Since the pulmonary hypertension doctors decided I do not have PH and the Addison’s test came back negative, this kind of put us back at square one for trying to figure out what is wrong with my respiratory system. My family thought it’d be a good idea to try out one of the big hospitals with a comprehensive care model so I applied to get into Mayo Clinic and Cleveland Clinic.
I was able to get into both clinics. I don’t know if that’s difficult to do, but it seemed like a fairly easy process. I decided to go to Cleveland because it’s much closer and traveling would be much easier. The main campus hospital is pretty easy to get to and has a variety of hotels in close proximity.
I ended up seeing two pulmonologists and we talked for at least an hour. They had me do pulmonary function testing before chatting and the results were the same as they usually are. The doctors seemed a bit stumped. We went over many details of my medical history including pneumonia infections, hospitalizations, past testing and ruling out of conditions and diseases, and medications tried.
The doctors stressed my roughly 30 years of pulmonary disease is quite complex and impossible to figure out in one visit, to which I completely agree. They seemed to think I was on a good path with my lung doctors back home and at UPMC. They couldn’t really think of any tests to run, inhalers to try, or fancy biologic drugs to trial. Their one idea was to give daily azithromycin a try. Most people know of this drug as a “z-pack.” In patients with obstructive lung disease, usually COPD, some see improvement with taking azithromycin as a prophylactic, precautionary medication similar to a corticosteroid inhaler.
So that’s what I’m doing. I’m taking antibiotics every day in addition to everything else. At first it was wrecking my digestive system, but adding a daily probiotic seems to have evened things out. The only hiccup I’ve ran into is when I had bronchitis and my family doctor wanted to put me on azithromycin, which would do no good since I’m already taking it. From here, we’re going to see how things are after a year. My other lung doctors aren’t confident I’ll see any significant changes, but it doesn’t hurt to give this a try.
I just saw Logan Lucky (2017), grabbed some Taco Bell on the way home, and am now watching some Ozark (2017) with my awesome wife. Birthdays seem less and less important each year. I think that’s one of those “getting older” things. It also seems like a lot has happened this past year regarding my health.
I ended up in the hospital, again, with breathing issues. Official diagnosis was acute asthma exacerbation and acute respiratory failure. I continued to have trouble with oxygen levels dropping with activity and started seeing a pulmonologist specializing in pulmonary hypertension. I was immediately put on lasix, that drug which makes you pee a lot, to get fluid out of my system and started the tests. I’ve had echoes, stress tests, stress echoes, right heart cath, and will soon have a stress right heart cath. The doctor is pretty sure I have exercise induced pulmonary hypertension.
I have also complained for a couple years about my oxygen dipping below 90% for a while. This has always been attributed to the obstructive sleep apnea, but I was finally able to have it tested. An exercise desaturation test had me right at 89% which is just above the magic line for needing supplemental oxygen. A few months later I had a walk test, which is a much more simpler version of the previous one, and my oxygen dropped down to 81% while simply walking down a hallway. That earned me the label of chronic hypoxemic respiratory failure and I’m now on oxygen 24/7.
With all the breathing and oxygen problems it has been hard for me to do what I’d like. It’s difficult to watch myself slowly become less and less able to do what should be normal. I’d love to go to work everyday. I wish I could walk around the zoo all day with my kids. It would be nice to go outside and not have to worry about pollen counts, people burning stuff, or exhaust clouds from the mini-racetrack three miles down the road. I wish the cold air didn’t make my breath catch in my throat, and it’d be awesome if anything over 75F didn’t make me sweat profusely. Oh yeah, and don’t get me started on humidity. The oxygen has definitely helped. I can go see a movie and not feel sick by the end. I can ride in the car for a while and not feel exhausted and out of breath. I don’t have that starving for air feeling like I used to constantly have.
I feel the worst for my kids. I’m not a deadbeat like my father was, but it’s not like I’m able to do what I need to do with them and for them. To them I am seem normal though. They haven’t known me to be anything else but chronically ill. They aren’t confused as to why I don’t always go places. They know I can’t go to grandma’s house because she has cats. They don’t expect me to stay outside with them for long periods of time. They don’t ask me to play outside with them. Instead they go with me to doctor visits. They sometimes accompany me to the hospital for my injections. They know not to touch my drawers of medicine or play with any of my durable medical equipment. My three year old always apologizes if he steps on my oxygen tubing because he knows that might make it hard for me to breathe. I feel blessed with their patience and kindness towards me.
