After my 3rd PCP visit and kenalog shot, I got a call in to my pulmonologist’s office about an acute visit. Unfortunately my rock-star lung doc is on some much needed vacation and fortunately I was able to see one of the NPs this morning. They aren’t sure exactly what’s going on, but I’m at least being taken seriously. After I finish the ER Z-pack, I’m starting 10 days of Levaquin, and my prednisone taper is being extended and lowered by smaller increments. Next week they’re going to monitor my oxygen saturation at night to make sure the CPAP is working properly. I think I have enough prednisone now to start my own pharmacy. I’m just hoping I can continue to get at least a tiny amount of sleep.
On my outing today:
Had to stand in line for check-in at lung doc while the receptionist gossiped on the phone and kept another old woman with oxygen tank waiting
Another old woman, with oxygen tank, cut in line while I was waiting to check in
Some maniac in a Cadillac slammed into a Suburban while crossing 2 lanes coming within feet of my car and hitting another car in the hospital parking lot
I got lots of stares at Taco Bell while getting some tacos for lunch
I had to stand in line at CVS for about 20 min
A woman cut in front of me to buy M&Ms cause they’re more important than my prednisone
Some other dude tried to cut in front of me just because
I thought I wasn’t going to be able to walk out of CVS without sitting down for five minutes
I’ve had a rough morning and I still hate The Eagles. Four puffs of maxair, a double abuterol nebulizer and an hour of sitting have helped a lot. I think it’s time to start a movie.
So I had been slightly over-impressed with myself for making it through this March without any major pulmonary incident. The Ides of March slipped past with no hemoptysis, and I seemed to be well on my way into the summer of “the worst allergy season ever” without many of the symptoms I keep reading about on Facebook. I saw my pulmonologist at the beginning of May and things seemed ok. My lung function was slightly down from last time, but I seemed to be holding my own…and then it started. The flare up that that required me to inhale 61 nebulizer treatments last month, and take two unsuccessful rounds of prednisone.
I think Rick James says it best – Prednisone is a hell of a drug.
My first course of steroids was five days at 50mg. That kind of quick punch can usually get me back on track if I’m not too bad. I started feeling better, but went downhill immediately after. Round two started as a 15 day taper which got me feeling better on day two only to start getting worse on day three. Day four ended with a coughing fit on the floor after unsuccessfully attempting to get up off the couch and walk 20 feet after Game of Thrones.
My ever-awesome wife got me over to the preferred hospital in town post haste. They saw me coming and greeted me with a wheelchair at the check-in counter to immediately get an IV started for salumedrol. I have to laugh sometimes when I hear people complaining about emergency room visits and waiting hours for treatment. Whenever I show up, I get the platinum club treatment. Liz says they had people hovering over me like the time I had pneumonia, the big difference being my oxygen saturation stabilized without too much effort. I was able to leave after not too many hours, avoided a hospital stay and celebrated with Taco Bell. My prednisone taper was replaced with a much stronger dose and started some anti-biotics.
Yesterday I started feeling much worse again after all those IV steroids wore off, but was able to keep things under control with the nebulizer. This morning I followed up with my PCP and the nurse told me I look like shit. That was followed with, “will you slide your shorts down please,” and a shot of Kenalog into my posterior. That empowered me to get a lot of work done at home today, but I’m sure I still come off as a crazy person who hasn’t slept for days.
My pulmonologist is out of town, but I have an appointment with his NP later this week. A buddy of mine asked if I’ve ever thought about getting totally checked out at one of the big pulmonology centers in the country and that’s actually not a bad idea. Fortunately I really like my lung doc here, he was totally in my corner before we moved and still is now that we’ve moved back. It often seems like there’s still something not yet diagnosed with all the problems I have. It’s been a couple years since I really pushed for some answers, I think there are still more out there.
My efforts to post daily have been thwarted by another asthma flare up. Fortunately I’ve stayed out of the hospital so far this calendar year, but there were a couple times in the past weeks that I should have visited the ER. I’m currently on my second round of prednisone and feel like I’m riding the Crazy Train. The good news is I’m actually starting to feel better and I’m lucky enough to have a job that allows me to do work from home. If you’re also suffering from asthma right now, here are some tips to get better more quickly.
Rest – it can be hard to just do nothing, but sometimes that’s what you need to do. It’s not always possible to stay home from work or have someone else take care of things, but try to at least slow down.
Lots of fluids – water is important by itself, but can really help make a difference for asthmatics.
Avoid irritants and allergens – try staying in doors and limit outdoor activities.
Seek medical attention if necessary – when my oxygen saturation gets low, I acquire something called “asthma brain.” I can’t seem to think clearly and make poor decisions. Make sure there’s someone around to check up on you and don’t be a hero. See the doctor if necessary.
I’m hoping to make a full recovery soon because I have a film festival to attend in July. The Dude abides.
