Santa: What kind of music do you like?
Chuck: Lady Gaga
Santa: OH MY!
Liz: But what do you like to dance to?
Chuck: IRON MAIDEN!!!
Santa: Your dad must be some kind of rocker.
Archive for Life
A couple months ago while I was talking to a SARP research nurse, she was asking me a bunch of questions about medication, triggers, experiences, etc. We started talking about nebulizers and she asked how I clean mine. I said I rinse/wash them once a day and then once a week clean them in vinegar. While this was the preferred method for “deep cleaning” your equipment, there has been some recent research that shows soapy water is actually more effective.
So I’ve switched from buying giant jugs of white, distilled vinegar to putting my nebulizer pieces into a plastic bowl and letting them soak in hot, soapy water for about an hour. I’ve had people tell me they can’t wash their nebs in vinegar because then it tastes like vinegar or they feel like they’re inhaling vinegar fumes. I’ve never had that happen, but I would also thoroughly rinse everything after the vinegar soak.
Unfortunately this doesn’t work for my CPAP cushions because our dish soap is anti-bacterial which breaks down the silicone or whatever the comfort gel blue is made of. I still use liquid baby soap for that. No matter how you clean your durable medical equipment, the important thing is to actually clean it. Using a dirty nebulizer isn’t going to help you at all. I’ve seen old parts with mold in them, and if you happen to be sick with something bacterial or viral, you might be re-infecting yourself. It’s kind of like what they say about getting a new toothbrush after you’ve been sick.
This may not sound like a big deal…
I didn’t take any albuterol yesterday.
No, I’m not lying, and yes this is kind of a big deal. Last time I didn’t puff an inhaler or take a neb treatment was April 30th. This has officially been the worst medical/health/breathing year of my life to date. Most years the fall is a little rough until the cold weather comes, the plants die, and the farmers quit working in their fields. That time of year has started and the cold temperatures have definitely brought some relief. My allergies have been going a little nuts being in some dusty rooms here and there at work, but other than that I’d say I’m not too bad.
My next goals are to continue to increase my physical activity without overdoing it, and to continue to taper off the prednisone. As much as I’d like to go running or lift some weights, appropriate levels of activity for me are things like walking, one flight of stairs at a time, using 25lb dumbbells at home, and slowly riding my bike. Hopefully I can continue feeling not so bad and get back to feeling normal throughout the winter.
Today I saw a new ENT doctor. I wasn’t really sure how it was going to go. A couple years ago I started seeing a different doctor in the same practice and then quit going due to insurance, not happy with the doctor and too many bad customer service experiences with the staff over the course of a week. Now I’m really needing to re-establish a relationship with an ENT and this is the only practice close to where I live. One handy aspect of it is they’re two floors up from my pulmonologist so it’d be easy for them to chat and compare notes. I ended up calling a few weeks ago to find out my doctor had left the practice so they needed to transfer me to someone else. I’m not sure what the other doctors are like there, but I feel like I got a good one.
Dr S was extremely friendly and personable. He was interested in what I had to say and actually listened. He also didn’t shove his fingers in my mouth or jerk my head around by my tongue like the last one did. Dr S tried to get a handle on my history, what I’ve been dealing with, what my current treatment is and figure out what he could do to assist. I have five doctors so it’s nice when one wants to be a team player. He checked me out, scoped my vocal chords and I’m going to be following up for a video laryngoscopy. I felt like I was in good hands after the visit and am confident he’ll be a contributing factor in my treatment.
Later today I cooked a pot of pinto beans. This may not sound like a big deal, but it takes at least six hours from start to finish after you sort, clean, soak and cook the beans. I used to cook all kinds of things all the time. Saturdays were often dedicated to trying new things and cooking large quantities of something to eat the entire following week. The past few years I’ve hardly cooked anything at all either because I couldn’t physically stand in the kitchen that long or I’ve just been too exhausted to even think about it. I feel like it’s a tiny accomplishment on my road to recovery from this summer. I’m still on tons of medicine and still taking prednisone, but at least I’m able to have intelligent conversations now and spend a little time slow cooking something I enjoy eating.
If there’s one thing that can turn my day into a horrible, sweaty mess it’d be a breathing test. After I showed up at my lung doc’s office earlier this week to find their computer system in shambles and my appointment lost, they rescheduled me for today. I showed up 10 minutes before my appointment to find the computer problem even worse than before. Cardiology was turning all patients away and forcing them to reschedule, but fortunately pulmonology was seeing any patients who arrived. My appointments were still in the computer from a couple days ago as I was scheduled for spirometry and then a visit with the NP.
So a couple weeks ago I became extremely congested, which slowly moved from my sinuses to my throat to my chest. I did a measly five-day z-pack, which I was skeptical about, yet they tell me I only have expiratory wheezes now. I’ll take that over the constant accordion noises I was making at the beginning of the week. My visit did start out with spirometry which really isn’t a big deal. On a good day I just exhale as forcefully as possible into a tube and as long as I have three good attempts that aren’t statistically-significantly-different (did I just make that hyphen up?) from each other, I’m good to go. Not so much today. Any resemblance of a forceful exhale was sending me into coughing fits and I sounded like those old people who see my doctor. You know, the ones with SERIOUS breathing issues who are targeted by all the commercials for my medications. Even the nurse said, “GOOD GRIEF! Sounds like we’re breaking some junk up in there!” Eventually I had three that were similar enough to count and I actually felt much better after breaking up all that junk. Unfortunately that feeling last maybe an hour before I was back to where I was. This is why trying to stay active is important and why they’re always worried about people lying in hospital beds getting fluid in their lungs. There’s still no end in sight yet for my prednisone habit, but I’m hoping my exhales can start sounding less like the 70 yr old thankful Spiriva allows him to eat dinner at the table and more like…well, a normal person.
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.
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.
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.
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.
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.”