Things my appearance at XYZ event is dependent upon: (other sick folk, feel free to continue the list in the comments).
1) My water weight compared to yesterday. If it's up significantly, I feel like a beached whale and will probably explode if someone bumps me in public. If it's down significantly, I will feel like a cosmic syringe was used to suck the very life from my bones.
2) The proximity of the bathrooms to XYZ event. Cafes and restaurants are usually a thumbs up. Parks with port-o-lets 1.5 miles down the hill from the parking lot, a thumbs down.
3) My general state of vomitiness (it should be a word). I enjoy listening to someone dry heave through lunch as much as the next guy, but it's embarrassing when you're the person dry heaving.
4) The Headache. There is always a Headache, but most of the time it isn't severe enough to warrant cancelling things. When it makes it unsafe for me to drive or supervise my kids outside of the home, thumbs down.
5) The cold. My body with its failing heart functions normally between 60 and 75 degrees. It's a small, sucky window. If I'm exposed for too long, my hands, feet, and face become numb - even at 55 degrees if the wind is cold. Next come tremors, then full on body spasms as my nervous system rebels against the deprivation of blood to the extremities. This isn't just "not liking cold weather," it is an involuntary reaction to loss of proper blood circulation.
6) The heat. Especially with humidity, I feel like someone is sitting on my chest every time I move - walking, sitting, standing, getting in and out of a vehicle, etc. My lungs are trying so hard to extract oxygen from damp air surrounding me that any other expenditure of energy and oxygen winds me. I hide this by breathing quietly through my mouth and restricting my movements, but eventually, I will pass out from lack of oxygen to the brain. It may feel "a little muggy" to everyone else, but I am more sensitive to humidity than any other single environmental factor - it is worse than a cigarette smoke-filled room. Those kids in the Abuterol commercials with asthma? That's me on the inside, and soon on the outside if I can't get the moisture out of my lungs.
7) Panic attacks. Another side-effect of medications. They do not happen often, but have happened in large crowds or in gatherings where too many bodies are stuffed into one house or room. I have to hide in the bathroom and tell myself to breath. If I know I'm likely to have one at XYZ event that day, I won't go. Even if it means cancelling at the last minute because I don't want to risk leaving my kids by themselves for half an hour while I try to stop the craziness in my head.
8) Walking distance. Handicapped parking is typically a joke. In the heat and cold, 50 ft. between my van and the air conditioned building can make a huge difference.
9) The past and the future. What I did yesterday affects how I feel today. What I must do tomorrow may dictate that I do nothing today. I need plenty of time off of my feet, at rest, to recover from or prepare for a busy day. The more consecutive busy days, the more time I need to rest in between. I used to push on through and I've landed myself in the ER twice now because of it. This means I'm going to miss important things, things that I am depressed about missing, and often times, things I promised my kids we would do.
10) The present. Sometimes I slept well, my weight hasn't changed, my stomach and head are only mildly annoying, and I still feel like absolute crap. I will randomly decide I can't do something I committed to, and I do it for my own good because I know the consequences of pushing through anyway. Sometimes I will choose to pay those consequences, but there is no consistency - my condition is ever-changing and I feel randomly good and bad for no explanation, so trying to explain how and why I can do something one day and not the next is pointless. I don't understand it either, and neither does 25 years of HCM research. It just is.
I offer this list because I know it must be confusing to some people that I can do something one week but not the next. Or why I could tolerate the temperature one day but not the next. Or why my diuretic had me living in the bathroom yesterday but not today. All I can do is guess, go by how I feel from one day to the next, plan the best I can, and commit to as little as I can. It is not what I choose, it is what has been foisted upon me, and I will do the best I can to be consistent. But inconsistency has become my life over the last year or two, and it will only get worse as I progress.
Hopefully the list can be wiped away post-transplant but for now, I have to live around it. I'm fortunate enough to have friends and family who understand that, but many sick people don't. They don't need to fight a battle of wills with people's unrealistic expectations on top of fighting their disease.
Monday, July 14, 2014
Saturday, July 5, 2014
The Taffers in My Life
Behold the power of the internet.
To date, my friends at TTLG.com (Through The Looking Glass) have donated a total of $2882.79 to the fundraiser started by our friend Ellen Gecker. That's over half of what has been raised in total. Of course, family members and friends have given generously as well, but I wanted to say a specific thanks to my fellow Taffers. We went from talking about a game (Thief), to talking about our kids and lives, to meeting in real life in some cases, to a 15 year long friendship that has survived life's changes, marriages and divorces, the death of loved ones, and even the death of two of our own.
You guys are awesome. I'm honored to be part of such a creative, compassionate, smart, and funny community. I can't imagine my life the last 15 years without you. Some of you have become such an integral part of my life. I hope we're talking about something other than a heart transplant in 15 years. Taff on, my Taffers!
To date, my friends at TTLG.com (Through The Looking Glass) have donated a total of $2882.79 to the fundraiser started by our friend Ellen Gecker. That's over half of what has been raised in total. Of course, family members and friends have given generously as well, but I wanted to say a specific thanks to my fellow Taffers. We went from talking about a game (Thief), to talking about our kids and lives, to meeting in real life in some cases, to a 15 year long friendship that has survived life's changes, marriages and divorces, the death of loved ones, and even the death of two of our own.
You guys are awesome. I'm honored to be part of such a creative, compassionate, smart, and funny community. I can't imagine my life the last 15 years without you. Some of you have become such an integral part of my life. I hope we're talking about something other than a heart transplant in 15 years. Taff on, my Taffers!
The Things You Don't Tell People
I'm settling with the idea that this blog has become a tell-all for the chronically ill. Thanks to those of you who have messaged me with encouraging words and similar stories. It helps to know we are not alone. I think sometimes the things I share may be too personal, and this post especially so.
In the spirit of continuing to share the gory details, I want to talk about the side-effects of medications. I can't speak for anyone else, but it is without question the single most frustrating and isolating thing about being chronically ill. Unless you've been on the long ride through medication overload, this post will seem like a series of excuses, complaints, whining, and over-exaggeration. People say to me all the time, "Oh, I forget things too - that's just because you're getting older/busier/more relaxed."
Can I just say this is tantamount to telling a chemo patient that sometimes your stomach hurts too? Just because the side-effect is invisible doesn't make it any less a medical struggle than the visible ones. You may think we're mulling over nothing, but we know. In our heads, we know there is a disorganization and loss of ability to concentrate that didn't exist last year, last month, last week. We can tell it's getting worse. And it's not because we're too busy, or don't care. It's because we're drugged.
The fact is, that beta-blockers and two other drugs I (and most heart patients) take cause short term-memory loss, fatigue, and somnolence (a near-sleep state). Add to that the fluid retention and consequent diuretics (both of them) which can leave you alternately bloated and brain-fuzzy, or dehydrated and twitchy several times in the same day, and you've got a real cocktail for memory loss. If a medication makes someone vomit or pass out, no one would dare say to them, "Yeah, sometimes I throw up and get light-headed too." They are having an obvious and abnormal reaction to medication. But drugs that cause forgetfulness and loss of focus are more subtle. People try to commiserate because "I sometimes forget my keys too." It simply waves away the struggle that the medicated person has while they fight desperately to hold on to coherent thoughts, as well as fight the constant dread that they've forgotten something horribly important and will pay the consequences for it later.
I got lost three times this week driving to a friend's house that I've been to at least two dozen times in the last year. I'll spare you other examples, but it's scary to know that a 12 minute trip just took you 35 because you can't remember where to turn. Maybe normal people do that, but I got lost almost everywhere I went this week. My GPS is on the fritz and just the trip to pick Christie up from work at the Med Center (where I've been a hundred times) was so mentally draining I was sick to my stomach afterwards.
The isolation happens like this: (topropl dependents are already nodding their heads)
1. You forget things. All the time. Typically important things. Yet your head is filled with nonsense minutiae about every stupid TV show you've ever seen, or sports stats, or in my case, music history. Yet, I can't remember an important financial conversation with my wife yesterday. I can regale you with the specs of Chris Squire's bass rigs throughout the 30 year history of Yes' career, but I'm hard pressed to remember your response to an urgent question I e-mailed you 20 minutes ago. This is short-term memory loss. And the harder I to try to pound something into my head, the more likely it seems to slip out.
2. The people around you are at first sympathetic, then grudgingly accepting of your forgetfulness. But that soon turns to mild frustration and what I call "hand-holding." Over time, peers begin to treat you as a ward, or a child that needs to be reminded to bring his wallet, his keys, of what time things are taking place, of what you should bring...and you don't notice any of this at first. In fact, you are grateful because you need reminding. Even though you wrote it down, made a list, and looked at your calender just this morning, by the time you finished making breakfast, the whole thing is just gone, removed from your head. It's especially troubling when your own children have to take on this roll - retrieving forgotten pill bottles, running interference so you don't lock yourselves out of the house, constantly reminding you of the day's events and times. The roles become reversed. Friends who can gently help you along without viewing you as less an adult are valued more highly than gold.