Oh, and I got a state issued handicap placard today for my car. I am now officially disabled in the eyes of the government. I used to have an issue with that label, but I got over it. I even got over myself enough to attend a convention with the family and allow my wife to push me around in a wheelchair the entire time. There is no way I could have been there without the oxygen and the wheelchair. My doctor is very against me having the handicap placard because he is certain I will cease all exercise. He says having a placard does something to you brain that makes you think you are disabled. The only reason I pushed for it was because the parking services people where I work are so difficult about allowing me to park in a semi-close location. I either pay the standard parking fee and walk half a mile, pay an extra $400 and walk about a block, or get some sort of handicap access. I have an ADA accommodation to be able to use handicap spots on campus, but the parking people still make it very difficult to receive the handicap sticker each year.
Well, I’ve most definitely complained enough for now. My life isn’t all that bad. I have a lot to be thankful for. You should also go see Logan Lucky if at all possible. It’s pretty awesome. Halfway through the movie I had already decided I’m buying it when it’s available.
I’ve been on supplemental oxygen for over a month now and love it. Yes, it’s a bit of a pain to drag the stuff around with me, or be tethered by a tube in the house, but it has allowed to reclaim a part of my life. In this time I have:
Gone to a multi-day family function/reunion
Went to a triple-feature Planet of the Apes feature at my local theater
Gone grocery shopping several times walking up and down all the aisles while pushing the cart
Cleaned the house
Gone into work for more than a couple hours
Walked around Oakland in Pittsburgh
Done yard-work outside the house
Carried 50-lb bags of chicken feed
I’m sure I’m forgetting things, but I think you get the point. I’ve gone from someone who was functionally home-bound to more of what I look like – an able-bodied adult.
Like most people on oxygen, I was started off with a home oxygen concentrator and a couple small tanks. The concentrator had a refiller attachment that allowed me to refill the tanks I was given. This was quite handy as I didn’t have to pick up or wait on delivery for tanks on a regular basis. The downside was the concentrator/refiller made a lot of noise and heat. It made so much heat it was confusing the thermostat in the house drastically affecting the temperature of our air conditioning. The tanks I had also contained only 90 min of air each preventing me from going too far outside the house.
After a couple weeks I was given a pulse regulator for my tanks. Continuous regulators just release oxygen as soon as they are opened, whether you are actually breathing it in or not. The pulse regulator released oxygen only when I inhaled. This effectively extended the life on my tanks by almost fourfold. The one downside with this new setup was I used the oxygen up as quickly as I breathed it. If I was sitting down or being relatively inactive my oxygen seemingly lasted forever, but if I was walking around or carrying things it was a different story.
Another couple weeks later I called my oxygen provider to inquire about arrangements for flying on a plane. I should preface this by saying my original oxygen provider was bought out a week or so into my use, and the new provider wasn’t too keen on customer service. The representative I spoke with on the phone insisted they would do nothing to provide oxygen for me on the plane. This is a bit of a problem because oxygen tanks are not allowed on commercial flights, and airlines do not allow you to connect to their emergency oxygen system anymore due to “security risks” after September 11, 2001. My provider should have either loaned or rented a personal oxygen concentrator (POC) with batteries provided 150% the time of my flight as required per airlines regulations. I complained to my pulmonologist who agreed this was ridiculous (this wasn’t my first complaint with the oxygen provider), and suggested I switch to Inogen.
Inogen is a manufacturer of oxygen equipment, provides its equipment directly to consumers (like me), and happen to have the most universally accepted POC for commercial flights. Last week I spoke with the local Inogen representative on the phone and two days later they were at my home with all new equipment. My new home conentrator is 1/3 the size, puts off virtually no heat, and makes much less noise. The Inogen One G3 personal oxygen concentrator allows me to walk around the house easily, go outside, go shopping, go to the movie theater, travel in my car, etc. with much ease and convenience. It weighs less than 5 pounds, has 8-9 hours of battery life, and I can get more batteries if needed.
I feel like things are looking up. I still feel worn out constantly, but I am much more physically active than I have been the past 12 months. People are also nice to you when they see you have breathing problems. That’s the problem with invisible illness, you’re sometimes treated poorly because strangers think you’re being lazy or demanding. People want to hold doors for me, carry things to my car, I’ve even received discounts at gas stations when buying a fountain drink or snacks. I’m hoping to continue increasing my physical activity to strengthen my respiratory system.
It’s easy to believe a lot of what you see on TV and in the movie theater until you come across something with which you have personal experience and say, “what the….” I first remember one of these instances sitting in the living room watching who knows what when a woman on TV was giving birth and my mother thought it was ridiculous. There was probably a lot of unnecessary sweat, screaming and flailing going on there. I just remember my mom thinking it was over-dramatized. I think the same can be said for asthma. At least 25 million Americans are diagnosed with asthma (“Asthma at a Glance,” National Center for Environmental Health, U.S. CDC, 1999) and COPD is currently the 4th leading cause of death in the US (Mannino and Kin, 2006). You’d think people would be more informed about lung disease and what it looks like. This also makes me wonder who is consulting with these writers, directors and producers as to exactly how actors should act in these scenes. To be fair, some portrayals are supposed to be over the top and exaggerated, but how is the average, free-breathing, entertainment-connoisseur supposed to know that?
