Tag Archive for allergies

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.

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

Prednisone test

Today my prednisone starts tapering again.  This will be a test to see if I’m really improving or not.  So far I’ve stayed out of the hospital for just over a week, but I’ve also been on a high dose of prednisone for eight days.  Over the summer every time my taper has dropped down to a certain point everything flares up again.  There are some good signs though like I’m starting to sleep again and feel tired, and my voice is also sounding slightly normal.

I had the chance to consider returning to work this week but decided not to.  It’s just not worth it.  I’m still not able to be up on my feet all day.  Just doing what little around the house still leaves me worn out and exhausted.  I’m continuing to have bad spells at least once a day and I know just walking and talking at work would be detrimental.  I need to return ready to work, not dragging myself around and panting like I just ran a 5K.

My albuterol use has also decreased, which is wonderful.  I did over 200 neb treatments last month alone and would love to eventually get down to just four a day in the next couple weeks if possible.  For now I need to continue focusing on resting up, doing appropriate amounts of physical activity every day, stay on top of my school work and be ready for SARP.

Hooray for weather

In the midst of my summer-long asthma exacerbation I thought would never end, I finally caught a break courtesy of Mr Weather.  While it’s been hot and hotter for weeks and pollen/mold counts have been off the charts, we finally caught a cold front which brought the temperatures down 30-40 degrees and the ragweed is taking a break.  It may not seem like much, but for someone like me with horrendous allergies, it’s a Godsend.

anchorman_brick_weather

My Peakflow numbers have been stuck mostly in the 300 to 500 range for weeks and yesterday I hit 590 for the first time since July after a nebulizer treatment.  Now this temporary high was short lived and I was back down to 450 an hour later, but I’m still marking 590 as the high for the day.  On top of all that, my oxygen saturation leveled out to something reasonable and I only used albuterol 6 times where I’ve been doing 8 most of the week down from 9 or 10 previously.  It’s the little stuff that counts.

Today hasn’t been as great.  It was a little warmer, the plants were more active, and I had a bit of an allergy attack.  I did get 8 hours of sleep though, in shifts.  I think that’s the most I’ve slept in over a month and even though I woke up at 380 and 400 respectively, taking the edge off the exhaustion was totally worth it.  I need to see how I am tomorrow before deciding on work for Monday.  I’d love to be back, but I made the mistake of going back too early several times earlier this summer and paid for it dearly.  Other than that I’m just counting down the days until SARP.

Summer 2013: ER Visit #6

Another week, another trip to the ER.  They’re really starting to know me there.

  • Our friend Haley got me checked in at the registration desk
  • The triage nurse remembered me
  • The nurse who got me into a room has seen me at least 3x this summer
  • The respiratory therapist has helped me 3x now I think
  • The x-ray tech has scanned my chest at least once before
  • Also recognized Dr Wilson who I’ve seen before and has an EXCELLENT bedside manner

So why aren’t you better yet?

This is an excellent question I’ve heard from a few people and have also asked myself.  This whole past week has been a rough one with asthma attacks on five days out of seven.  One was caused by 2nd hand cigarette smoke and the rest were allergy/weather related.  All five times this past week I’ve had to decide whether or not to go to the ER.  My peakflow numbers were at 50% or below, my oxygen saturation has been 89% to 93% pretty consistently, I’ve had trouble walking and moving around, and I’ve been mentally fuzzy.  These are all good reasons to seek medical attention.  Tonight was slightly different because my nights are usually bad between 10pm and 4am, and this time my symptoms fired up around 7pm.  I was short of breath, experiencing varying degrees of chest pain for different reasons, coughing, and my nebs were working but not lasting long.  These combined with my gut feeling of “it’s going to get much worse” in the next hours are what made the decision for me.