3. People's perception of you begins to change. No matter how organized, on-the-ball, and sharp you used to be, you now seem flaky, behind-the-curve, always playing catch-up. This is honestly the absolute worst part. It sends the inadvertent, and untrue message that you simply don't care. That the conversation, or email, or event just wasn't important enough to hold your attention or to be remembered. That message is further driven home when you demonstrate the ability to remember insignificant details about other, less important things. But you can't pick and choose what is remembered and what is forgotten. The beta blockers do that for you. Every great once in awhile I forget the title of the 7th track on Rush's Presto album. But I'm more likely to forget my own birthday, directions, times, and conversations. See? It sounds like an excuse bank for being late and irresponsible.
I used to be the opposite of all that. People who didn't know me previous to my illness will never believe it, so far to the other side of the spectrum have I slid. My mind has betrayed me. Moments of clarity are cherished as I try in vain to figure out how to replicate whatever it is that caused it. But it's random. The next moment my mind is so tired that I can't remember what I was trying to figure out. I use the Luminosity website religiously in hopes it will keep an edge on on cognitive skills and attention span, but statistically, I'm only marginally ahead of people ten years older than me.
Random really does become the lifestyle. Do I show up on time? Randomly. Will I remember that we agreed to meet/discuss/cancel/postpone/bring xyx? Randomly. Will I remember the email or text that I read 4 times in desperation to burn it into my brain? Randomly.
I try to be at peace with this but there is simply no way to be at peace with standing people up, forgetting important information about your family and friends, or at peace with a growing reputation for instability, flighty-ness, and in-attention. I feel stupid and slow and most of all isolated. Because it is the prime invisible factor of my heart disease that is summarily dismissed as being normal or an excuse for personality defects. It is exhausting to find new words to excuse the same behavior. And others tire of hearing it, like I used to tire of the excuses of the addicts and alcoholics that crossed through my life during my ministry years. I want to change, but it's beyond any amount of willpower or resolve. The ability to do better disappears as surely and frequently as the pills down my throat every morning. I am not me anymore - I am buried under this fog of numb half-awareness, trying to get it together. I know what's happening in my mind, but I don't have the energy to continually express it to others.
Several transplant friends have warned me of this. I didn't believe them until about a year ago. I thought my life had become too busy. But my meds had increased, and they have increased again a year later. They told me to prepare for skepticism, exasperation, and much eye-rolling over forgotten appointments, mixed up calendars, lost valuables, and confusion. It is subtle and slow, but pushes you into yourself and you begin to see yourself as others do - a space cadet, unable to manage his own schedule and commitments. Part of the solution is to stop making commitments, a whole separate issue which I'll address in my next post.
There was something else I wanted to say here, but I forget.
In the spirit of continuing to share the gory details, I want to talk about the side-effects of medications. I can't speak for anyone else, but it is without question the single most frustrating and isolating thing about being chronically ill. Unless you've been on the long ride through medication overload, this post will seem like a series of excuses, complaints, whining, and over-exaggeration. People say to me all the time, "Oh, I forget things too - that's just because you're getting older/busier/more relaxed."
Can I just say this is tantamount to telling a chemo patient that sometimes your stomach hurts too? Just because the side-effect is invisible doesn't make it any less a medical struggle than the visible ones. You may think we're mulling over nothing, but we know. In our heads, we know there is a disorganization and loss of ability to concentrate that didn't exist last year, last month, last week. We can tell it's getting worse. And it's not because we're too busy, or don't care. It's because we're drugged.
The fact is, that beta-blockers and two other drugs I (and most heart patients) take cause short term-memory loss, fatigue, and somnolence (a near-sleep state). Add to that the fluid retention and consequent diuretics (both of them) which can leave you alternately bloated and brain-fuzzy, or dehydrated and twitchy several times in the same day, and you've got a real cocktail for memory loss. If a medication makes someone vomit or pass out, no one would dare say to them, "Yeah, sometimes I throw up and get light-headed too." They are having an obvious and abnormal reaction to medication. But drugs that cause forgetfulness and loss of focus are more subtle. People try to commiserate because "I sometimes forget my keys too." It simply waves away the struggle that the medicated person has while they fight desperately to hold on to coherent thoughts, as well as fight the constant dread that they've forgotten something horribly important and will pay the consequences for it later.
I got lost three times this week driving to a friend's house that I've been to at least two dozen times in the last year. I'll spare you other examples, but it's scary to know that a 12 minute trip just took you 35 because you can't remember where to turn. Maybe normal people do that, but I got lost almost everywhere I went this week. My GPS is on the fritz and just the trip to pick Christie up from work at the Med Center (where I've been a hundred times) was so mentally draining I was sick to my stomach afterwards.
The isolation happens like this: (topropl dependents are already nodding their heads)
1. You forget things. All the time. Typically important things. Yet your head is filled with nonsense minutiae about every stupid TV show you've ever seen, or sports stats, or in my case, music history. Yet, I can't remember an important financial conversation with my wife yesterday. I can regale you with the specs of Chris Squire's bass rigs throughout the 30 year history of Yes' career, but I'm hard pressed to remember your response to an urgent question I e-mailed you 20 minutes ago. This is short-term memory loss. And the harder I to try to pound something into my head, the more likely it seems to slip out.
2. The people around you are at first sympathetic, then grudgingly accepting of your forgetfulness. But that soon turns to mild frustration and what I call "hand-holding." Over time, peers begin to treat you as a ward, or a child that needs to be reminded to bring his wallet, his keys, of what time things are taking place, of what you should bring...and you don't notice any of this at first. In fact, you are grateful because you need reminding. Even though you wrote it down, made a list, and looked at your calender just this morning, by the time you finished making breakfast, the whole thing is just gone, removed from your head. It's especially troubling when your own children have to take on this roll - retrieving forgotten pill bottles, running interference so you don't lock yourselves out of the house, constantly reminding you of the day's events and times. The roles become reversed. Friends who can gently help you along without viewing you as less an adult are valued more highly than gold.
3. People's perception of you begins to change. No matter how organized, on-the-ball, and sharp you used to be, you now seem flaky, behind-the-curve, always playing catch-up. This is honestly the absolute worst part. It sends the inadvertent, and untrue message that you simply don't care. That the conversation, or email, or event just wasn't important enough to hold your attention or to be remembered. That message is further driven home when you demonstrate the ability to remember insignificant details about other, less important things. But you can't pick and choose what is remembered and what is forgotten. The beta blockers do that for you. Every great once in awhile I forget the title of the 7th track on Rush's Presto album. But I'm more likely to forget my own birthday, directions, times, and conversations. See? It sounds like an excuse bank for being late and irresponsible.
I used to be the opposite of all that. People who didn't know me previous to my illness will never believe it, so far to the other side of the spectrum have I slid. My mind has betrayed me. Moments of clarity are cherished as I try in vain to figure out how to replicate whatever it is that caused it. But it's random. The next moment my mind is so tired that I can't remember what I was trying to figure out. I use the Luminosity website religiously in hopes it will keep an edge on on cognitive skills and attention span, but statistically, I'm only marginally ahead of people ten years older than me.
Random really does become the lifestyle. Do I show up on time? Randomly. Will I remember that we agreed to meet/discuss/cancel/postpone/bring xyx? Randomly. Will I remember the email or text that I read 4 times in desperation to burn it into my brain? Randomly.
I try to be at peace with this but there is simply no way to be at peace with standing people up, forgetting important information about your family and friends, or at peace with a growing reputation for instability, flighty-ness, and in-attention. I feel stupid and slow and most of all isolated. Because it is the prime invisible factor of my heart disease that is summarily dismissed as being normal or an excuse for personality defects. It is exhausting to find new words to excuse the same behavior. And others tire of hearing it, like I used to tire of the excuses of the addicts and alcoholics that crossed through my life during my ministry years. I want to change, but it's beyond any amount of willpower or resolve. The ability to do better disappears as surely and frequently as the pills down my throat every morning. I am not me anymore - I am buried under this fog of numb half-awareness, trying to get it together. I know what's happening in my mind, but I don't have the energy to continually express it to others.
Several transplant friends have warned me of this. I didn't believe them until about a year ago. I thought my life had become too busy. But my meds had increased, and they have increased again a year later. They told me to prepare for skepticism, exasperation, and much eye-rolling over forgotten appointments, mixed up calendars, lost valuables, and confusion. It is subtle and slow, but pushes you into yourself and you begin to see yourself as others do - a space cadet, unable to manage his own schedule and commitments. Part of the solution is to stop making commitments, a whole separate issue which I'll address in my next post.
There was something else I wanted to say here, but I forget.
Saturday, June 21, 2014
Sunday, June 1, 2014
This Post Is About Two Things. They Both Suck.
