Had a follow up appt with my pulmonologist, Dr. Lazarus yesterday. Among other things, we were talking about why my asthma is so bad. I jokingly blurred out…. it’s was because I was a victim of the 1970’s asthma mentality, where they were into over-treatment and under-treatment, but never prevention. It was a time in asthma history where patients were treated with toxic amounts of certain drugs . I told him about this quack doctor I saw a few times in the early 80’s , who used to overdose me on aminophylline injections. Aminophylline is basically a powerful stimulant that works as a bronchodialator, but is usually given slowly through an IV or in pill form. It was a popular asthma medication in the 60s, 70’s and 80’s and still is in the UK .
Anyways, at the end of my appt, Dr Lazarus tells me to check out this clip from the late 1970’s he found on Youtube called ” Aminophylline”. He wouldn’t tell me what it was about, but just that I should watch it when I get a chance.
So I get home, I look up the video on Youtube and watch it. Imagine having you asthma cured with a simple injection. But wait !.. theres more to this story. Try to watch the entire clip if you can.
Despite all the difficult times, I’m very lucky to call this place my home. Close enough to the city center , so we never get bored, but far enough away, so we can to enjoy the quiet.
My great great grandfather was one of the first pioneers here, arriving in San Francisco from Ireland in 1848. He made his fortune by selling goods and real estate during and after the gold rush.
Yesterday , Douglas and I hung out at some of our favorite spots. The steroid taper is going well.
Ive resisted this for a long time, but I suppose it had to happen eventually……I now have oxygen in my home. ( Just the sight of these little green cylinders bums me out). Hopefully, after I recover from this current bout, they will stay hidden in the closet , never to see the light of day again. The good news is that my O2 sats are near normal again when I exert myself. Ive only been desaturating to the low 90’s, compared to the low 70’s just a week ago.
Having O2 available in my home, was one of the conditions of my release from prison last week. They weren’t going to discharge me unless I agreed to it. I’m only going to use it during flare-ups, but some of my doctors think that because my asthma is so severe, that I should be on it all the time. Apria ( the O2 company) even tried to set me up with a concentrator ( a machine that makes oxygen), but I refused to take delivery. I was able to get the order changed to just small cylinders.
Asthma is not emphysema…my diffusion studies are near normal. Just because a person has severe asthma, doesn’t mean that they require supplemental oxygen. For the most part, my O2 saturations are very good when I’m feeling well. I only desaturate during exacerbations or too much exercise.
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.
The events of the next 7 days are for hardcore lungers only, so if you’re squeamish about these kind things , don’t read on.
We’ll start the gore fest with a little footage I took in the while 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 maintains a certain pressure. The Bipap wasn’t cutting it though, and 8 hours later I ended up on a Ventilator.
96 hours later, I looked like this…In total, I found 36 holes in my arms legs and neck.
While in the ER I was given the usual, continuous Albuterol nebs at 20 mg/hr with the Bipap set at 10/5. 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 even worse. My oxygen saturation was good , but my CO2 was climbing. After a 6 hour stint in the ER, I was assessed by the ICU medical team and promptly transferred to the new 13th floor medical ICU , where they continued the Bipap. 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 ventilated many times, but never before was I wake when it was happening. For the first time in a long time, I thought I was actually going to die. I remember them saying ” you need to relax” ..and I can remember thinking..” you guys are going to kill me” … ” I can’t breath” . I thought something was wrong with the ventilator, but it turns out that it was my lungs that were all messed up.
My response to treatment thus far, seemed to be making for a lot of the doctors nervous. There was pandemonium in the room. Doctors rushing in and out. Nurses trying frantically to calm me down so that I wouldn’t self extubate. They finally gave a me a pen and paper on a clip board 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 just like in the movies when they show someone hurdling down a long dark tunnel and then they suddenly 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 where I experienced a form of temporary blindness. Every time I would open my eyes, all I could see was a bright blinding light. I could make out silhouettes , but I couldn’t see people faces. It was really weird. They got worried about this new development and immediately called in an eye doctor to check me out. He couldn’t find anything obvious on his exam. He said it might have had something to do with pressure on the optic nerve , but it went away.
So why on earth was I not sedated and kept asleep to begin with? Well, it turns out that I may have had a rare , but potentially serious reaction to the drug that they normally use to keep intubated patients asleep. The drug is called Propofol and it’s probably the #1 mostly used anesthetic in the world. It’s a wonderful drug, because you can basically turn on or off someone conscienceness like you’re turning on a light switch. It works super fast. It’s routinely used to keep intubated patients asleep, so that they don’t fight the ventilator like I was. When you want them to wake up, you simply stop the infusion. You wake up instantly. Works great when you want to wean someone off a ventilator. Though Ive been on this drug many times over the years, for some reason, my body wasn’t liking it this time and I began developing a lactic acidosis ( where your blood gets really acidic due to muscle breakdown.) My CKs and lactate levels were also getting really high. After ruling everything else out ( including too much albuterol , which can cause a similar problem), they concluded that it must had been the Propofol and immediately stopped the infusion. As an alternative ,they had to use a drug called Verced to sedate me. A nice drug for relaxing you , but not really designed to keep someone under for long periods.
