So my weekend started on Gastroparesis Awareness Day just like everyone else (even though most people probably thought they were celebrating Valentine's Day, silly them...). Later in the afternoon I got back to my apartment after working on campus all day and noticed a very distinct cleaning chemical smell...asthma (or not, I'll explain that later) + cleaning fumes = NOT GOOD. I was actually okay Friday night, went rock climbing with my boyfriend which was super fun and felt decent. Then along comes Saturday...
I woke up Saturday morning feeling pretty good, actually. My peak flows were slightly lower than usual but still green, not having any issues that I knew of...I went running at the Rec Center on campus and went back to my apartment to get some work done. About mid-afternoon my roommate was getting ready to go out somewhere and decided to wear perfume which she doesn't typically wear...you probably see where this is going...I started coughing pretty bad and wheezing a bit. I went over to my boyfriend's apartment to eat dinner and watch the Olympics around 5ish. By 6:30 I was really struggling...couldn't stop coughing, wheezing, chest was tight, etc. I had started using my nebulizer (called neb/nebbing from here on out) after my symptoms started at my apartment, but I was struggling to get 2 hours between treatments...not a good sign. By 8pm I couldn't talk, couldn't stop coughing, my neb treatments weren't working, rescue inhaler wasn't working...I was out of options. So my boyfriend took me to the ER.
VISIT #1: ER (yep, that's what I'm counting =P)
For someone who hates doctors, I will push things until the very last moment to avoid having to go in, but I had hit that point. Thankfully, this was a very good experience (unlike another I will detail shortly). I was triaged immediately...guess that's what not breathing, coughing, and wheezing will get you...who knew they were at least good for something! The nurses were very nice and efficient, the doctors listened and gave me different treatment options to work around my allergies and sensitivities, I was in and out in 2 hours. 2 HOURS FOR AN ER!!! They gave me 4 breathing treatments, some cough medicine, pain medicine for the chest pain from coughing (which I later threw up), but were very helpful and listened to my issues (of which there are many) and worked WITH me to figure out a treatment plan.
I spent the night at a friend's house to make sure I was okay for the night which ended up being a good decision. I had a very severe flare about 3am and was grateful to have someone with me. After leaving the ER I kept nebbing about every 2-3 hours just to maintain breathing. I still couldn't control my coughing though. They gave me a prescription in the ER but 10:30 on a Saturday night, nothing is open to get them filled.
Sunday morning I went back to my apartment and hung out most of the day. I just wanted to stay low key and try to recover since I had to teach and had class on Monday. Mostly that went according to plan...again, about 3-4pm I started having the coughing get worse (even on the medication the ER had given me) and shortness of breath. I had community group that evening and I went even though I wasn't feeling great because I didn't really want to be alone. I couldn't stop coughing and was getting even more short of breath. I was really trying to hold out until Monday because I knew I could at least go to the health center on campus (as much as I dislike going there) which wouldn't cost me anything instead of going back to the ER and paying an arm and a leg and possibly my future first born.
VISIT #2: HEALTH CENTER
I made it to Monday (yay!). Still nebbing every 2-3 hours even through the night and knew that I needed to get seen again. I went to the health center and actually had a good experience. I was able to get an additional breathing treatment and have a doctor see me which confirmed that I was definitely not doing well. She wanted to start me on prednisone which is a steroid that I have reacted very badly to in the past. I asked what other options there were at the point I was at. She was very honest and said not much. I ended up getting a steroid injection at the health center which I was hoping would not have the effects of the oral steroids (it didn't, yay!). But even after the injection and a neb treatment, I was still coughing. She decided to send me to the local hospital to be admitted and monitored while they worked to stop the coughing/bronchospasm. So I called (actually texted because I had not had a voice since Saturday) a friend and she took me to the hospital.
VISIT #3: ER (different ER than visit #1)
This visit was one of the worse experiences I have ever had in an ER in my life. I was triaged quickly but once I got to a room, it went downhill quickly. I still could not talk, was coughing so much I could barely catch my breath, had chest tightness, and was shaking from all the stress on my body. The first nurse came in, listened to my chest, took my o2 sats and said I was fine. The second nurse did the same. I told them I knew my o2 was fine and my chest was mostly clear, but the doctor on campus had sent me to be admitted because I had been coughing for 2 days and was still short of breath. They begrudgingly gave me a breathing treatment which was less than what I had been doing on my own at home. When I finally saw the doctor after coughing for almost 2 hours and seeing no one, he said they were going to give me some oral prednisone and send me home since there was nothing wrong. This was AFTER the nurse had already charted my sensitivity to prednisone and that I wanted to try another option. Because I could barely talk from all the coughing and shortness of breath, he just talked over me and refused to listen when I tried to advocate for myself. They finally gave me some cough medicine and another steroid injection (even after I told them the one from the health center hadn't helped) and said "peace out." I made a point to ask the doctor when I should come back because I had not gotten any help and felt worse then when I had walked in. If I hadn't already been in an ER, I would have gone in...and they were sending me home. The doctor said to come back if things got worse...I told him (AGAIN) I had been in a different ER 2 days ago and things were worse, that's why I had come in...plus the doctor on campus had sent me. He told me to take the cough medicine and I would be fine.
