Archive for Life

Summer 2014 ER Trip #4 and Hospital admission #1

A couple of months ago I ended up at the ER again short of breath, with chest pains, flaring allergies, and low oxygen.  They ended up keeping me a few days mostly because my o2 was in the 80s and my ABG came back not good.  I ended up connecting with a great hospitalist who looked through my medical history and really wanted to track down the root cause of my health issues.  She ran some tests and was in close contact with both of my lung doctors throughout the process.  After being released I saw my second pulmonologist out in PA, did more tests and it was determined I do not have asthma.

Even after a couple of months it feels weird to say that as it has been a big part of my life for the past 23 years or so.  I still have the breathing problems, but it was confirmed I do have vocal chord dysfunction (VCD) and my chords are pinching on exhale which really mimics asthma.  I was often asked if it was hard to breathe in, assuming VCD could be pinching my throat shut on inhale, but for me it was the other way around.  I was taken off a lot of medications and given a few new ones to take.  I’m still having a rough time with Fall allergies, the rotting leaves outside, and smoke outside.  I’m looking forward to winter when the outdoor allergens freeze and I’ll have a few months of better breathing.  Hopefully my health will be in much better control next year.

I’ve made it halfway through August

Every year, August is an especially rough month for me and mister asthma.  A year ago today I was in the hospital having an awful time, not sleeping, and anxiously watching the clock waiting for the RT to come by for another treatment.  I hate being in the hospital and, in my dislike for being sick, I often try to bounce back earlier than I am able.

I should really listen to Liz more often, cause she’s never wrong.

It was probably 9 or 10 years ago I casually mentioned to Liz, “I have asthma kind of bad.”  That may not seem like a big deal or a bold statement to make.  In actuality it was my way of showing Liz I trusted her enough to nonchalantly downplay my serious respiratory condition.  Back then I tried to hide my asthma as much as possible.  I didn’t deny having the disease, but I let as few people as possible ever see me having any trouble.  A good portion of my life has been spent pretending like I’m ok, and it seems like people usually buy it.  There’s a lot you can hide by sitting, smiling, nodding, making hand gestures, and just acting chill.  When things got really bad, I’d just disappear for a few days in my apartment and no one thought anything of it.

In the past 10 years Liz has seen pretty much every aspect of the disease.  She’s seen me go from fine to gasping within seconds, she’s taken me to doctor’s appointments, and has sat with me on many, many hospital trips.  She’s picked up who knows how many prescriptions for me at the pharmacy.  She’s watched me try to walk down the hallway to get meds to end up on my face, on the floor.  She’s yelled at and threatened people illegally smoking in my general vicinity.  She’s explained over and over and over to people why I suddenly can’t go somewhere or participate in some planned activity.  She knows when I’m pretending to be ok.

Earlier this month I was in the ER again.  As usual I was sick of being sick, and worried about being away from work.  I stayed home for two days and against the advice of The Liz, I went back to work because I felt like I needed to be there to assist with a big upgrade.  Well, I showed up, pretended to be ok, worked a full day without lunch, and then spent the next 7 business days at home.  After going back to work I picked up a virus of sorts, became feverish, started coughing crap up, and watched my peakflows drop.  Thankfully Liz convinced me to stay home that entire week and by the end I could actually take deep breaths and in 7 days my peakflow numbers doubled.

I actually feel not so bad this time, and think this is the best I’ve been breathing since May or earlier.  Liz says this is the first time in 10 years I can say I’m doing better than I was last year.  Even though FMLA paperwork is the bane of my existence, listening to Liz and staying home for a couple extra days is way better than not and having to spend an extra week or two home.

Summer 2014: ER Visit #3

Just as I had predicted the day before, it’s August and I’d probably end up having an ER trip.  I just didn’t think it’d be happening so soon.  Three days in a row I was exposed to some sort of smoke and the third time apparently worked.  A racetrack several miles away was having a special event that night where they were attempting to make as much carbon pollution as possible.  The result of said event made my entire neighborhood, several miles away, smell like burning tires.

I gave it almost a couple hours before deciding to throw in the towel and admit defeat on this one.  On the way, Liz said,

I’m sorry for making you go to the hospital.