Now that I finally have a moment, I should relate the rest of my last hospital adventure. There are several things that went down (complete with an outline!):
1) Physical Medical Stuff
a) As I mentioned in the previous post, the doc couldn't get the cath in on the right side, so we went with the left (well, I say "we" - it was mostly just me saying "HOLY CRAP THAT HURTS LIKE AT LEAST FOUR OF THE SEVEN HELLS," and the doc saying, "okay, we'll try the other side," and me yelling "AND WHY AM I EVEN AWAKE RIGHT NOW?" and the doc saying, "give him more," which we both know means more drugs because we have an understanding that when he is stabbing a wire into my heart I DON'T WANT TO KNOW ABOUT IT UNTIL IT'S OVER).
b) The reason it wouldn't go in on the right is because it's probably occluded with scar tissue. This means that the right side is no longer any good for heart caths. So we're now going to be very careful with the left size -using smaller caths and doing them less often. I may not go back in until August. If the left side gets buggered up, no more caths for me, meaning no admissions, no IA time, and serious problems with getting weekly biopsies post-transplant. The implications of all that are, not to put to fine a point on it, really really grim. No, I haven't lost any sleep over this, why do you ask?
c) My initial bloodwork showed my potassium at 2.5. A normal person's body maintains a potassium level of around 4. So when it's below about 3.5 you get really sick, or melt, or turn into a pumpkin...or something. All I know is that I felt like doody on a stick for about 3 weeks prior, couldn't sleep, sketchy appetite, headaches and nausea, feeling disoriented and foggy...so about normal, only turned up a few notches. Once they got my potassium up, I felt so much better. Problem is it's impossible to test your potassium at home. So I'm getting blood drawn twice a week now, and trying to take a lot of supplements, eat apricots, pistachios, and potatoes, and drink chocolate soy milk, all high in potassium.
d) I seem to be keeping up now, but my body is dumping a LOT of potassium every day. Why, suddenly? Because the diuretic I'm normally on is "back-ordered" (meaning the RX company knows lots of people need it, so they've manufactured a "shortage" in order to bring it back to market at a higher price next month. In pretty much any other country in the world except Nigeria, companies can be fined out the wazoo for doing that, but here, they will be eligible for a government subsidy to help them recoup their lost revenue during said "shortage." God Bless the U.S.A.). So because the new diuretic has an adverse effect on my postassium retention, I'm taking 10 (ten. onetwothreefourfivesixseveneightnineten) Potassium capsules per day. While trying to keep my fluid consumption down. Yeah, I missed that physics class too.
2) Financial Med Stuff
a) In light of owing Tufts Medical Center in Boston approximately $4,734,283,102.45 (a totally not-made-up number), I've been really dilligent to make sure everything is filed with insurance and paid properly so our co-pays are as small as possible. Note that I - me - took the initiative to do this. I called them, many times. Something got filed wrong with Medicare, who now doesn't want to pay. I've been on the phone with Tufts and Medicare multiple times trying to help them do their jobs (a fool's errand).
b) When we moved, I called Tufts with our new address and phone number, asking AGAIN if the issue had been resolved. Talked to an accounts manager, blah blah blah. It's in review, we'll contact you soon.
c) A few weeks later, call back. Same story. "I don't want it to end up in collections," I say. "I want to pay my part, but I want Medicare to do their part first so I don't overpay," I say. "We'll be sure to contact you," they say.
d) Friday, receive a call from, guess who? If you guessed Collection Agency, you win the gold star! I laughed. I cried. I asked if Medicare had paid on it yet. I was informed that they had not.
e) I advised said Collection Agent that Tufts Medical Center could choose one of several options:
i) Kiss my left butt cheek.
ii) Sue me. I have a 25 Year Anniversary Boba Fett action figure that should fetch somewhere in the neighborhood of $300, though that's only .000000000072% of what they think I owe them (there's some kind of math error there. I'll work it out later).
iii) Send a heavy to pound it out of my very flesh because:
And some of my dear readers don't know me in real life, but I promise you, I'm a really nice guy. I take my bills seriously. I try to do what I say I will so far as I'm physically able. The fact that I owe people money for caring for my medical needs actually bothers me. But when I get slapped in the face for trying to do the right thing, I'm really tempted to do the wrong thing, which is to become uncommunicative, evasive, and apathetic.
So tomorrow's phone conversation with them should be fun. If I decide to make it at all.
There didn't seem a good place to put this in the
blog post so I'll just leave it here for everyone to ponder: Eric J. Beyer, Executive CEO of Tufts Medical Center in Boston had total compensation of $744,722 in 2013. My outstanding bill is $1000, minus what Medicare owes them (probably around $750). Best healthcare system in the world? The numbers speak for themselves.
1) Physical Medical Stuff
a) As I mentioned in the previous post, the doc couldn't get the cath in on the right side, so we went with the left (well, I say "we" - it was mostly just me saying "HOLY CRAP THAT HURTS LIKE AT LEAST FOUR OF THE SEVEN HELLS," and the doc saying, "okay, we'll try the other side," and me yelling "AND WHY AM I EVEN AWAKE RIGHT NOW?" and the doc saying, "give him more," which we both know means more drugs because we have an understanding that when he is stabbing a wire into my heart I DON'T WANT TO KNOW ABOUT IT UNTIL IT'S OVER).
b) The reason it wouldn't go in on the right is because it's probably occluded with scar tissue. This means that the right side is no longer any good for heart caths. So we're now going to be very careful with the left size -using smaller caths and doing them less often. I may not go back in until August. If the left side gets buggered up, no more caths for me, meaning no admissions, no IA time, and serious problems with getting weekly biopsies post-transplant. The implications of all that are, not to put to fine a point on it, really really grim. No, I haven't lost any sleep over this, why do you ask?
c) My initial bloodwork showed my potassium at 2.5. A normal person's body maintains a potassium level of around 4. So when it's below about 3.5 you get really sick, or melt, or turn into a pumpkin...or something. All I know is that I felt like doody on a stick for about 3 weeks prior, couldn't sleep, sketchy appetite, headaches and nausea, feeling disoriented and foggy...so about normal, only turned up a few notches. Once they got my potassium up, I felt so much better. Problem is it's impossible to test your potassium at home. So I'm getting blood drawn twice a week now, and trying to take a lot of supplements, eat apricots, pistachios, and potatoes, and drink chocolate soy milk, all high in potassium.
d) I seem to be keeping up now, but my body is dumping a LOT of potassium every day. Why, suddenly? Because the diuretic I'm normally on is "back-ordered" (meaning the RX company knows lots of people need it, so they've manufactured a "shortage" in order to bring it back to market at a higher price next month. In pretty much any other country in the world except Nigeria, companies can be fined out the wazoo for doing that, but here, they will be eligible for a government subsidy to help them recoup their lost revenue during said "shortage." God Bless the U.S.A.). So because the new diuretic has an adverse effect on my postassium retention, I'm taking 10 (ten. onetwothreefourfivesixseveneightnineten) Potassium capsules per day. While trying to keep my fluid consumption down. Yeah, I missed that physics class too.
2) Financial Med Stuff
a) In light of owing Tufts Medical Center in Boston approximately $4,734,283,102.45 (a totally not-made-up number), I've been really dilligent to make sure everything is filed with insurance and paid properly so our co-pays are as small as possible. Note that I - me - took the initiative to do this. I called them, many times. Something got filed wrong with Medicare, who now doesn't want to pay. I've been on the phone with Tufts and Medicare multiple times trying to help them do their jobs (a fool's errand).
b) When we moved, I called Tufts with our new address and phone number, asking AGAIN if the issue had been resolved. Talked to an accounts manager, blah blah blah. It's in review, we'll contact you soon.
c) A few weeks later, call back. Same story. "I don't want it to end up in collections," I say. "I want to pay my part, but I want Medicare to do their part first so I don't overpay," I say. "We'll be sure to contact you," they say.
d) Friday, receive a call from, guess who? If you guessed Collection Agency, you win the gold star! I laughed. I cried. I asked if Medicare had paid on it yet. I was informed that they had not.
e) I advised said Collection Agent that Tufts Medical Center could choose one of several options:
i) Kiss my left butt cheek.
ii) Sue me. I have a 25 Year Anniversary Boba Fett action figure that should fetch somewhere in the neighborhood of $300, though that's only .000000000072% of what they think I owe them (there's some kind of math error there. I'll work it out later).
iii) Send a heavy to pound it out of my very flesh because:
- They're not getting a penny from me. Not even my co-pay. They can eat it.
- I tried to do the right thing and initiate contact repeatedly to make sure the bill got paid, despite the fact that it was mostly their fault Medicare balked. No more. I've now become "that" person who doesn't give two rips and half a jelly doughnut if they ever see a red cent.
