Recently, I feel like my life is like a very specific staple scenario from low-budget horror flicks. The Victim is running away from The Monster. Victim surveils the options; hide in that closet, climb that tree, shoot the gun, or step behind that curtain and surprise attack. In the proverbial theater, audience members already know the Victim’s fate: when they bury themselves in the closet, a strange hand emerges from the old coats and drags you through a gate to the Monster’s basement laire.
I’m not really a horror writer, partially because I am extremely picky about what kinds of horror stories I will read or enjoy. And usually I find myself confused and lonely when I realize that I’m the only one rooting for the Monster – or even having empathy for them.
But how this relates to my current circumstances? Let’s start with the practical.
I’m back in the hospital after yet another terrifying encounter in the Emergency Department’s ICU room. Again, my blood pressure plummeted to ridiculous proportions, and this time I also had sepsis. I was stuck in the ED ICU for over 30 hours, as beds in any of the departments prepared to handle my case were rare at best. There was a fleeting discussion of putting me in the pediatric ICU (and if that had happened, it would not be the first time I was routed through peds to get a critical situation taken care of quickly). Eventually, I was admitted to “Stepdown” – more intense than a regular medical floor, but less so than ICU. This time, the floow I was on was much closer to ICU than the one I stayed in last time. There was a fight about whether or not I could use the bathroom on my own, and the “door” to the loo was a curtain that left much to …glare at.
Eventually I was transferred to a more typical medical floor, where the doctors are working to once again give me the Violet Bureagards’ treatment. My attending doc, who I will call “Dr. Nice Guy” because he really is a very sweet guy, made it abundantly clear to me that this time things are going to move slowly and take a lot of effort. At least I’m in one of the newly designed rooms (in fact, the exact same one I had when I graduated from the Janitor’s Closet) which has a lovely view of the Dome.
But no matter how lovely the view is, I’m frustrated and angry and depressed. Having an occasional break from the world is nice; not being able to make plans or have privacy whenever I want or need it are not. It may seem like a terribly small issue in the face of a terminal diagnosis, but it really is the little things. I don’t need fireworks or beach breezes in our gauzy sand boudoir. I just want to be able to read in peace, to chat or speak to friends as so I choose, to order chinese or eat dessert first.
I feel shitty. I have a lot of pain directly related to the CHF or the renal insufficiency. I don’t get good sleep in hospitals; I barely get good sleep at home unless I can sleep from 8a to 12p or something like that. I have a lot of raw skin and blisters. I very rarely get excited over what kind of food we’re getting for lunch.
There are other stressors, too. My soon-to-be-ex is exacerbating my current situation as much as he’s helping. It is his insurance which gives me access to the doctors and programs, but there are new vaireables that have been introduced that only make it more complex and fucking depressing. Both my beloved Duckbus and Rave’s truck bit it within a few weeks of each other. We purchased LRH; a fat, sweaty, charismatic white minivan that looked better on paper than in real life.
Hel has declared this year The Year of Difficult Choices. That was not Her first pick, nor even the second, but it was the one I thought I could both live with and explain to other people when needed. I’ve already been faced with some very taxing choices, and there are many more to come. I was very assured that so far I’m doing a good enough job choosing the path(s) She finds the most pleasing.
I find myself thinking about my childhood and young adult years; about the people I would have killed for then, for whom I wouldn’t even push someone out of line at the supermarket for.
I’ll write more later. In case you’re curious, I am in the Nelson tower in room 788 and would like visitors (who let me know when they are coming ahead of time).
I have been diagnosed with stage 3, right sided congestive heart failure. Let’s break that down so you understand what that means. Keep in mind, I’m not a doctor and this is by no means meant to be a completely scientific lesson on heart disease. I am sharing the information I feel will help my friends and family understand how this diagnosis affects me and what it means. Feel free to ask your doctor for more information.
I’m going to start with the “congestive heart failure” part. Your heart is a wickedly smart little organ. It knows exactly how much blood each of your organs needs to operate at their maximum. When one or more of the organs needs more blood, the heart is able to increase how fast it beats, pushing blood faster where it’s needed.