She knows how much I don’t like going there, even though I get the help I need, because it tends to set me back a bit with work and other things.  For example, I’ve been awake close to 2 days now.  That’s what happens when I’m injected with solumedrol and my prednisone dose is greatly increased afterward.

We were surprised to see the place so empty on a Saturday night.  I never really have to wait, but that just means they get to me even faster.  Recently a friend of mine blogged about how emergency treatment protocols for asthma seem to have changed.  I’ve noticed some of the changes myself.  As usual I was having trouble talking clearly and being understood so Liz was able to answer a lot of questions for them.  I think this was the 4th time I had seen this particular respiratory tech, and she totally remembered me, so a lot of the initial questions were just confirming medical history and medications.

They checked on me fairly often because I wasn’t able to move a lot of air when I arrived, but the treatment was pretty identical to my other two trips this year.  One duoneb treatment, followed by listening to my lungs and checking O2 sat a while later, followed by 125mg solumedrol, see the doc, and then go from there.  I can always tell how much the doctor has read my chart by how the conversation goes with him or her.  I know this doctor hadn’t read much at all.  She told me I was moving more air, sounded ok, x-rays looked ok, and she was going to “send me home with steroids that’ll make me better in a couple days.”

I’m fairly familiar with prednisone as I’ve been taking it off and on for years.  In fact, I’ve been taking it every day for the past 15 months.  I’m also on every type of maintenance medication they give to asthmatics including xolair.  That and the fact I’m prednisone dependent gets me labeled as a severe asthmatic by many.  When doctors have read all this stuff they usually want to have a 10-15 minute conversation with me or longer.  They want to know how I’ve been recently, what I’ve tried, what works/doesn’t work, what brought on this exacerbation, symptoms, what I think we should do, do I think I should be admitted, have I heard of BT, etc, etc, etc.

So on this trip I got a few nebs, solumedrol, and was sent home after a few hours.  Some of my severe asthmatic friends liken this to a tune-up or oil change for your car.  You know, a quick maintenance sort of thing that needs to be done, and there are probably many other things you’d rather be doing instead.  I really hope I can stay on track with things for a while and not have to go back.  Things are really starting to ramp up right now with school starting soon and I kind of need to be around for stuff.

The funny part for me would have to be when the nurse was going through discharging papers with me and pointed out I was diagnosed with an asthma exacerbation followed by, “you probably know more about it than the paperwork…you probably know more about it than I do.”  Sounds like the nurse read through my chart.

A is for Asthma and August

The month of August tends to be dramatic and/or traumatic for me.  There’s always a lot going on between heat, humidity, allergies, and the school year starting.  Last year contained three hospital trips for me, and off the top of my head I can think of 4x I’ve been in the hospital on my birthday.  Yesterday was the first day of August, and as usual I am bracing myself for whatever is to come.

I’m still working on “getting better” from my ER trips in June, and also not repeating last summer/fall sitting at home for weeks on end trying to breathe properly.  I still have a lot of days where I feel awful, many days where I feel sort of awful, and a few days where I’m feeling OK.  One of my big goals at the moment is to get my prednisone dose back down to something that doesn’t keep me swelled up and my teeth hurting.  In the past few days I’ve been exposed to cigarette smoke twice and fortunately haven’t had extreme reactions to it.  Yesterday was the most recent along with a short burst of crazy rain which left me in bad shape.  This morning Liz said,

I’m sorry for not taking you to the hospital last night

Made me laugh to beat the band.  At one point she was commanding me in a loud voice to take another treatment, sit up straight, and other sensible things that I seem to forget about when it’s really hard to breathe.  I’m actually thankful she didn’t drag me to the ER because I’m trying really hard to not miss work.  Hospital trips always end me on insane amounts of steroids, and feeling extremely exhausted for days.

Asthma attacks or flares tend to run their course whether you are in the ER or not.  While I would always advise someone to get help if they are having breathing problems, I’ve been dealing with this long enough and am on enough medicine, there is a lot I can do at home that would be done at the Hospital.  As long as it’s not too bad, I can wait things out at home for free instead of getting charged to wait them out on an uncomfortable ER gurney.

For now I’m continuing to keep track of symptoms, peakflow numbers, oxygen saturation, general symptoms, and trying to make sure I take my medicine on time.  I’m really, REALLY hoping I can stay out of the hospital for the next 30 days.  If I do, I’ll consider it nothing short of a miracle.

