Spent the Night in the Hospital

Last night was pretty brutal.  

Sheila and I were watching a Dayton basketball game on television and I started to experience breathing problems.  I grabbed my inhaler and just assumed that a couple of uses of that would take care of the problem.  It didn't.  I used my inhaler again.  That still didn't help and my health continued to spiral downward.

I was feeling slightly dizzy and lightheaded very quickly.  Then I started getting hot so I knew things were worsening and getting bad.  My health deteriorated so quickly and severely that I moved to the living room floor right in front of the Christmas tree for two reasons...  first, I was feeling like I might lose consciousness and I didn't want to fall over and hit something on the way down.  I also felt like the thing to do was to counter the anaphylaxis by raising my feet higher than my head, keeping as much blood as possible in my head.  I was hoping that between using epinephrine and raising my feet, that my body would respond well enough to stabilize my crashing condition.  

My illness, systemic mastocytosis, can suddenly deteriorate into complete vascular collapse, at any time for sometimes no apparent reason, so I must always be ready to counter that with emergency directives in case my body does not respond effectively enough naturally.  Sometimes this deterioration can be relatively minor, sometimes it can be significant and sudden.  Last night my body was not responding well enough naturally and this was a significant, sudden and dangerous decline.  

After using epinephrine twice, I still felt like my condition was deteriorating.  I was lying on the floor telling Sheila that she should give me just another five minutes before calling 911.  I was still hoping that my body would respond and fight the anaphylaxis.  I reminded her that if I lost consciousness, she would need to epi me again and then call 911.  She was standing over me with the epi-pen in one hand and the phone in the other.  

After another five minutes, my condition still was not improving at all so Sheila called 911.  

Now I was trying to remind Sheila of everything we would need to pack up to take to the hospital with us...   shoes, pants, wallet, my usual medications, extra medications in case of an extended hospital stay...  and, I realized that there was no way I was going to make it all the way to the hospital in Burlington before I peed myself.  This last thing was actually becoming pretty urgent and a priority!

When my mast cells suddenly degranulate, they dump a whole slew of mediators into my blood and tissue.  My body goes into overdrive to rid my body of whatever foreign invaders prompted my mast cells to attack and degranulate.  All function goes into overdrive to accomplish this and that means I'm needing a bathroom every 10 or 15 minutes for a few hours.

As we waited for the ambulance and I struggled with violent anaphylaxis, I tried to sit up to see if I could get to the bathroom or even closer to the door but that wasn't working.  My dizziness and lightheadedness would just get significantly worse whenever I attempted to lift my head off the floor. My spinal injuries were now excruciating too from lying on the floor.  I knew I needed to give the epinephrine a bit more time to counter the anaphylaxis so I stayed there on the floor under the Christmas tree gasping for breath.  The air would go in and out but nothing was happening...  it was like there was not oxygen in the air I was breathing. 

It didn't take long before the usual mid-to-post-episode violent shivering started.  This shivering is so violent that there really should be another word for it.  During all of this, the muscles in my raised legs were tense and flexed as I tried to keep the blood up in my head.  My body sort of looks like I am having a seizure during this period but, due to the anaphylaxis and loss of blood flow, I think my body has difficulty retaining heat and I feel like I'm freezing.  Heat is a major trigger of anaphylaxis for me so I'm really in no hurry to warm myself up when I'm already having such severe problems.  So, I was lying there on the floor, legs elevated and shaking violently with my legs tensed up.  I cannot express well enough how violent and even painful the shivering is during this phase.  I knew I would feel a lot of very sore muscles later after recovery.  (And I am sore today.)

Within a few a minutes...  maybe eight to ten minutes... the ambulance pulled up to the house.  As Sheila went to the door to let them in, I was slowly pushing myself, on my back, toward the hallway to the side door and the half bathroom so I could somehow relieve myself in the bathroom before they put me on the gurney....  well, hopefully....  I definitely did not want to wet myself in the ambulance before they had a chance to catheterize me if I could not get up on the toilet to relieve myself.  

