhaled CO2 levels. And that’s …..when the nightmare began!
All of a sudden the triage Nurse who’s taking my vitals, stands up and starts yelling for a doctor. (Apparently she was a little shocked at my numbers). My O2 sat was 85%, my Resp rate in the 30-40′s, My ETCO2 was 45 and I was wheezing up a storm. I tried to tell them , that this was just a minor flare-up, not a big deal, and that the numbers were not that bad for me and could I please just have a neb treatment and be on my way.
Well, from that point on, things just got worse. Before I knew it, a couple of big burly paramedics picked me up under the arms and put me in a wheel chair. They then wheeled me over to a section of tent that was set up like a mini emergency room. From there, they proceeded to CUT ( yes you read correctly…CUT) my shirt off. At this point, I had had enough of all this crazyness and told them, .PLEASE…. JUST LET ME GO..I”M OK! I’ll BE FINE!
Well, that only made things worse. “Let us help you!” they kept saying…. “Your very sick”. I told them again…it’s no big deal! I always wheeze! ” A few minutes later the head doctor comes over and says…. ” your numbers look terrible!”(meaning my vitals I think). And then she proceeds to ask me the dreaded intubation question….”Have you ever been intubated for your asthma? ” ( they always ask you that question if you appear too calm during an attack). I should have said no, but they would have eventually found out which would have made things worse in the long run. Reluctantly I shook my head …yes. Then, at about the same time as they’re trying to put an IV in me, one of the nurses sees the medical ID bracelet on my left wrist , turns to the doctor and starts shouting…. “He’s had multiple intubations!! “He’s had Multiple Intubations !” The doctor then asks ..”How many times have you been intubated?” and finally she asked.. “When was the last time you were intubated?”
Well, that little exchange pretty much sealed my fate.
While all this is going on, poor Mike, he didn’t have a clue what I got myself into . Finally , about 15 minutes into this ordeal, they agreed to let Mike come in to see me. As soon as he came in , they started asking him for my emergency contact phone numbers(mind you, I’m sitting right next to him, but they are convinced that I’m too short of breath to talk.) By this time, the exhaustion of the race was starting to catch up with me and all the drugs that they were shooting me up with, were actually making me feel worse.
The doctor comes back and tells me its too risky to release me, and that I need to go to the Hospital . I tried to refuse treatment, but before I knew it, they had loaded me into the ambulance and I was already in route to Mass general. I could hear the paramedics radioing in my condition to the hospital. The way they were describing my condition seemed to be much worse than the way I actually felt. It was like they were talking about another person and I was just there observing. Don’t get me wrong, the paramedics and doctors were awesome, I just don’t think my condition warranted a code 3 trip( lights and siren) to the ER.
The ER
So we arrive at Boston Mass General ER and they wheel me straight into a trauma resuscitation room, where once again, they proceed to try and cut off my clothes off! (What’s up with these scissor happy people?) I did not want my race shirt and Bib destroyed, so I grabbed the hand and told them to stop..”I’ll take my clothes off…thank you very much! “You don’t have to destroy them!”
It was like I was invisible or something. They didn’t listen to me at all. I think they assumed that because of my medical history ,that my symptoms were making me talk crazy. They were convinced that I would crash and burn.
It’s now been about an hour since this nightmare began , and I was pretty much resigned to the fact that they were not going to let me leave , so I basically gave up on trying to plea my case.
I figured Ok , your in an Emergency Room of a very busy hospital . No big deal, you’ve been though this a million times, don’t get overly stressed about it. Just let them do what they think is right.
During my 6 hours in the ER , I ended up getting 10 nebs treatments driven with Heliox ( why they just didn’t put me on a continuous neb, I don’t know), 2 epis, a couple bags of mag sulfate, 125mg Solumedrol and a short stint of Bipap, which I did not want. I hate BIPAP anyway, and for the short time I was on it, it made me feel worse.