Here are a few pics my partner took of me gorked out on the vent. There’s a good shot of the ventilator settings for you RTs out there. ( One of my ex co-worker/ RT friends, saw the pics on Facebook and noticed that the vent was in the weaning mode)
Finally after 2 days of pure hell, the decision was made that it was probably better to take me off the ventilator and let me breath on my own, rather than risk me blowing out a lung because of all the fighting I was doing on the ventilator. ( As an RT, I’m just guessing that’s what they were thinking..I don’t know for sure).
Day 4, I’m now off the ventilator breathing pretty well and my blood gases have returned to normal. As the day progresses I start to get this strong urge to use the bathroom. I already had a catheter in me to handle number 1, but now, I had to go number two! After not going for 4 days I guess it was no big surprise that I would eventually have to go, but I wasn’t prepared for for what was about to happen.
Unfortunately, UCSFs new 13th floor ICU doesn’t have toilets in the patient rooms, so for the first time in more than 20 years I had to use a bedpan! But, if that wasn’t bad enough, I had the worse case of diarrhea and cramps you can imagine. I don’t think it bothered the Nurses, but it sure bothered me. I was hating life! For the next 2 1/2 days, my lower gut was in knots and the nausea and cramps that followed were unrelenting. They eventually set me up with a bedside commode ( basically a toilet on wheels), but with all the wires and tubes that were attached to my body, it took at 2 nurses and a physical therapist to get me from the bed to the commode. And guess what? Someone has to empty the commode. How embarrassing. On that first day , I went 5 times, on the 2nd day , 4 times ! ( You have to remember, I hadn’t eaten anything in the previous 5 days, so where this was all coming from I don’t know). Apparently , on top of all the other drug reactions, I was now having a reaction to all the antibiotics and all the other drugs they were pumping into me. To be on the safe side, they decided to put me in isolation for C-diff precautions.
By Friday afternoon the stomach cramps were diminishing in intensity and my breathing was much better, so they transferred me out of the unit to a private room ( thanks to my isolation order) in the step-down unit ….with a private toilet…YEAHH . My C-Diff test eventually came back negative.
Things were looking up. The only problem I had to address before going home , were my swollen ankles and my oxygenation level. Because I had no IV access in my arms, earlier in my stay they had to place multiple IVs in my feet. Normally this wouldn’t have been a big deal, (Ive had IVs in my feet before) , but this time because of all the fluids I received, somehow the vein in my foot must have blown , so some of the fluids that were supposed to go in my veins actually ended up in the tissue surrounding my right ankle. As a result , this caused my foot to arch downward ( what they call foot drop).
When I was finally strong enough to get out of bed, just standing up was painful because it forced my feet to flex back to the normal position. For the next 2 days, I did multiple short walks , and when I was in bed, I propped my feet up with pillows and iced my ankles which really helped a lot.
The very last challenge I had to meet before being discharged home, was being able to walk without desaturating. On my first attempt at walking down the hallway, my sat went from 95 to 79% in 2 minutes. After doing several more walks I was only desating down to 85%, but this was not acceptable to them. After a lot of coaxing and a threat of not being discharged, I agreed to go home on Oxygen until I got better. On Sunday afternoon at 2pm, almost 7 days to the minute, my 94th sentence was commuted and I was released on good behavior.
This was a tough one, but I’m thankful I survived more or less in tack. I have a lot of hard times ahead of me,because the hardest part of this exacerbation actually begins now. For the next two weeks I’ll be fighting off the prednisone withdrawal symptoms and trying to regain some of my strength. Months of fitness conditioning and endurance building were wiped out in just a single week in the hospital. Then again…. all that conditioning is probably the reason I’m still around to blog about it.
I’d like to thank the following people for putting up with my shit (literally) and for treating me like a human being instead of a medical oddity.
Dr. Erika Moseson, Dr. Daniels, and all the other interns and residents who helped save my life…..again
Also to ICU nurse James, and TCU Nurse Jen O.
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 these fun things.
Most days start out pretty good with my best breathing occurring during the morning hours , but that effect 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.
If I’m able to sleep at all, it’s usually for no more than 4 hours, and then I wake up gasping for air. By the time I finish a breathing treatment, I’m unable to fall back asleep and will lay in bed wide awake until the sun rises. By 6 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 relief the pain. Finally by 7 am 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 6 hour window of decent breathing, in which to walk or get my daily exercise 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 guy with really bad asthma, dealing with it the best I can.
