Tag Archive for allergies

Another methacholine challenge

Methacholine challenges are not fun at all. They usually take about an hour and consist of breathing in methacholine, which causes a reaction in asthmatics, and seeing what happens. After each dose, spirometry is done to see how the patient’s breathing if faring. If your lung function reduces by 20% or more, you’re asthmatic.

I have now done four of these tests. Two of them have been negative, and two have been positive. Last week, my test was definitely positive. I don’t see my doc for a few weeks, but I assume he’ll agree with the results. Since my previous methacholine challenge last fall, I have been off all asthma maintenance meds. I was also off allergy meds for roughly two weeks this time. While asthma isn’t a preferred diagnosis to have, it definitely uncomplicates things.

Since the test I’ve been able to go back on all my meds, and I’ve started using Dulera again. I’m tracking peakflow numbers during this month and I’m guessing they’ll be trending upward. I think I was overmedicated on asthma meds for a very long time with other things going untreated or under-treated. It would be really awesome if my health could stabilize and I not end up in the hospital this summer.

Another round of allergy tests

So far I’m really impressed with my new allergy doc. He’s taking the bull by the horns, so to speak, and baselining everything. A couple weeks ago I had the giant-grid scratch test on my back, and this morning they followed up with subcutaneous testing on my forearms. The injection sites responded as expected. I had a lot of +4 with the hives measuring up to 20mm x 20mm. This time the nurse even put tourniquets on my arms after about 10 minutes to slow down the reaction. What was really impressive to me was how they contained the hives afterward. They rubbed my arms down with alcohol, sprayed them with liquid benadryl, and then gave me zyrtec. Other times with other doctors I’ve been sent out the door and told to take some benadryl if needed.

Next up I have a methacholine challenge. This will be my fourth one; the difference is I’ll be off allergy meds for a while. Usually they are adamant about stopping short-term and long-acting respiratory medications, but don’t mention anti-histamines. I’ve had both positive and negative results in the past, and medications I was taking probably had something to do with that.

Last summer/fall one of my pulmonologists decided I probably don’t have asthma based off a methacholine challenge, but not all the docs have been in agreement on the diagnosis. While tracking peakflow numbers, I’m going to start using Dulera again after the challenge and see what my numbers do over the course of a month. All the tests and what-have-you aren’t the most fun, but if we can prevent another “classic summer” filled with ER trips and being admitted to the hospital, it’s definitely worth the trouble.

Found a new allergist

So I finally had enough of the only allergist in town not responding to my needs to control allergic reactions. A friend at work suggested another doctor who is about 90 min away, but promised he was good. I made an appointment and got in this past week. I was quite impressed.

  • He used to work at Jewish National
  • He knows who Dr Wenzel is and greatly respects her
  • He wants to collaborate with my pulmonologists
  • He wants to run a bunch of tests
  • He wants to find out if there are other things I’m allergic to
  • He wants me back on xolair

This is what I’ve been asking for the past 3 years to no avail. My allergies not in check means my breathing is not in check, but anytime I mention “breathing” to my old allergist she shuts down. It’s quite frustrating. The interesting part of the story is the old allergist and the new allergist are colleagues and personal friends. I’ve been asked to just say I’m getting a 2nd opinion to not cause a big issue right off the bat. We’ll see how this works out.

Tree pollen is kicking me in the lungs

It’s definitely that time of year again. The trees are twitterpated and spreading their pollen all over the place with little regard if people like me even want their powdery, yellow/green gift. My nose runs, I sneeze, my eyes burn and swell; I cough, my throat hurts, my skin turns red, and I wheeze; I get headaches and it’s hard to breathe.

In talking with my lung doc he’s fairly certain I’m getting mucus plugs in my airways as well as swelling and inflammation. They’re trying to keep me off prednisone so for the time being I’m taking vitamin C, vitamin D, and magnesium. The magnesium seems to really help with the wheezing. I also picked up a couple incentive spirometers which I use daily to help “pop my airways open.”

It’s kind of like breathing exercises and would benefit anyone. Many recognize these as “those things you breathe into at the hospital.” Right now I’m keeping one at work and another at home. It’s kind of like a reverse peak flow meter. It’s interesting to see on the days I feel really bad I’m only able to inhale 1500 to 2000 ml and on good days I’m able to do more around 3000 to 3250 ml.