I ended up ripping the mask off several times , which pissed off the Respiratory therapist. Obviously annoyed because I wouldn’t behave a like a good little asthmatic, the RT whispers to the ER resident ( right in front of me as if I wouldn’t hear her) …”Can you give him something for anxiety, he keeps taking the mask off” Duh.. of course I’m anxious. You would be too if couldn’t breath and someone was trying to suffocate you with a Bipap mask! She should have known that you never place a tight asthmatic on a Bipap machine unless you bleed in continuous Albuterol at the same time. The airflow from the Bipap can cause turbulence in the airway leading to even more bronchospasm. ( that’s the RT in me speaking)
After a few more hours of back to back neb treatments, I could feel the exacerbation starting to break. I was breathing a little better now and I figured the worse part of the attack was over….but of course it was too late. They had already loaded me up with a ton of IV steroids and I knew from experience , that they would probably admit me to the hospital. The only question was, would it be to the Intensive Care Unit or a regular hospital room. After pleading my case to the admitting doctors, they reluctantly agreed to my request to the lessor of the two evils. They would send me to a regular medical floor for now, but I would have to remain NPO ( nothing by mouth), and if my symptoms flare-ed up again, Id have to go to ICU. They told me that I could start eating tomorrow if my breathing improved.
I then had to wait another 2 hours for a bed to become available, as the hospital was full ( probably from other marathoners…lol). As I waited to be transferred to my room, I remember feeling so alone and so depressed. I felt like I had been robbed of the post race glory. I walked my ass off to finish this marathon, I never had a chance to get my medal….. and now I’m in prison and Im starving to death. Later that night after complaining about being so hungry, they started an IV , assuring me that this would provide all the nutrition I would need.
THE HOSPITAL
Try to put yourself in my position. Its 11 pm , 7 hours after I crossed the finish line of the most prestigious foot race in the world. I’m in a dark dingy hospital room . Nobody knows where I am at , except Mike. I’m hesitant to call my partner, my friends or my personal physicians, cuz I don’t want to hear the…I -told-you-so’s . What started out as the happiest day of my life has now turned into a freaking nightmare. I just completed the most incredible race ever, I’m hungry, I don’t feel well, I have no clothes with me except for my shorts and a thin shirt, I have a hotel room that I need to check out of and a flight to catch tomorrow. All I want is to eat, to get my medal and go back to my hotel and forget this ever happened. Yeah, I think this would tend to make anyone a little anxious.
The following morning a wonderful Social Service person by the name of Danielle, came into see me and helped me arrange my hotel check-out and the transport of my luggage over to the hospital. She also convinced American Airlines to waive the $150.00 change fee for my return flight back home. A little later that afternoon, I received a call from a Boston Globe reporter asking me if I ever got my medal. Word must have gotten out that I ended up in the hospital before receiving my medal, and this reporter wanted to know if that was true. He gave me some contact numbers for the BAA, which I had my Partner, Douglas follow -up on .
Within 2 hours, I had my medal. The BAA had it delivered it directly to my hospital room. Finally… things were looking up for me I thought. At least now, I would be returning home with my medal….(Thanks BAA )
Over the next 5 days ,my symptoms would wax and wane from mild to severe , and every morning when the interns , residents and attending physician would make their 5 second appearance, I would try to convince them that I was well enough to travel…only to be told ” No.. you’re not ready”. I tried to explain to them over and over again , that I was not your typical asthmatic and that I was breathing well enough to fly back to California, and that if I had any problems I would seek help at the other end when I arrived in San Francisco. They refused, telling me that not only would I be putting my own life at risk, but also those on the airplane if they had to divert in mid flight because of my asthma….Oh brother, make me feel guilty now. As a consolation though, they assured me that when the time was right, that I would be discharged in a manner that would coincide with a return flight of my earliest choice.
Finally, on the morning of Friday April 24th ( 4 days after I crossed the finish line) they gave in, and deemed that I was well enough to fly home. Their decision to discharge me seemed to be based solely on a single peak flow reading of 300 , that I blew for them that morning, but that was fine with me….. I just wanted to get out of there. So, they gave me approval to book my flight home. Great I thought , this nightmare is finally going to end…….WRONG.
