Tag Archive for asthma

It’s been feeling a lot like August

August is always my worst month of the year. It’s hot and humid, ragweed flourishes, and I tend to get sick. This summer has been the usual with plenty of missed days, CPAP time, and breathing treatments.

My daughter picked up a cold the first or second day back at school and shared it with the family. It’s been awful. I just finished a z-pack and some prednisone, but still aren’t feeling great so my doc had me do bloodwork and chest x-rays to see what’s going on. In the past, I’ve just gotten stronger and stronger anitbiotics until the sickness goes away or I’ve ended up admitted. I appreciate the attempts to make sure it’s a bacterial infection before the unnecessary use of more medicine.

In a couple days I’ll go in for my echo. One of my lung docs wants me to be re-evaluated for pulmonary hypertension. My right ventricle was enlarged on my first echo back in 2010. I’ve had two since then showing things to be normal, which has been attributed to my strict adherence to CPAP therapy. Lately I’m always short of breath, my chest hurts, my blood pressure is often higher than normal, and there are a few other signs that need to be ruled out. I’d really love them to find something, anything. For years it has always felt like there’s something not yet diagnosed. If they found something, I could at least be treated for it and maybe not feel like crap all the time. I’d love to do normal things again.

SOB

The first time I saw “SOB” written on some paperwork I was a little offended and slightly confused until I learned it was the abbreviation for short of breath. Right now, that seems to be all I am. I’m constantly huffing and puffing while trying to do really basic stuff. I haven’t been getting much work done. Last Saturday I felt sort of ok so I did some cleaning and picking up, but then spent all of Sunday in bed and this week I feel constantly tired and exhausted.

I’ve been talking to both of my lung doctors and I now have an upcoming echocardiogram scheduled. I think this will be the 4th one I’ve had. The first one was about six years ago and showed my right ventricle was enlarged. I started using a CPAP after that which has helped the right side of my heart to shrink back to normal, but every couple years the symptoms come back. This time seems worse than the others for me. A few weeks ago I went in for my PFTs and the numbers were actually 5% better than six months ago. It seems odd to have so much trouble breathing when my lung function hasn’t gotten worse. I’m hoping to find out something sooner than later because this is really cramping my lifestyle. Just going to a store and walking around is enough to tire me out and require me to lie down for a rest.

Pulmonary Hypertension

I’m a weird case. Doctors have always had trouble trying to figure out exactly why I have trouble breathing. The allergies have always been quite obvious; both asthma and allergies are prevalent in my family. After years of moving around and trying to find doctors who believed me, they also discovered I have:

  • Hiatal Hernia (from a two-year chronic cough a doctor didn’t want to treat)
  • GERD (from the hiatal hernia)
  • Obstructive Sleep Apnea (from my tongue that covers half of my airway, the giant tonsils, and other weirdness in my airway)
  • Vocal Chord Dysfunction
  • Left Hemidiaphragm that doesn’t move
  • Anxiety because not being able to breathe well for 25 years makes you anxious

Last year restrictive lung disease started appearing on my breathing tests. Lately I’ve been short of breath often from walking up stairs, doing normal things like making the bed, and occasionally my oxygen drops into the 80s for a while.

While telling one of my lung docs about my symptoms, it was mentioned I should be assessed for pulmonary hypertension (PH) with a possible cardiac follow-up. So I’ve been reading up on this rare lung disease, and of course most of the symptoms seem to match up with what I’ve been experiencing. The only problem is those same symptoms can match up to a lot of conditions. I don’t want to have PH, but if that’s what ails me, it could be treated.

I’ve been in this situation before where a doctor thinks they may have it figured out. At one point everyone was certain I had allergic bronchopulmonary aspergillosis. I’m very allergic to aspergillus mold, and I had all the symptoms expect the one where you cough up oddly shaped chunks of phlegm. Over the years I’ve been told I might/probably have:

  • a fungal mass in my lungs
  • chronic bronchitis
  • COPD
  • right-heart failure

…to name a few. I’ve even been told I don’t have asthma and was taken off all maintenance medications only to go back on them 6 months later.

Last month my jaw started hurting, I talked to my dentist, and was referred to a TMJ specialist who told me my jaw is causing a lot of my breathing issues by sitting back too far and pinching my airway. I’m willing to look into this, but am not willing to pay the $2500 upfront. I’m currently in negotiations with my insurance company for a pre-certification to cover it.

So in the meantime I will not get my hopes up, I will not let the internet convince me of a diagnosis, and I will wait to hear from my doctors.

