Archive for Life

They lost my appointment

Yesterday I went on over to my lung doc’s office for my previously scheduled three-month follow-up.  It was handy because we were needing to talk about my Pittsburgh visits, testing for VCD, my prednisone in-take, and this bronchitis thing I’ve been trying to kick.  When the elevator doors opened there was a line of 8 or so people waiting to check in and a sign asking us to please excuse the extra wait as they try to figure out their new computer system.

Eighteen minutes later I’m next in line and I hear the people in front of me have my appointment time with my doctor….odd, right?  They ask me for my birth date and name, which pulls up my “account” and I’m told, “Ok, so you have a 1:15 with Dr…., I mean, you have nothing in the system.  Why are you here?”  Sounds fishy, right?  How else would they have known who I’m seeing and the time of my appointment if it hadn’t popped up on their screen?  My appointment was originally for the previous day at the same time, but someone called me to move it to the next day.  According to their computer I have an appointment in the middle of December, but I don’t want to wait six to seven weeks.  I’ve seen similar situations happen to others before and you basically have two decisions: you can flip out and look like a jackass, or you can calmly work out a solution.  I decided to not make an idiot of myself and see if my doc had any availability this week or if I could see the nurse practitioner.  Turns out I can come back in a couple days to see the NP – problem solved.  It’s hard to always know what to do, how hard to push, and what really is possible.  Just be sure to stay calm and just ask.  The worst that can happen is they say no, but never be afraid to advocate for yourself.

On my way out the thought popped into my head, “what if this bronchitis stuff clears up by Thursday and my lungs are clear and they want to know why I’m wasting their time?”  Then I remembered I’ve been sick since May, I’m still hacking out hockey pucks and no, I will not be better by Thursday.  My initial z-pack from the Urgent Care clinic is gone and the last thing I need is to let this linger and turn into the p-word.  No one has time for the p-word.

Bronchitis

Ugh

It’s that time of year again.  The temperatures are dropping and winter is coming.  The plants that produce all those horrible allergens slowly go the way of the buffalo and my biggest fear turns to all the perpetually sick people who tend to surround me everywhere I go.  It’s not like I have one or several people to blame, it’s really society in general, and working at a university doesn’t help me avoid germs.  There’s only so much hand-washing, avoiding door knobs and staying away from crowded areas before I eventually come down with something.  Last week my allergies went berserk on our way to Pittsburgh and I just stayed stuffed up/congested all weekend.  Monday night I felt like I might be getting a cold/virus and then as the week progressed I watched as I started coughing blowing out multi-colored snot/mucous/phlegm and eventually went to an urgent care facility Saturday morning to be diagnosed with acute bronchitis.

I “love” trying to explain things to doctors who aren’t really paying attention.  I realize I was at the urgent care and these aren’t my normal doctors and nurses, but when a guy walks in with obvious breathing issues, hands over a list of 15 medications and tells you “I have severe asthma” you’d think the next question wouldn’t be – “ok…do you use an inhaler for that?”  My long list of medications, clearly separated into maintenance and rescue categories, has several inhalers listed.  The doc didn’t really know what to do with me.  She also wasn’t paying much attention until I said I’ve been to the ER/admitted seven times since June and have been on prednisone since May.  Her eyes got really big and then she wanted to know if I’ve ever been intubated before, etc, etc.  I eventually left with a 250mg z-pack for 5 days and was told, “you’re probably going to be very uncomfortable for a couple weeks.”  I figured it wasn’t worth saying I’ve been very uncomfortable for months.

The weird part is noticing how this is affecting me differently than the other flares I’ve had these past months.  I’m actually breathing much, much better than I was in August, but am still struggling.  I’m just not bad in the sense that I need to be on supplemental oxygen and monitored constantly.  At this point I’m still feeling the need to attempt work due to the ridiculous FMLA situation and I don’t really have any sick/vacation time to use up.  Six months ago this would be a stay-home-no-brainer, but comparing how I am now to how I’ve been in the recent past…this isn’t that bad.  I’ll really have to make a judgement call in the morning, but the good news is I happen to have a three month follow-up with lung doc #1 scheduled for Tuesday so we’ll see how my lungs sound and if I need upgraded to levaquin or something more heavy duty.

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.”

Balancing asthma and life

Most of the time I feel like I’m able to balance my breathing with general living.  I may have to avoid going places or participating in certain things, but with the exception of flare ups, I like to think I do an ok job.  This summer has been the exception.  I was doing pretty well this past winter and spring until May.  Since then everything has been a bit of a blur.  I haven’t been to work in weeks and I’m also taking an online class at the moment.

I haven’t “been to school” for almost 10 years so while it’s a little bit of a culture shock getting back into the groove of things, it’s also not too bad because I don’t have to physically show up to class somewhere.  Most of the time this entails logging into the course management system at the beginning of the week to find out what discussion questions I want to answer, and then coming back later in the week to respond to my classmates.  Now that we’re into the semester there are more substantial assignments due, like the paper I’m getting close to being a week late on turning in.  I didn’t actually get a late start on the thing, I had my topic and key points figured out and found 20 peer-reviewed academic articles to use as sources when I was only required to have 5.  I of course had grandiose plans to knock it out on the way to Pittsburgh and while I was there, but that obviously didn’t happen.