I immediately called American Airlines to reschedule my return flight and thanked them for waiving the change fee that they had agreed to earlier. The only problem was, the only flights they had leaving that day would cost me an additional $450.00 ,bringing the total cost of this one-way ticket to over $1,000. No way was I going to pay this, so I went online to United Airlines ( who I usually use) and managed to get a one way ticket for a $120.00 ,departing early the next morning. By using some of my United frequent flier miles , I was also able to upgrade the ticket to First Class. So, I end up throwing away a $500.00 ticket on American Airlines, but at least I’m going home .
2 oclock that afternoon, a different, not so kind Social worker comes to my room and tells me that Ive been discharged from the Hospital and that I have to get out….pronto! What?? I was told, that I would not have to leave until just a few hours before my plane was scheduled to depart. I tried to explain the circumstances of the past 5 days, but she wouldn’t listen, or she wasn’t interested. I told her that earliest flight I could get was leaving at 6 am tomorrow morning and that, while I was feeling better, I was definitely too sick to be camping out an airport over night. She leaves and then 5 minutes later returns to my room and hands me a list soup Kitchens and Flop houses in the Boston area ! I said..” are you serious?” By this time of course, my blood is boiling and I’m demanding to see the physicians, the Nursing supervisor…anyone with authority. An hour goes by, when the head resident finally comes in and precedes to tell me that he (they), never guaranteed to discharge directly to the airport, but insisted that what he (they) actually meant, was that they would not discharge without a roof over my head. I told them ..” NO! that’s not what you told me” “You assured me I would be discharged at the time of my flight” . Since I wasn’t able to book a flight until you told me I could leave, how the hell did you expect me to get a flight out on just a couple hours notice”
Talk about using loose terms… The bottom line is they flat out LIED to me. They were in need of the bed and wanted me out of there.
Thank god I had a witness (s) to what they had originally told me. After arguing with the head resident for almost a half hour, I finally had him get on the phone where my partner read him the riot act. Doug had reminded him that he had received several calls from the other doctors, assuring us that I would be discharged directly to the airport at the time of my flight.
Anyway, long story short and without admitting that they had lied to me, they did a 360 , and agreed not to formally discharge me until 3 hours before my flight.
The following morning at 2am sharp, the night float came by and formally discharged me. After taking a shower and getting dressed, I was wheelchaired downstairs to the lobby and out the front door, where I caught a waiting cab to the airport.
8 hours later I was back in San Francisco. I loved Boston, but I was really glad to be home in familiar surroundings again.
Final thoughts
The physical stress of walking or running 26 miles , can do strange things to ones brain. It could very well have been that I was very sick and didn’t know it. In any event, I know that most of these people meant well and had my best interest at heart. They were obligated to take the actions that they did , but I understand my disease better than anyone, and after living with it for 54 years, I think I know when I require a lengthy hospital stay and when I don’t. Situations like this are very disruptive to my life and cause me a lot of unneeded stress.. not to mention the financial impact. I admit ….I’m the odd one, not them. I’m not your typical asthmatic who plays by the rules. In fact, I’m probably the most unusual asthmatic that most medical people will ever encounter.
Id like to thank the following people who helped me during this unfortunate turn of events:
The Boston Marathon medical volunteers Though I think it was a bit much….Thanks for taking care of me! Chuck Our spotter during the race. He called me in the hospital to see how I was doing. He also took the time to send my Boston Jacket back to California. Dani , the social worker who I leaned on constantly and who helped me get through this ordeal. Veronica, one of the night shift Nurses , who took great care of me during the longgggg nights in the hospital. Dennis Gaudet , Respiratory Therapist ( yup same last name as mine) who took the time to come and see me and made sure I was well looked after. Thanks Dennis! A person at the BAA ( sorry I don’t know your name) who had my medal sent directly to my Hospital room. Thank You! Mike
I can’t think of a better person to share this crazy marathon experience with. Thanks Mike!
Last , but not least, to my partner Douglas, who is always my strongest advocate when I’m hospitalized and always makes sure that I’m well taken care of.