The ER was packed on arrival and we later found out that was the least busy it had been since 1pm.  Liz and I waited a little before being taken back, but we heard others being told there was a three and a half hour wait.  Fortunately I bring all my meds with me so I just hung out and nebbed until it was my turn.  I don’t know if it’s because they recognize me, I’ve been in so many times this summer or I’ve just learned how to communicate effectively…but lately I tend to get asked what I think should be done.

RT: Aw man, you’re back again??  So what do you think we should do?  Albuterol?  Duoneb?  Want some pulmicort?

I had just done an albuterol in the waiting room so we followed up with some duoneb.  It helped, but didn’t open me up much and I quickly regressed to where I was earlier.  I was glad this happened because it made a point as to why I’ve been nebbing 8 to 10 times a day and the relief just isn’t lasting.  They got me started on some salumedrol, as usual, and then followed up with a pulmicort neb.  Pulmicort is a steroid which addresses swelling in the airways and is different from bronchodilators, like albuterol and ventolin, which help address the muscles constricting around your airways.  This really helped to open my airways and allow me to breathe more deeply for a longer amount of time.  In the past I’ve had a combo inhaler (advair, symbicort, dulera, etc) along with another steroid inhaler acting as a booster for maintenance.  This summer I’ve been wondering if taking pulmicort or asmanex in addition to the dulera would help.  I’m adding this to my list of questions for the pulmonologist.

What next?

Lots of taking it easy, that’s what.  I’m working on some good questions for my lung doctor when i see him this week and am counting down the days to Pittsburgh.  I’m not expecting to be magically cured in Pennsylvania, but I am looking forward to another opinion and getting some of these tests done that have always been on the extreme/unnecessary list.  Maybe they’ll find something new and at the very least I’ll be contributing more data towards new treatments and understanding of how asthma functions.

I was glad to see the nebulized steroids make such a difference tonight.  That would probably do the trick for me at home when I’m up all night not being able to breathe deeply enough.  We also noticed my oxygen saturation dipping to 90% and below most of the time when not on 2L of supplemental oxygen.  This hasn’t really been as much of an issue before and I wonder if that means anything.  For now we’ve once again bumped up my prednisone taper and I need to return to the ER if things become bad enough to warrant another visit.  I also talk to my allergist about doubling my Xolair injections starting this month.  With allergies being so bad and mold season around the corner this might help me get a head start before leaves are falling and the combines are running.

The Dangers of Outside

I once had an Eastern European pulmonologist who spoke with an awesome accent and reminded me of Olek Krupa in The Italian Job (2003).  He was a very nice and caring doctor, but I had this feeling I should never cross him.  Back in 2007 I was in his office for the who-knows-time after another exacerbation.  This time I had come home to the smell of smoke outside, the local school still burns their trash, had an asthma attack and barely made it into the house.

Have you ever thought about getting one of those bubbles to live in?  You know, like that Bubble Boy movie?

Of course he was joking, but my doctor had a point.  Between my seasonal allergies and hyper-reactive airways, it sometimes wasn’t and still isn’t worth going outside certain days.  While living in a “bubble” or working in a “clean room” environment would probably be key for me and many others, it isn’t plausible, feasible or realistic.  The important things to focus on are identifying what to avoid and when to stay inside.

Allergies come in both the indoor and outdoor varieties.  Sometimes it’s easy to know what will cause you an allergic reaction, but it never hurts to see an allergist and be tested if this is a significant problem for you.  I’m allergic to most local trees, grasses, ragweed, dust, dust mites, most molds/fungi and cats.  Realistically I can encounter any of these inside or outside depending on the situation.  I’ve had to identify homes of friends and family I cannot visit, stores and buildings I cannot enter – there’s even a movie theater in town I don’t frequent because there’s either dust, water damage or mold in there.  We keep our doors and windows shut during most of the year, run our air conditioning and have a True HEPA filter that helps to keep the air clean.  Be sure to keep your furnace filter changed and stay on top of all your duct filters as well.  Cleaning can be a chicken-and-egg situation if dust is an issue.  Obviously stirring up dust by cleaning will aggravate your condition, but waiting too long to do it, or avoiding it completely, will just add to the amount of dust in your home making you sick.

