Archive for October 2013

New nacho strategy

I like nachos and cheese fries as much as the next guy, but I’ve never liked the clean-up part.  The other day I had the idea to heat up my chips in the toaster oven on parchment paper, transfer that to a plate, and then just throw the paper away when I’m done.  This eliminated:

  • Messy toaster oven pan
  • Metallic taste at times from aforementioned pan
  • Messy plate

I also gained toasted chips instead of room-temp chips or the slightly soggy chips from microwaving.  You could do the same in a conventional oven, but toaster ovens work more quickly.  The paper also allows you to pick up the entire “nacho” without scraping/scooping them out/off and effectively ruining your initial topping distribution.

As far as toppings go, I say the sky is the limit.  I try not to get too hung up on meat vs meatless, but I do hang my hat on a classy plate of nachos containing both melted, gooey cheese and shredded cheese.  Here are a few pictures of the latest nacho forays.  Ingredients include:

  • Chips
  • Pinto beans
  • Ground beef
  • Homemade nacho cheese
  • Shredded sharp cheddar
  • Diced onions
  • Diced tomatoes
  • Sour cream
  • Cilantro
  • Dried hatch
  • Dried habanero
  • Black olives

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Fall 2013: ER Vist #7

I should note this isn’t my 7th visit for this part of the year, but my seventh 2013 visit.  Things were going ok, until I ran into some snags with environmental triggers and needed to up my prednisone dose temporarily.  That was working pretty well until I dropped from 40mg to 20mg.  I was having increased night time symptoms and my oxygen levels haven’t been in the normal range like they usually are.  Last week I passed out a couple times at home.  I’m just glad it didn’t happen while out and about anywhere.  My weekend was a little rough as usual with most of my time just spent in bed or on the couch.  One of those things I’m almost always asked at work on Monday is how my weekend went, what did I do, what did I accomplish?  I usually give some non-committal answer because who wants to know that I only slept about 10hrs total, laid on the couch for 24hrs and watched 32hrs of television?

Monday was a little rough for me at work.  Liz was thinking maybe I should stay home but I needed to teach that afternoon.  I made it through the class ok but was constantly having to stop and breathe as I wasn’t able to get enough air out while talking.  It’s one of those things that can be hard to explain without having experienced it before.  I guess you could imagine trying to have a conversation while jogging/running too quickly.

Monday night was worse and Tuesday morning even more so.  Once again Liz was questioning my need to go to work and asking if I needed to go to the hospital.  That’s always a sign the inevitable is becoming obvious.  That morning I woke up with peakflows around 50% and my oxygen saturation under 90%.  Getting my morning meds and some albuterol in me usually perks me up, but by the time I was at my desk an hour later I was right back where I had started with my O2 bouncing between 87-92%.  I got another neb going and informed Liz what was happening.  I didn’t improve much at all so within an hour Liz had picked me up and gotten me over to my “Cheers,” aka the local hospital, where everyone knows my name on the night shift.  Even though this was early/mid morning, my nurse was someone I’ve seen several times before and the ER doctor on duty was one who had treated me earlier this summer as well.

I really enjoy working with medical professionals who take the time to listen and read.  This doctor knew I had been in there before and instead of doing the standard gamut of tests and imaging scans wanted to know what I thought would help.  We briefly discussed a few things and minutes later they started an IV with 125mg of salumedrol along with some ativan to try and relax things inside my chest.  On room air I was able to get back up to 95-96% for a while and then it started dipping back down to 90-93%, but it was better than when I arrived.  They eventually let me bounce around lunch time and I was able to spend the rest of the day resting at home.

The original taper for the day, plus the IV drugs and the modified prednisone I took later in the day got me up to about 200mg which isn’t exactly for lightweights.  I really hate the side effects of the drug, but it at least offers significant benefits for me.  Today I’m able to somewhat talk and walk around the house a bit.  I’m not constantly panting or looking for something to grab onto or hold.  Yesterday at work I went to fill a water bottle at the sink and had to find a chair to sit down while the bottle filled.  I don’t feel fine by any means, but I’m at least able to be up and moving around a bit.  Hopefully I can go back to work tomorrow and get a day in before I head back out to PA to follow up with my non-local pulmonologist.

More prednisone

Things were starting to get better for me the past few weeks as I saw my daily prednisone intake once again drop to 20mg and then 10mg.  I tried not to think too hard about getting off this love/hate drug as this whole summer I would get off this steroid only to get back on it or need to up my dose when it became too low.  Things almost seemed different this time and I thought I might actually get better before “Fall” hit.  I was wrong.