Just a quick thank you to Rick of the Respiratory Therapy Cave for the nice article he wrote about me in his column over at Myasthmacentral.com entitled ” Hardluck Asthmatic”
Rick and I have a lot in common, in that we are both Respiratory Therapists and both of us have asthma. Fortunately, Rick has managed to keep his asthma under control and is able to work full time. Rick lives in the mid west and writes about what it’s like to work as an RT in a small community Hospital. Good stuff.
OK, so I didn’t PR. Actually, I set a new PW ( a personal worst) time of 7:31 . But hey, I made it to the TOP FINISHERS list..lol
Before I get into the details of the trip, first of all let me just say what an incredible experience this has been for me (and Im sure for the other 25,000 runners). All the hype that you hear about the Boston marathon is absolutely true. There is simply no other marathon like it on the planet. This was absolutely the best marathon experience Ive ever had! It’s the runners themselves, along with the fans and the people of the Boston area that make this event so special. It’s difficult to put into words the emotions you experience when you have a half million people rooting you on mile after mile, every step of the way… and I do mean EVERY STEP! From start to finish, the fans were there!
Hard to sum up this marathon experience in one word, but if I had to, I’d choose the word… ” Overwhelming” , cuz thats what it was. Now I know why people want to do Boston. The encouragement and support from fellow runners and the fans is overwhelming. My shoulder was tapped on so many times by passing runners telling me how awesome I was, that it was sore by the end of the race. My voice actually became horse from thanking literally thousands of fans along the course who took the time to acknowledge my presence in the race, and I felt like I was going deaf from 7.5 hours of non -stop cheering.
I trained very hard for this race and for the most part , I think it paid off. If I would have pushed myself harder, I could have perhaps finished in under 7 hours, but frankly I was enjoying myself too much to shoot for a silly 7 hours PR. After 6.5 hours, who really cares…right? As far as the hospital thing, well that was just a fluke. The medical people had never encountered an athlete like me and got a little freaked out by my numbers and my medical history. But, at least you know by my experience, that if you ever need medical attention at this marathon , you’ll certainly get it ….. and then sum . lol
I left San Francisco early Friday morning with a scheduled stop-over in Denver. I had lucked out an got an upgrade to First class on United. Wow..what a difference to fly first class. FREE FOOD ! Anyways, As my plane landed in Denver, Mike called me up and we all met up at one of the airport coffee shops. Mike lives in Denver, and because it had begun to snow, his flight was delayed . This worked out great for both of us , because I had a few hours to kill before my next flight left as well. By 1 pm , we both got on our connecting flights. And though we were on different carriers, we both touched down in Boston within minutes of each other. From the airport I called the hotel and they sent a bus out to fetch me. I arrived at the Hyatt Harborside at sunset.
This is the view I encountered when I entered my hotel room.
My jaw dropped…. I spend at least 2 hours sitting on the rocks at waterfront, taking it all in.
Saturday morning I caught the water taxi from the dock at the hotel, and in 7 minutes I was in downtown Boston. From the there I caught the “T” subway train heading to the Expo. Boston has a fantastic public transport system ( too bad California can’t learn from them) Even though I was staying on the other side of the river, total trip time from my Hotel to the Expo was only about 30 minute. I spent most of the morning and part of the afternoon at the Expo. I collected my Bib and goodie bag .There was so much to see and do. While waiting in line for the registration office to open, I met up with two young ladies from Modena Italy. When they saw that I could speak Italian, we became instant friends. Turns out that they had both done the Rome marathon . After picking up my Bib, I headed over to this little mini theater they had set up where they were doing a virtual video tour of the course. I watched that thing from start to Finish. OMG…. just watching the video was giving me second thoughts about doing this race.
As promised, friend and fellow running bloggerFrancis called me up and we hooked up out in front of the Expo center. Francis qualifying time for this race was something like 3:10. He’s worked so hard over the past 2 years to get to Boston, I was really happy for him. Francis had heard that Ryan Hall was signing autographs , so we went back inside and got in a line that seemed to wrap around the entire Expo floor. Hall was only signing autographs until noon and the line was so long, I thought for sure we wouldn’t make it. But, after an hour of inching our way forward , we made it to the front got out posters signed! This may sound crazy, but I didn’t really know who Ryan Hall was until I read about him later that evening. I know Francis was a huge fan, so Im happy he got to meet him.