After dragging myself across the kitchen floor from the Christmas tree in the living room, pulling myself by grabbing the bottom side of the kitchen cabinets above the toe kick and slowly propelling myself along with my legs and feet, I was now lying on the floor halfway into the hallway and still halfway in the kitchen.  The good news is that I was now closer to the side door to the house and much closer to the bathroom so I could possibly relieve myself before we headed to the hospital.

The EMTs came in and started working on me but I couldn't see their faces because there was a recessed light in the ceiling right next to each of their heads so, as I was gasping for air, I asked if I knew either of them and explained that their faces were silhouetted in front of the bright recessed lights.  It is a rather small town and this is not the first time we've needed to be transported to the hospital so familiarity can make explanations about my health a bit easier if we know each other.  We didn't know each other though so they worked on me and questioned me starting from the very beginning.

Eventually, they had to help me up anyway so they helped me into the bathroom which was only about a foot from the top of my head.  The lightheadedness and dizziness worsened as they helped me up and onto the toilet but I didn't lose consciousness.  The uncontrollable violent shivering had subsided a bit by now so that was good.  I was still shivering uncontrollably but it was not the violent shivering I was experiencing when I was lying on the living room floor a few minutes previously.

I relieved myself (and not in my pants, thankfully) which was much needed by now and then the EMTs carefully placed me into a transport chair.  It's easier getting the chair through people's houses, however, this chair wasn't working too well on all the now frozen, bumpy snow and ice between our door and the road where the ambulance was waiting for me.  The wheels were just too small on the chair for this kind of terrain so they kept getting stuck in between the chunks of ice.  They alternated between lifting the chair and wheeling the chair through the crunchy ice.  This bumpy trek to the road didn't do my extensive spinal injuries any favors.  

Alongside the ambulance in the street they moved me to the gurney.  

Before getting underway, they attempted to start an IV but, for some reason, that didn't work.  Maybe it had to do with the anaphylaxis and low blood pressure.  I don't know.  He dug around in my arm for a few minutes trying to get into a vein but it just didn't work so he gave up and we started out to the hospital.  Sheila got into the car to meet us at the hospital.

Although I briefly started feeling a bit better at the beginning of our trip, about halfway to the hospital, my condition worsened again and started deteriorating back into anaphylaxis.  My breathing worsened again...  more dizziness...  more lightheadedness...  getting very cold...  more uncontrollable, violent shivering...  as we pulled off the highway at our exit, my body seemed to be recovering again.  Well, by 'recovering' I mean to a more stable condition. I was still having difficulty breathing, gasping for air occasionally, and shivering.

As we were pulling off the highway, my blood pressure had spiked up to something like 170/101.  Although this sounds high, this was good news.  It was a sign that my body was finally responding to the anaphylaxis in a positive way and the two previous doses of epinephrine were now doing their thing to help bring my blood pressure back up.   The EMTs said they were relieved to see the high blood pressure rather than the low blood pressure which is a result of anaphylaxis.

Our drive in the ambulance was uneventful but seemed a bit long to me which I guess is a sign of how lousy I was feeling.  The motion of the moving ambulance when you are dizzy and lightheaded only makes the dizziness worse so I was hoping for a ride of a shorter duration.  Sheila later told me that she had an icy drive to Burlington.  

The ambulance has a lift that slowly moves the gurney back down to the ground but, when we arrived at the hospital, it was not releasing the gurney after slowly moving me to the ground.  Maybe the cold weather was causing the gurney to hang up on the ambulance.  All I know is it was cold and windy out there as they were trying to get me off the ambulance!  They pushed me back into the ambulance and then moved the ambulance figuring that maybe the uneven ground was affecting the lift.  On the third try, they finally yanked me off the lift and wheeled me into the hospital.  