Trying to become more healthy

My allergies have been terrible, similar to everyone else around me, but thankfully my breathing hasn’t been extremely bad. I still have my ups and downs, but it’s not constant struggling to breathe like some summers have been. I saw my lung specialist in Pittsburgh last week and mentioned my periodic bouts with low blood-oxygen saturation so I get to do a cardiopulmonary test in November. That is basically riding a bike while they take blood from an artery (Arterial Blood Gas test or ABG) to see how much oxygen and carbon dioxide is in there. This is more accurate than a pulse oximeter which is placed on a finger. Sometimes ABGs make me a little anxious because the first 2 or 3 I had were a bit traumatic. Blood is generally taken from your wrist, and if you get an amateur phlebotomist doing it…your wrist is going to hurt like hell for a month or so. These days respiratory technicians do this type of procedure and tend to do an excellent job…I just always remember those first, bad experiences.

I’ve done a little research on the cardiopulmonary test, and have talked to a respiratory tech friend of mine about it. It’ll be good to have this done because if I have any problems during the test, they can pinpoint the reason whether it be heart, lungs, or I’m just out of shape. Back in 2011 and 2012 there were two times I was told I could be experiencing heart failure, pulmonary hypertension, or pulmonary arterial hypertension. It ended up being a combination of the right side of my heart enlarged a bit, poorly controlled obstructive sleep apnea, and poorly controlled asthma.

So with all this in mind, my short/long-term goal at the moment is to work on my general health.

  1. Sleep regularly – I’m notorious for staying awake for days at a time or sleeping for hours and hours. Usually this involves bad asthma flares and high doses of prednisone. Other times I happen to be awake and need to watch just one more episode of the current show I’ve been binging. I’d probably do a little better if I had a more regular sleep schedule and got up at a regular time in the morning, whether or not I feel ok.
  2. Drink less pop – Caffeine does wonders for me at times with the side effects of not breathing well and some of the medications I’m on. The problem is I don’t like coffee or tea, and pop/soda is full of sugar. Drinking water isn’t a problem for me, I just enjoy a Mt Dew or several when the mood strikes me. In the past few weeks I’ve been switching to diet Mt Dew and Dr Pepper or sticking to water. I don’t think I need to cut it out entirely, but I could do with more moderation in this area.
  3. Exercise more – There have been times in my life where I probably exercised a bit too much coupled with active, manual labor. Nowadays I have a desk job, and sometimes I work at home which means even less walking. I do enjoy riding a stationary bike which allows me to exercise inside, avoiding outdoor allergens. For now I’d like to get back to riding 5 times a week.
  4. Be mindful of what I’m eating – I’m not an advocate of “dieting.” My personal experience, and data from clinical research shows drastic dieting rarely results in long-term results. I need to be able to eat things I like while still making healthy choices. i got a free app on my phone called MyFitnessPal. I can scan bar codes or keyword search for food items, and the app tracks all the calories and nutritional information. You can track your weight, log workouts, set goals, and receive reminders. There are also periodic challenges if that helps motivate you. One feature I find particularly cool is data from Google Fit syncs with this app to add calories burned from exercise to the equation.

So with all of this, hopefully I’ll lose some of the weight I’ve put on in the past 3 years from prednisone, a hypothyroid, and sedentary life style. Anything I can do to improve my cardiovascular health is also a bonus for my breathing issues. After a couple weeks I’ve dropped a few pounds. If I can make this a habit and keep with it, I’m excited to see where I’ll be in six months.

May is Asthma Awareness Month

May is asthma awareness month. My sister likes to celebrate her birthday for an entire month, so I’ve been trying to share all month about asthma on facebook, twitter, and instagram.

My month has been ok. My little dude ended up in the ER with bronchiolitis again. As time goes on, his breathing resembles mine more and more. Fortunately it’s very episodic for him and only flares up every few months. A few duonebs, some pulmicort, and prednisone fixed him up. It’s interesting to watch him expend as much energy as possible all the time. Even when he’s having trouble breathing, he’ll move and move and move until he ends up lying on the floor.

Speaking of “lying on the floor,” I had a “moment” myself a few days ago. I wasn’t feeling too great and was lying down while the kids watched a movie. The little dude was pretty active, like a spider monkey, as usual. He was kind of climbing on me, and before I knew it, he was jumping on my chest. That triggered some major coughing and wheezing which ended in me crawling towards my medicine, getting too worn out, and lying on the floor for a long time. I was eventually able to get to my meds and noticed my oxygen was 85%. In the moment, these sorts of incidents don’t seem like a huge deal. Afterward, they do seem a bit more serious. I know I’d be exponentially more concerned if I witnessed this happening to someone else.

A couple nebs, magnesium, allergy meds, five hours on CPAP, and some more albuterol had me mostly ok in 24hrs. I should have used an epipen or gotten help. That’s easy to now, but in the moment all i can think about is, “I don’t want to go to the hospital.”

At the moment I’m outside of Pittsburgh and will be visiting my other lung doctor at UPMC tomorrow. It’ll be interesting to see where my PFTs are at and things have changed or stayed the same. A year ago I found out I have idiopathic restrictive lung disease on top of everything else. It’d be really cool if things were better.