Portrayals I find inaccurate, annoying, and what have you:
I have often seen asthma exaggerated, blown out of proportion, and not treated seriously in films and on TV. Children with asthma are often picked on, made fun of, ridiculed and seen as less than normal. They can’t go outside, participate in gym class, breathe normally, talk normally or do what they want in life. Their disease, condition, symptoms or even medication are used at plot points or MacGuffins, instead of just being a part of who they are. Even in the show Lost, the character Shannon has pretty convincing asthma, but it’s really just a ploy to find her medicine than anything else.
Mikey in The Goonies (1985) – way too many puffs on an OTC inhaler and later tosses it when he no longer wants it. Apparently I’m not the only one who recognizes this:
Uncle Junior in The Sopranos (1999) – OSA and his CPAP, can no one help him get his mask on properly?
Bobby Elvis in Sons of Anarchy (2008) – constantly trying to buy those “crazy expensive” albuterol inhalers, not to mention your average rescue inhaler has roughly 200 puffs in it.
Bobby – That dealer, she got that albuterol?
Piney – Probably.
Bobby – Tiki’s going through three inhalers a week…
Stevie on Malcolm in the Middle (2000) – overplayed wheezing and shortness of breath. Sorry about the poor quality of videos here. The first is a scene from an episode and the second is the actor, Craig Traylor, leaving a phone message as “Stevie.”
Morgan in Signs (2002) – suffers from an asthma attack without medicine while his father tries to help him through it.
Thomas in Black Hawk Down (2001) – soldier uses his inhaler before heading out on a mission, and yes I know there are questions to be asked about his active duty status.
Bob from Up in the Air (2009) – man loses his job and wants to know how he’ll care for his daughter without insurance. I really dig J.K. Simmons’ righteous anger here.
Barry in Sidekicks (1992) – teen with severe asthma manages his symptoms through a regulated exercise program.
So what’s wrong with asthma in pop culture?
I’m fairly certain there is no lack of education and information available about asthma. The problem is people seeking it out or stumbling across it. Unfortunately the main way people learn about things that aren’t in their face is through TV and film where asthmatics are generally depicted as:
Why asthma? Why did you select any life-threatening condition or the character, Carl Wheezer? Is asthma funnier than heart disease, diabetes, epilepsy, or AIDS?
There is nothing funny about growing up with asthma, a condition that robs children of oxygen, limits physical activity, and requires responsible use of inhaled medications and avoidance of allergens and irritants.
Was the character intended to educate children and the public about asthma?
If so, your efforts backfired.
Jimmy Neutron perpetuates the painful myth that children with asthma are emotional wimps that tend to overuse inhaled medications when faced with excitement.
It may not seem like a big deal, but these cartoons are both educating children on their limits and expected lifestyle AS WELL AS educating non-asthmatics on the appropriate response and treatment of those suffering with the disease. This includes other children, parents, teachers, family members and anyone else an asthmatic might deal with on a daily basis or run into only once. If this still doesn’t seem like a big deal, I’d like to point out several articles where two children and an adult find themselves in need of emergency care.
Personally I think we need to encourage children to make goals and support them in achieving those goals. I was told as a child I could do whatever I wanted and played football even though I suffer from severe asthma and severe summer/fall allergies. Instead of creating ridiculous, debilitating characters why not celebrate our fellow asthmatics who have proved they accomplish their goals. Asthma obviously didn’t keep Martin Scorsese from winning 111 film awards including an Oscar for Best Director on Hugo (2011). Here’s a short list of a few other famous people you might recognize.
John F Kennedy
Louis “Studs” Terkel
Ludwig von Beethoven
Peter the Great
Rev Jesse Jackson
William Tecumseh Sherman
So what can we do? I’ve decided to start blogging more to share my story and experiences. In just the past few weeks I’ve already been contacted by friends, family and strangers saying they’ve benefited from or learned something from things I’ve shared. I’m committed to be on the lookout for fellow asthmatics in need of assistance out in the world and taking action when necessary. I’m also looking to point out and share good examples of asthma in pop culture that will further asthma education around the world. In fact, there’s some buzz about a new movie, Asthma (????), directed by Jake Hoffman and starring Krysten Ritter from Breaking Bad.