In addition to seeing Ryan , I also got to talk to and meet with the Hoyts . These guys are amazing .
By 2 pm the Expo was so crowed, I was getting claustrophobic and decided I’d had enough . From the Expo I set off on foot do some sightseeing in the area. I wish I had spend more time checking out downtown Boston. There’s so much to see. Next time I will for sure.
Here are some pictures taken in and around the Expo as well as the Downtown Boston area.
Sunday at 5 am, Mike , myself and his crew all met in front of the Hotel for the drive out to Hopkinton ( the town the race actually starts in). The Oxygen company that was helping sponsor Mike for this marathon, actually flew a couple of there people out to Boston and provided us with a cozy van that took us out to the starting village. The ride from Boston to Hopkinton only took about 60 minutes, compared to 2 hours it would have taken on the jammed packed buses that were hauling most of the runners.
We arrived in Hopkinton at about 7 am and were allowed to hangout at a special gym across the street from the starting Village where all the wheelchair athletes were warming up. They provided us with foam pads to lay on and free hot and cold beverages to hydrate. After Mike put the finishing touches on his O2 cart, we wandered outside to watch all the pre-race stuff.
There were tons of Satellite TV trucks and News Vans parked out front. We were interviewed by several News organization ,but I cant really remember which ones ( it was all happening so fast.) I remember speaking with a couple Boston Globe Reporters , but there were others. Everyone was waving microphones and cameras in our faces, trying to find out what our story was.
As our starting time was growing closer, I was starting to get a little concerned about the weather. I had heard forecasts that were calling for a slight chance of rain in the late afternoon, but that it would be light. My biggest weather concern was the temperature. When we arrived in Hopkinton it was a freezing 33 degrees and foggy. I was debating whether or not I should wear a jacket during the race. Luckily, just minutes before the race started, the temperature had already risen to 47 degrees and the fog was starting to lift.
Here’s some pictures of the starting area:
About 30 minutes before the start we met up with our spotter and guide, Chuck. All I can say is ..thank god for Chuck! This guy had the tedious job of tailing us on his bike for 7.5 hours. Chuck was there to monitor us and be there in case we had any medical issues or if Mike had any equipment problems. I can’t tell you how reassuring it was to have someone right there on the course, encouraging you, assisting you , and making sure you had everything you needed.
One of the coolest things about having Chuck along, was that if I had to use the bathroom ( which happens a lot) I would let Chuck know ,and he would ride out ahead of us and scout out toilet locations.Then he would reserve a spot so that I wouldn’t have to wait in line when I got there. Now, thats what I call the Royal treatment!
Unbelievably , Mike did not one stop one single time to use a john. How he did it , I’ll never know .
At 5 minutes to 9 they had all the MI ( mobility impaired ) athletes line up at the starting line. I think there were a total of 18 of us.
At that time, they had us walk back and forth across the timing mats to make sure our chips were registering. After that, Dave McGillivray, Race Director of the B.A.A. shook our hands and then simply said……..READY, GET SET….GO! And so began our 7 and a half hour journey !
For the first mile or so, there were only 18 of us on the course. And except for the helicopters flying above us and the camera trucks in front of us, it was eerily quiet. There were only a handful of spectators, mostly people sitting in their front lawns. I thought to myself…this isnt so bad. Where are all the fans? I quickly got ahead of Mike , in fact , except for 2 runners, I was head of all of them. The problem was, that in order for me to maintain that lead, I would have to continue to jog , which my lungs were not liking. Looking back behind me, I could see that Mike was starting to settle in a comfortable, but slow pace of about 17/min.