- I've said it before and it makes people mad (which is strong incentive for me to say it again): This is how sick people get treated in this country, every. single. day. My European friends can't fathom what it's like to have a chronic illness and the added stress of trying to figure out how to pay for it. They know they pay more taxes, but they tell me they get good medical care in a timely manner and they never get a bill. Because good governments take care of their sick. Because every developed country and most un-developed countries (except Nigeria) have some form of socialized healthcare and don't punish their citizens for being sick. Why do we do that here?
- Oh yeah, Socialism. A term that most Americans can't define given the crappy state of our education system. They vaguely think it has something to do with Hitler. Or some Russian guy. (wrong on both counts - if you're an American, surprise! You're already a Socialist. You just don't know the definition of the word - except in healthcare. We're all Socialists except for healthcare. With healthcare we're what's known as "Sucks To Be You-ists."
So tomorrow's phone conversation with them should be fun. If I decide to make it at all.
There didn't seem a good place to put this in the
blog post so I'll just leave it here for everyone to ponder: Eric J. Beyer, Executive CEO of Tufts Medical Center in Boston had total compensation of $744,722 in 2013. My outstanding bill is $1000, minus what Medicare owes them (probably around $750). Best healthcare system in the world? The numbers speak for themselves.
Friday, May 16, 2014
Variety is the Spice of Life
It's never boring, that much I can tell you. Every hospital stay presents me with some new challenge, new information to process, more opportunities to say, "um....huh?" Like Wednesday night when I was given a shot in my stomach without much ceremony or fanfare.
That's probably a normal thing for some people, certainly for the nurses, but as I have never been stabbed in the stomach before, I felt that this was absolutely not a normal situation.
As much as we'd all like to believe that medicine is a highly refined, scientific process that can be depended on to yield the same results every time, it's just not. Doctors trained in the same place, working in the same group can hold wildly differing opinions about how to deal with the same problem.
I went toe-to-toe with atrial fibrillation for several months in 2011 and ended up on Amiodarone, an anti-arrhythmic that has kept me in a normal rhythm since. But that won't last forever - HCM eventually finds a way around it, which is how many HCMers end up with an implanted pacemaker or defibrillator. Because the medication can cause blood clots (previously referred to as Brain Clots of Death (tm)), I must also take a particular brand-name blood thinner called Pradaxa, created from the teeth of leprechauns and the blood of unicorns, laced with the finest threads of dwarfish gold and silver guarded by an angry dragon (this is seriously a more plausible explanation for the cost of the medication that the one given to me by the research department crony at Boehringer Ingelheim pharmaceutical, three time winners of my "Best Performance in Preying on the Sick and Old" award). But I can't take it while I'm here because it takes 48+ hours to flush from my system, and that's too long to wait when there's a viable organ that could go to the next person on the list who's ready now.
The problem with blood-thinners is that when I'm in the hospital, and therefore more likely to receive a heart than at home, blood thinners are not my friend. We have to walk a fine line between avoiding the Brain Clot of Death (tm) and getting passed over for a new organ because of too much blood thinner in my system.
Not surprisingly, all five of the docs in my cardiology group have a different philosophy about this. One gives no blood thinner, assuming (correctly, probably) that I am active enough when I'm here that I'm unlikely to form a Brain Clot of Death (tm). Why, between typing this I've been exercising my reflexes and agility through a rigorous workout regimen involving jumping jacks, short runs around the unit, and I don't mind telling you, a pretty sophisticated gymnastics routine I've been working up. Okay, actually I almost knocked over my urinal and caught it before it fell over and spilled. And I also played a Batman game last night for a few hours. Blood clots are terrified of me.
Two of the other docs believe in a Heparin drip that keeps my blood nice and silky the whole time I'm here. When asked why, their response also has to do with unicorns and fairy dust and such and under hard scrutiny must confess that it just seemed like a good idea at the time.
The doc who admitted me Wednesday actually tried to strike a balance between the two. Instead of nothing or everything, he went with a daily shot of Levaquin, which holds you over for a period of time in case I stumble into A-fib again.
The great thing about the docs in the Penn State Cardiology group is that they LISTEN. When I explained my rather vociferous aversion to daily shots *in the stomach,* he conferred with the other docs and agreed that I am active enough to go without anything for the week (I'm convinced it was the cat-like-reflexes demonstrated in my urinal catch that swayed him). So no more shots. And I got to the bottom of the blood-thinner mystery that has nagged at me since my second visit back in February. Not a life changing victory, but I'll take it.
That's probably a normal thing for some people, certainly for the nurses, but as I have never been stabbed in the stomach before, I felt that this was absolutely not a normal situation.
As much as we'd all like to believe that medicine is a highly refined, scientific process that can be depended on to yield the same results every time, it's just not. Doctors trained in the same place, working in the same group can hold wildly differing opinions about how to deal with the same problem.
I went toe-to-toe with atrial fibrillation for several months in 2011 and ended up on Amiodarone, an anti-arrhythmic that has kept me in a normal rhythm since. But that won't last forever - HCM eventually finds a way around it, which is how many HCMers end up with an implanted pacemaker or defibrillator. Because the medication can cause blood clots (previously referred to as Brain Clots of Death (tm)), I must also take a particular brand-name blood thinner called Pradaxa, created from the teeth of leprechauns and the blood of unicorns, laced with the finest threads of dwarfish gold and silver guarded by an angry dragon (this is seriously a more plausible explanation for the cost of the medication that the one given to me by the research department crony at Boehringer Ingelheim pharmaceutical, three time winners of my "Best Performance in Preying on the Sick and Old" award). But I can't take it while I'm here because it takes 48+ hours to flush from my system, and that's too long to wait when there's a viable organ that could go to the next person on the list who's ready now.
The problem with blood-thinners is that when I'm in the hospital, and therefore more likely to receive a heart than at home, blood thinners are not my friend. We have to walk a fine line between avoiding the Brain Clot of Death (tm) and getting passed over for a new organ because of too much blood thinner in my system.
Not surprisingly, all five of the docs in my cardiology group have a different philosophy about this. One gives no blood thinner, assuming (correctly, probably) that I am active enough when I'm here that I'm unlikely to form a Brain Clot of Death (tm). Why, between typing this I've been exercising my reflexes and agility through a rigorous workout regimen involving jumping jacks, short runs around the unit, and I don't mind telling you, a pretty sophisticated gymnastics routine I've been working up. Okay, actually I almost knocked over my urinal and caught it before it fell over and spilled. And I also played a Batman game last night for a few hours. Blood clots are terrified of me.
Two of the other docs believe in a Heparin drip that keeps my blood nice and silky the whole time I'm here. When asked why, their response also has to do with unicorns and fairy dust and such and under hard scrutiny must confess that it just seemed like a good idea at the time.
The doc who admitted me Wednesday actually tried to strike a balance between the two. Instead of nothing or everything, he went with a daily shot of Levaquin, which holds you over for a period of time in case I stumble into A-fib again.
The great thing about the docs in the Penn State Cardiology group is that they LISTEN. When I explained my rather vociferous aversion to daily shots *in the stomach,* he conferred with the other docs and agreed that I am active enough to go without anything for the week (I'm convinced it was the cat-like-reflexes demonstrated in my urinal catch that swayed him). So no more shots. And I got to the bottom of the blood-thinner mystery that has nagged at me since my second visit back in February. Not a life changing victory, but I'll take it.
Wednesday, May 7, 2014
Heart Problem? What Heart Problem?
HAY GUYS DID EYE MENTION WE HAVE A FUNDRAISER GOING ON?
I'm supposed to be moderately sedated right now with a swans cath sitting in my heart. But I'm at home typing this and listening to my parents teach Rich how to use a gas-powered lawn mower in the front yard. This is better by a mile.
I thought it suspicious yesterday that I'd not heard from my coordinator about my admission time this morning. When I called, I could immediately tell something was catty-wonkus because Fran (my coordinator) was using terms like "circle jerk" and "cluster....youknowwhat," and such. She is extremely professional and extremely frank about the short-comings of our current medical care system. And I trust her implicitly.
Apparently, my insurance company has decided that the frequency of my visits are, well...too frequent. They requested a "peer to peer review" which essentially means two of my doctors have to confer and agree that I absolutely need to be admitted every six weeks. Insurance will also ask to see my numbers - ejection fraction, cardiac output, etc.
The timing of my admissions aren't necessarily based on my health at any given moment (though they will be before this is over), but rather on when someone can keep the boys, when Christie can get off work...ya know, LIFE. Six weeks seems about right for my health too because it's around that time that my fluid retention goes haywire and I benefit from the IV inotropic medications.
If the insurance company looks strictly at my numbers, they will see a 43 year old male who is the picture of health. HELLO, THIS IS HCM - EVERYTHING LOOKS GREAT UNTIL YOU DROP DEAD ON THE BASKETBALL COURT. But wait, I'm sure they learned that in medical school. What's that, you say? Insurance coordinators don't attend medical school and they may not understand the subtleties of non-obstructive diastolic hyper-tropic cardiomyopathy with low graidents as well as an actual, medical school educated cardiologist? I'm shocked. SHOCKED, I say.
