Looks like my spidey-sense proved right again. In only 14 hours or so of not feeling any better whatsoever, Liz took me back to the Emergency Room where they took things a big more seriously this time.
Home sweet home, Mr L!
As usual, I was immediately taken back, and they got me immediately started on some nebs. Because it hadn’t been that long since my last visit, the same respiratory technician was there to get things started. Liz pointed out I don’t really wheeze, and the RT mentioned again that everything sounded fine. Just like earlier that day though, when the doc took a listen it was immediately pointed out that I sounded EXTREMELY diminished. I sometimes wish I knew how to identify all the different kinds of noises I make while breathing. I also know that my perception of how I’m doing isn’t always what’s actually going on.
The RT was in and out pretty quickly as the trauma rooms seemed to be full of people in much more serious trouble. Before my first neb was barely started, she was being called away to maybe intubate some poor soul a couple rooms down the hallway. When it comes to medical stuff and waiting, I always remind myself they’re taking care of the worst-off first. I’ve been that guy before with 6 people hovering over me for two hours while others have to wait.
The NP assigned to me was someone I don’t think I had met before. She took great care of me and had a lot of great tips. It reminded me of talking to Dr Wenzel’s nurse while at SARP last Fall.
- Ask about updating vaccines with the resurgence of pertussis and other diseases
- Piggybacking benadryl and allegra works a lot faster than zyrtec
- Benadryl + pepcid can knock out allergy attacks pretty quickly, especially if your throat is tightening up
- Look into lung strengthening
Another 125mg solumedrol IV push, and some magnesium sulfate via IV drip got things turned around for me. The solumedrol was doing its thing, but my airways kept tightening up over time. My oxygen saturation was constantly setting off the alarm bouncing between 88% and 91% most of the time. In August or September last year there was talk of trying magnesium during an ER trip. I was impressed with how quickly it seemed to work and much more deeply I could breathe afterward. It actually kept me in good breaths for 12hrs after leaving the hospital.
They sent me home with orders to neb duoneb every 4x/day with albuterol in between. My prednisone has been bumped up again with a slow taper down, and they threw in some levaquin for good measure. There are a lot of people with nasty respiratory viruses at the moment and I like to play it safe. I haven’t had pneumonia for almost 8 years now, but the thought of it still scares me.
This morning I went in for spirometry before drugging up. I felt horrible and they wouldn’t let me go until my doc was paged and checked up on me. Numbers were low and lung function diminished, but things weren’t bad. They stressed to call them immediately if things worsen though.
So it happened, and on the first day of summer no less. For three months I was doing “OK” needing no more than one or two uses of albuterol a day until June arrived. I’m trying to be proactive – I really am. I made a point to go see my local pulmonologist a little over a week ago. He agreed I was doing the right thing and bumped up my daily prednisone from 5mg/day to 40mg/day with a slow taper back down to 5. The past week has sucked.
- Every morning I wake up with peakflows around 60%
- I’ve been spending every day at work in shoddily air conditioned offices, but am thankful I’m not having to be in the buildings with no air conditioning
- Every night between 8pm and 1am things get bad for an hour or so
- Every night/day things have been getting a little worse
- After an hour in a hot conference room on Friday I started hardcore wheezing (wheezing is not a common symptom for me)
Last night things started going south around 9pm. By midnight I had done three consecutive neb treatments in three hours w/o successfully getting my peakflows up above 350. Liz ended up staying home with the kids and El Cuñado gave me a ride, being the awesome dude he is. As usual, I get there and they immediately put me into a room. A nurse of some sort was in there and a respiratory tech came in right away to have a listen. She declared my breaths sound ok, AKA no wheezing, and said they’d be right back to start some meds.
Two hours later the doc came in apologizing for the long wait and immediately told me there was a 50/50 chance I’m not going home because I’m hardly moving any air. I got the standard IV line, solumedrol push, blood tests, x-rays, and neb. A couple more hours and the x-rays show no pneumonia, the blood tests are good, and my breathing has slightly improved. Sound familiar? So at this point the doc comes back and says normally he’d admit someone like me, but taking my history and rock-star-respiratory-system into account, he wants to send me home so I don’t accidentally pick up pneumonia or all the crazy viruses people keep sharing. And as always, “come back if things start to get like this again.”
