The Event, Part 6

11/26/2019 and Beyond: Aftermath

Although I had been discharged, that wasn’t the end of the recovery process. As previously noted, I had to stay on the nimodipine for another three weeks, which meant waking up every four hours to take two gigantic pills. I’ve never had so many alarms set on my phone in my life. (The tone I chose for these alarms was the “Barking Dog” sound, because that was the least jolting one I could find. After 20 years of having dogs around, you get used to all the barking.) Annoyingly, my “hip flask” refused to adhere to the same schedule as my medication, so in between the times when my phone was barking at me, I had to get up at odd hours to empty that thing out. As a result I didn’t get more than two or three consecutive hours of sleep for nearly a month, and I doubt my wife did either.

On top of that, after weeks of enforced bedrest, my endurance was shot. The first morning I was home, after showering, I attempted to perform one of my routine tasks: Feeding the cats. This is a fairly simple matter involving picking up their bowls, carrying them into the kitchen, washing them, scraping food into them from the cans, and bringing them back. I got about halfway through this job before I had to collapse onto the couch to rest.

Wife: “You’re not doing that again for a while.”

This pattern was repeated a number of times over the next few weeks. I couldn’t finish loading or emptying the dishwasher. I got worn out scooping kitty litter. I couldn’t carry out the trash. I certainly couldn’t run the vacuum. (I did have help with all these things, of course, from my wife, parents, and visitors, but I tend to keep pretty busy, and suddenly I couldn’t.)

The first several days home, mostly what I did, activity-wise, was wander around the house, just because I could. Everyone knows that you quickly lose strength when you’re confined to a bed for any significant period of time, but one thing they don’t tell you—at least, I had never heard it before—is that it makes your legs really sore. In the hospital, after finally being cleared to get out of bed, the first few times I stood up it felt like somebody was whacking me in the backs of both thighs with a crowbar. This made both getting up and sitting down painful. The neurologist had explained that this was related to iron-rich blood pooling back there (or something like that), and that stretching wouldn’t help; he was right about that, but getting up and walking around did. So did physical therapy. My insurance company had authorized me for three (count ’em!) in-home PT visits to work on strength and balance, both of which were issues after my two-week sojourn in hospital beds. The physical therapist was an exceedingly pleasant Midwesterner who loved to chat while I was doing leg curls, squats, stretches, etc.

Me (after speaking to physical therapist on the phone for the first time): “Wow, that guy was really cheerful.”
Wife (after a moment): “I can’t tell if you’re being sarcastic or not.”
Me: “I’m not. If I were being sarcastic I would have said it like, ‘Wow, that guy was really cheerful.'”

These exercises were nothing particularly strenuous but man did I feel the burn the first several times I did them. (I performed the exercises twice per day in between visits and for weeks after the visits stopped, until I started to get back into a regular exercise routine instead.) After our first session the physical therapist remarked that I seemed to be doing very well, considering what had happened to me.

Physical Therapist: “I’ve got another patient who had what you had and he’s in really bad shape. He checked himself out of the hospital after a few days and he’s not doing well at all. He seems to be deteriorating.”

So if you suffer a subarachnoid hemorrhage, kids, and the doctors tell you you need to be in ICU, remember: You need to be in ICU.

The same day I started PT, I had my first post-hospitalization follow-up, with my regular physician. As the physical therapist had, the staff at my doctor’s office (including the doctor) sort of looked at me like I was a coelacanth or a unicorn: A mythical creature nobody ever expects to encounter, alert and moving around less than a month after a ruptured cerebral aneurysm.

Nurse (reviewing notes): “So you had a cerebral aneurysm about three weeks ago.”
Me: “That’s right.”
Nurse: “How did they find it?”
Me: “Oh it ruptured.”
Nurse: “What???”

At the end of my post-hospitalization follow-up the doctor removed the Foley catheter and I was finally rid of my hip flask, which was a milestone I had really been looking forward to. It’s a lot easier to move around without having a tube coming out of that particular region. Everything seemed to be working properly again, elimination-wise, so that was the end of the catheter saga. If I never encounter another one of those it will be too soon. And yet, for some reason, I keep running into them in books I’ve been reading lately, for instance, in Leviathan Wakes:

When he woke, he was breathing on his own. His throat felt sore and abused, but his hands weren’t tied down. Drainage tubes ran out of his belly and side, and there was a catheter the size of a pencil coming out his penis. Nothing particularly hurt, so he had to assume he was on pretty nearly all the narcotics there were.