The only time my numbers freak out is when I exert myself - like walking, or sitting up, or digesting food. Not that I do those things on a regular basis. That would be crazy! So as long as I stay away from things that humans do, I should be fine until the insurance company can afford for me to be admitted next time. I understand. Blue Cross/Blue Shield is strapped for cash these days - their CEO only "earned" $12.9 million (NOT a made-up number) in 2013. Just kidding. By "earned" I meant, "went to some meetings and had cocktails after." If I'm goofing around and having heart failure all the time, how is the poor guy going to afford to keep his labradoodle in fresh sweaters, or pay for his mistresses' hair removal treatments? SOMEONE PLEASE, THINK OF THE CEO'S!!
So while this assboat is out playing golf with his bad haircut, I'll just take more and more meds this week in a vain attempt to keep the fluid under control. No idea how that is going to play out - hopefully the docs go to bat for me justify the frequency of my admissions.
On top of that, the patient population at Penn State was ridiculous today, so I would have been more than 24 hours getting a room (likely). Since my parents are visiting this week and Christie's schedule is more flexible this week, we just let them bump it to next week.
Know this: if the hospital is overpopulated, the nurse to patient ratio is off-kilter, which runs them ragged and reduces the quality of care for the patient. Yet, despite the rip-roaring business the hospital is seeing this week (and many other weeks, because this is a common problem) - it will not result in pay raises or better perks for the nursing staff. And then they will moan and cry about the nursing shortage. While the CEO likely makes $12.9 million (TOTALLY a made up number) this year.
So I'll enjoy my freedom for one more week and get back to you all with my 5-point plan to end Blue Cross/Blue Shield's reign of opportunistic terror. It begins with a strongly worded letter writing campaign filled with pejoratives and words like "succubus" and "rat-vulture." Sharpen your pencils and meet me back here tomorrow.
I'm supposed to be moderately sedated right now with a swans cath sitting in my heart. But I'm at home typing this and listening to my parents teach Rich how to use a gas-powered lawn mower in the front yard. This is better by a mile.
I thought it suspicious yesterday that I'd not heard from my coordinator about my admission time this morning. When I called, I could immediately tell something was catty-wonkus because Fran (my coordinator) was using terms like "circle jerk" and "cluster....youknowwhat," and such. She is extremely professional and extremely frank about the short-comings of our current medical care system. And I trust her implicitly.
Apparently, my insurance company has decided that the frequency of my visits are, well...too frequent. They requested a "peer to peer review" which essentially means two of my doctors have to confer and agree that I absolutely need to be admitted every six weeks. Insurance will also ask to see my numbers - ejection fraction, cardiac output, etc.
The timing of my admissions aren't necessarily based on my health at any given moment (though they will be before this is over), but rather on when someone can keep the boys, when Christie can get off work...ya know, LIFE. Six weeks seems about right for my health too because it's around that time that my fluid retention goes haywire and I benefit from the IV inotropic medications.
If the insurance company looks strictly at my numbers, they will see a 43 year old male who is the picture of health. HELLO, THIS IS HCM - EVERYTHING LOOKS GREAT UNTIL YOU DROP DEAD ON THE BASKETBALL COURT. But wait, I'm sure they learned that in medical school. What's that, you say? Insurance coordinators don't attend medical school and they may not understand the subtleties of non-obstructive diastolic hyper-tropic cardiomyopathy with low graidents as well as an actual, medical school educated cardiologist? I'm shocked. SHOCKED, I say.
The only time my numbers freak out is when I exert myself - like walking, or sitting up, or digesting food. Not that I do those things on a regular basis. That would be crazy! So as long as I stay away from things that humans do, I should be fine until the insurance company can afford for me to be admitted next time. I understand. Blue Cross/Blue Shield is strapped for cash these days - their CEO only "earned" $12.9 million (NOT a made-up number) in 2013. Just kidding. By "earned" I meant, "went to some meetings and had cocktails after." If I'm goofing around and having heart failure all the time, how is the poor guy going to afford to keep his labradoodle in fresh sweaters, or pay for his mistresses' hair removal treatments? SOMEONE PLEASE, THINK OF THE CEO'S!!
So while this assboat is out playing golf with his bad haircut, I'll just take more and more meds this week in a vain attempt to keep the fluid under control. No idea how that is going to play out - hopefully the docs go to bat for me justify the frequency of my admissions.
On top of that, the patient population at Penn State was ridiculous today, so I would have been more than 24 hours getting a room (likely). Since my parents are visiting this week and Christie's schedule is more flexible this week, we just let them bump it to next week.
Know this: if the hospital is overpopulated, the nurse to patient ratio is off-kilter, which runs them ragged and reduces the quality of care for the patient. Yet, despite the rip-roaring business the hospital is seeing this week (and many other weeks, because this is a common problem) - it will not result in pay raises or better perks for the nursing staff. And then they will moan and cry about the nursing shortage. While the CEO likely makes $12.9 million (TOTALLY a made up number) this year.
So I'll enjoy my freedom for one more week and get back to you all with my 5-point plan to end Blue Cross/Blue Shield's reign of opportunistic terror. It begins with a strongly worded letter writing campaign filled with pejoratives and words like "succubus" and "rat-vulture." Sharpen your pencils and meet me back here tomorrow.
Money Can't Buy Me Love
Hello relatively healthy people! Sorry I've been away for a while. The day after my last hospital stay I started feeling sick and have been that way ever since. The docs say it was a cold and allergies, I'm convinced it was a touch of Ebola.
Nevertheless.
A friend of ours (Ellen Gecker, whose husband Marc was actually the realtor who was instrumental in our move to Hershey last year) has been so gracious as to set up a FUNDRAISING WEBSITE. I won't spend much time explaining this since the details of *why* we need a fundraiser are detailed HERE. You can click the link above or check out the widget directly to your right.
So check it out and most of all, share it anywhere you can - Facebook, Twitter, Google +, Pony Express, etc. The more people see it, the better chance of it ending up in front of Bill Gates.
And HUGE thank-you's to everyone who has already contributed. I promise we'll use the money to pay for medical related expenses, no matter how much I'm dying to play the new Dark Souls game and buy a Fender Stratocaster. For those of you who can't give - I really, really appreciate your readership and time (comments are appreciated too!). Send us good vibes, prayers, or whatever it is you prefer to send. (TTLGers - please no inappropriate photographs or dead animal "art." You know who you are).
Thanks to Ellen and Katherine who set up the site, and also to Stacy who got the ball rolling. You guys (gals? that always sounds patronizing to me...) are awesome.
Nevertheless.
A friend of ours (Ellen Gecker, whose husband Marc was actually the realtor who was instrumental in our move to Hershey last year) has been so gracious as to set up a FUNDRAISING WEBSITE. I won't spend much time explaining this since the details of *why* we need a fundraiser are detailed HERE. You can click the link above or check out the widget directly to your right.
So check it out and most of all, share it anywhere you can - Facebook, Twitter, Google +, Pony Express, etc. The more people see it, the better chance of it ending up in front of Bill Gates.
And HUGE thank-you's to everyone who has already contributed. I promise we'll use the money to pay for medical related expenses, no matter how much I'm dying to play the new Dark Souls game and buy a Fender Stratocaster. For those of you who can't give - I really, really appreciate your readership and time (comments are appreciated too!). Send us good vibes, prayers, or whatever it is you prefer to send. (TTLGers - please no inappropriate photographs or dead animal "art." You know who you are).
Thanks to Ellen and Katherine who set up the site, and also to Stacy who got the ball rolling. You guys (gals? that always sounds patronizing to me...) are awesome.
Sunday, March 23, 2014
What If I Just Completely Lose All My Marbles?
This may be a tough post to read. It was difficult for me to write. Nevertheless I am compelled to address it for those who are looking in from the outside, and more importantly, for those approaching similar difficult decisions in the near future.
I'm involved in a research study at Penn State regarding end-of-life decisions and attitudes toward advance directives, life-saving measures, and how the hospital communicates with patients about such issues. Christie and I met with a research assistant Friday to answer some of these questions ourselves, take some surveys, and discuss my own options about all of this.
We breezed through most of the questions, much to the amusement of Rene (the assistant administering the surveys). Most people look at my age and assume that all of these issues are relatively new to us. But we have been discussing them on and off for nearly fifteen years now. I was told at age 28 that I had 2-5 years to live. This kind of stuff has become light banter over breakfast for us. So we plowed through the questions pretty fast, moving a percentage slider between 0 and 100%.
Q: "If you required a ventilator/feeding tube to breathe for you up to one month/six months if you were assured your condition would return to normal, how bearable would this be?"
A: Very. We're taking the long view, right? Who wouldn't endure half-a-year like that to get their health back? Kurt Cobain, maybe.