My larger goal in all this is to stay out of the ER/hospital. There have already been times I probably would have gone in several years ago, but now with my added experience and know-how, I’ve learned how to deal with it at home. I think I’ve had six times so far in the past month where my allergies have become so bad to significantly affect my breathing. I’ve found the trick is to take lots of antihistamines, relax, and chill with my CPAP on for as long as possible. It has resulted in some pressure sores/lesions on my face, but I’ve figured out how to avoid those as well. How’s the allergy season going for you so far?

Automated Pollen Counter

I came across this site today. It’s a project where a team is working on a device to have in your home that detects amounts of pollen and other particulates in the air. This could help those sensitive to air pollutants to know what is bothering them. I think it would be really interesting to have that kind of data, but maybe not at the $350 price tag listed in their survey. I happen to be allergic to almost everything outside so I’m not sure how knowing those allergens are present would help me. What’s really interesting is how this data could possibly supplement data collected nationally. It’d be kind of like a home weather station, only an allergy station.

http://pollensense.com/

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.

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.

lebowski-opinion

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.

Pari LC Sprint and filterPari LC Sprint and filter

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.

keep-calm-and-wheeze-on

Hospital Recovery

So once you’ve gotten bad enough and have given into the Dark Side, admitted defeat, or were just plain taken to the hospital against your own will..what happens afterward?  Getting back to normal can be just as hard as the exacerbation which got you there.  In some ways you have to not be stupid and in other ways you just need to be a little smart.  Here are some things I’ve figured out the easy way and hard way.

Stay on top of your meds.  Even though you most likely feel craptastic after getting out of the slammer (aka the hospital) you’re most likely feeling somewhat better because of all those intravenous steroids they pumped into you.  This past Monday I had 350mg of steroids along with an IV magnesium sulfate drip and was hobbling on sunshine for about 12hrs.  They instructed me to nebulize duoneb no fewer than 4x/day and take extra albuterol if needed.  I thought I was doing alright, I even nebbed some albuterol in the lobby while waiting for a ride home to get a jumpstart on things.  Twelve hours later though I was gasping for air, sitting on my bed, and attempting to get some medicine into my airways with Liz threatening to call 911.  Don’t worry, it all ended well, you just gotta stay on top of things.

Use the buddy system.  I just mentioned Liz threatening to call 911.  In a way, it’s her two-edged sword of seeing just how bad I am while also being prepared to get me some help.  I have a major aversion to ambulance rides so this kind of threat will perk up my responsiveness especially if her cell phone is in hand.  Seriously though, make sure someone is checking up on you and that you can readily get a hold of someone if you need to.  If you’re breathing is bad enough, you might not be able to tell a 911 operator what you need and cell phones don’t always easily tell emergency medical services where to find you.

Keep yourself busy.  This may sound easier than it really is, and mental health is a must.  Sometimes I’m awake for days with no end in sight, or just by myself for hours and hours at a time.  Find a hobby, write a blog, watch movies, read books, knit scarves, build models, repair a toaster, or add HBO to your TV line-up and watch all their original series.  Whatever it is that interests you, make sure you have something to do.

Stay active.  Take this one with a grain of salt, but my point is to not become too lethargic and lose what cardiovascular fitness you had before all this started.  I’ve had weeks where I’ve only gotten out of bed for bathroom breaks and showers before.  I understand when you’re pretty limited in your activity.  No matter how bad I am though, I try to make sure I push myself a little every day.  Sometimes that means walking to the mailbox to send those Netflix DVDs back or just sitting on the couch instead of lying in bed.  Sometimes that means cooking a meal and doing my laundry, and some days all I can really accomplish is going to the doctor and then back home.  Just be sure to not lie around all day every day, and have some attainable goals in mind for getting back to the usual stuff.

Find a community.  With any chronic illness, it can be hard to relate to your healthy friends, and it can be hard for your friends to relate to you.  You need to find some friends to complain to, commiserate with, attain advice from, and share your experiences with.  You might check with your doctor’s office, local hospital, or American Lung Association for any support groups.  You might find a group on your social media of choice, or you might even have a group of friends already with whom you can talk.

Don’t be afraid to call your doctor.  I hate going to the hospital and being in the hospital, but it’s even worse if I have to go back.  Similarly to staying on top of your meds, keep an eye on my peakflow numbers, oxygen saturation, when and what medication you’re taking, your general symptoms, and your gut feeling.  Worst case scenario is you’ll call your doctor’s office or the answering service and be told it sounds like you’re ok for now.  The real worst case is you not doing anything and ending up back in the hospital, or lying on the ground in your house trying to crawl to wherever you left one of the 5 inhalers and 3 nebulizers.

What tips do you have?  What has worked for you?  I’m always looking for more tips and tricks to getting back to normal as quickly as possible.