That whole ICU sequence sure did sound familiar. And not just the catheter part.

As the week went on, my body temperature fluctuations continued, as did frequent, heavy, unexplained night sweats. I wasn’t hot; I was just sweating, for no good reason, sometimes so much that the sheets got soaked. I took to sleeping with a couple of big towels nearby so I could put one under me and one on top of me on particularly bad nights. (It took weeks for these to resolve, and every once in a while I still wake up inexplicably covered in sweat.) Between the sweating and the spiking temperatures, I didn’t really notice, a few days after my catheter was removed, that my baseline temperature had been creeping up, but some friends who had come to visit us on Thanksgiving evening did, when hugs were exchanged just before they left:

Friend #3: “Do you have a fever? Sorry, I’m going into Mom mode. But do you have a fever?”

I dug out the ear thermometer, scrounged up a new button battery for it, and lo: I did have a fever. But it was only 101 degrees and change, well within the range of my temperature variations over the previous few weeks. Still, I decided to keep an eye on it overnight; it wasn’t like I wouldn’t be getting up to take a pill every four hours anyway. And instead of fluctuating, this time, my temperature just kept rising. When it got to 102.9, around midnight, I decided it was time to go to the emergency room again. Naturally, on the way to the hospital, after being out in the cool winter air, my fever broke, and by the time we got there it was back down to just about normal. Given what had happened in my brain a few weeks earlier, I decided it would be prudent to go to the emergency room anyway, where I once again had the experience of nurses and doctors looking at me like I was a unicorn after they found out what had happened to me. They drew lots and lots of blood (maybe I should have kept the PICC line …) to look for a blood infection, collected a urine sample, and took me for another CT scan see what was going on in that head of mine. They also tested me for the flu, which involved shoving a bristly brush way far up into my sinuses. No, farther than that. You know how chimney sweeps operate? Okay, imagine Dick Van Dyke shoving a brush into your nose and leaving it there for a while and you’ll get the idea. It was not pleasant.

Me: “Okay, that was like the worst thing ever.”
Wife: “Really? That was the worst thing ever?”
Me (beat): “That was the like the worst thing ever during this visit.”

The flu swab and blood culture both came back negative, and they told me the CT scan showed the aneurysm remained coiled, so that was good. The urine culture, on the other hand, came back with a raging (technical term!) Klebsiella oxytoca infection, almost certainly acquired via the catheter while I had been hospitalized. They shot me up intravenously with a comically enormous syringe full of antibiotics, which I swear looked like this:

reanimator
And then they sent me home at about five in the morning with a prescription for a week’s worth of more antibiotics. So that seemed to be the end of that, except that later in the day we got a call from the emergency room doctor about the CT scan:

ER Doctor: “We had a radiologist review your CT scan and she’s concerned because there’s blood in the area around your aneurysm.”

Now you may remember that the last time someone in the family had their results reviewed by a radiologist after getting the initial all clear, bad things resulted. In this case, the doctor said, because the radiologist didn’t have anything to compare the CT scan to—my previous scans were all at a different hospital, not in my primary medical group, to which the ambulance had taken me—she wanted me to come back in late in the afternoon for a repeat scan to see if the quantity of blood had changed. Foolishly, I had thought the other hospital had passed all the records, including the scans, to my primary physician, but it turned out all he had was the notes. An effort then began to get hold of the scans, which was complicated by the fact that non-emergency departments at the hospital were closed on this post-Thanksgiving Friday; nobody was available in Medical Records or the Radiology office, and although someone at the other hospital said that the ER doctor could call them and get the results transferred, he was unable to reach anybody who would do that for him. I didn’t really want to get another CT scan, having been exposed to plenty of needles and radiation already, but I tentatively booked a time to go back. Before that happened, though, the ER doctor—who put a remarkable amount of effort into this case—was able to reach the surgeon who had performed my coil embolization.

ER Doctor: “I talked to your surgeon and he thinks it’s old blood on the CT scan. He said you had a lot of blood in that area. Since you aren’t having any other symptoms and we found a cause for your fever, he doesn’t think you need the repeat CT scan. But it’s up to you.”

To CT scan or not to CT scan: That is the question. But we were pretty sure my surgeon had hung the moon, and since it was up to me, I opted to forgo yet another dye injection and dose of radiation. The antibiotics knocked out the infection pretty quickly, and all was well. And you can bet the first thing we did the following Monday was go to the hospital where I’d been treated and get my imaging discs from Radiology so we could bring them to my primary medical group.

