Spiral

April 21, 2015 at 7:59 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Living With Chronic Illness, Medical) (, , , , )

It’s been some time since I updated ye faithful readers as to what is going on with me medically.

Some of you may know that I’ve spent more time in Johns Hopkins than I have in my own home since August 2014. I was diangosed with right-sided heart failure and we struggled to figure out why I kept slipping into volume overload (when your body has a lot more fluid in the tissues) after being discharged. There are a lot of theories, but the story is about to change, so don’t jump to leaving a comment just yet.

When I get that swollen, the infected tissue from my pannus starts to hurt tremendously.

So the status quo since August has been:

  • Go to Johns Hopkins ED as directed by another doctor
  • Spend a month diuresing down to my dry weight
  • Deal with bad pain from my pannus
  • Get to dry waight, get discharged with plan
  • Do the plan by the letter
  • Notice that the swelling is back
  • Seven GOTO One. (in less geek terms, rinse and repeat.)

I’ve been in the hospital more often than I’ve been home in the last six months.

Things are moving quickly, but not in a way I would have chose.

Today I learned that my congestive heart failure now includes both sides of my heart (whereas before I had been diagnosed as having right-sided heart failure). This obviously affects my prognosis, and not in a good way.

I’ve gone ahead and canceled gigs through the end of the summer. Not only does travel become much more complicated when you’re terminally ill, but I can’t guarantee I’ll be out of the hospital, much less felling well enough. And that’s not fair to organizers.So if you’ve been hoping to catch up with me at Beltane, FSG or some other event I am usually at, you should start thinking about an alternate plan.

Tonight they are moving me to a different part of the hospital. I joke with my nurses that I’m trying to win “Hopkins Bingo”, where a patient must have a stay of longer than 24 in a building in order for it to count. When you’ve stayed in all of the different buildings, you win. I got a difficult square this time; Bloomburg is 95% pediatrics, but one floor is the cardiac ICU stepdown, which is where I was. That’s not easy to get at all unless you’ve been playing this game far too long.

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Reality Bites

March 1, 2015 at 2:40 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Medical, The Journey Towards Diagnosis) (, , , , , )

This entry will be short and to the point. I know, so unlike me. Well, here it goes.

stoneandballoon

Today is my Mom’s birthday.

Yesterday, I met with a Hospice/Palliative Care nurse.

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Close Call

November 25, 2014 at 3:09 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Medical) (, , , , , , , , , , , , , , , , , , , , , , , , , )

Everyone in the room – the doctors, nurses, Rave, and even me – all thought the same thing, but no one wanted to say it.

For me, it became tangible when I realized I was having visual hallucinations and disturbances and couldn’t hear out of one ear. My blood pressure numbers were getting lower and lower and no one knew why. My chest hurt like crazy and I was struggling to breathe both out of pain as well as panic. The doc even asked me what my advanced directives were – like did I want a breathing tube – which they had never done before. That’s when I knew I might actually die, like, right now.

I’ve written a lot about how I hate asking people for rides, that it feels like panhandling. Even when people assure me that I can always ask and they like doing it, I still feel terrible about the whole process. After I left the hospital in October, my team had set me up with a slew of follow-up appointments; the idea was I was not well enough to go back home and return to normal life, but I wasn’t urgently sick enough to warrant staying in the hospital anymore. In particular, Johns Hopkins runs a “Heart Failure Bridge Clinic”, the “Bridge” being between hospitalization and home. You’re able to access services that regular doctors or cardiologist offices don’t offer, like IV diuretics.

I was able to attend my first Bridge appointment, and it was pretty standard. Other than a small med adjustment, it didn’t seem like a big deal. So when I wasn’t able to find a ride to the second appointment, I didn’t really stress over it. But then I missed a PCP appointment as well. It was a combination of people legitimately unable to make it and me not being in an emotional state conducive to putting as much effort in as I should have. Both Rave and I have been swamped with a preponderance of to-do items that are all “very important” and time sensitive as well.

I don’t remember when we first noticed that my blood pressures were off. I know I had started feeling dizzy and intoxicated without any cause. But however we got there, I started getting these ridiculously and somewhat unbelievably low readings with an average around 90/60. My home nurse told me to keep a close eye on it; well, that’s not exactly true, as she first recommended I go to the ER. When I told her I was feeling fairly okay and really didn’t want to go back to the hospital (can you blame me after a series of two-to-three week stays in the last four months?), she told me to keep an eye on it until I saw her later that week.