The first symptom I had was that my heart was beating pretty fast – upwards of 120bpm. Obviously, that can be caused by a lot of less serious reasons, so although it was something my doctor was aware of, it didn’t cause any alarm all by itself.
Meanwhile, my right ventricle, the one in charge of getting the right amount of blood to my lungs, thought something was up. It wasn’t getting as much fluid back as it was sending out, which is cause for concern when you’re a right ventricle. It assume that there has been some trauma or injury to the lungs wherein there is blood loss, so it wants to pump harder to make sure the wound doesn’t drain the blood the lungs still need to function.
But in my case, it was not a wound that was causing the lack of fluid return. My body was soaking it up, in the form of edema. That’s the reason my feet and ankles, and then eventually my abdomen, got really swollen. The reason my heart thoughts my lungs were in trouble is because my lungs were really struggling with keeping my oxygen levels high enough to function. The struggle was primarily caused by my sleep apnea – I was using a CPAP setting from 2005, and a lot has changed since then. I need a BiPAP in order to get the right amount of oxygen at night, and the more oxygen and the less carbon dioxide in my system, the less the demand on the right ventricle.
CPAP? BiPAP? Is this like a Pap smear?
No, thank goodness. Continuous Positive Airway Pressure is one way to make sure someone’s airway is open and functioning while they are asleep. If you’ve ever shared a bed with someone who snored terribly, that snore was likely caused because it was the only way to get the passages open enough to maintain enough oxygen. With a CPAP, it gently blows air into your nose (and mouth if necessary) to help keep the airway open.
With CPAP, there’s one number: the amount of air pressure the person needs to keep their passage open all night. However, if the person needs a very high amount of pressure, it becomes difficult to exhale without feeling like you have to use your exhale to push against it. What makes sense is to have two pressure settings: the higher one when you breathe in, and the lower one for when you breathe out. Thus: BiPAP. Bilevel positive airway pressure. BiPAP comes with a second usage, which is that it can also stand in as an external ventilator should someone have significant trouble breathing night *or* day.
I knew I needed a BiPAP for a few months, but I was dealing with a lot of doctor office monkeyshines and did not get it. But I will have one when I get home, as the hospital has taken care of that.
The Right Side of Heart Failure
Like I’ve said earlier, the right ventricle is specifically tasked with keeping the lungs happy. Because I was having severe O2 deprivation due to the apnea, my poor little right ventricle did all it could do. Now it is damaged from being overclocked for so long. Part of the reason it took so long to figure out what was going on is that the symptoms of heart failure are easily attributed to being fat, even if you aren’t really fat to begin with. CHF makes you feel tired all the time, it robs you of your stamina, you lose your breath even when you aren’t doing anything, and then the swelling comes. The edema is made worse when it gets to the abdomen, because then it is putting extra undue pressure on the diaphragm and lungs, making it even more difficult to breathe.
Although I am still a little angry about it, I have come to accept that even though I was clear with many doctors about these symptoms as soon as I noticed them, many of them dismissed me and told me it was because I was fat and I should reconsider weight loss surgery. (In case you weren’t a reader when I wrote my many rants on WLS, look at the tags on the side of this page for more info). I mean, my weight is a contributing factor (but not the only factor!) to my apnea, so in a way it is also a factor in my heart failure. But lots of people get CHF, and getting it at my age is getting more and more common.
What does this mean? Are you going to have to stop traveling/teaching?
Well, Del is going to have to get used to a daily regimen. Not only am I increasing the amount of prescriptions I need, but there are other changes I need to track carefully. I will have to weigh myself every single day (whee!) and do it in kilograms because metric! If I gain even a little bit of weight, I have to call my doctors ASAP to see if it’s related.
I am also going to have to learn how to live with strict fluid intake rules. I am only allowed to have 2000mg a day of any kind of fluid – that’s 2 liters. I have a plan on how to measure this, so hopefully that will work. I’m just from a world where drinking fluids was a good thing, and there was no such thing as too much water.
