You Can’t Get There From Here

November 13, 2012 at 8:21 pm (Living With Chronic Illness, Medical, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , )

If you follow me on social media (primarily Facebook), you’ve gotten little updates on the current situation, but I’m going to tell the whole story -albeit in short form, or as short as I can make it- of this current trip to Johns Hopkins. Yes, I am back in the hospital again.

Friday, I took my first dose of Isoniazid (the new TB drug). I waited until then because both of my bad experiences with Rifampin peaked on the second day, and this way it would be a Saturday so Rave could help me or take me to the ER if things got bad. I admit I was pretty nervous when I took that pill, and for most of the morning and early afternoon I was hypervigilant to any ache or pain my body may have.

Part of this hypervigilance makes me aware of how bad the pain in my pannus had become. Ever since the beginning of November, the very bottom of my pannus has been extremely sore and swollen. A light graze against a doorjamb or accidental poke made me shrink back in pain. I hadn’t realized up until then how much it was affecting me, and even the way I was walking.

But I went about my day, watching Glee and getting ready to write my silly Glee blog. I took a break and was sitting on the porch reading Twitter, and I realized my belly pain had increased, and I was feeling a little antsy. I got worried, as Rave wasn’t due home for another three or four hours, so I went upstairs and crawled into bed in hopes that rest would make it better.

I felt marginally better, although I had started feeling like the room was pretty warm. I struggle with odd temperature disregulation all the time, so I didn’t think too much of it. Rave brought me up dinner but I wasn’t all that hungry.

In fact, halfway through I started feeling overly warm and dizzy. I laid down and decided to take my temperature. Good call – it was 101.5. This was troubling, though.

I have three medical things I’m focusing on right now: the wound on my back, the new TB drug, and my pannus/the upcoming surgery. For all three, I am supposed to go to the ER if I have a fever over 100, nausea, lack of appetite, pain/discomfort, etc. I decide to wait a bit and see if eating had somehow spiked my temperature, but three hours saw no decrease. It was time to go.

Johns Hopkins (JH) is about an hour and a half from where we’re temporarily living in Hagerstown. It was a long, tense ride as I felt increasingly uncomfortable and alternately cold and hot. When we arrived, there was a collection of JH’s security cars parked around the entrance of the ER. Turns out it’s a “crime scene”, according to the policeman who directs us into the ER. A judicious welcome?

Once again, the big whiteboard announces there is a four hour wait to see a provider. I have to admit, when I saw the motely crew of all sorts of people waiting, and the remnants of adrenaline from whatever “crime” took place before we got there, it made me think of Stefon. On Saturday Night Live (shut up, it is not dead, and I have a giant boycrush on Fred Armisen) Bill Hader has this reoccuring character on the Weekend Update segment named Stefon. He is an effeminite hipster club boy who comes on periodically to recommend the newest hot spots, usually in conjunction with a holiday. I’m writing this entry on my phone, so I can’t embed a video, but trust me and go look Stefon up on You Tube.

Now that you’ve done that, you’ll understand what the ER was like when we got there. Luckily, I was called to triage quickly and then fasttracked into the ER in less than an hour.

This makes me happy because we didn’t have to wait, but anxious because that’s *never* happened to me before (going into the ER straight from triage, except in the case where the ER was empty or having a slow night). It turns out we’re just going to wait in a private ER room instead, because I think we were there for at least four hours before we saw the actual doctor.

It turns out it’s not the TB drug; they’re not even concerned. It is, however, that my abscess has regrown to almost exactly its old size, except this time it’s full of pus and other infected tissue. A new drain is inserted, and they admit me to drown in IV antibiotics and see what happens. There was some talk of doing the panniculectomy now, but the plastic surgeon thinks that it’s best to try to remove as much infected tissue as we can before we go cutting it up.