Am I the only one that has to pack three times as much medical stuff than clothes on trips? I feel a bit ridiculous sometimes, but I assure you it’s all necessary.

Children and Chronic Illness

I am chronically ill, and I have two children. I don’t like admitting I can’t always take care of them, mostly because it is true. Fortunately they are very understanding and are kind of used to it. It can become really difficult when I’m solo parenting though.

Last week, my special lady friend was in L.A. for a work conference. Kid #1 goes to school during the day and Kid #2 is with a babysitter during the day, but I’m on duty for nights, mornings, and weekends. I was doing alright until the weekend.

I wasn’t feeling well before Liz left. She was worried things wouldn’t be ok. The kids weren’t adjusting well to mom being gone, but I was doing ok. The week progressed, and I became slightly more and more tired each day. I’m often able to rest and recharge on weekends, but not this time.

I did get a break for a couple hours Friday night and Saturday afternoon, but I was already feeling bad enough that it wasn’t enough for me to feel better. Sunday morning I got the kids some food, turned on the TV, and laid back down. They woke me up at 11, 12, 1, and 2. They were hungry, they were tired, and they needed some attention. I was able to get a family member to come get them around 6, but by then I was in pretty bad shape. It’s now three days later, and I’m just now doing some normal things like: not sleeping all day, eating, and talking to people.

I’m fortunate that my oldest can watch over the youngest and mostly keep him out of trouble. I’m grateful to have family around who can help out at times. We’re all glad to have Liz back, and hopefully I can hack it next time. The kids are also fine, I just wonder if they think all dads are like me.

Took a trip and I didn’t get sick

Last week I wasn’t feeling too great because farmers were harvesting the soybeans around my house. The process puts an inordinate amount of dust and particulates into the air effectively making it “hard to breathe.” I hid inside Monday through Wednesday, and Friday Liz and I headed up to Michigan to hang out with friends for the weekend.

As usual, I had more medical stuff packed than non-medical stuff – even with me taking my laptop and a stack of books. We stayed in a big, rental house on Lake Michigan. It was one of those places with a steep driveway, and a steep set of stairs to get to the main floor. Once inside, all the bedrooms were either on the 2nd or 3rd floor. I was miraculously able to carry our stuff up from the car.

While there, Liz and I took a trip down to the beach which basically meant climbing down the hill we “went up” to get to the house, and then climbing back up. Once again I was able to do it without any adverse side effects. While there, my allergies were definitely bothering me and it seemed like the house either had some mold or tons of dust in it. A few puffs on the ol inhaler kept me in tip-top shape.

Today I am sitting in my room watching Back to the Future while typing this. A few hours after arriving back home the effects of all the harvesting kicked back in. I’m hoping I’ll be well enough to go outside again. The wheezing and shortness of breath really wears on you after a while.

No hospital trips this summer

Summer is officially over, and it smells like Fall outside. I made it through with no hospitalizations nor trips to the Emergency Room. This is slightly epic for me as this hasn’t happened for years. I’ve still had a rough time, did some steroids, did 5 courses of steroids, and missed a chunk of work. My doc asked me to take probiotics to help my digestive system recover from all the meds.

I’ve never taken a probiotic before and I’ve always heard how most of them are scammy. I asked my doc what she would recommend and was told to check out Align or Florstor. I was pleased to learn they don’t require refrigeration, and was able to get a generic at CVS.

Overall I feel like I’m doing better and have high hopes for this Fall and coming Winter. I also picked up a digital peak flow meter last week that shows FEV1. I’ve give some thoughts on it soon.

August

Well, it’s my *favorite* month of the year and 2015 is similar to the rest. There are some bright spots though, I haven’t been in the hospital yet this summer, my meds have been tweaked to a decent combination, and I have an appointment with a VCD specialist next week. I’m currently on my 3rd prednisone taper since July and my lung doc put me on some anti-biotics today. I’m hoping I can buck up over the weekend and get back to work on Monday. I’m hoping I can weather out the summer and then have a decent winter and spring. We’ll see what happens.

Asthma may I?

The other night I was watching The Departed (2006) around 3am, wheezing and feeling miserable, when I realized my asthma can be personified by “Marky” Mark Wahlberg’s character, Dignam.

Hey Asthma, think I’ll make it to work tomorrow?

…get out and socialize with friends?

…be able to take a walk with the kids?

…make it over to Rally’s before their Two Big Bufords for $5 deal goes away?

…see the new Mad Max movie in the theater?

…go see my friends in the Wizard of Oz play?

…hang out with my cousin when she passes through on her coast-to-coast road trip?

…go to Lebowski Fest this year?

 

I’m not even sure why I ask anymore. The answer is always the same.