The reason I have to restrict my fluid intake is because should my body have extra fluid, it is likely going to shunt it into edema, because the right ventricle will be all like, “Hey feet, I got some extra fluid here, so I’m a hook you up!” and my feet will be like, “No, dude, we’re already super full! I’m sure your fluid is tasty but I can’t even imagine another…oh. Thanks.”
The last part I’ll tackle is the Stage 3. There are 4 stages, with 1 being asymptomatic and 4 being severely damaged and in need of interventions like surgical implants, surgery, or transplant if the patient is young enough to recover. 3 means that I have significant symptoms, but we’re hoping that with a minimum of intervention I should be okay for a while. But I’m going to give it to you straight – this is not a thing you take a pill, you stop eating salt, and everything gets better. This will degenerate and become more bothersome as time moves on. At some point, I plan on writing about how this diagnosis takes some of the vagueness out of “Del is sick”. The monster in the closet (or at least one of them) has a name, a face, a sense of reality.
Please feel free to ask questions in the comments below. Just please don’t break my rule of offering treatment options unless you are a professional. I don’t want to know what your Uncle Tommy did to recover from CHF, nor do I want to read that article you saw on how CHF is a made-up disease to sell cardio meds. But at the same time, I want to make sure everyone has a clear understanding of what’s going on with me and how it affects things moving forward.
My blood sugar numbers were also wacky out on control when I got here, and I had a great endocrinologist who helped get me back to a normal-ish level. When talking about follow-up and finding the endo, I took a chance and mentioned that I was hoping to find an endo who would manage my diabetes *and* administer T. Without hesitation, he made me a recommendation to a Hopkins endo who does T for lots of different people. Even got me the number of the pysch I need to see for clearance before we can talk about T. He keeps reminding me that this is a maybe, not a yes, because I am so complicated; but he also said it may come down to an informed consent situation, where we go over the pros and the cons and then I choose what I think is best.
Sometimes it feels like I’ve only been in the hospital for 3 very long, very blurry days. Other times I feel like I’ve been here for six months already. I know all the different nurses and techs by their first name (and have nicknames for most of them, like Nurse Anxious or Nurse Snake). In reality, I’ve been here for 14 days exactly.
My days are pretty similar and rote. A nurse comes in at 6am to give me meds and get my vitals. Usually they drag the scale in and weigh me then, too. There’s no use in trying to go back to sleep, because the parade of phlebotomy, examined by the day’s attending doc, breakfast being delivered, the rounding doctors arrive, and then it’s 10am. Even if I do get back to sleep, the whole circus begins again around 1pm, this time with the additions of specialists like physical therapy or IV tech or whomever else wants to talk to me. On and on, I sleep for 10 minutes here, half an hour there. The doctors begin to notice I’m not getting enough sleep.
That might have something to do about me falling out of the bed.
One of the odd symptoms that people with untreated or undertreated sleep apnea develop is falling asleep sitting on the edge of the bed. Many of them don’t remember sitting up or moving at all, others catch themselves nodding off a few times but you don’t think about laying down (at least I don’t). You begin to rock back and forth and usually sometime in this process your hips and back go cataplectic (go limp) and if you’re lucky you wake up as you fall backwards onto your bed.
In this particular incident, I do not remember sitting up, waking up, nothing. I only become aware that I am falling and I should go limp so I don’t break anything. I don’t even have proof I fell from a seated position, and in fact by the way I landed I’m not sure I did. But at the time, I was just aware that I was on the floor, tangled in both my catheter and oxygen tubing. Oh, and somehow in the fall my gown fell off, so I’m buck naked.
The fall made a fair amount of noise, at least from my perspective. However, my door was shut and I didn’t hear anything that resembled the “OMG A PATIENT JUST FELL OUT OF BED” alarm I assumed they implanted in all their patients. In fact, I began to become aware that my call button was back in the bed and I didn’t know if I could reach it without pulling on the tubes I was tangled in. I had just started slowly pulling myself towards the bed when the night tech randomly decided it was a good time to check my foley output. Instead she finds me on the floor, naked, looking pretty damn shook up and twisted up in my tubes. It takes her a moment for her brain to get over the surprise and call the nurses.