Q: "If you were confined to a wheelchair for the rest of your life due to life-saving measures, how bearable would you find this?"
A: Not fun, but bearable. Any day above ground is a good day, eh?
Q: "If a life-saving measure such as CPR caused severe dementia, loss of cognitive function, or permanent brain damage, preventing you from caring for yourself or having meaningful relationships with friends or loved ones, how bearable would this be?
A: Whoa, whoa, whoa. Back up there a second, Betsy. Dementia? Brain Damage? Does this mean I run the risk of becoming a Republican or liking The Doors? Bring me a handgun, stat.
Did you know that 85-90% of people who receive CPR sustain permanent brain damage? NEITHER DID I! I feel betrayed. CPR works so well on Baywatch, ER, and even on the X-Files. The shock of learning this is rivaled only by the emotional pain of realizing Mulder and Scully lied to me. Trust No One indeed.
Since I was diagnosed with HCM in 1998, I have probably forgotten more than most cardiologists have read on the subject. Ditto transplants. I would confidently go toe-to-toe with any cardiologist on the practical implications of central and PIC lines, diastolic failure vs. systolic obstruction, gradients and their effect on cardiac output and ejection fractions, the relevance of ejection fractions for congestive failure vs. diastolic failure, side-effects and long term benefits of pretty much any cardiac drug in existence (as well as who makes them and how much their CEO's earned last year. Bastards), or the use of VAD's and internal devices in various stages of failure. If they'd let me stay awake for the transplant procedure, I bet I could run the thing. I've watched so many transplant procedures online that I finally ran out of internet. I know all this stuff because ER cardiologists kept trying to kill me and I figured I'd better know what's going on. It's the reason we are in Pennsylvania instead of Little Rock or St. Louis - if I know more than my cardiologist, time to move on.
But not until Friday, sitting in front of this survey did I consider the fact that I could come away from this whole thing with brain damage. I know transplants carry a heavy risk of stroke while on the table, but those statistics have become way better in recent years because the drugs are better and the procedure is shorter than it used to be. Christie deals with post-transplant patients all the time that have had such problems. But I'd never really considered the question: If you had to live with debilitating brain damage, would it be worth it?
Look at your kids, then at your hands, and around the room you're sitting in. See those books? You can't read them. See your kids playing that video game? You can't join in. Hear the conversation around the dinner table? You have nothing meaningful to add. The most intimate interaction you have with your spouse is when they help you to the bathroom. Maybe you can't listen to music anymore, certainly can't play an instrument. I'll let you chew on that for a moment.
Our light-hearted joking and buzzing through end-of-life questions came to a screeching halt. What if I couldn't cook Chicken Marsala ever again? Or stumble through a song on the guitar? What if Paul singing, "When I find myself in times of trouble..." registered no meaning? Or I couldn't finish reading the Fablehaven series to the boys? Or enjoy an episode of Gilmore Girls with my wife? These are small things, but they are what life is made of. In the words of Rob Thomas: "Our lives are made in these small hours, these little moments, these twists and turns of fate. Time falls away, but these small hours will remain."
Physical limitations are daunting, but sometimes people who can't work around are often just lazy. The mind is where we find ourselves - it's who we are. It's the well from which our creativity, sense of humor, and unique perspective spring. I can't play drums anymore, but I can write songs. I can sing. I can listen. I can't work anymore, but I can learn to paint, cook, clean, code. Most of all I can imagine.
In some ways, I wouldn't mind being trapped inside my own mind. Maybe I could finally figure out what the hell is going on in there, or at least why it's stuck in the 80's. But ceasing to interact with loved ones? Unable to express myself verbally or otherwise? I don't know if I could do that.
I've come to a season in life where I finally care about things like calculus, and reading Marcus Aurelius, and listening really hard to Theolonius Monk. I need to perfect my bouillabaisse sauce and study more Fauvist paintings. I've yet to watch Indiana Jones with the boys because they're too young. I haven't taught either of them to shave, or date, use a weed-eater, or avoid extended warranties. This is clearly not the time to lose my mind. I have a death-grip on what's left of it as is.
So I struggled through those questions, and I have to be honest; the slider more often than not ended up pretty far toward the "unbearable" side of the scale. I guess I've known all along, somewhere in the dark corners of my brain that things could go horribly wrong in this aspect. I've been so focused on the physical that I never considered how mental problems could affect my quality of life (not that they don't already, but you know what I mean).
We finished the session, went to Houlihan's for lunch and laughed and talked about life, the kids, work, A.A. Milne, friends, and mostly the calamari and ginger shrimp. Because that's what you do. We've learned that, as much as possible, you have to answer these questions, consider worse case scenarios, then go play a game with your kids, or drink good wine, or eat good food - whatever it is that makes life enjoyable for you. I suspect I'll never have to deal with any of this when it all comes down, but in the meantime, there is a whole world within and without and I know very little about either. There's no time to brood over it.
Some of you reading this have the same cloud hanging over you. We have a choice to let the anxieties and the what-ifs permeate our lives, or to keep living. The latter is the hardest. But we face this choice constantly and doing the former is to let the disease win. In which case, why are we fighting so hard to stay alive in the first place?
I'm involved in a research study at Penn State regarding end-of-life decisions and attitudes toward advance directives, life-saving measures, and how the hospital communicates with patients about such issues. Christie and I met with a research assistant Friday to answer some of these questions ourselves, take some surveys, and discuss my own options about all of this.
We breezed through most of the questions, much to the amusement of Rene (the assistant administering the surveys). Most people look at my age and assume that all of these issues are relatively new to us. But we have been discussing them on and off for nearly fifteen years now. I was told at age 28 that I had 2-5 years to live. This kind of stuff has become light banter over breakfast for us. So we plowed through the questions pretty fast, moving a percentage slider between 0 and 100%.
Q: "If you required a ventilator/feeding tube to breathe for you up to one month/six months if you were assured your condition would return to normal, how bearable would this be?"
A: Very. We're taking the long view, right? Who wouldn't endure half-a-year like that to get their health back? Kurt Cobain, maybe.
Q: "If you were confined to a wheelchair for the rest of your life due to life-saving measures, how bearable would you find this?"
A: Not fun, but bearable. Any day above ground is a good day, eh?
Q: "If a life-saving measure such as CPR caused severe dementia, loss of cognitive function, or permanent brain damage, preventing you from caring for yourself or having meaningful relationships with friends or loved ones, how bearable would this be?
A: Whoa, whoa, whoa. Back up there a second, Betsy. Dementia? Brain Damage? Does this mean I run the risk of becoming a Republican or liking The Doors? Bring me a handgun, stat.
Did you know that 85-90% of people who receive CPR sustain permanent brain damage? NEITHER DID I! I feel betrayed. CPR works so well on Baywatch, ER, and even on the X-Files. The shock of learning this is rivaled only by the emotional pain of realizing Mulder and Scully lied to me. Trust No One indeed.
Since I was diagnosed with HCM in 1998, I have probably forgotten more than most cardiologists have read on the subject. Ditto transplants. I would confidently go toe-to-toe with any cardiologist on the practical implications of central and PIC lines, diastolic failure vs. systolic obstruction, gradients and their effect on cardiac output and ejection fractions, the relevance of ejection fractions for congestive failure vs. diastolic failure, side-effects and long term benefits of pretty much any cardiac drug in existence (as well as who makes them and how much their CEO's earned last year. Bastards), or the use of VAD's and internal devices in various stages of failure. If they'd let me stay awake for the transplant procedure, I bet I could run the thing. I've watched so many transplant procedures online that I finally ran out of internet. I know all this stuff because ER cardiologists kept trying to kill me and I figured I'd better know what's going on. It's the reason we are in Pennsylvania instead of Little Rock or St. Louis - if I know more than my cardiologist, time to move on.
But not until Friday, sitting in front of this survey did I consider the fact that I could come away from this whole thing with brain damage. I know transplants carry a heavy risk of stroke while on the table, but those statistics have become way better in recent years because the drugs are better and the procedure is shorter than it used to be. Christie deals with post-transplant patients all the time that have had such problems. But I'd never really considered the question: If you had to live with debilitating brain damage, would it be worth it?
Look at your kids, then at your hands, and around the room you're sitting in. See those books? You can't read them. See your kids playing that video game? You can't join in. Hear the conversation around the dinner table? You have nothing meaningful to add. The most intimate interaction you have with your spouse is when they help you to the bathroom. Maybe you can't listen to music anymore, certainly can't play an instrument. I'll let you chew on that for a moment.
Our light-hearted joking and buzzing through end-of-life questions came to a screeching halt. What if I couldn't cook Chicken Marsala ever again? Or stumble through a song on the guitar? What if Paul singing, "When I find myself in times of trouble..." registered no meaning? Or I couldn't finish reading the Fablehaven series to the boys? Or enjoy an episode of Gilmore Girls with my wife? These are small things, but they are what life is made of. In the words of Rob Thomas: "Our lives are made in these small hours, these little moments, these twists and turns of fate. Time falls away, but these small hours will remain."
