Runnin’ Rough

A drawing I did to help pass the time during my, you guessed it, latest hospital stay.

I did everything that I could do to stay away, but the gravitational pull of the hospital obviously has a strong, unyielding grip on me, and this last trip to the hospital was just plain frustrating.

This time I had to make the dreaded trip to the ER because I was running a fever of 100.2 F, experiencing profound fatigue and sweating profusely for several continuous days. In an immunosuppressed patient with a history of autoimmune disease, this constellation of symptoms shoots the brightest of red flags up into the sky–the greatest fear being, of course, infection.

The last time I had a fever was about a year ago. I awoke one morning with a fever of 99.0 F and a slight wheeze, and by the time I got to the ER that same afternoon, I was in an extremely precarious situation—fighting a serious case of PCP pneumonia and on the cusp of intubation. My former rheumatologist, Dr. Hahn, divulged to Liz and I, at a much later date, that she didn’t think that I was going to make it. But, miraculously enough, I pulled through, and with very minimal scarring to my lungs, which can be a serious and quite common indelible imprint left behind by PCP pneumonia. The whole point being, fever + lupus + immunosuppressants = potential serious situation that one should not take lightly.

So, my heart was heavy as we prepared to make the all-too-familiar and dreaded trip to the ER–given the symptoms, the situation just did not look good.

We loaded up, as quickly as we could (s-l-o-w, given my physical limitations) into our beloved and slightly oxidized chocolate brown and tan Westfalia, and embarked upon the long and congested journey across town. I was chilled and sweaty, but planted relatively comfortably on the firm mattress of our camper bed.

We were about five blocks from the hospital, when Liz caught the scent of burning engine wafting up from the rear. For those of you who’ve ever experienced the privilege of vintage VW ownership, you will automatically recognize that this is also a set of symptoms that should raise the emergency red flag. And, sure enough, the burning smell was immediately followed up with a significant loss of power and a somewhat subtle grinding noise. She was obviously running a bit hot herself.

“OFF with the car!”, I yelled.

Stuck in the left-hand turning lane on Wilshire and Westwood, we were jutting out ever-so-slightly into cross traffic. Boy-a, were people mad! Honks, yells and evil eyes were cast at us from every direction. People really seemed to take it personally, as if we purposefully chose to inconvenience their lives by making a deliberate decision to put our lives at additional risk and park in one of the busiest intersections in Los Angeles.

Luckily, Liz is always ahead of the game, and we were armed with 100 miles of towing from AAA. But how the heck were we going to load up a quite immobile (and sick) me and a 350 pound motorized wheelchair into a tow-truck, get me to ER and transport the Westfalia to an unknown and hopefully trustworthy mechanic? We had no choice other than to surrender our now grumbling and frantic wills to the forces that be, and just hope for the best.

Fortunately, we were graced to receive a very compassionate tow-truck driver who prioritized my trip to the ER, and then connected us with a AAA certified mechanic who agreed to intake our vehicle without a signed agreement from Liz to pay for any services rendered. This seemed like a very risky prospect at the time, but we really had no other choice, as I require Liz’s assistance for my mobility, especially in the dreaded state I was in.

Our angel AAA driver agreed to allow for Liz and I to ride in our vehicle for the remainder of the trip into ER, and he would then tow our jalopy to the service station. What a scene–two broken-down vehicles checkin’ on in to the repair station.

The rest of my hospital stay is pretty anticlimactic within the context of that story. It mostly consisted of five frustrating days of numerous medical teams trying to figure out what the heck is going wrong with me. They seemed to test for every possible known infection, which, fortunately, all came back negative. Pneumonia was ruled out as my lungs both look and sound clear, except for the mild bilateral atelectasis that is most likely the result of poor respiratory muscle function. The only positive tests, are the ones that were already positive prior to this recent admission–my ANA, the Myasthenia Gravis antibodies test, a somewhat elevated ESR and a continued diminishing lung function.

The BIG disappointment came from the neurology team, who was in charge of coordinating my care. Liz and I are actually still in disbelief with their apparent disregard for my situation. Even my rheumatology team expressed frustration with their lack of involvement. My neurologist simply could not be reached, not even by his colleagues, until the last day of my entire hospital stay, and the neurology team just flat-out ignored many of the recommendations coming from rheumatology, and refused, for the most part, to perform any additional investigative work. I did receive my IVIG infusion three days prior to my regularly scheduled infusion, but this time I received the full therapeutic dose over the course of four days for someone with a working diagnosis of Myasthenia Gravis. So, we’ll have to see if that extra amount will yield an additional stabilizing effect.

One standout rheumatology fellow, with whom I share Peruvian genetics, was also frustrated with neurology, and even proffered that Liz and I go back up to Standford so that I can get the complete neurological work-up that I deserve. This exceptionally kind doctor, who had just completed his residency at Stanford, noted that this lackadaisical approach to doctoring, at least within the hospital environment, seemed to be somewhat endemic to UCLA. He seemed to feel that I might meet with a more thorough and investigatory spirit at Stanford. We did exchange emails, and he offered to assist in anyway that he could. What a sweet compassionate soul.

Anyway, during my hospital stay, we learned that I’ve been accepted  into the Muscular Dystrophy Association’s recommended clinic.  This evaluation, which is supposed to be extremely thorough, will take place at Olive View Hospital in Sylmar, an independent affiliate of the UCLA system. We are awaiting a few final insurance approvals before my appointment is scheduled, and we’ll just take it from there.

As of now, I’m slightly more stable, but due to continued respiratory and generalized weakness, I always feel like another hospital visit just hangs out there waiting for me. I so desperately hope that this is not the case. But only time will tell.

As for our Westfalia, the damage was bad, and she’s still in the shop. She had a longer stay than I did. But, she should be all good to go by tomorrow or the next day–a better prognosis than mine, as of now.

 

 

 

 

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