I think one of the reasons I’ve been having trouble making significant progress is the discussion questions don’t take a whole lot of brain power for me to answer.  I read the chapter(s) from the required textbooks, check out the question, think about it, re-skim a section or two of the text and type away.  Writing this paper is requiring some higher-level brain function which doesn’t play well with my short attention span due to:

  • Constantly wishing I was lying down instead of sitting up
  • My oxygen saturation levels dropping whenever I’m up and moving around
  • Watching the clock to make sure I don’t wait too long before taking my next dose of meds
  • Is this a…what day is this?

Trying to work on the paper in Pittsburgh was almost laughable because all day every day my body was being stressed out doing what I like to call respiratory acrobatics.  Even if someone didn’t have trouble breathing, I think a normal person would be worn out from all the huffing/puffing, inhaling/exhaling, breath-holding and what have you.  To top it all off, I had to refrain from taking most of the maintenance medications that keep me going day after day.  Then every time they degraded my breathing to the pre-established stopping point, I’d be pumped full of rescue medication that gets me back to an acceptable level but also comes with a list of side effects that aren’t conducive to critical thinking.  I was telling my friend Steve I was in a constant state of sweaty or extra sweaty the whole time.  Even after we were finished at the hospital for the day I continued feeling like I was still in a constant state of “cool down” into the evening.

The good news is I’m still slowly getting better.  I was given the option to start tapering my prednisone early but decided to finish out my current dose before dropping down.  It was a good decision because just going to the grocery store with Liz yesterday and walking up and down a few isles left me sweaty, worn out, and having some serious trouble getting to sleep last night.  Even now, I’ve been lying down for the past 20min, my resting heart rate is over 100 and my O2 is 93-95% which is better than sitting up or moving around.  I’m about halfway done with this paper and am hoping to wrap it up tonight or tomorrow.  I’m guessing I should probably get my in-house composition expert to check it out before I turn it in.

My new doctor

One of the goals of SARP is to identify and better understand the different types of asthma, as well as finding ways to better focus treatment.  Check out this video BreathinStephen recently shared.

Yep, that’s my new doctor.  I think I’m in good hands.  If you’re a fellow asthma sufferer, I can’t recommend participating in SARP enough.  There are seven locations around the United States and hopefully one is close to you.

SARP visits 1 and 2

After thinking, “I really need to go get checked out at an asthma clinic or center,” for a few months and finally deciding I wanted to participate in SARP at the Pittsburgh location, I really had no idea for what I was in store.  The past 20 years have been frustrating for me as an asthmatic, trying to find doctors who take the time to really understand my struggles without dismissing me, and who don’t dismiss me/give up up when I don’t respond to standard treatments.  Every employee we’ve encountered at UPMC has been the nicest, kindest, most thoughtful, caring, understanding, knowledgeable, educating, sympathetic and empathetic medical professionals I’ve ever experienced outside of a couple individuals or personal friends.  I cannot say enough for the people here and the personal care and attention we’ve received this week.

A few examples:

  • I have the personal emails and phone numbers of my doctors, nurses and technicians who have encouraged me to contact them for any reason I feel is important.  I was already receiving 12hr turn-arounds on emails sent over the weekend before we arrived.
  • Liz needed to jump online in order to meet with her class during my tests yesterday.  The research coordinator made sure Liz was online and settled in a quiet waiting room, even offering her own computer if Liz’s had any issues connecting to the hospital network.
  • Absolutely everything has been explained to me in great detail with every opportunity to ask any question I desire.
  • I haven’t had to defend or explain any of my symptoms or medical history.
  • I’ve never once been told, “You’re not normal,” “We’ve never seen/heard of this before,” “We don’t know what to do,” or “I don’t think you really have asthma.”
  • I haven’t had to talk to anyone who understands only asthma and not any of the secondary, accompanying conditions and diseases.
  • Everyone has been interested in Liz and I as people, not just my test results or medication list.
  • The main nurse and asthma educator spent as much time as possible in between tests to ascertain what my asthma is like, how I manage it and to inform me of anything that has come about in recent literature and studies that could improve my status quo.
  • No one has acted like my breathing difficulties are all in my head just because I don’t respond well enough to two puffs of albuterol or some prednisone.

Tomorrow I see my new doctor who has been out of town these past two days.  We’ll go over the test results and try to make a plan of action of what to do next.  I have not found a single negative thing about this doctor online.  Everyone has only amazing, not good or great but amazing, things to say about her.

For anyone out there suffering with asthma needing answers, I’d highly suggest checking out the Pittsburgh Asthma Institute or a similar facility.  I think it’s fair to say you’ll have a great experience.  If you do end up coming here, definitely check out Family House for a place to stay.  It’s at least half the price of any hotel you’ll find in the area, the staff are extremely friendly and helpful, you have access to an Iron Chef kitchen area and there are shuttles to take you between Family House and any of the UPMC medical facilities.  It’s not a five-star hotel, but it has everything you need with perks you won’t find elsewhere.  If you are seeing any doctor or receiving treatment in the area requiring you to stay overnight, you are eligible to stay at any of their locations.

100 worst cities for allergy sufferers

Do you have seasonal allergies?  Do you know how your city/region ranks?  Check out AllergyCapitals.com’s 2013 list of the worst cities for allergy sufferers.

1. Wichita, KS
2. Jackson, MS
3. Knoxville, TN
4. Louisville, KY
5. Memphis, TN

96. Daytona Beach, FL
97. Colorado Springs, CO
98. Stockton, CA
99. Sacramento, CA
100. Portland, OR

The Breathe Easies

This isn’t breaking news, but I just came across some new PSAs geared towards children involving a puppet band named The Breathe Easies.  It’s part of an asthma education program heading up by the Ad Council and the Environmental Protection Agency.  The videos and more can be found at NoAttacks.org