Irritants are different than allergies, but can still make you feel just as bad when encountering them  Examples can include:

  • Smoke – wood, trash, tobacco, etc.  These all contain various particulates, chemicals and other “stuff” that can irritate and inflame your upper/lower respiratory system.
  • Smog and air pollution – while this problem is often confined to heavily populated areas, it can travel or become worse when combined with weather.
  • Strong odors – perfumes and colognes, cleaning chemicals/supplies, cooking smells, sewage, body odor, insect sprays, industrial glue, paint, etc
  • Particulates – tiny particles in the air such as chemicals sprayed on crops, dusts and powders, soot, etc.  These tiny particles of matter can be either solid or liquid and exist in the atmosphere.
  • Weather – I’m including weather separately below, but wanted to point out thunderstorms can often bring unwanted guests in the form of allergens, pollutants, particulates and anything else that was stirred up on its path from Point A to you.

Weather changes and patterns show up in the form of cold winter air, hot summer air, humidity, pressure changes, etc.  I have friends whose worst time is Winter with the cold air, but I can have just as much trouble with the heat and humidity in the summer.  The important thing to know what affects you and how prepare.

Cold and flu season can be hard to avoid in public places and work when simple cold and viruses seem like no big deal to people.  A pesky cold for an average Joe is like bronchitis for us, and bronchitis for them can be like pneumonia for us.  I’ve never found a great way to breach this with co-workers, but it’s about the same as just being out in public.  Try not to constantly touch your face, wash your hands, and avoid the coughing/sneezing zones if possible.

agoraphobia-2012

So last night I was feeling “ok” and almost forgetting I had been in the hospital just two days prior.  The idea was brought up to go get some ice cream at a local place in town and that seemed like a great idea.  It was neither hot nor humid outside, pollen and mold counts weren’t too bad, and I had been staying on top of my breathing treatments.  So we drove the 5 miles, got our ice cream and took some seats on the picnic tables farthest from the ice cream hut.  This is mainly to avoid anyone who may start smoking in line or in their cars immediately next to the building with their windows open.

Not too long later I caught a couple whiffs of smoke but it was pretty infrequent.  I’m guessing we were 40 yards away or so from the building, but there was a light breeze bringing anything from that direction our way.  Liz wanted to know if I should leave, but it wasn’t constant and I decided to stay.  Right about the time we were ready to leave, there was more smoke and Liz decided we needed to get out of there.  It’s a good thing she’s around to notice this kind of stuff because by the time I got into the car I was already losing my voice and hurting to breathe.  Two albuterol nebs later I was back up to about 430 on the PF and hovering at 92% O2 saturation.  I spent the next 7 hours doing treatments before I could finally fall asleep and have been completely exhausted all day.  This is what it’s like to be a severe asthmatic.  All I wanted was some ice cream and the people smoking weren’t even smoking in a non-smoking area or anywhere near me.  It’s just what we have to deal with on a regular basis.

New research on cat/dog allergies

New research has shown why some of us humans react so strongly to cat and dog allergens.  Up until this point it wasn’t exactly understood what the big deal was.  Well we now know what the big deal is – LPS being present with cat protein Fel d 1 and the TLR4 receptor signaling DEFCON 1.

Yeah….I have no idea what I just said.  You better check out the actual article to find out more – http://www.cam.ac.uk/research/news/new-research-reveals-how-cat-dander-triggers-allergic-responses

cat-allergies

Another ER visit

This summer is truly turning into record breaking asthma for me.  As of today:

  • I have 22 days of prednisone under my belt with another 27 on the way
  • Two courses of anti-biotics
  • Two ER visits
  • Four PCP visits
  • Three Pulmonology visits
  • One Allergist visit
  • About 120 nebulizer treatments

Wednesday was brutal outside.  The temperature hit at least 90F with humidity to add to the heat index.  I know the heat index isn’t “real” but it sure does affect people like myself with pulmonary conditions.  I’ve been trying to figure out a better parking solution at work because the closest lot with my level of parking access is 880 walking yards away.  When I’m feeling ok, that mile of walking every day is great, but I’m not ok right now.  Ironically my doctor wrote a letter asking for a parking accommodation and later that day I ended up in the ER due to an exacerbation from walking around campus.