It was a Friday night so I expected the hospital to be a bit crowded, noisy and a bit crazy with some commotion but, instead, it was eerily quiet.  Sheila had made the same comment about it being so quiet in the waiting room when she was finally allowed in to my bedside.  Most of the two dozen or so rooms in the Emergency Department were filled but three were waiting to be cleaned and disinfected yet the waiting room was oddly quiet and empty.  I waited on my gurney outside a room with the EMTs while a room and bed was being cleaned and disinfected.  

By now, my overall health was feeling relatively stable as the nurses ran through my history, what drugs I had taken, how much epinephrine I had taken at this point, and a bunch of other questions.  I was still not feeling like I was even close to being well enough to go home but I was feeling much better than when I was lying on our living room floor.

The other guy in my room, on the other side of the curtain, was wheeled in right after me.  Turns out he was a guy from the Army who seemed to be having his second heart attack.  I was relatively stable so things were a bit more hectic on his side of the curtain than my side of the curtain.  I got to listen to his history and current problems.  His history sounded like he had been a victim of a roadside bomb at one time and had had a lot of work done to save him...  grafts, replacing arteries from other areas of the body, surgery after surgery, etc.  Now he was having chest pains and vomiting for the past few hours.  I was thankful to be feeling a bit more stable at this point as his condition reminded me that things could always be worse.  

It was funny...  they wheeled him in right after they wheeled me in...  I overheard some of the nurses wondering to each other if we both were together...  both of us military and having arrived at the same time.  His ambulance actually pulled up as I was being taken out of my ambulance.  

Sheila was then allowed to join me in my room.  

Within about 15 minutes, the doctor came in, wearing a mask and said hello.  I said hi, shook her hand and, even though she was wearing a mask, I immediately noticed something very familiar about her and commented that she looked familiar to me.  Sheila then said the same and asked if she was from Waterbury.  She gave us a surprised look and said, "YES!"  It turns out that we did know each other.  

She ran through her questions and we discussed my primary illness and how this idiopathic anaphylaxis is a fairly common thing for this unpredictable and debilitating illness.  I just need to get to an emergency department whenever my condition gets bad enough to need epinephrine so we can ensure my body stabilizes rather than plunges further into complete vascular collapse.  

By now, I was wired up and connected to a monitor keeping tabs on my blood pressure, my O2 saturation, respiration rate, and an EKG.  It was around this point that I remembered that the first thing I noticed earlier in the evening was that I felt like my lungs were congested and like I had to cough up some phlegm.  I didn't make the connection that this was more than likely a sign of my throat swelling due to the anaphylaxis.  Honestly, I felt a bit stupid that, after more than 20 years with this illness, I still didn't connect the dots that my body was cascading down into typical anaphylaxis symptoms.  For some reason, I might not have recognized all the signs and attributed this one seemingly insignificant sign to something else.  Maybe the pandemic has pushed my thinking in the wrong direction...  I don't know.  Now I wasn't sure what I was actually experiencing which is strange after dealing with this illness for two decades.

I also remembered that I had been experiencing difficulty breathing every night over the past week while in bed at night.  I had felt this "phlegm" in my lungs and needing to cough it up too.  I just was not connecting this feeling to actually being my throat swelling and closing.  So, at this point, I was finally realizing that I had been teetering on the brink of anaphylaxis all week!

This is fairly normal for this illness too.  The over-abundance of mast cells in my body (I have too many mast cells and they are also overactive, attacking transient areas of my body) keep degranulating and dumping more and more mediators and proteases into my blood and tissue which cause all sorts of problems.  Eventually, as more and more mast cells degranulate, my body gets to a tipping point and I crash into anaphylaxis.  I usually connect the dots by the time the second symptom appears and appropriately throw the right extra medications at the problem.  I didn't take immediate notice of it this time nor did I throw the appropriate medications at my problem quickly enough but the bigger problem was the unseen problem of a massive mast cell burden building up in my body over the course of the past week.  The consequence to this is that I then need emergency medical care in a hospital.