They’ve also noticed that new parts of my pannus are showing signs of other infections. The pain from all this crap is bad, and unrelenting. I am struggling with the doctors for adequate pain control. At least they had a glimmer of understanding of my opiate tolerance; when they reinserted the drain this time, I was healthy enough for twilight sedation. Two or three miligrams of Versed and a few of dilaudid and I am still alert and oriented? Even with that, it takes me a day or two to get back to the same treatment I had when I was here last. Finally, as part of the steps towards discharge, the surgeon I really like (whom I have nicknamed Dr. Awesome) figures out a pretty workable solution that relieves a real portion of my pain *and* is something I can continue at home. (She increased both the amount and frequency of the opiates I take for chronic pain. She is the first to state openly that although the 2mg dilaudid IV that I’ve been getting feels good when it’s first pushed, it is still too small a dose for someone with my level of tolerance.) Now we’re hoping that the pain management doc will sign off on the increase, at least temporarily, so I can go home with my pain managed and supported through the surgery in December.

Once again I go through IV sites like cheap pantyhose, and the subject of a central line comes up but too late to do me any good. The antibiotics are shredding my thin, weak-walled veins. Both Zosyn and Vancomyacin have that effect on people with typical veins, and it’s just exacerbated with all the other meds they inject into my line.

One of the challenges during my last stay was that when they cultured samples from my abscess, they weren’t able to grow anything. This doesn’t mean there isn’t an infection, but that it is likely not a run-of-the-mill one. This is why when I came home last time there was a lot of talk about MRSA. However, this time the culture does grow something: Pseudomonas. When they tell me this (during a rushed physical exam with a student present), I fight back tears and I don’t know why. The doctor doesn’t give me any information about it.

When I get a chance to both consult my favorite doctors (Drs. Wikipedia and Google), it becomes more apparent why I had such a strong reaction. One of my friends who had died from HIV had Pseudomonas, and it’s one of those infections that people with healthy immune systems are rarely affected by. This is yet another diagnostically relevant piece of information – although my doctors and I have frequently used the term “immunocompromised” to describe my situation, I don’t have any real medical proof (other than observation and/or anecdote) that my immune system is weak.

There is the diabetes, which at any point in the game can weaken or damage a person’s immune system, but it bears repeating that regardless of how morbidly obese I am, my diabetes is pretty mild. My A1C hovers between 5 and 6, and frequently lowers to “pre-diabetic” levels. My blood sugar numbers are reasonable as long as I am not in severe pain or under a lot of stress. (Or eat a lot of processed sugars, which I have made good strides in that department.) Overall, my diabetes hasn’t been chronic long enough, or severe enough, to make it a viable scapegoat for this.

Before anyone goes there, I am HIV negative, although I did have a pretty serious scare in the 90’s when I had several false-positives in a row. At this point in my life, my exposure risk is low and getting lower. I haven’t had penetrative sex with a factory equipped penis in over two, almost three years, and the chances of it happening again is pretty low. (A tale for another day.) I do still pierce strangers both as pick-up play as well as suspension work, but I’m pretty well trained on how to avoid fingersticks and how to treat one to lower my risks.

The thought I’m having, and honestly have been having for years now, is Lupus. Yes, I know, it’s never Lupus, but sometimes House is wrong, too. My mom was diagnosed with SLE in her 30s, and it made her pretty sick right away. There is some heredity with SLE, and that link is most often between a mother and her first born daughter (which would be me). All along this journey towards diagnosis, I have requested the most basic screening test for it and have yet to get a result. However, there are lots of cases where someone has a negative ALA and still has Lupus. I am seriously considering contacting a rheumotologist and being seen before the surgery to start the longer process of ruling everything else out.

Anyway, regardless as to what lowered my immune system enough to bring on this infection, I was actually lucky. There are two strains of Pseudomonas: one that is “pan-reactive”, or that can be treated with standard (but strong) oral antibiotics; and the other is similar to MRSA, in that it doesn’t react to anything but the very strongest antibiotics. I have the former, so I’m taking a combonation of Cipro and something else (I can’t recall the name).