The weather started turning, mold counts were becoming ridiculously high and then the dreaded combining/harvesting began.  Living in the Midwest means you’re probably close to some form of agriculture, but I’ve always lived in sight, if not immediately next to fields.  When the harvesting begins there is a thick cloud of debris and dust that fills the air almost looking like smoke or dense fog.  All this stuff doesn’t really help anyone breathe, let alone someone like myself with respiratory issues.

I watched my peakflow averages drop 20-30% and my oxygen levels were consistently getting lower.  It wasn’t really until this past week when I passed out from my oxygen becoming too low that I realized I couldn’t keep ignoring this.  Liz really wanted me to go to the hospital, but I somehow convinced her not to take me.  I instead opted to get a hold of my PCP the next morning who got me a Kenalog shot and upped my prednisone taper from 5mg/day to a 40mg taper.  I think I’m experiencing side-effects of Cushing’s syndrome, but it’s nothing I haven’t been able to deal with so far.  The worst for me is lack of sleep and inability to think clearly most of the time.  I’d really love to stay home from work and rest, but I can’t afford not to work and the FMLA stuff is a much bigger pain for me than it’s ever been in the past.  Liz stopped by with Chuck the other day at work and took a picture of us.  I was a little shocked to see how awful I looked and that was me attempting to be cheerful.  As much as I try to hide how bad I feel, it’s obvious I’m not doing great.  I just keep checking my O2 and peakflow numbers when I feel worse because the last thing I need at work is to fall down, pass out or go into a full on attack.  It would really freak some people out.

My local pulmonologist has been saying I could be on a maintenance dose of prednisone for a long time.  I was really hoping that wouldn’t happen, but it’s starting to look more like a reality.  I emailed my new lung doctor to update on what’s been happening and she apologized for suggesting I taper as quickly as I did, which my local doc agreed to.  It’s not like it’s her fault and this occurred over the course of a month, not a week or days.  I’m heading back to Pittsburgh in a few days.  While I’m still on the dreaded drug, it is less than I was last visit.  Hopefully I can get some suggestions on treatment or ideas as to anything else that could be ailing me.

We’re not in Pittsburgh anymore

I’ve been trying to get albuterol for several weeks now.  You know, that most basic asthma medicine that everyone seems to have.  I don’t need inhalers, I’m running out of the nebulized form too quickly.  Most people I know with a nebulizer at home use it very infrequently, and when they do it’s maybe a couple times a day.  At one point this summer I was doing 10 treatments a day, which may sound excessive, but I was doing that many and more when I was in the hospital.  In August I inhaled 232 neb treatments and in September I did 210.  What that really means is I’m burning through the ampules much faster than I would normally receive them every three months.  I usually get 11-13 boxes of 25 whenever I order which just barely covers August.  Luckily I’ve tapered down to 3-4 treatments a day, but that doesn’t mean I’m not running short on albuterol.

My first step was to try and re-order from the mail-order pharmacy.  They told me I cannot order more until November 14th, and sometimes it takes two weeks after ordering for my medicine to arrive.  I then went to my allergist, who had originally written the prescription, to see if they could “fix it” for me.  I’m there quite often for injections and my conversation went something like this…

Me: Hey, I’m running out of albuterol too quickly and wondered if you guys could tell the mail order pharmacy I need more.

Nurse: Uh….ok, how much are you using?

Me: Well, right now I’m doing 6 treatments most days and I can’t re-order for another 7 weeks.

Nurse: <eyes get huge and skeptical look ensues> That’s too much.  Way too much.  If they say you can’t re-order, you can’t.

Me: Well, I’ve been pretty sick and have been in and out of the hospital.  I’m actually doing less now than I have been.  How am I supposed to get my medicine if I’m running out?

Nurse: <more crazy looks> Well, you’re just out of luck.

Debbie “the cool nurse”: What?  Of course we can get him more meds.  He’s been REALLY SICK this summer.

So Debbie the cool nurse writes a few notes down and talks to the doctor who calls me later to inform me anyone doing four neb treatments or more a day needs to be in the hospital.  Yeah, yeah…whatever.  So I call up my local pulmonologist’s office a leave a message saying basically the same thing.  He calls me back later to let me know I’m taking a lot of albuterol, which he told me to take, and I shouldn’t be doing this long-term, etc, etc.  He went ahead and sent in a new Rx for albuterol which should override the current Rx on file and everything is supposed to be taken care of.  Ten days later I still have no meds and mail order pharmacy has no recollection of ever receiving an Rx for me so pulmo re-sends the Rx.  Three days later I call up pharmacy again to check on the status and after letting them know what’s going on, they decide to just send me my albuterol early.  I have no idea why this couldn’t have been done before, but now they’re being nice.  The very next day my Rx from the pulmo magically appears and now they’ve left me a message all confused as to why I have two prescriptions for the same medication.

I looked at Liz and said, “We’re not in Pittsburgh anymore.”