I’ve watched nine seasons of A&E’s Emmy award winning show Intervention. I know I’m no expert, but I’ve learned a lot about controlled substances and how you’re supposed to interact with addicts. If I were to personify my lung disease and participate in an intervention for its downward spiraling life choices, the first episode that comes to mind is Allison** who huffed compressed air.
I’M WALKING ON SUNSHINE!
I’m here today because I love you and care about you. The happiest day of my life was when my doctor diagnosed me with lung disease and prescribed some inhalers. I felt almost instant relief and had an excuse to why I constantly felt like crap and why people thought I was always in a bad mood. You gave me an immense amount of trouble all through high school, but we made amends and had a good run during college. Seven years ago your bad choices came back and started severely limiting my quality of life. This is why I want you to accept this wonderful gift we have to offer you today.
Asthma, your addiction has affected me in the following ways:
Every time I make fun of someone on TV or in a movie who is only bench pressing 95-115lbs, you remind me I haven’t been to the gym in a year.
If I laugh too hard at something hilarious, you give me a coughing fit. Stoicism is harder than it looks.
I used to love blowing stuff up. Remember that one winter we buried all those firecrackers in snowbanks and watched them soar? You’ve made me so reactive to any smoke I can’t even attend a bonfire or stand next to a cookout most days.
You ruin vacations and holidays. Last year you made me so sick at a film festival they gave me an award for hardest traveled.
I spend 25% of my net pay on you for doctors, treatments and prescription drugs. That doesn’t even account for all the Mt Dew and Dr Pepper.
I carry a bag full of medicine everywhere I go and my friends call it a man-purse behind my back.
At night you give me sharp pains in my left lung and make it hard to breathe. I often stay up all night watching Netflix. You had my sleep patterns so messed up in 2010, I completed a 28 movie marathon in less than two days.
And I’m not even able to regularly post on my blog every week!
What happened Asthma? You used to be cool. Yeah you held me back a bit, but the medicine always kept me going. I care about you, Asthma. This is why we’re providing you an opportunity to…
Asthma bolts for the door while the moderator sends the film crew to chase it into the hotel parking lot. We should have seen this coming.
**Cause we all know Asthma would mimic the Mad Hatter
I was co-teaching a seminar the other day in a disgustingly dirty room. It’s supposed to be the crown jewel of the business college, but I was almost afraid to touch anything. The allergies and asthma almost immediately revved up and I knew the day might be a long one. Later in the morning I took a puff off an inhaler from the back of the room and heard one of the attendees say, “…you have asthma?” “Oh great,” I thought and braced myself for some friendly advice.
Lady: Do you have it bad?
Me: Somewhat bad
Lady: I have some breathing problems. I technically don’t have asthma, but my allergies are bad enough it’s as if I do. Do you have allergies as well?
Me: Yeah, pollen’s already getting bad this year.
Lady: So do you take medicine regularly?
Me: Yeah, I’m on 13 medications (waiting for that advice on how to be instantly healed)
Lady: I’m on a bunch of stuff too. I had to have most of a lung removed…
Me: Oh wow! (my eyes probably got big here)
Lady:..there was a tumor and stuff. Anyway, I feel fine most of the time but my kids always let me know when I’m working too hard.
Me: I know exactly what you mean.
Well that conversation went in an entirely different direction than I thought it would. Sometimes my thinking is a bit too uptight when it comes to chats about my health. I felt as though I met a kindred spirit that day. Someone else with a bad lung who sits in the back row during presentations.
I had the pleasure of performing a pulmonary function test (PFT), chilling with my lung doc and getting chest x-rays Wednesday. A PFT can feel like running a marathon while sitting in a chair with a tube coming out of your mouth. I’d much rather go running than do these things, but you get used to them. At one point in my life I was having to do PFTs every few weeks and sometimes multiple times in a single doctor visit.
If you’ve never done a PFT or are going to and wonder what happens, I’ll give you the cliff notes.
Your weight and height should be measured
You sit in a chair
Some clips are put on your nose so you’re only breathing through your mouth
You’ll be asked to breathe into a tube at varying rates, take a deep breath and hold it, etc
I’ve had some doctors give me a “PFT” which consisted of me simply exhaling into a tube. To me this just seems like a Peak Flow meter. The important thing to remember when doing one of these is to play it cool like the Fonz. If you’re uptight and try to fight it, you’ll just have to repeat everything.
Once you’re done there will be different numbers your doctor will go over with you. The easiest value for me to understand is the FEV1/FVC ratio. Based on your age, height and weight there’s be an expected ratio compared to how you actually performed. FEV stands for forced expiratory volume and FEV1 is the most air you can breathe out in one second. FVC stands for forced vital capacity or the most air you can exhale after inhaling as much as possible.
Like everything else, there are multiple ways to interpret this ratio, but if you’re within 80%-120% of expected, things are supposed to be normal. The hard thing for some doctors to realize is “your normal” may have nothing to do with textbook normal. Over the past 6 years I’ve gone from 135% to about 95%. I’m still “normal,” but have lost 40% of my lung function and it keeps decreasing every time it’s measured.