Asthma equals exhaustion

Asthma attacks can be rough.  Chronic asthma can be even worse.

I’ve been officially diagnosed with asthma for about 23 years.  I have a family history of severe asthma and severe allergies.  I’ve been prescribed maintenance medications for the past 22 years and have pretty much taken every single steroid and combination-steroid inhaler at some point in time.  I pretty much take all the types of medications that are offered for asthma and have been taking prednisone solid for the past 15 months.  Just making sure I take my medications on time and log my daily symptoms feel like a part-time job.

I work full-time, I attempt to help take care of our two small children, and I’m working on grad school.  Amongst all that I have trouble sleeping on a regular schedule combined with weekly exacerbations/flare-ups, and every day I hit a wall of tiredness where my body declares, “NO MORE,” whenever it pleases.  It’s hard to make plans because I often have to cancel them.  I also have to be careful where I go so as not to encounter anything that could set me off on the chance I’m having an OK day and have decided to be adventurous.  I can’t go to friend’s houses with cats, I must avoid all types of smoke, I can’t be around mold, places with water damage are usually a bad idea, dusty is usually a bad thing, and during non-winter months there is always something in the air that can make me cough or sneeze and my eyes water…leading to it being harder to breathe.  I also have to be really careful about getting sick because common colds are like bronchitis, bronchitis is like pneumonia and actually getting pneumonia is a Go-To-Jail-Don’t-Pass-Go sort of situation for me.  And by jail I mean the hospital.

Luckily I love watching movies.  That’s a great activity for someone like myself.  I also like to cook things I find delicious, and grow beards.  I just wish sometimes I could wake up in the morning without spending 30 min taking medicine trying to feel not-too-awful to start my day.  I wish I could spend an entire day at work not trying to figure out when I have time to take my meds or need to take my meds.  I wish I could come home after work and actually accomplish some things instead of needing to rest up so I can get out of bed the next day.  I just wish I wasn’t tired all of the time.

Lucky Scruff’s Pine Tar Soap and Holy Beard Oil

A few weeks ago I happened to be on Facebook and noticed Lucky Scruff was looking for people to review some of their products.  I’m all about writing reviews for stuff I like, so I volunteered and a week or so later I received a box with:

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Lucky Scruff makes their own soaps and oils, and is based out of Antioch, Tennessee.  They seem to really care about helping people enjoy beards, and they do so with wit and humor.  They sell quality products that are modestly priced, and hold up to other beard care and maintenance products I’ve used.  Oh, and if you live in the state of Tennessee I think you’ll like their shipping perk.

Right from the start I have to comment on the packaging itself.  Both the soap and the oil came in white, cloth, drawstring bags.  It’s classy and gives more opportunity for branding.  I’ve never been great at gift giving or gift wrapping and Lucky Scruff does it for you.

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Beard Oil

I also thought the literature was great.  The first piece was post-card sized with beard care and maintenance tips, and a coupon code for my next order.  It also highlights the three most basic beard care items: a comb, soap, and oil.  The simple step-by-step instructions on how to properly use and apply beard oil are key as some customers may be first time users.  The brochure highlights their products, the company, and how to contact them on the web.

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I only started using beard oil this past year and have been using Beardbrand’s Blank Slate Oil, so Lucky Scruff’s Holy Beard Oil is my second.  Comparing the two it seems like the Holy Beard Oil is slightly lighter than the Blank Slate.  Neither leaves my beard feeling oily, greasy, or weighted down.  I’ve been using a slightly larger amount of the Holy Beard Oil on my beard, but I can’t quite say if that’s because it’s a lighter oil or my beard has grown in the 2-3 weeks I’ve been trying it out.  Either way, I think it’s a great product and it smells great.  I’ve never worn scents or colognes and this is just enough without being overpowering or too noticeable.

Beard Soap

Similar to beard oil, I also started using beard soap this year.  Hudson Made makes an excellent product, but it’s a little on the expensive side.  I’m not saying it’s not worth it, just not the right solution for someone on a tight budget.  Pine Tar soap has been around for decades and is a staple for many beardsmen.  Before I tried out Hudson Made’s soap, I read in many places on the internet that pine tar soap “smells like a wet campfire” and will stink up your house.  If you’ve read much else on my blog you’ll notice I have severe respiratory issues and anything connected to smoke is not a good thing.  I’ll be honest – I was a little worried when I saw Lucky Scruff had sent me pine tar soap, but I wanted to try it out to be fair.