At this point, although I was in pretty good physical shape and didn’t seem to be suffering any deficits in memory, speech, etc., I was not entirely free of the effects of the ruptured aneurysm. I was still quite sensitive to light (it would be at least another week before I could go out in the backyard for more than a minute or two without sunglasses), and too much activity made me nervous and agitated. Worse, I was unable to look at LCD screens for more than one or two minutes at a time without becoming fatigued and/or getting a headache and having to go lie down. Obviously this is problematic when you work with computers. The e-ink screen of my e-reader did not affect me in this way, nor did regular print, like in a magazine, although it was still some time before I could concentrate on reading anything for more than five or ten minutes without getting tired and needing to close my eyes for a while. (Having to wake up every four hours probably didn’t help with any of this.) I did get caught up on reading some of the books on my device, but unfortunately, most of them were so-so.

Things went on like this for some weeks, with me gradually increasing the time I could look at a monitor and be exposed to sunlight, until I had my follow-up with the surgeon to review my case. Like the other physicians, he was pleased with my progress, and cleared me to get back to regular exercising, eating normal foods, drinking coffee (oh yeah!)—basically, for slowly resuming normal activities.

Me: “Can I drive now?”
Surgeon: “Could you drive before?” (beat) “I’m not falling for that old joke again.”

The surgeon told me I would need to come back at regular intervals—every six months, for now—to check the status of the coiling and make sure there’s nothing untoward  going on inside my head (other than, you know, the usual); he indicated there was a small chance (5% or so) that the aneurysm would bleed again at some point, but with the coiling in place, there was an even smaller chance (1% or so) that the procedure would need to be repeated. My blood pressure had been slightly elevated prior to The Event—not enough to worry about, except, of course, for the aneurysm, which is a pretty big “except for”—so he suggested that, once I finished with the nimodipine, we monitor it for a little while and if it crept upward again, start medication to lower it.* And that was the end of the follow-up visit.

Me: “My mom told me to give you a hug from her, but …” (extends hand to shake)
Surgeon: “Oh we can do a hug.” (hug ensues)**

After getting cleared for exercising at the follow-up, I returned to using our rowing machine, starting at 3 minutes per session and increasing by 3 minutes every week until I got back to my previous time of 15 minutes three times a week; I also resumed using the Bowflex (which I would have used the morning of The Event if I hadn’t made the prudent decision to skip it after the weird attack of vertigo that kicked everything off), starting, of course, with greatly reduced weights. Not long after that, at the beginning of 2020, I returned to work, a couple of weeks ahead of schedule. We also returned to our dance studio (with more frequent breaks and no sambas at first), and recently had our first actual lessons since I was hospitalized.

At this point, as far as I can tell, I have no lingering cognitive or physical symptoms (other than the occasional odd night sweat and a slight change in my vision, confirmed by an eye exam a few months after The Event) as a result of my subarachnoid hemorrhage. Statistically, this is a fairly unlikely outcome. Depending on the source you look at, the overall fatality rate for a ruptured cerebral aneurysm is 40-50% (15-25% of victims die before reaching the hospital), and of those who surive, about two-thirds suffer a permanent neurological deficit. Taken together, the odds of avoiding either of those results is only about 17%. Anectodatally, a lot of people seem to know someone who died unexpectedly*** of a ruptured aneurysm; fewer seem to know someone who survived.

No one can really explain why a particular person might have them. Genetics play a part, as does smoking (of course), diabetes, heavy binge drinking, and the use of certain drugs. And then there are people like me.

Surgeon: “There’s not really anything I can recommend that would have let you avoid this. I mean, I could say lose 50 pounds, but you don’t need to. Unlike some other people.” (pats own stomach)

Despite the serious nature of the condition, not a lot of research money goes towards cerebral aneurysms—the site linked above states that the US federal government spends less than 83 cents per affected person per year. Other organizations do research into the topic, and Daenerys Targaryen Emilia Clarke, after her experience with cerebral aneurysms, started a charity dedicated to acquired brain injuries. It’s always good for a relatively rare condition to have a celebrity spokesperson. Especially one armed with a dragon.

 

And as for me? I’m pretty much back to normal, or, to paraphrase the name of Emilia Clarke’s charity, I seem to be The Same Me.