As expected, even though I was now feeling better than I had been feeling, they wanted me to stay a few hours to keep an eye on my vital signs to ensure I wouldn't relapse into anaphylaxis.  Bouncing back into anaphylaxis after treatment has never happened to me before but this sounded like a good plan and I told them so.  

About the time that they would have released me, my body did start to dip back into anaphylaxis so it is very good that they kept me longer to keep an eye on my vital signs.  I was again having difficulty catching my breath.  I felt like someone had knocked the wind out of me.  The air was going in and out but no air seemed to be processed by my lungs.  The air was just going in and out with seemingly no purpose nor effectiveness.  I was dizzy again....  lightheaded again...  it was time for another round of epinephrine.  This also meant that now we knew we'd be here at the hospital longer and driving home after dawn the next morning...  at the earliest.  There is no doubt in my mind that it was good that they kept me long enough to ensure I wasn't going to relapse back into anaphylaxis...  yet again.

At this point, on the other side of the curtain dividing my room, they were talking about sending my roommate with the heart attack back home yet Sheila and I were looking at being there until sometime Saturday morning.  At the time, when they were talking about sending my roommate home, I couldn't help but wonder to myself how bad my condition must be that I'm being treated longer than a heart attack patient!  It turns out that the roommate's tests didn't look good and they had to do them over again so he was still there when Sheila and I were finally sent home.

So, they administered a third round of epinephrine to me and that worked wonders.  Within about five minutes after the 10 minute epinephrine treatment, I was feeling better than I had felt in at least a week.  I was able to breathe easily for a change!  You don't realize just how bad your breathing has been until you can physically breathe easier again.  I was still shaky, sore, and stiff from what I had been through but I was actually feeling better than I had in a week or so.

That lasted about 15 minutes and I was again gasping for breath every now and then.  Over the next hour or two, my O2 saturation level was dipping down close to 90...  then, a few minutes later, it would rise again to around 98...  then dip back down to around 92...  back up....  etc.  If I was now feeling fairly good but with an O2 level down close to 90, then I knew I probably was around 80 or lower when Sheila called 911.  I've been down in the 70s before and I feel like that is how bad things were in our living room earlier in the evening.

Over the next couple of hours, my body stabilized to a happy medium in a decent place.  The doctor felt comfortable sending us home.  She said that if I had any problems whatsoever, I should use the epinephrine again and immediately come back to the hospital.  I was to continue with heavy doses of H1 blockers through the next 24 to 72 hours.  (EDIT:  I was wrong in this estimate...   I am on steroid therapy and taking extra heavy doses of H1 blockers for at least a week.)

As we left the hospital on the frigid Saturday morning, I was already feeling the soreness and stiffness in my legs from the violent shivering and tensing of my legs for hours through the previous night.  

Ironically, I had previously scheduled an appointment with my primary care doctor for this coming Wednesday (for a med check) so that works out well for a much-needed follow up to this emergency.  The emergency department doctor wanted me to follow up with my primary care doctor anyway and, by some stroke of good luck, I was already scheduled.

I plan to contact my Oncologist (the specialist for my systemic mastocytosis) today too.  As I wrote recently in a few blog entries, she wants to know whenever my health deteriorates since my blood test results have been sliding farther and farther out of normal range.  I can contact her through email so I can send an update to her this weekend even though it is a holiday weekend.  She is also at UVM but, since it was a Friday night, she was no longer at the hospital so I'll update her sometime this weekend.

Sheila and I slept in the living room for a few hours after arriving back home.  I fought sleep for a while before falling asleep.  I wanted to keep a close eye on my condition so I was sort of fighting falling asleep.  I definitely did not want to slip back into severe anaphylaxis while I was sleeping so I was fighting sleep.

I ate a small steak sandwich before falling asleep but I'm starving again so I guess I should do something about a small meal...

Oh...  and I should add that Waterbury Ambulance and UVM Medical Center did a great job in ensuring I stabilized safely and as quickly as possible.