I’m happy to report the soap is great, it lathers awesomely well, it cleans my beard, the scent is subtle, and it in no way smells like a wet camp fire.  The price is also right at $5 for a bar.  Lucky Scruff sent me a sample size and after heavily soaping my beard 6x in the past few weeks, the bar looks like it has hardly been used.

Results

Overall I am very satisfied with the soap and oil from Lucky Scruff.  Looking at their other products, I’d love to try out their Honey Oatmeal soap as well.  I’ll probably get a bar after I’ve used up more of the other two soaps I already have.  People have been loving the beard these past few weeks.  I think it’s fair to say if you use Lucky Scruff beard products, babies will love you.


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Trying to out-Jedi the asthma

Last summer one of my problems with recovery included me trying to jump right back into my normal routine as soon as I could handle not being in bed all day.  While this may sound like a not smart thing to be doing, it made sense at the time because I was concerned about using up all my earned time too quickly and running out before the fiscal year was over.  This strategy caused me to use all my sick time, vacation time, FMLA time, and even had to miss a few additional days.  This summer I’m trying to channel Obi-Wan Kenobi and outsmart the chronic lung disease.

A couple weekends ago I piggybacked two ER visits and the doctors told me to stay home that following week of work.  I’ll be honest – that week was not a good one as I had several serious situations that could have easily landed me back at the hospital.  I showed up to work the next Monday, after staying home for a week, and made it through one day.  I seriously over-did things, watched my peakflow numbers drop to unnecessary levels and stayed home Tuesday and Wednesday.  Thursday rolled around and I had an important decision to make.  I could go back in for another day before the holiday weekend, or not be an idiot and just stay home.

I’m proud to say I chose the latter and actually gave myself some time to rest.  Yeah, I used up three sick days, but I can say with some confidence I probably avoided another week at home later this month.  I don’t know why it can be so hard to just be still and take it easy.  Fortunately I have The Dude to keep me company.

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Time to replace your nebulizer

Do you clean your nebulizer cup regularly?  Do you ever replace it?

I’m almost embarrassed to say at one point in my asthmatic life I used the same nebulizer cup for years without ever really cleaning or replacing it.  Yes, that is gross and unsanitary if you were wondering.  Last year I wrote up a post about how to clean your nebulizer which probably gets the most hits out of anything on this blog.  I used to clean them with vinegar, but a soak in warm water with dish soap for 30min to an hour is just as effective and you don’t run the risk of “inhaling pickles” afterward.

Today is July 1st which means the start of the 2nd half of the year.  Nebuilzer parts: cup, tubing, and filter, should be replaced at least every six months.  To make it easy on myself I do this January 1 and July 1 of every year.

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Where do I find replacements?

If you’re in the ER/hospital or receiving breathing treatments at a doctor’s office, that’s one easy place to acquire replacements parts.  If they’ve never offered to give them to you, just ask.  They do not reuse them for other patients and are immediately trashed.  They’ll probably even bag up the tube and nebulizer cup for you like take-out dinner.  Most nebulizer cups and tubing will work with most nebulizer compressors, but it’s good to check.  Occasionally I’ve been given tubing with a much too wide mouth from the hospital, but that’s because it’s made to fit onto those giant nozzles in hospital rooms for room air and oxygen.

You’ll still need to replace the filter in your compressor and that is something you won’t be able to get from the doctor’s office.  Some people like to use durable medical equipment supply companies, but I’ve never had much luck due to having an opinion about the equipment I use.  I’ve also had several local companies try to screw me over with what I’m purchasing, trying to make me buy overpriced bundles instead of just buying what I need, etc.

I like to use JustNebulizers.com to buy all my neb parts.  I’ve even purchased two Pari Trek S systems from them over the years.  They always have a promo code to use, they always provide a promo code with your last order, and the one time there was an issue with my shipment it was immediately fixed.  It’s hard to argue with good customer service.  If you are having trouble deciding or knowing what filter you need, check out their Nebulizer Filter Finder or give them a call for assistance.