But you can call me the Quarter Million Dollar Man.****

267000


* It did, and we did, and my blood pressure is lower now.
** My mom was extraordinarily pleased when I told her about this.
*** The typical way cerebral aneurysms are detected is that they burst.
**** This is the hospital charge ONLY, not including separate charges for anesthesia, surgery, etc. Taking everything together, including the second ER visit, the total charges are almost certainly over $300.000. Fortunately we have decent insurance (which we pay extra for) and are not going to be responsible for  anywhere near that amount; but we’re not going to be fixing our bathroom or remodeling our kitchen any time soon, either.

16 thoughts on “The Event, Part 6

  1. Wow! You are so amazing indeed! We would love to have determined folks like you in the rehab area of our nursing facility, LOL!

    We know a young man who has some kind of blood vessel abnormality in his brain…and other areas…and while not an aneurysm, it did cause him to have bad seizures until it got diagnosed. His brother as the same thing in his nose, and he gets severe nosebleeds. Imagine if he had those in his head:(

    And yes, in my work, I have seen too many times the effects of aneurysms. Sadly enough. And known some peeps who were with us one moment and gone the next.

    I am so happy you were spared all that and now can relate your story to others. Maybe you should publish it or at least send copies to those who aided in your care and recovery.

    (I am a stage 3b ovarian cancer survivor (2006/7), and I tell many folks all about it, so they can learn a few things about how to be proactive, and how to maybe find something in their bodies before it becomes an issue. I gave a brief note to my oncologist so that others could read about it who would be in his new practice after he left our state for another…sigh…but I still see his partner every year.)

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  2. In all my years of working on Physical Rehabilitation you are the first person that I know that God has awarded you the title of “Miracle” Jim. Sorry the event, hospitalization and recovery has been a major rock in the shoe. I believe God has chosen you to use your talents for this earth. Many, many blessings.

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  3. WOW what a wild ride that was James! Your sense of humour & the fabulous care you received all helped to get you back on your feet….I chuckled about the Doctor who said you ‘could’ lose 50 pounds but it was not needed & pointed at himself!! That is my kind of doctor; self-deprecating!!!!!
    I have to say you are a WARRIOR dude! You’ve boldy (more or less) gone where no one wants to go & survived!!! Total respect James!
    Your ‘home’ Nursing staff: Lulu; Hipster Kitties & wife are the best!!!!
    I hope & pray this is a one-off & you will live a long life w/out such an event.
    {{{hugs}}} Sherri-Ellen & POTP an **purrss** BellaDharma

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  4. A young man in my grandson’s senior class had an this hideous event in October…while playing football. Today, at the basketball game, he got to suit up for the very first time…no jumping, but my grandson tipped the ball to him and he made a two-point basket.

    The crowd gave him a standing ovation. The other team was also given a two-point basket to start the game.

    This young man very graciously said: “I thank each and every one you for pulling for me. And for God letting me live and come back to my normal self!”

    You and he are true heroes!

    I am so glad you are becoming well again!

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  5. In all my years working on Physical Rehabilitation Unit, you are the first that I known to survive this event with no physical or cognitive impairment. God definitely blessed you the title of ”Miracle” Jim. A title that is seldom awarded by God. God must have more work for you to do on this earth. Many, many blessings.

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  6. We sure would have hated for Charlee, Chaplin and Lulu to have lost their Dada. 🙂 I would say a hurray for a happy ending, but it’s more of a happy survivor story, now isn’t it? In any case, so glad you lived to tell the tale.

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  7. Oh, what can I say? You are a unicorn indeed. And to make it through all this without any neural defects makes you an extra special unicorn. Even more rare than the “normal unicorns”. I read the data and stats that you posted here and it is pretty much what I found on my own research or I already knew your unicorn status. I’m glad you had insurance despite the quick change they did on you. Even if my sister survived hers, I don’t think she would have had a successful recovery. Due to a lack of insurance, she would not have followed up as you did. You were a very obedient patient but I fear she would not have been. I am sure everyone has appreciated your detailing of “the event” but perhaps no one more so than me. Thanks for sharing it Jim. Many of your words have echoed through my brain for the last 2 weeks.

    Carol

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    1. I’m really sorry about your sister. I can sympathize with the shock, having almost present one to my family. Even with a small aneurysm like mine it seems that when they rupture it’s always a pretty near thing and there’s definitely a narrow path to a good outcome. Lack of insurance interfering with getting the necessary treatment, or a lack of compliance like with the patient my physical therapist mentioned, would only make it narrower. 😦

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  8. I am glad you have returned to normal with no long lasting effects from this awful ordeal. It anmazes me how quickly our bodies lose strength when we are confined to bed for a short length of time.

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