Physical limitations are daunting, but sometimes people who can't work around are often just lazy. The mind is where we find ourselves - it's who we are. It's the well from which our creativity, sense of humor, and unique perspective spring. I can't play drums anymore, but I can write songs. I can sing. I can listen. I can't work anymore, but I can learn to paint, cook, clean, code. Most of all I can imagine.
In some ways, I wouldn't mind being trapped inside my own mind. Maybe I could finally figure out what the hell is going on in there, or at least why it's stuck in the 80's. But ceasing to interact with loved ones? Unable to express myself verbally or otherwise? I don't know if I could do that.
I've come to a season in life where I finally care about things like calculus, and reading Marcus Aurelius, and listening really hard to Theolonius Monk. I need to perfect my bouillabaisse sauce and study more Fauvist paintings. I've yet to watch Indiana Jones with the boys because they're too young. I haven't taught either of them to shave, or date, use a weed-eater, or avoid extended warranties. This is clearly not the time to lose my mind. I have a death-grip on what's left of it as is.
So I struggled through those questions, and I have to be honest; the slider more often than not ended up pretty far toward the "unbearable" side of the scale. I guess I've known all along, somewhere in the dark corners of my brain that things could go horribly wrong in this aspect. I've been so focused on the physical that I never considered how mental problems could affect my quality of life (not that they don't already, but you know what I mean).
We finished the session, went to Houlihan's for lunch and laughed and talked about life, the kids, work, A.A. Milne, friends, and mostly the calamari and ginger shrimp. Because that's what you do. We've learned that, as much as possible, you have to answer these questions, consider worse case scenarios, then go play a game with your kids, or drink good wine, or eat good food - whatever it is that makes life enjoyable for you. I suspect I'll never have to deal with any of this when it all comes down, but in the meantime, there is a whole world within and without and I know very little about either. There's no time to brood over it.
Some of you reading this have the same cloud hanging over you. We have a choice to let the anxieties and the what-ifs permeate our lives, or to keep living. The latter is the hardest. But we face this choice constantly and doing the former is to let the disease win. In which case, why are we fighting so hard to stay alive in the first place?
Thursday, March 20, 2014
The Villainy of The Calendar
I'm really starting to hate calendars. I spend way too much time staring at mine and scratching my head.
Like everyone, we have normal life stuff that gets overwhelming at times. Kids's activities, doctor and dentist appointments, scheduling home repairs, and social engagements. Throwing a week long hospital stay into the mix every six weeks has complicated that more than I could have ever imagined.
Christie works nights, which works well for us usually. She works while we sleep, and the wee hours are generally non-eventful. She's home sleeping during the day so that if I need her (like the time the van got stuck in the snow, or if one of the boys gets hurt, etc.) she's home and can be roused to rescue us. We are currently a one car (van) family and therefore the boys and I aren't stranded at home all day without a vehicle since she only uses it at night. There are occasional conflicts, but friends are usually happy to give us a ride for late night events when she's working.
This is all fine until I have a hospital stay. During that week, she either has to be off at night or the boys have to stay with friends if she works. This requires careful planning. It's extremely diffficult to plan around her work schedule since it's posted months before I can schedule my visit. This usually means a lot of trading shifts, begging favors, or simply missing work sometimes. She doesn't stay with me every night, but the first night is pretty awful and she feels like she needs to be there. Not to mention she often has to work the night before my procedure, meaning she's been awake for close to 36 hours by the time she goes home the next morning. She's required to work at least three shifts per week so if my visit is from Wedneday to Wednedsay, there's no way around this.
Our Foley friends have been so helpful in this regard, keeping the boys several nights that week so Christie can stay at the hospital. But we're also the proud owners of the most neurotic dog on the planet.
Ah, the dog. Adopted before we knew we would be doing any of this. The dog who, though loved dearly, nearly passes out from stress and fright on a four minute car ride. Who must be crated when we leave the house lest she eat one shoe per person who has left. The dog, who cannot be boarded because she has panic attacks when one of the boys spends too long outside checking the mail. She is the poster child for adandoment issues. So with the boys at the Foleys and Christie at work or with me, we risk leaving the dog crated for 14+ hours. Inhumane, right? So we either have to have someone come over to let the dog out occasionally, or stay here with the dog. Fortunately, we have friends who are willing to do both. So we have options.
As you can see, this requires planning each and every night that I'm admitted, down to the details. People are willing to help, but they have their own lives too. Committments at certain times of the morning or evening requiring the boys to be picked up or dropped off at particular times. Christie to be back home for the dog within a certain number of hours. It's not that it can't be done. It just requires an insane amount of planning.
Generally, we get everything set up, and the whole thing falls through the week before. The first time, the hospital wanted to change weeks because they didn't have a room for me. After much cajoling and frustration, they found a room. Changing days, even by a single day, affects everything. Childcare, work schedule, dog situation, transportation, etc. etc. etc.
The second time, we had to change weeks because no one mentioned that the cath lab would be closed on the 2nd of January. Last time, they neglected to inform us that my visits had to be no less than thirty one days apart, forcing us to change my stay from Wed-Wed to Fri-Fri.
This time, due to the never-ending, Antarctic, Jupiter-like ice-age that we're humbly calling "winter" here in Pennsylvania, family that intended to be here for my visit to help with the boys (thus allowing Christie to work some shifts during my stay) can't risk getting trapped in the polar-vortex and spending April trapped somewhere in the hills of Virginia. None of this stuff is purposeful, but it happens.
So we're scrambing. This latest fiasco, combined with Christie being out for surgery the last four weeks, has made it unlikely for Christie to be off work the night of my procedure. Meaning she would have to be up at six on Wedneday, spend most of the day at the hospital, likely get no sleep, and then work a twelve hour shift -taking people's lives into her hands- pick up the boys, and drive home. Alternately, she could leave me at the hospital and get some sleep before going to work. Is she really going to be able to sleep while I'm half an hour away getting a wire punched into my jugular vein and threaded into my heart? (Hint: no)
The complications of moving her schedule around and taking care of the dog may seriously mean we have to cancel this coming visit. The logistics of trading shifts this late in the game make it nearly impossible. Not to mention that everyone else who wants to help us out is in limbo, waiting on the unlikely call to confirm or deny a shift trade for Wednesday. If we cancel, I lose a week of 1A time which not only looks bad to UNOS, but could be crucial in determining candidate priority when I'm higher on the list. To complicate matters further, Christie will be changing units soon, meaning day time orientation for at least six weeks. It may be July before I can be admitted again. I don't even want to think about what that will look like to the UNOS board.
For those of you reading who are coming up on this season in your journey, prepare for it to be tough. Even when you have people to keep your kids, it's hard on them to be away from both parents so often. Prepare to be worried about your spouse's job security. It all plays a part, and there's really no provision for it. You just have to do it or not. I suspect most transplant candidates reading this are empty-nesters or retirees, which simplifies things to a large degree.
Thing is, I know this will become more difficult. We will reach a point where these visits aren't planned ahead of time, but dictated by my fluid retention and cardiac output. Then we'll be planning on the fly. Hopefully the boys are old enough by then to be home alone more, which would also solve some of the ridiculous dog problems.
Until then, we continue to fly by the seat of our pants. Never a dull moment. But some days it feels like my waistband is wearing out.
Like everyone, we have normal life stuff that gets overwhelming at times. Kids's activities, doctor and dentist appointments, scheduling home repairs, and social engagements. Throwing a week long hospital stay into the mix every six weeks has complicated that more than I could have ever imagined.
Christie works nights, which works well for us usually. She works while we sleep, and the wee hours are generally non-eventful. She's home sleeping during the day so that if I need her (like the time the van got stuck in the snow, or if one of the boys gets hurt, etc.) she's home and can be roused to rescue us. We are currently a one car (van) family and therefore the boys and I aren't stranded at home all day without a vehicle since she only uses it at night. There are occasional conflicts, but friends are usually happy to give us a ride for late night events when she's working.
This is all fine until I have a hospital stay. During that week, she either has to be off at night or the boys have to stay with friends if she works. This requires careful planning. It's extremely diffficult to plan around her work schedule since it's posted months before I can schedule my visit. This usually means a lot of trading shifts, begging favors, or simply missing work sometimes. She doesn't stay with me every night, but the first night is pretty awful and she feels like she needs to be there. Not to mention she often has to work the night before my procedure, meaning she's been awake for close to 36 hours by the time she goes home the next morning. She's required to work at least three shifts per week so if my visit is from Wedneday to Wednedsay, there's no way around this.
Our Foley friends have been so helpful in this regard, keeping the boys several nights that week so Christie can stay at the hospital. But we're also the proud owners of the most neurotic dog on the planet.