The good news is that I am coughing less, wheezing less and hurting less when breathing. I feel like I’ve been able to do more in the past six months than I have in the past couple years. I can’t really say I feel good, but things aren’t nearly as bad as last fall.
I just found an article talking about the FDA’s review of a new drug developed by GlaxoSmithKline and Theravance. It’s called Breo and is targeted towards COPD patients. If you’ve always heard “COPD” but don’t know what it is, the acronym stands for Chronic Obstructive Pulmonary Disease and includes chronic bronchitis, emphysema or both. It’s a scary thing. Now if you don’t have COPD, but do suffer from asthma or related lung condition, this drug could still be for you.
Breo is a combination drug containing both fluticasone furoate (corticosteroid) and vilanterol (long-acting beta-agonist). Other drugs similar to this on the market include:
Advair (fluticasone propionate and salmeterol)
Symbicort (budesonide and formoterol fumarate dihydrate)
Dulera (mometasone furoate and formoterol fumarate dihydrate).
Lots of big words in there, but these are all comprised of a steroid and a long-acting bronchodilator or beta-agonist. I tend to always be prescribed the latest and greatest, so I’m wondering if I’ll be switching to this some time in the future. One change Breo brings to the game is one dose a day. Many patients using combo drug inhalers are needing to take them both morning and night.
Also mentioned in the article is Anoro which could be competing with Spiriva. Anoro contains both vilanterol and umeclidinium. Vilanterol, a LABA, is one-half of Breo and umedlidinium is a long-acting muscarinic receptor antagonist. Supposedly this is the first LABA-LAMA combination drug.
In 2010 I was finally fed up with trying to lug my giant nebulizer compressor from home to work and anywhere else I needed it. After a lot of research and internet searching, I came across the Trek S offered by Pari Respiratory Equipment.
Some of the first things that stuck out to me:
I could power this with a standard electrical outlet (AC), car adapter (DC) or a battery pack (DC)
Weighs 0.8lbs by itself or 1.2lbs with the battery
Comes with a carrying case
Comes with two Pari LC Sprint Reusable nebulizers and two sets of tubing
Produces decent air flow (14.5psi standard and 35psi max)
Has great reviews on Amazon
I ended up purchasing it for an upcoming trip and LOVED it. Since then I’ve pretty much carried it with me everywhere I go. The small size and compact carrying case allows me to carry it or drop it into any backpack, messenger back, etc that I’m also traveling with at the moment. The compressor comes with a three year warranty and the battery pack has a six month warranty. I’m going on three years of use and haven’t had any hiccups with either the battery or the compressor.
This unit ships with two Pari LC Sprint nebuilzers that are good for six months. Pari also provides a sticker indicator that will let you know when six months is up. To make it easy on myself I replace mine in January and July every year. I have two in use at a time so I always have one at home and one wherever else I happen to be.
If you or a family member has serious asthma like myself and you’re getting tired (pun intended) of dragging that giant compressor around I highly recommend getting something more portable. General complaints I’ve heard and read about other hand-held models are noise levels and lack of air pressure creating a longer wait to complete a treatment. I’ve had neither issues with the Trek S. I’ve used this many times on airplanes where variations in the cabin pressure make it difficult for me to breathe, in cars, outdoors, indoors and anywhere else I happen to find myself.
When I was in high school there was an English teacher who was really into Julius Ceasar by Shakespeare. She did this whole “beware the ides of March” thing trying to prank other teachers. I think it was my senior year that a biology teacher left a dissection tray with eyeballs on it and a note saying, “BEWARE THE EYES OF MARCH.”
I kind of forgot about the whole mid-March thing until a few years ago when I started getting sick every March. This is the also the time of year allergy seasons start because winter is usually slipping away and trees are starting to pollinate. The first time I wasn’t feeling so great and coughing a fair amount. Out of no where I coughed up some blood. My wife has this rule that if I cough up blood I HAVE to go to the hospital. I ended up missing a work trip and staying home a few days recovering.
Last year I came home early from a workout at the gym because I was having some weird chest pains when exerting myself. Not too long after I started coughing profusely and was coughing up mouthfuls of blood for the next 30 minutes or so. Another trip to the hospital and another few days spend at home trying to recover.
This year I “almost” came down with bronchitis. I spent the better part of a week hanging out at home watching my oxygen saturation levels dip below 90% and trying to decide how I’d get to the hospital if I needed to. Maybe there is something to this whole Ides of March thing because this always happens to me between the 14th and 16th of March. That old soothsayer wasn’t so crazy after all and if nothing else, I can say I have something in common with Doc Holiday.
Remember way back in the day when you’d go to the doctor and get a sticker, sucker or what have you? Well about about us big kids? What do we get? Tonight I found out what it takes to earn a Taco Bell Beefy Melt Burrito $5 Box.