When they admitted me, they said it was for two or three days. Last time, it turned into ten. This morning makes it day seven, but there is a strong rumor that I am getting discharged today. We’re waiting to hear from my pain doc, approving the much stronger dose. I’m also thinking they’re also watching to see if there has been any reactions with all the new-to-me meds. I am really hoping I am released, as it has been more difficult than usual to get enough quality sleep, and I have started havin mirco-sleeps (where I go from being awake and focused on the day ahead to falling into a deep sleep in seconds, dropping whatever is in my hands and even snoring; only to wake up a moment or two later unaware as to what happened. I also find myself “coming to” having struggled to continue writing. I’ve had other sleep-related episodes and even asked if maybe the doc would want to add a sleeping aid so I could sleep through the night.

It’s hard to write about this hospital trip without mentioning a real difference between this one and the one before, but it touches on an idea I have for another DfaD post, so I’ll just put it out there and elaborate later. Last time, I was here for ten days and had somewhere in the ballpark of ten to fifteen visitors; this time, I am going into my seventh day and I have had three. I know that last time I made several FB posts requesting visits; this time, I was careful to make a single request that said I was interested in visitors (and then 2 posts looking for someone to give Rave a chance to go home). Other than two notable visits, including the lovely K and the fabulous M who jumped on a train and rode all the way down from CT to spend 24 hours with me, I was alone every day until Rave came after work. But like I said, there’s a bigger post floating around in this.

So hopefully this is the slightly more detailed version of what the last week has been like. I will definitely be posting to FB/Twitter when I am released and when I get home. For now, I’m going to try to catch a little more shuteye before the onslaught of the “dawn docs” come a’roundin’.

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6 Comments

  1. Elizabeth said,

    Any idea how long you’re going to be in there?

    • Del said,

      I’m home now. They originally said “two to three days”, but you know how *that* goes. Here’s to no more unscheduled trips between now and 12/28!

      ~Del

  2. allura said,

    I would come visit, gladly, however I am currently restricted in all movement since my back surgery a month ago. I often think about writing you about my medical journey, as many of my doctors relate to me as their “interesting” patient, but feel it would be a burden on you. I have not met you in RL, yet we know common individuals: K & S (in brunswick) Ally (CT).
    If you are interested in an email penpal who also hasn’t really figured out what is wrong with herself, feel free to email me at jgrey1217@gmail.com.

    Thanks for letting me read along. Some of it hits home at times.

    • Del said,

      Allura:

      Please, *always* feel free to email me. I can sometimes be terrible about getting back to people in a timely fashion, but receiving messages from people who find inspiration and comraderie from what I write is the opposite of a burden.

      Also, as I just posted in “Looking Towards Surgery”, as Rave and I prepare for the panniculectomy and the ensuing month-long stay at the end of December, we will be looking for people for all kinds of help, even from people who can’t leave their homes. We are currently looking for someone to create and maintain a membership-based email list so people can be kept up to date and be able to correspond with others who may have insights/information on the situation. We also are looking for people who are willing to “captain” phone/email trees to get emergent/time sensitive information out to all the people who want it (like “Del’s out of surgery and safely in Recovery; should be moved to ICU in two or three hours.”)

      Thank you for your kind words and I hope to hear from you soon!

      ~Del

  3. Casey said,

    I’m really surprised the doctors haven’t pursued the possibility of lupus more vigorously, especially since your mother had it. As you know, the ANA is not the only diagnostic criterion for it, and SLE has so many dire effects on so many of the body’s systems. I’ve followed your health stories loosely over the last several years, not wanting to play amateur diagnostician with you, knowing how useless that is in general and how difficult it is in particular–but I have always thought, given everything I’ve read, that the problem almost *has* to be an autoimmune disorder of one sort or another. I know someone who has both SLE *and* fibromyalgia. Lucky her. 😦

    I really hope things start looking up for you soon.

  4. Casey said,

    That was supposed to say “for you in particular.” So much for proofreading.

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