El Cuñado takes me home, peakflows are still at 350, I do a little more self-medicating and get a couple hours of sleep, later waking up a sweaty mess and needing more albuterol. Sometimes I wish they’d just keep me at the hospital because I have a good feeling history will repeat itself. If my sensible gut feeling proves right, I’d like to get a hold of someone via the physician’s answering service to tell me to head back in instead of wasting a lot of money to do what I could at home in a much more comfortable environment.
Now I just have to figure out what to do about work since I have no sick, vacation, nor FMLA time remaining with which to stay home and attempt to recover. Next week’s forecast is once again hot and sweaty, and they still don’t have the AC fixed.
As a kid summer was my favorite time of year as I got to spend most of my time outside. It was often full of runny noses, sneezing, and watery eyes…but I had fun nonetheless. Last summer was my worst asthma-allergy season ever, but I’m really hoping to not repeat it even though they say it’s another record year for pollen.
My week days generally consist of:
- Waking up at 6AM and feeling awful
- Turning off my alarm at 6:30
- Checking my peakflow to see I’m once again at 60-70% or worse
- Use my nebulizer before taking my morning maintenance meds so I don’t just cough all my Dulera out
- More lying around waiting for the meds to kick in while constantly checking the time
- Eventually forcing myself out of bed to get ready for work
- I then roll into work later than I should but not too late to be a problem
- Re-check my PF numbers and decide if I need more albuterol after I’m settled
- Try to act like I feel ok all day
- Stay late to make up for arriving late
- Go home, take some meds, lie down for an hour, and remind myself it was a good idea to take a break from grad school for the summer
- Help out as I can with dinner and getting the kids into bed
- Ride my bike slowly, really slowly, or not at all
- Take more meds
- Try to get some sleep before it’s time to turn my alarm off again
Weekends are more of the same with me trying to rest up enough so I’m not too tired on Monday, and don’t start my week badly. Liz asks me off an on if I need to go to the hospital, but I’m slightly more than determined not to because I can’t afford to miss work.
In an effort to not repeat last summer, I’ve been really trying to up my game this year and be more proactive. A couple months ago I was looking into face masks and was told they’re kind of pointless because they don’t seal to your face. My concern at the time was a plane ride for work. If the air quality, allergens, irritants or somebody reeking of smoke doesn’t bother me, the cabin not pressurized properly will. Now that allergy seasons are in full swing, I need a little help some days when the pollen counts are approaching 12 out of 12.
For $14 I picked up one of these on Amazon. They’re reusable, washable, not too hot, adjustable, and easy to store in a pocket.
Yeah, so the picture makes it look like a bean bag chair or maybe a guinea pig hiding under a piece of material. It actually covers my face quite nicely and my beard does a good job filling in the gaps where it doesn’t “seal” to my face. There’s a bendable, metal piece you can shape to your nose. It doesn’t do a great job by itself, but the mask in conjunction with my sunglasses works great. Oh, and my glasses don’t fog up from my breathing.
Some people ignore it and many look like idiots staring at me. One day I was driving and put it on at a stoplight. Some guy in a car next to me became quite concerned. I think he’s seen too many mob movies where hits are made at stoplights. Some student at work the other day was staring at me with his mouth hanging open and open walked into a pole. I eyeballed him for 5 seconds and then loudly declared, “HEY YOUR MOUTH IS HANGING OPEN.” One positive is I can yell at drivers with it on and no one sees my mouth moving.
The good news is for $14 I notice a distinct difference on high pollen days, and that can be all it takes for me to feel miserable or feel not so bad. Last year there were some issues at work with construction dust and this would probably make a big difference if I needed to wear it inside. I’m not sure how often you should wash it or how long until it needs to be replaced, but for now I’m pretty pleased with it after three or four weeks of use.
I am very fortunate to currently have a full time job and decent health insurance through my employer. Unfortunately, that hasn’t always been the case for me and there have been times when I haven’t been able to afford all my medications or was rationing what I had to forego going completely without a prescription. The Prescriptions Assistance Program through Allergy & Asthma Network Mothers of Asthmatics (AANMA) provides patients and their families with discount cards “accepted at more than 56,000 national and regional pharmacies around the country, including CVS, Walgreens, Rite Aid, Walmart, Kmart and Target.”
“We hear far too often from patients who cannot afford their life-saving medications or don’t take the full amount recommended,” says Tonya Winders, AANMA president and CEO. “The Prescription Assistance Program helps relieve a huge financial burden many families with chronic illnesses feel at the pharmacy counter and helps keep families healthy.” A 2003 study published in The Journal of Allergy and Clinical Immunology estimated the annual costs for asthma treatment at more than $4,900 per person.