Some nebulizer compressors call for more or less frequent filter changes than every six months, but if you’re using it on a regular basis like I am it’s good to replace.  I’ve even replaced at 3 months before just because the filter looks dirty.  Remember dudes, you’re asthmatic and don’t want to be breathing this stuff in.

Lastly, don’t forget to file with your insurance.  Every plan has different rules about how often you can buy stuff, but sometimes you will be reimbursed and the cost will count towards your deductible and/or max-out-of-pocket expenses.

Asthma Attacks

It’s past 2am and as usual I’m extremely exhausted without being tired at all.  Does that sound crazy?  Well it should.  All the prednisone, breathing treatments, and low peakflow numbers don’t help either, but it’s least it’s not 5:30am yet like last night.

Asthma attacks are kind of hard to explain to someone who has never experienced one.  Another reason why they are difficult to define is because in ways they are different for everyone, not to mention the severity with which one suffers from asthma or reacts to particular triggers also varies.  To break it down into simple terms, that really apply to everyone, during an asthma attack your airways constrict and swell making it hard to breath.  Some people cough, some people wheeze, and there is a plethora of other symptoms or signs that may pop up specific to individuals.  Attacks, flare-ups, or exacerbations can last minutes, hours or days.  The important thing is to take them seriously and not let them get out of control.

When I was younger the asthma was still an almost daily thing for me, but it wasn’t like I was taking rescue meds on a daily basis.  Thanks to some of the record keeping I perform on my health (DOCTORS LOVE THIS) I can look back and see how things have gotten better or worse over time.  As a kid I would need rescue meds on a somewhat regular basis during certain parts of the year, but in the past 16 months or so I’ve had fewer than 10 days when I did not need rescue inhalers or nebulized breathing treatments.  On the days where I did need them I was doing anywhere from a couple inhaler puffs or one treatment, up to 12+ treatments in one day.

I’ve been out of the hospital for a full week and am doing much better, but I’m still having a “bad moment” at least every other day.  Last Saturday morning was the worst so far and I got myself into a situation where I was actually worried about myself.  I’ve been working through that morning off and on in my brain looking for things I did wrong or things I could improve next time.  I thought I’d share cause this is serious stuff.

My day actually started out not so bad.  I woke up not gasping for air, played some games on my phone, and was staying home with Chuck while Liz and Neville took care of some morning errands.  The two of them took off and I went about my Saturday ritual of soaping the beard and getting ready for my day.  Chuck was out in the living room holding Chewbacca the guinea pig and watching TV.  After I was ready and dressed, Chuck and I had plans to cook some sausage for breakfast.

I came out from the back of the house ready to start cooking and Chuck asks me where Chewie went, who was now laughing at us from underneath the couch.  Hindsight, being as awesome as it is, would have told me to just let the wookie win, but for some reason I felt the need to get it put away; not allowing him to defecate and micturate upon our carpet.  Ten to fifteen minutes later I was still on the ground with my face pressed into the carpet trying to get that loveable pet out from the couch when I realized I had made a serious mistake.

I should have just let the guinea pig hide under the couch for an hour.

Plan B went into effect as I let the wookie win and started setting up my living room neb for some albuterol around 9am.  I didn’t check any numbers but I knew being down in the carpet had gotten my allergies started which was now triggering my asthma.  Another ten minutes later and my treatment was over, but I wasn’t really feeling much better.  In fact, I was feeling worse.  This is when I started texting Liz to complain about the situation and decided to go find some benadryl at the other end of the house.

I left my phone on the coffee table and lumbered back to the master bathroom where I looked and looked but for some reason couldn’t find the benadryl in plain sight.

Probably after 70 seconds or so I gave up I started stumbling back into the master bedroom and basically collapsed onto my bed.  Over the next 30 minutes as I felt my airways become more and more tight, I tried to get up at least 5 times, only to fall back over.  Eventually I was able to get up enough to setup another nebulizer treatment with my bedroom nebuilzer that was less than three feet away the whole time.  My peakflow was down to 300 (yes this is go-to-hospital for me),put my pulse oximeter onto my finger, and watched my o2 levels desaturate down to 80%.