As we crested the top of the first hill ( mile 2) , you could hear the faint cheers of spectators carrying on, but as we descended and rounded the first bend…Whamm! All of a sudden it was like we were the featured guests at a home coming festival. Both sides of the narrow 2 lane road were lined with screaming spectators for as far as the eye could see. I have never witnessed anything like this in my life. There was the men and women of the National Guard posted at ever corner, waving us on. There were tons children’s group, special organizations and just regular people, high fiving us, wishing us well, trying to shake our hands. Offering us food..you name it. The adulation was overwhelming and non-stop. At one point the fans got so aggressive trying to touch us, that our spotter and the motorcycle cops moved us to the center of street where we remained throughout the rest of the race.
About every 30 minutes or so, another wave of runners would pass us by. We would pull over the side of the road and let them pass. First it was the wheel chairs, then the Womens Elite and then the Mens Elite.
Here’s a pic that Mikes partner Cameron , captured as the Hoyts streaked by us:
About 3 hours into the race, The 25,000 other regular runners caught up with us and from then on it was pure pandemonium. It was like a huge rolling block party/running parade. It was as if everyone was high from the experience. People seemed less concerned about running fast and more concerned about having a good time.
Never had I experienced just comradery among runners in a single race. We were cheered on as much by our fellow runners as we were by the fans.
The course traverses through 8 small towns, but it seems like a lot more than that. Just Imagine that every time you would enter a new town, there would be another huge celebration going on, and that you were the subject of that celebration! That’s what it was like.
Here are some photos that either I took with my phone along the way, or that Mikes Pit crew took while they were waiting for us to pass certain areas so that they could change out Mikes tanks.
As promised, Heartbreak hill was brutal. Not exactly the way I had pictured it in my head, but nevertheless a tough climb. For some reason I had pictured this portion of the course as a steep climb up a narrow baron road. It wasn’t like that at all. It’s actually a series hills along a wide tree lined beautiful section of road, which gradually ascends it’s way up through what appeared to be very affluent neighborhood. It was at this point though , where you could see people pooping out. Some were literally falling down , and the people that remained upright were walking…not running!
This pic was taking at the crest of the final hill. You see me and mike at the 21 mile marker. From here on it was all downhill.
I think I faired better than most, because I live and train in a very hilly city. It’s not so much the steep steep steady climb of those last few hills, it’s their position along the course that makes them so tough. They occurred at appx miles 18-19-20 , not exactly the best place to have hills in a race, but I guess that’s what makes this marathon so challenging.
From here the last 5 miles are mostly downhill and I could have easily shaved 20 minutes from my time by jogging, but I decided that I would stay in pace with Mike and finish with him.
By mile 22 , I could feel my calf and thigh muscles starting to cramp and I was also getting nauseated. For the next few miles I would run out ahead of Mike , so that I could stretch out my legs against a tree or curb to prevent an all out cramp and look for a private place to puke if I needed to, then I would catch up with him. I would repeat this scenario every half mile for the remainder of the race.
Mile 23, the city of Boston was finally in site and you could actually see the finish area. It was at this point I knew I would finish the race within the time limit. The problem now, was that weather had gone from a pleasant 53 degrees to about 40 degrees in a matter of moments. In addition, the wind was picking up ,making it feel even colder. For the last 3 miles, I thought I was going to freeze to death. To make things worse, the constant headwind was aggravating my lungs, making me wheeze. By mile 25 , I was definitely feeling like I had done a marathon.
At mile 26, we made the first actual turn of the course where you head into the finish plaza. At this point our spotter, Chuck was not allowed to follow us anymore and we made arrangements to meet up in the VIP tent on the other side of the finish line.
As we entered the final 1/4 mile stretch to the finish line, it was starting to get dark outside and I could tell that we were probably going to be the last 2 people to finish the race. But, believe it or not, even at this late hour, there were huge crowds of people lining the streets that waited to see us finish.
Then in the last 100 yards or so, my emotions hit me like a tons of bricks. It finally dawned on me of what I had just accomplished. In the span of just 3 years, I had gone from an old out-of -shape COPDer who could barely walk a city block, and who was basically written off by the medical establishment, to achieving what many people said was silly, crazy and impossible. I was about to finish the Boston marathon!