If you’re interested in joining, all you need to do is visit AANMA’s website.
Remember last year when they said it would be a bad year for allergies in 2013? Well apparently it’s going to be bad again this year. Part of me wants to worry and part of me wants to be all laissez faire about it. The good news is I’ve had some time to recover from last Spring, Summer, and Fall. I have by no means rebounded back to normal, but my symptoms are relatively under control, I haven’t been to the hospital in over five months, and I’m not needing eight nebulizer treatments a day. The real question is what can we (the royal) do about it? Here’s my plan of action:
- Continue rinsing my sinuses on a daily basis. One of my lung docs has told me to do it twice today. This is an easy way to clear your sinuses without taking meds if that’s important to you.
- Exercise as much as possible. I’m back to doing something almost every day. That can be riding my bike, taking a walk, lifting some weights, etc. Even if walking to the mailbox is all I can do, at least I wasn’t lying down all day. As soon as you stop being active, it takes a lot of work to re-activate yourself.
- Stay on top of things. Historically I have a penchant for just waiting to see what happens. I can’t just hope I’ll get better or wait just one more day anymore. Unless I want to start visiting the hospital again on a semi-regular basis, I have to more actively respond to and plan for what’s happening with my health.
I have horrendous seasonal allergies. They affect me all year long, but the worst of it is Spring through Fall. Today I feel like it has officially started. My sinuses and part of my chest burn when I breathe in the air outside. My eyes are swelled up, and my face hurts. This will by my life until late November or early December. Most of the time I get used to it and forget I even feel this way, but I’m just now feeling it again after a several month hiatus so it’s noticeable. Julius Ceasar was told to beware the Ides of March and so do I. Along with the start of tree pollinating, I often cough up blood around mid-March. This hasn’t happened since I started Xolair, so here’s hoping the hemoptysis stays away again.
Also saw my out-of-state lung doc again. For now I’m going to keep doing what I’m doing and try really hard to not increase my prednisone. Based on my history of PFTs and other symptoms, we’re looking at VCD as a possible undiagnosed condition. With asthma you generally have trouble getting air out, not in. At times I experienced one or the other, or both. Unless PFTs in the next six months show specific results or other things happen, I’ll do another methacholine challenge next visit with a laryngoscopy to see what happens. If that comes back positive I might be able to get off some of the asthma medications in order to treat the real problem. The other day on FB I saw my buddy Art post something about Western medicine focusing on symptoms, not root causes. The more I think about this, the more it rings true. The other concerning fact is I’ve been seeing lung specialists for 20 years and this is the first time anyone has tried to even look into this. I’ve heard of people being misdiagnosed with asthma and heavily medicated for years for the wrong condition. It makes you wonder how many others are taking drugs to treat symptoms that don’t match their diagnosed condition.
Several years ago my allergist at the time thought some of my breathing issues could reside in my throat. Unfortunately, like many of my other conditions, at the time I wasn’t experiencing enough symptoms for the proper doctor to follow up on that. Now several years later things like vocal chord dysfunction have been brought up once again and I figured I need to get that checked out.
My first step was to once again acquire a local ENT. I had a great one before we moved and then had a terrible experience after we moved. The doctor was so-so and the staff was a nightmare to deal with so I just quit going. I had some reservations about returning, but decided I needed to just man up and do it. Turned out that doctor with whom I was not thrilled no longer worked there and the new one they switched me to was amazingly better. He was somewhat impressed with my list of medications and conditions and thought it’d be a good idea to go ahead and get a video laryngoscopy and see what that turns up.
Last week I went to the rehab center and met with a speech pathologist. The easy, non-evasive scope wasn’t able to do the trick due to my over-sized tonsils and uvula, those wonderful things that greatly contribute to the OSA and enlarge when the allergies act up. Everything was a little red which can be caused from the GERD and all the inhalers I use. There was also some thickening in my vocal chords most likely caused by the years of coughing and throat clearing. The good news is there wasn’t any blatant signs of VCD, but there’s probably a little something going on there which is contributing to everything else.
For now I’m following up with the speech pathologist who is going over some stretches and voice exercises with me to make sure I’m speaking with the right part of my throat and not tensing up. The staying relaxed bit is good for several reasons and most of what she’s having me do are things I’ve done in the past to one degree or another when I used to lift all the time. It’s been a wild and crazy 8 months. It’d be great if my five doctors could get this figured out for me.
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.
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.