Trips to the emergency room or emergency department are never enjoyed or wanted.  I fancy myself as “tough,” never think I’m that bad and in the moment usually suffer from “asthma brain” fueled by a lack of oxygen.  It’s good to have someone around to make the decision for you or easily identifiable metrics defined to know when to go.  Walking around outside that day was causing my lungs to ache with every breathe which eventually led to dull, then sharp pain.  Around 6:30pm I’d rank my inhalation pain around 7/10, was shaking uncontrollably and had tears streaming down my face.  And that’s ok cause strong men also cry…right?

Whenever I recount stories like this, they sound ridiculous and of course I would try to force someone else to seek medical attention if they were in my situation.  What I had going through my head that night were things like:

  • There’s no way it can last that much longer
  • I’ve been worse before (it’s true)
  • I’d rather wait to incur more medical costs until after 7/1 when I have more FSA funds to pay for it
  • I’ll be ok

My wife started threatening to call an ambulance, and while I do respect all my paramedic friends, I hate taking ambulance rides.  Eventually I agreed to go if she would drive me, and she did.  I had already done four nebulizer treatments at home that day and by the time I finally went to the ER, my pain had dropped from 7/10 to about 4/10.  With the heat, humidity and thunderstorms, the ER was packed, however, since I’m a bit of a frequent flyer they recognized me when we walked in the door and let me cut in line.  As they were wheeling me to a room I began to notice all the people standing/sitting in the hallways being treated so I was grateful for a bed.  They got started on me right away with the standard tests.  The “asthma” wasn’t bad, I just wanted to punch a wall every time I breathed.

The respiratory tech was a good one that night.  Instead of answering a bunch of questions, I handed over my notebook which is when they start taking me seriously.  I’m basically on high doses of every type of maintenance and rescue medication in addition to the anti-biotics and prednisone I’ve been taking.  The attending physician ordered blood work, a chest xray and the dreaded ABG.  This was the first time a respiratory tech performed a blood gas test on me, usually they bring in a phlebotomist and it goes horribly.  This dude got it right away and I can actually move my wrist – major bonus.

Unsurprisingly they didn’t find anything out of the ordinary, well that is from what’s already known, they got me patched up and sent me home.  They did pump me full of morphine though which really made it easier to breathe.  I’m sure Rick James would tell us it’s one hell of a drug, but that’s a bit rhetorical.  At this point my body is just too tired, stressed and worn out from 6 weeks of asthma and not sleeping.  I need to start seriously looking out for myself the rest of the summer to avoid any more complications.  I sometimes joke about people dying from asthma, but it’s true.  I’m fortunate enough to have a special lady friend looking out for me, a good team of doctors and a boss who is accommodating.  I don’t know how I became so lucky some days.

Turns out trees really are important

I have a love/hate relationship with trees.  On one hand they filter huge amounts of pollution from the air, but on the other hand they produce pollen which makes my eyes swell and air sacs hurt.

http://www.pbs.org/newshour/rundown/2013/06/can-lack-of-trees-kill-you-faster.html

In the past ten years or so 100 million trees have died due to a beetle in the MidWest and Eastern sections of the US.  A rise in cardiovascular and pulmonary disease has been directly linked to the loss of these free “HEPA filters” nature has provided.

I recently read an article labeling Louisville, KY as America’s fastest warming city.  The main contributing factor to this rise in temperature is a lack of tree cover.  Who would have thought shade was that big of a deal?  We’ve in the process of taking down some dead trees where we live.  I want to make sure we plant some new ones to replace the air filters.