I decided to ask Dr. Google if there was some easy things I could do to bring my blood pressure up. This is when I was introduced into my current medical dilemma: as a congestive heart failure patient, I should severely restrict my fluid intake; but the one reliable way to raise and maintain a good blood pressure is to drink a healthy amount of fluids. So over the next few days I drank more fluids that I was “supposed” to and as it were, the more I drank the better I felt and the better my numbers were.

Well, not all my numbers. People with CHF have to weigh themselves every day because even small gains may be a sign of fluid retention and could require a change in your diuretic dosing. Every day I “cheated” on my restriction, the next morning would see the resultant weight gain; usually only a pound or two, but by the end of the week I was up over 10lbs. My nurse was pretty unhappy but we all agreed that since I had a Bridge Clinic appointment that Wednesday, I would just wait and see what they had to say.

Except that no one I asked could take me to Baltimore that day. By Tuesday midnight, I sent the message to cancel my appointment. I don’t know what my plan was, but until they invent transporters I didn’t have a choice. I couldn’t even decide to drive myself, because Rave’s truck is still too broken to pass inspection and she needs my car to get to work. I didn’t sleep well that night. If I called an ambulance, they would have taken me to Hillbilly Hospital, and that was NOT going to happen. I felt defeated and depressed.

Even though Rave has been in hot water at work over how much time she takes off (mostly to take care of me), on the off chance the PTO gods would smile upon her, she submitted a request before she left work on Tuesday to see if they would let her take me to the appointment. We were pretty convinced the answer would be no, but I didn’t have a lot of other options. We were both surprised that when she got to work Wednesday morning, she saw that her request had been approved. She hopped right back into her car and came back to Hagerstown to pick me up.

We made a mad dash to Baltimore as we were cutting it pretty close, and the Clinic is one of those draconian offices that refuses to see you if you’re more than 10-15 minutes late. We even called ahead to see if that would help, but no dice. On top of that, I had only been to the location once before, and it’s hiding in one of the regular towers (instead of in the Outpatient Center) and I didn’t know which parking garage we should use. To make matters worse, there was practically no available parking in the one we chose, so we spent another ten minutes driving around in circles. We breezed into the office exactly 15 minutes late.

The nurse practitioner took my vitals and saw both the weight gain and low pressure – 80/40. She left the office to call her supervisor. Rave and I figured it was to figure out how much IV meds to give me…until more than 20 minutes go by and she still hasn’t returned. Finally, I gave voice to what we were both starting to fear – that they were going to admit me on the spot. Which is sort of what happened. There weren’t any free beds in the unit I would stay in, and after taking my blood pressure a number of times and getting consistently low numbers she felt the best course of action was to send me to the ER so I could be monitored while waiting for a bed. I am very glad to this day that this is what happened, as if I had not been in the ER when things went south I don’t know what would have happened.

Now, it’s good to know that even though my blood pressure numbers were ridiculously low (normal/average blood pressure should be somewhere around 120/80), I was upright, alert, oriented. I felt a little dizzy, a little fuzzy, and I was struggling more than usual with my aphasia, but overall I felt okay. I was more upset at the prospect of yet another long stay at the hospital forcing me to miss something I was really looking forward to (Thanksgiving with some of my most beloved tribe of the heart) and more medical complications and/or restrictions. But then things starting getting worse.

The first thing that clued me in as to how serious things were getting was when they moved me into the ERs version of an ICU bed. I was wired and constantly monitored. They took my blood pressure in just about every way conceivable – while I was in different positions, on different parts of my arms, and with different sphygmomanometers. My numbers were getting even lower – 80/30. 75/45. 60/40.

All of a sudden one of my ears went silent. It both felt and sounded like someone had slapped a thick earmuff on one side of my head. And of course, doctors and nurses and other hospital personnel are asking me a thousand and one questions and now I couldn’t hear them clearly. I was also getting more confused and finding it harder to understand everything that was happening. At one point, someone offered papers for Rave to sign because I was acting so erratically. (Yes, it’s legal, as she is my designated medical proxy.) I do remember someone asking me to state what was in my advanced directives, mostly about whether or not I had a DNR.

That was the first time I really and truly thought to myself, “This could kill me. They’re doing this because it’s possible this could actually happen.”

That was also when I noticed the visual distortion. I saw fireworks everywhere. Lots of red and off-white lights danced everywhere I looked. After images were causing trails if I moved too quickly (or if the thing I looked at moved quickly too).The light was getting brighter, to the point where I couldn’t really see anything else around me. My sense of chronological/linear time goes fuzzy at this point, so I have no idea in what sequence things actually progressed.

