Congestive Heart Failure And Me

August 27, 2014 at 11:22 am (Congestive Heart Failure, Hospitalizations, Living With Chronic Illness, Medical, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , )

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.

*BONUS ROUND*

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.

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Even the Predictable Isn’t.

March 26, 2013 at 5:38 pm (Hospitalizations, Medical, The Panniculectomy) (, , , , , , , , , , , , , , , )

This will be short, as I can still feel the effects of the Versed, Fentanyl, and Morphene in my system. Today I went to JH to get the new drain put in via Interventional Radiology. I’ve had it done twice before, so I wasn’t nervous or worried much; my only fear was that something odd would happen and they’d make me stay at the hospital, as the first two times were done as part of a bigger inpatient stay, and this was supposed to be outpatient.

I whisk through registration, and only wait for about ten minutes before it’s time to go back and gown up. I’m cool as a cucumber, watching some Netflix and joking with the nurses. They come to take me into the procedure room and other than the knowledge that this is going to hurt quite a bit, I’m still doing okay.

The first two times I had this procedure, it was done on an emergency basis, so I wasn’t able to do things like fast and limit my fluid intake. They tell me this time, that could be why the “twilight sedation” didn’t do much for me. The truth is, the first time I wasn’t given much of anything due to my blood pressure being too low; the second, I was given very little. This time, the nurse cooks up a cocktail I can feel; although I didn’t fall asleep (because, well, having a wire shoved into the sorest part of your abdomen isn’t really dreamland material), but I did find myself following trains of thought and being generally spacey. The nurse kept bringing me back to reality by loudly asking me to breath deep breaths; I couldn’t see the stat board, but I assume that even with the oxygen and my CPAP, my pulse ox was dipping. This is common for me when I have to lay flat on my back, which is why I never sleep that way.

When the procedure was over, they wanted me to shimmy from the procedure table to the gurney. I remember distinctly, both times before, being allowed to sit up, come off the table, and then turn around and hop on the gurney. This time, because I had been given much more sedation, they would absolutely positively not allow me to do this (and actually denied that it had ever been done, but whatever). Part of my chronic issue is that my arms and legs are very weak, so between the soreness in my abdomen, the terrible pain in my lower back from having to lay absolutely flat for so long, and the weakness in my limbs, this shimmy plan was not going to happen. So they grabbed some big burly doctor/orderly types, and yanked the sheet with me on it onto the gurney. Let’s leave it at: I cried. It fucking hurt. It hurt my newly punctured abdomen, and it really hurt my screaming lower back. They look at me like I’m an idiot, and without even putting something under my head to support it, they wheel me to post op.

Because of the pain, and that I metabolize sedation super fast, once I was in post op the first thing I asked for was if I could sit up. They bring me a recliner and my back is forever grateful. The nurse starts taking the personal items off of the gurney, notably my cpap machine, which some nurse has graciously packed up for me after the procedure. Except.

See, my CPAP: it’s a machine I use at night that forces air into my throat and lungs in order to bypass any partial or full blockages my epiglottis or other anatomy puts in the way. Sleep apnea is becoming fairly common, and I can name at least ten of my friends who use some sort of apnea device to sleep or who have had surgery because of it. And most machines have a water reserve, since pushing dry-ass air into your mouth and nose all night can be harmful; the machine humidifies the air (great for when I’m sleeping in hotels!), and you can control how little or much humidity is released. However, the big fat honking rule, for what I feel are fairly obvious reasons, is that you have to empty the water chamber before you pack up the CPAP. In case it’s not obvious, failure to do that means that the electronics that make the CPAP work get water all over them, and they think it’s a spring break wet tee shirt contest and stop working.

So I’m in post-op, and the post-op nurse is moving my CPAP case from the gurney to a table in the recovery space. She notices the bag is soaking wet. I groggily try to explain to her that I’m betting the nurse left the water in the chamber, and the machine is now broken. Now, to be fair, this has happened twice before to my particular machine. Since it is often people other than me who pack up my stuff, it’s been packed with water in it before. However, the big difference is, when my friends have mistakenly packed it wet, it was after a full night’s sleep, so there was very little water in the chamber. The nurse in the procedure room had filled it as though I was going to sleep for eight hours, and then only used about an hour’s worth of water.

We plugged it into the wall, and I was right. It tried to start up, but it wouldn’t go.

I don’t think I’ve seen more nurses turn pale white. Fucking up someone’s personal, very expensive, medically necessary machine is, one would guess, one of those things nurses don’t just get away with. All of a sudden, there was a lot of hustling and bustling as they were trying to figure out what to do. Secretly, Rave and I knew that she had an old machine back home, so worse came to worse I could use that, even if it wasn’t set to my specficiations, at least long enough for me to see the doc and get a new one. But even with that in hand, my biggest concern was making sure that from the moment we discovered they were responsible, and there was absolutely no way I had done anything to cause this, that Johns Hopkins was buying me a new effing CPAP. (And what good timing, as mine is old and makes a lot of noise compared to the newer models!)

Then the charge nurse announces that they can’t legally release me until they know I have a CPAP to use that night, and if we couldn’t figure something out, they’d have to put me in a room. No way, I thought. I tell Rave to call my sleep doctor’s office and explain the situation to them, and see if I could get a loaner or something. Johns Hopkins is doing the same thing on their end. I covertly planned that no matter what my doctor’s office actually said, I would tell them I was getting a loaner, and I’d figure out the finanicals later.

But as it turned out, my doc’s office does loan out machines, pretty much indefinitely, if yours is broken. However, it was now 2:15, and the office in Frederick (about an hour away) closes at 4:30. So my discharge goes in fast forward: I’m given some morphine to make the drive home a little less unpleasant. Since I’ve had this sort of drain before, they skip teaching me how to take care of it. They grab me a bunch of supplies, since I need saline flushes for the drain and they’re pretty hard to come by over the Internet; there’s other stuff, but I have most of it at home. And then they even call one of their orderlies to help Rave carry all the stuff back to the Duckbus so we can hurry our way to pick up the loaner.

We get to Frederick with plenty of time to spare, and it takes us all of 20 minutes to get the loaner. I get a phone call from Johns Hopkins Customer Service, as they’re just checking in that I was able to get to my doctor’s in time. I told her I was, and that I would be in touch very soon about how Johns Hopkins plans on fixing this issue. I must have sounded like a bolded statement, even though I was half-asleep from all the meds, because she gave me her personal line and promised that JH would replace the machine as soon as we could figure out all the details.

This is what I get for thinking any procedure involving me would go smoothly and without incident. I’ll be offline for the rest of today and possibly tomorrow recuperating from yet another tap of the Del keg. So far, the draining fluid looks serous, or not infected, so that’s a very good sign.

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