As I set foot on the finish mat, I couldn’t control it any longer….. and the tears just gushed out. (I hope no one saw.)
I did it ! Me…..I did it !
I will deliberately end the story here , because I don’t want the wonderful memory of this most extraordinary experience to be tainted by what followed shortly after crossing the finish line. Instead, I will write a separate post regarding my little stint at Boston General.
For now I want to congratulate my partner in Crime, Mike Mc Bride on his incredible endurance and will power in this race. He is still an inspiration to me and was by far , one of the favorites of the fans that lined the course.
Let me end by saying, that I’m grateful for being given an opportunity to take part in this race. It was truely a dream come true and an experience I will never forget. I hope that other people with lung disease , will see by my example, that anything is possible if you try hard enough.
And Finally, to the BAA, the people of Boston , the nearby communities and to all the fans and runners who made us feel special.
Thanks from the bottom of my heart!
Sorry about the delay on the race report, but Ive basically been in a vacuum for the past 5 days and am now just getting caught up on what on what the heck transpired while I was in lock up. Give me a few days to catch my breath and get that report up.
I was released from the Boston Mass General Hospital on Saturday morning and arrived back in California on Saturday afternoon. My experience with this Hospital was not a good one and you can bet that I will be writing all about it when I’m feeling better. For the time being, I’m still very short of breath and totally roided out ( lung lingo meaning …strung out on prednisone) . My only priority now, is to avoid a re-lapse and a re-admission. If I can get through the next couple of days …..I’ll be good to go!
I want to thank everyone for your support and words of encouragement. I can’t tell you how much it means to me. The response to the Boston adventure has been overwhelming, but I promise I will answer all your emails.
Oh..Almost forgot to mention…..Just hours before the Boston Globe reported that I hadn’t received my medal, I actually had. The BAA had couriered it over to the Hospital Tuesday evening before the Boston Globe article was published. Thank You BAA !!
Earlier this afternoon Mike Mc Bride and I crossed the finish line at the Boston marathon , making us the first registered runners with documented severe lung disease, ever to do so!
Unfortunately, I started to flare-up pretty bad during the last two miles of the race and within 5 minutes of crossing the finish line, was whisked away to the hospital where I’m supposedly in serious , but condition. This post was sent out courtesy of the wonderful Social Services personnel at Boston Mass General hospital. I ‘ll write a complete race report in about a week when I return to California, but let me just say this..The Boston marathon experience is everything people claim it is….and more!!
I don’t want to jinx myself , so I’ll try to keep this post short and to the point. Today makes 6 full months that Ive been hospital free!
May not sound like a big deal to some, but believe me, for me…it is! By comparison, last year I was hospitalized 5 times, (or appx once every 2.5 months) …a record even for me. The year before that wasn’t much better at 4 admissions.
Even during a so called “good breathing” year, I usually end up in the pokey at least once or twice, so wouldn’t it be something if I could go an entire year with NO ADMISSIONS!!! Oh my god…..UCSFs Respiratory Dept would go out of business.
I really don’t know what to attribute this success to. My disease hasn’t gotten any better, on the contrary…my PFTs are actually worse, but I think I’m getting a little better at quashing the minor flare-ups before they turn into big ones. It could also be that I’m doing a better of job of avoiding some of the environmental triggers , which probably aggravate my symptoms. A few months ago I totally re-did my sleeping space. I now keep that area of the house pet free, dust free and I think for the most part, allergen free . I even have one of those Ionic breeze things to filter the air.
Even more than just reducing my exposure to certain triggers, I think it’s the methods I use to cope with my disease that have changed. Subconsciously I think Ive raised the bar as to what I consider to be a ” hospital worthy” exacerbation. Severe breathing flare-ups that would have landed me in the ER just a year ago, Ive now somehow managed to tough out at home without all the hospital intervention and drama. Probably not the smartest thing to do for a high risk asthmatic, but I suppose its a way for me to maintain some kind of control over my own life.
Whatever the reason, I’m certainly grateful for the reprieve. One less day spent in the hospital, is one more day I can spend living like a normal person….whatever the heck that is.