I do remember starting telling people, “I’m really scared. I am really, really scared.” Somehow, my reasoning said that if I refused to lay down I wouldn’t pass out or die. I started breathing more deliberately, again thinking that if I just kept willing each breath I wouldn’t stop breathing. The lowest recorded blood pressure was 40/30, although doctors are skeptical that it actually got that low since, in fact, I didn’t pass out.

That was just about a week ago. I eventually made my way into the critical care unit (which they call “stepdown”, as it is a transition between ICU and a medical floor) where we found out what the hell was going on. It seems there were three forces at play, and all of them were playing to win – which in this case means “messing with Del”.

  • CHF/Edema – In order to avoid retaining fluid which makes my poor heart and lungs work harder, I have to stay under a certain amount of fluid intake a day. I also take “water pills”, aka pills that make your body absorb less fluid and just pee it out instead. However, if I flush out too much fluid it puts a strain on my kidneys, which are already starting to show signs of damage from all this stress. It also leads to…
  • Dehydration – I am only supposed to ingest between 1.5 and 2 liters of fluid a day, and that’s not just what I drink. It includes any substance that becomes a liquid by the time it gets to your stomach, like jello, ice cream, pudding, salad dressing, sauce, etc. But as we all know, bodies need a certain amount of fluid to regulate themselves. I’ve always had low blood pressure, and 9 times out of 10 that’s considered a good thing. But when I was feeling dizzy and ill and I was pretty sure it was due to how low it had gotten, Dr. Google said the best bet to raise it was to drink more fluid, so I did. And even though I had increased my intake to almost 4 liters a day, I was still dehydrated because…
  • Infection – My pannus (the hanging part of my belly, the part that the 2012 surgery was about) is super swollen, which I assumed was part of the water retention caused by the CHF. Turns out that was only half of the story. My pannus is, once again, riddled with infected tissue. There isn’t a collection, like an abscess, that can be drained or removed. It is diffuse through the tissues. So my body was using every bit of fluid to make white blood cells and other infection-fighting stuff, which leads us back to dehydration. The lack of available fluids meant that the infection could proliferate faster and more efficiently. It didn’t help that I had to skip taking some of my meds for a month due to some health insurance stuff, and some of them were my maintenence antibiotics. (Bad Del.)

Yesterday I was transferred out of the critical care unit back to a medical floor I have been to before, which is nice because I know and like most of the nurses here. It also means less wires and other restrictions. The infection is pretty bad and causing a great deal of pain – the doctors keep telling me it’s the kind of healing that gets worse before it gets better. I’m on the good drugs for now – vancomycin (antibiotic version of a nuclear bomb) and dilaudid (painkiller version of a nuclear bomb). I’m in a lot of pain, but in a weird way it’s a familiar kind of pain, which makes it a little easier to deal with.

Most people with CHF really struggle with knowing how much fluid they can safely have without causing problems. Unfortunately, for me it looks like the line between too little and too much is very fine, and I’ve been warned that not only will it take some time and experimentation to figure out exactly where that line is and that there will be a lot of fuckups along the way. Fuckups mean more hospital stays.

My primary care doctor has even mentioned that I could go live in a skilled nursing facility – basically, a special floor in a nursing home that’s reserved for people of all ages who are too medically complicated to live at home but not sick enough to stay in the hospital. The idea is abhorrent to me, but if my lack of transportation is putting my life at risk I can’t fully dismiss the idea. Rave and I have started preliminary browsing to see if moving to Baltimore is even possible. However much we hate living in Hagerstown, the place we have is a godsend of accessibility; Baltimore is full of three-story row houses which will very likely not work for us. But I can’t even think about moving with a full heart until I deal with the divorce settlement, because Mike is claiming I have a part-time job with which I can support myself and therefore he should not have to pay spousal support or cover my prescriptions like he’s been doing since we split. I can’t afford a lawyer and few lawyers do family law pro-bono unless there are custody issues. It’s a big morass I cannot deal with without getting chest pain – and I’m not saying that to be melodramatic, I’m saying it because it really does cause me that much stress.

That’s the story of my close call. The reality and tangibility of the end of my journey is coalescing, and it’s a lot more terrifying than I was prepared for. One of my doctors admitted to me that if he were in my shoes, he’d be freaking out a lot more than I am. He even offered to send me a social worker to talk to, which is probably not a bad idea.

If you wanted to send flowers or the like, you can email Rave at delandrave at gmail dot com and she’ll give you the information. It would be greatly appreciated. I’m feeling kind of lonely and sad these days.

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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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