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?
The following is an incredibly well executed essay on how doctors, naturopath, and Internet hoo-has completely misunderstand the role of weight, obesity, and nourishment in fat patients. Long time readers of my blog will hear echoes of things I have written about here, but I appreciate the ability to share someone else’s story, especially when that story took courage and steadfastness to post.
Originally posted on Ballastexistenz:
This isn’t a post I like to write. The idea to write it always comes after someone, who is not communicating with me in good faith, approaches me and makes snide remarks about how I can possibly need a feeding tube if I’m fat. Except they usually go beyond calling me fat. They usually make some reference to my weight that makes it sound like I’m unusually fat, just to make things worse. In one case, a known repeat cyber-bully (he has made threatening phone calls to a friend of mine — if I’d recognized him on sight I’d have deleted his comment unread) even told me he’d lost some relatively minor amount of weight during the course of a disease I don’t even have, and that therefore since I was still fat, clearly I couldn’t have any of the diseases I do have. It’s clear that most of the…
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Dear (My Primary Care Physician):
I don’t know if you are aware of the struggles I had this week with your office, so I will give you a short summary before I make my point.
My Oxycontin script ran out on Sunday. On the preceding Friday, my partner went to the office to pick up the script as she has done for months. She immediately recognized that the script was incorrect – it was made out for the short-acting oxycodone, rather than oxycodone ER or Oxycontin. She pointed this out to the front desk nurse, who disagreed with her and would not agree to have the script changed. My partner was willing to be wrong, so after 20 minutes of arguing she decided to leave and get the script filled on Monday (which is when the script was dated).
Obviously, we had to wait until Monday to fill the script, so I started going into withdrawal on Sunday night. It robbed me of the very small amount of ability to take care of myself and do the small amount of income-generating work I manage.
Monday, my partner went to 10 – no exaggeration, we can provide a list – of pharmacies, all of which said they didn’t carry that med. As we learned later, this is because the short acting oxycodone does not, in fact, come in a (amount redated)mg pill. However, most pharmacies won’t release any information about opiate scripts; they just tell you they can’t fill them. Finally, a pharamcist saw how harried my partner was and told her that the script was wrong and that’s why no one would fill it.
We had to wait until Tuesday *night* to obtain the corrected script, which was now three days of active withdrawal. The front desk nurse wasn’t at all apologetic, but was actively snide to my partner. When my partner asked for help locating a pharmacy that would fill it (so she wouldn’t have to repeat her wonderful tour of Hagerstown pharmacies) and was denied rudely.
Finally, at 7:30pm, I was able to take my first pill in three days. However, this was less than an hour before I was scheduled for my sleep study. I went anyway, but I am pretty positive the after-effects of withdrawal affected the results.
I see a pain contract as a two-way agreement, perhaps even a compromise. I agree to limit my choices and behaviors in part to protect your DEA licensing and ability to provide other patients with pain medication. In exchange, I am able to access legal medication I have a proven medical need for without shame or guilt. You agree to provide accurate scripts in a timely manner in part to keep me from undergoing physical risk from withdrawal symptoms. Even in the throes of suffering, I stuck to our agreement, not seeking out supplemental sources.
I would really like to find a way to streamline this process so problems like this stop occurring. It seems to me it should be fairly easy to make sure I receive scripts written for the right medication, and for the office personel to be more understanding and compassionate when I or my partner point out a mistake. At the very least, when it is revealed a mistake has been made, an apology rather than further attitude would be more appropriate patient care. Finally, I’d appreciate it if we could find some sort of timing mechanism so when I need a refill the process flows as smoothly as possible.
I am aware I hold few cards here – my options are to continue to deal with your office/practice or tempt fate by going to another doctor/practice. One of the reasons I fell in love with your practice was your ethic of being the main source of care for me, that you were happy to oversee as much of my care as possible before sending me to specialists. I see myself as a faithful patient, and it really pains me to feel like I’m a thorn in someone’s shoe. It seems like such a small issue, but this incident caused me a great deal of suffering as well as losing what little money I’m able to bring in independently. I’m also very worried the sleep study won’t be an accurate reading of my sleep patterns since I was in full-out withdrawal less than an hour before I went.
What can I do to help smooth this process? Are there other solutions or measures you can think of to keep this from happening? Were you aware of these problems?
Thank you for your time and attention to this matter.
Edited on May 6th to add:
My doctor replied within a few hours of receipt, offering a handful of solutions. We are going to change how I access my scripts so that I don’t have to wait until my pills are almost out to start the process. She also offered to address the behavior of the front desk staff at their next staff meeting, as well as make sure they are educated on the difference between long-acting and short-acting pain medications as they are indicated on the prescription print out.
So even though we went through a circus to get this month’s pills, hopefully things will be easier in months to come.