So yeah, I think everyone is duly concerned about my lack of sleep. Last night they brought in a BiPAP for me to use. I thought of BiPAPs as being the bigger, badder brother of a CPAP. Something that looked like this:
Or maybe this:
But what came through my hospital room door was this:
Needless to say, I was a little intimidated. However, the night went okay. It wasn’t one of those “Oh What a Miracle!” mornings that some people get when they try CPAPs or BiPAPs, but I slept uninterrupted for at least four hours, which for this joint is like a record.
So when are you coming home?
Nobody knows for sure. I could easily be here for another week, or less, or more. The doctors are basically waiting for my body to say “Whoa there with the pee storm!” – there’s something your kidney does when you’re “done”, and they’re waiting for that to happen. I am making remarkable progress – I have lost over 50lbs of water weight. That’s an average of 4-5 liters a day. I have been taking in less than 2 liters of fluid (believe me, not fun for a fat kid who was raised on the idea that you can always drink all the water you want).
I am going to end with the totally predictable link to my medical-needs Amazon wish list. Let’s pretend I’ve done the “I really hate asking for things and I know I’ve asked for a lot already” dance and you’ve followed with the “Del, it’s okay, shut up already.”
It has been updated to reflect things that will be handy when I come home from this stay.
Again, thank you to all of my friends, followers, supporters, family members, for all the things you do. I appreciate every prayer, every email, every small gift, every visit, every odd chat session, every “thinking of you” e-card, etc. Thank you.
It’s now been officially a week since I have been admitted to Johns Hopkins. Although Rave and I both had tingly spidey-senses that a hospital trip was close at hand, we had no idea what we were in for.
I have been slow in telling people why I’ve been admitted, primarily because I’m still wrapping my brain around it and the effects it will have on my life going forward.
I have congestive heart failure. Specifically, right sided congestive heart failure, which is the rarer of the two. The doctors believe it was caused by my obstructive and central sleep apneas – a long story about which I am saving for another time.
I am requesting as strongly and seriously as I can that you do not ask questions or offer information (especially anecdotal or third-party info) about the causes, treatments, lifestyle adjustments, etc. THIS REQUEST PERTAINS TO THE INTERNET EVEN MORE SO THAN IN MEAT SPACE. One of the reasons I’ve been hesitant to post about this is because I am really not in a space to hear suggestions from everyone as to what to do next.
My second impetus for this post is more practical. In a perfect world, Rave would be here with me 24/7 until I was discharged. In the past, she’s done her best to attempt it but graciously accepted when she needed other people to step in. This time, things are much more challenging for us both as a unit and as two separate people.
What would be of help is people who could come and spend an entire evening with me (Ernie and Cookie Monsters may be warded against if necessary.). Throwing us a tank of gas (there are better turns of phrase, I’m sure) or helping us obtain parking passes. Specifically making plans to pick Rave up and take her to do de-stressful things. Rave may have some other ideas, and you may come up with ways to help that we didn’t think of.
I’m only going to add this next bit because I feel it’s necessary no matter how many times people have said it is not: Thank you from the bottom of my heart. We both loathe asking for assistance, especially with how generous our tribe has been for us, and we would NOT be asking if we saw many other alternatives.
Here’s the thing – I may be in here for another full week. In fact, that’s on the low end of the spectrum. It’s one of those visits where there is a goal to be met that can’t really be influenced by willpower or any kind of effort.
If you feel you want to help, contact us using our shared email address – delandrave @ gmail . com.
This is a wonderful article about how we lack the kind of language we have for love, jealousy, and other human experiences, for pain. We have moved away from seeing pain as a spiritual experience as medical science has learned how to dull it past the point of overwhelming sensation (at least some of the time).
What language do you use to describe your pain? Do you use the same words with your doctors as you do with your loved ones or caretakers? Are there works of literature that you feel expresses the kind of pain you experience, or details what it is like to be in acute or chronic pain?