So I left. My friend who had taken me said I sounded worse then when we had gone in...I agreed. Now I not only couldn't stop coughing and was seriously short of breath, but I was reacting to whatever the 2nd steroid injection had been. My HR was more than double my resting HR and my BP was also significantly elevated. The only problem was that my resting HR and BP are normally so low that when things are elevated, they are still within a "normal" range so no one thinks there is a problem (even though I had told them when I got there that I run low). It was one of the worst experiences I have had with doctors.
My mom had decided to drive out that morning when I told her things were not going well, so I had my friend take me back to my apartment. By the time my mom got there (about 15 minutes later) I was even worse. We spent a bit of time trying to decide whether I needed to go get seen AGAIN (4th time in 2 days), but eventually made the decision to head back to the first ER. What I was doing at home wasn't working, and after talking to the doctor at the health center again (who was upset with the situation at the 2nd ER also) figured I needed something more. So off we went to pay out my future first born.
VISIT #4: ER (again)
Back to the same ER I had started at. I think the check-in people recognized me (or at least my cough) and I was triaged immediately again. After intake finished their stuff which didn't take long since it had been less than 48 hours since I had been there, I ended up back in the same room I was in Saturday night. This time they did breathing treatments (again), more cough medicine, and a chest x-ray. The x-ray was clear, but after being there for 2+ hours and no change in my coughing, they decided to admit me. Here's where things got a bit frustrating/weird. The ER is kind of a satellite campus for a major regional hospital system. So to admit me, they had to transport me to another location. Unfortunately, this had to take place by ambulance ($$$) and we had to wait about 30-45 minutes for them to get there. On top of everything, there was a major snowstorm so the 20 minute drive to the hospital took way longer because we were driving about 25 mph on the highway.
I guess this could technically be visit #5 since it was a whole different facility, but since it was the same hospital network I'm counting these together. We got to the hospital about 10pm and check-in took forever. I had my last neb treatment at the ER about 8:30 and didn't get another treatment at the hospital until midnight. That was the longest I had gone without a treatment and I really felt it...the nurses were good, but it seemed to take FOREVER to get orders from the doctor. That's how it has been this whole time (yep, still here...hopefully not for too much longer...). Everyone we talk to is very helpful but things just seem to take a long time to get done. When I finally got the treatment at midnight, I also got some IV steroids. I have been doing treatments every 2-4 hours as needed since being admitted and have had 2 rounds of the IV steroids so far.
I'm finally starting to feel a bit better (at least I think...). I'm not coughing as much (yay!), going whole MINUTES in between coughing fits rather than seconds! My chest pain is a bit better since I'm not coughing as much, and my throat is calming down thanks to some wonderful lemon ices the nurses were able to find for me. I'm still definitely coughing and hurting and I know it's going to be a while before I'm back to normal, but I'm hoping to get out of the hospital soon (i.e. TODAY). I think the IV steroids have been one of the biggest things that has helped me. I started to feel better after the second dose about 6am. My guess is that it takes a little while to build up in my system, especially considering it's me we are talking about. I still haven't seen a doctor although they have been involved with my care, but I'm told I can't be discharged until I see both the regular doctor and the pulmonologist assigned to me...I have another round of breathing treatments at 12pm and another dose of IV steroids at 2pm, so I'm hoping that the doctors will come by at some point so I can go home.
A couple things I've learned from this experience:
- I DEFINITELY need someone with me when I go to the ER/hospital/etc., especially with my asthma when I wasn't able to talk for myself. I carry wallet cards with me that have all my medical information on them but it's no replacement for having someone there to advocate for me when I can't
- I'm getting better at knowing when I need to go and when I can treat things at home. I really resisted going to the first ER, but once I was there, the nurses and doctors reaffirmed that I had needed to be there that night. Same for being in the hospital now. As much as I don't want to be in this germ factory any longer than I need to be, I could not have gotten the IV steroids at home or the IV saline, both of which I think are seriously contributing to me recovering.
- I can't let 1 (or more) doctors tell me I'm okay when I'm not. This is definitely an ongoing lesson, but reinforced yet again this go round. If I had listened to the doctor in the 2nd ER, I would have taken medication that I knew would not work and would make me incredibly sick. I could have ended up in an even worse state because I wouldn't be getting the treatment I needed. It was extremely difficult for me to make the decision to go back to the ER after that horrible experience, but I knew that I needed something that I could not do on my own. Had I allowed that experience to dictate my treatment plan, who knows where I might be now because I was not in a good place when I was admitted.
- Going back to something I mentioned earlier (WAY earlier, like first paragraph earlier), I think there is more going on than I tend to think of. I was reading some articles while I've been sitting in the hospital and one was about histamine-induced brochospasms. Histamine is the major trigger of mast cells which is the basis of my MCAS. If the cleaning chemicals or perfume set off a release of histamine in my bronchials and lungs, that would explain the incessant coughing and why it didn't respond to normal treatment. It also explains why my o2 sats have been okay and my lungs sound mostly clear. It was a bit of asthma, but more a MCAS episode. Maybe next time something like this happens, my first response should be benadryl instead of the typical asthma meds...something to think about/investigate further.