All of this was occurring while my four year old was watching a movie 10 yards away and I had no way to communicate with anyone because my phone was in the other room and I could neither sit up nor walk to retrieve it.

After my second neb in 30 min my PF was up to 340 and I made it back into the living room to grab some zyrtec and my phone.  Of course Liz hadn’t heard anything from me in 45 min or so and was really wondering what my status was.  I gave her a quick update, and continued to watch my o2 levels bounce between 83% and 88%.  That’s about the time I put a ton of nasal spray up my nose to help curb the allergies, put my CPAP on and hoped for the best.  This was feeling a lot like when both of my lungs partially collapsed last summer.  The difference being I was in a hospital then with two IVs in my arms, and hooked up to 6L of oxygen with 6 nurses, doctors and technicians staring at me.  Last Saturday I was all on my own with nothing but continuous positive airway pressure (CPAP), standard rescue meds, and a cell phone without the ability to talk loudly or clearly.

At some point during this Chuck decided to come join me in the bedroom and watch some TV on the bed.  I kinda knew she was there but was also a bit oblivious to what she was doing.  I ended up falling asleep and after a couple hours of forcing my airways open, my o2 levels were back up to 93%-94%.  While asleep I had a dream two of my medic friends, Andy and Art, were yelling at me to wake up which was about the time Liz got home and was checking on me.

What did I learn?

As crazy as it seems after the fact to verbalize I was seriously short of breath and constantly falling over while failing to take any medicine, in the moment I never think I’m that bad.  I’m the kind of person who discovered early on I can do most things I put my mind to.  This probably isn’t the best thing to have figured out with my asthma, but because of it and a great pulmonolgist as a kid – I kind of developed an attitude of invincibility.

  • I need to keep my phone on me at all times, especially if I’m on my own and in bad shape.
  • I should have quit trying to grab the rodent and just given up sooner.
  • I should have grabbed one of my MDI and taken 4 to 6 quick puffs, with a spacer, to help out in the middle of everything.
  • I probably should have asked Liz to get home immediately.
  • I maybe should have gotten to the nearest hospital ASAP.

This is not what asthma is for many, but this is what asthma is for me.  It’s dangerous, unpredictable, sneaky, and (at times) concerning (for me).  I know there are plenty of people out there who worry for me and about me on a semi-regular basis.  I have amazing friends and great family who are constantly looking out for me and bending backwards to include me when it’d be easier to just let me be.  I’ve basically come to the realization that I’m lucky, blessed, or whatever you want to call it.  I’ve had many close calls where I somehow work through another asthmatic situation one way or another.  Even after 23 years since being diagnosed I’m still learning more about what this disease is, how it affects me, and how I can attempt to keep it under control.  It’s a life-long learning process.

If you have asthma yourself, try not to be stupid like me and get yourself into these situations.  If you are often around someone with asthma, try to recognize symptoms and signs for when they need help.  Liz has figured out what I look like, things I do, ways I act, etc that mean I’m in trouble.  Sometimes I’m clued in and other times I am not.  It’s important to stay calm, as hard as it is, while trying to work through an attack.  Sometimes people don’t take me seriously because I appear too chill.  It really helps though if you can relax just a little bit.

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Prednisone cataracts

Last summer after I was in the hospital for a few days, I noticed my eye sight was a little weird.  I had several ideas…the not sleeping and insane allergies gunking up my contact lenses seemed to be the best reason.  I also knew the crazy amounts of prednisone I was taking could possible be jacking up my blood sugar.  It turns out I was getting cataracts.

About a month ago I had my yearly checkup with the eye doc and found out for sure.  I didn’t even really think about the prednisone being a possibility, but the eye doc was certain.  There are six common causes for cataracts and one of them includes the long-term use of corticosteroids.

At face-value this would seem like a major bummer, but it definitely could be worse.  The good news is cataract surgery is quite effectively and not a huge deal like it used to be.  For now I just need to get stronger contact lenses and check in with the doc to make sure they don’t get worse.  At the moment they aren’t severe enough to warrant any immediate action.

One thing I did appreciate was my eye doc stressing to continue taking my medicine.  Obviously breathing is important and it’s not worth risking my pulmonary health over my eyesight.  There really wasn’t a chance of me stopping my medication, but I know a few who would freak out and do just that.