Ah, the dog. Adopted before we knew we would be doing any of this. The dog who, though loved dearly, nearly passes out from stress and fright on a four minute car ride. Who must be crated when we leave the house lest she eat one shoe per person who has left. The dog, who cannot be boarded because she has panic attacks when one of the boys spends too long outside checking the mail. She is the poster child for adandoment issues. So with the boys at the Foleys and Christie at work or with me, we risk leaving the dog crated for 14+ hours. Inhumane, right? So we either have to have someone come over to let the dog out occasionally, or stay here with the dog. Fortunately, we have friends who are willing to do both. So we have options.
As you can see, this requires planning each and every night that I'm admitted, down to the details. People are willing to help, but they have their own lives too. Committments at certain times of the morning or evening requiring the boys to be picked up or dropped off at particular times. Christie to be back home for the dog within a certain number of hours. It's not that it can't be done. It just requires an insane amount of planning.
Generally, we get everything set up, and the whole thing falls through the week before. The first time, the hospital wanted to change weeks because they didn't have a room for me. After much cajoling and frustration, they found a room. Changing days, even by a single day, affects everything. Childcare, work schedule, dog situation, transportation, etc. etc. etc.
The second time, we had to change weeks because no one mentioned that the cath lab would be closed on the 2nd of January. Last time, they neglected to inform us that my visits had to be no less than thirty one days apart, forcing us to change my stay from Wed-Wed to Fri-Fri.
This time, due to the never-ending, Antarctic, Jupiter-like ice-age that we're humbly calling "winter" here in Pennsylvania, family that intended to be here for my visit to help with the boys (thus allowing Christie to work some shifts during my stay) can't risk getting trapped in the polar-vortex and spending April trapped somewhere in the hills of Virginia. None of this stuff is purposeful, but it happens.
So we're scrambing. This latest fiasco, combined with Christie being out for surgery the last four weeks, has made it unlikely for Christie to be off work the night of my procedure. Meaning she would have to be up at six on Wedneday, spend most of the day at the hospital, likely get no sleep, and then work a twelve hour shift -taking people's lives into her hands- pick up the boys, and drive home. Alternately, she could leave me at the hospital and get some sleep before going to work. Is she really going to be able to sleep while I'm half an hour away getting a wire punched into my jugular vein and threaded into my heart? (Hint: no)
The complications of moving her schedule around and taking care of the dog may seriously mean we have to cancel this coming visit. The logistics of trading shifts this late in the game make it nearly impossible. Not to mention that everyone else who wants to help us out is in limbo, waiting on the unlikely call to confirm or deny a shift trade for Wednesday. If we cancel, I lose a week of 1A time which not only looks bad to UNOS, but could be crucial in determining candidate priority when I'm higher on the list. To complicate matters further, Christie will be changing units soon, meaning day time orientation for at least six weeks. It may be July before I can be admitted again. I don't even want to think about what that will look like to the UNOS board.
For those of you reading who are coming up on this season in your journey, prepare for it to be tough. Even when you have people to keep your kids, it's hard on them to be away from both parents so often. Prepare to be worried about your spouse's job security. It all plays a part, and there's really no provision for it. You just have to do it or not. I suspect most transplant candidates reading this are empty-nesters or retirees, which simplifies things to a large degree.
Thing is, I know this will become more difficult. We will reach a point where these visits aren't planned ahead of time, but dictated by my fluid retention and cardiac output. Then we'll be planning on the fly. Hopefully the boys are old enough by then to be home alone more, which would also solve some of the ridiculous dog problems.
Until then, we continue to fly by the seat of our pants. Never a dull moment. But some days it feels like my waistband is wearing out.
Sunday, March 2, 2014
The Quiet Between The Storms
This could actually be a reference to our weather here in Pennsylvania lately, but life at home between hospital stays is quite valuable at this point. There is a fair amount of simply sitting around, reading, playing games, or staring into space - all healthy for the soul and brain in my opinion.
Christie is also recovering well from her gallbladder surgery, though finding safe food to eat is challenging. Super low-fat is recommended, which makes proteins difficult - no beans, no dairy, no red meat, chicken, or pork. We're eating a lot of seafood but those options start to run out quickly. For people who love food and cooking so much, this is going to be tough. Hopefully she heals up quickly and can back to a more balanced diet. We have a lot of concerns about "low-fat" foods since they usually replace the natural fats with all kinds of chemical crap that's actually more unhealthy for you. But the digestive system wants what it wants, and right now, fat is persona-non-grata.
 |
| Our friends, Marc and Ellen Gecker, brought groceries the day after Christie's surgery, as well as strawberry shortcake with low-fat Kool-Whip since she can have all three ingredients. |
 | ||||
| Marc played his increasingly popular "Birthday Song" for Christie (who has requested that any pictures of her be left out of this post, in view of having just had an organ removed) |
The rest of the week has been pretty lazy. Eating leftovers an trying to avoid going out into the Antarctic temperatures.
 |
| The boys decided they are definitely fans of strawberry shortcake |
 |
| Epic battles of Indigo, Settlers of Catan, Carkasonne, and Ticket to Ride were waged (we pulled the card table into the living room so Christie could sit in the recliner). |
 |
| Blitz is happiest when everyone is home. |
 |
| Rich decided to hand-sew a stuff animal/octopus/one-eyed squid thingy, and with a little help from mom, finished it in a day. Read more HERE on his blog. |
 |
| The picture is blurry because Brennan is beating all of our tails in Livingstone so quickly, the camera can't even capture it. |
In between, the boys have spent the afternoon with a group of friends across town playing Dungeons and Dragons, we've watched the Jackie Robinson movie (42) accompanied by much discussion about the civil rights movement and Jim Crowe, Rich learned to grill tilapia, and they're both eyeball deep in the Game Maker program, coding some simple games. I love that they're learning this stuff. We have more time since we dropped Cyber school at the beginning of the month (more on that HERE at our homeschool blog).
Next storm due the last week of March. We expect a visit from my parents, about which we're very excited. Rumor has it they may stay a few weeks, giving us plenty of time to fatten them up and wear them out.
Sunday, February 23, 2014
It's All About The Benjamin's (revisited)
There have been a LOT of discussions about medical expenses and
questions about finances lately from some of my newer readers. I wrote a
post back in May of 2012 in regards to finances re: chronic illness. So
much has happened since then, so I thought I would write a more
coherent explanation that reflects the current situation.
LET ME BE CLEAR - this is not a plea for pity or financial help. But, I feel strongly that many fear or oppose universal health care because they have spent most of their adult life in the secure confines of group insurance, local physicians, and short-term health problems. It's not a political thing. But I find the financial woes of the chronically ill are either horribly misunderstood or a complete mystery. That's not fair to the patient, their families, and those who look on helplessly. I hope to shed a bit of light on the link between illness and money (or lack thereof).
It's ironic that money was not too important to us in the early years of marriage. Now it looms over every decision we make. It's not an uncommon story. When I was diagnosed, we owned a successful service business and I was making money playing music for the first time. We had a comfortable lifestyle, a nice rent house, and expendable income. However, we were only six years into our marriage. We were on the brink of building savings, buying a house, investing a little.
When I was diagnosed, everything changed. Our potential rent-to-own situation collapsed, we had to sell the business to break even - meaning we both lost our jobs. Because we worked for ourselves, we did not have group insurance. We had a single-user policy that covered clinic visits and hospitalizations, but no maternity or prescriptions. Christie was excluded from any substantial coverage due to pre-existing conditions. This doesn't seem like a bad deal until you realize that my diagnosis and testing, though extensive required both co-pays and deductibles, and a lot of them. My medications exceeded $800 per month. This was during a period where we had absolutely zero income. It took Christie some time to find a job, but by then, we were behind on car payments, credit card payments, taxes, and utility bills. We moved in with her parents (1.5 hours away from our previous life) and spent a lot of gas money driving back and forth to work and the ministry we were involved in at the time. It took me 2 years to be approved for disability, and I was not allowed to work during this period without jeopardizing that.
Our families helped us when they could and we eventually got back on our feet to some degree, but it was hard to catch up, meaning we went without a lot during those following years. There were few procedures and Christie's insurance paid some for prescriptions - even then they still exceeded $450 per month.We struggled during that entire time to meet medical expenses and monthly bills, mainly because we were living on two small incomes and trying to continue pastoring a small church with no compensation.
Fast forward to 2010. Realizing that Christie needed a dependable career, we sold our house and spent it all to put her through nursing school. Many eggs - one basket. Though we had grants, I couldn't work, and we had to fund basic living expenses with student loans and credit cards. During Christie's last semester my health took a downward turn again. We were almost completely out of the financial mess that started 10 years earlier. Now we had to finance a trip to Boston because I needed to see a specialist - there was no one in the mid-south who fit the bill. Plane tickets, transportation, hotel, food for several days. Some friends helped with these expenses but it was just the beginning of several years of financial ruin.
We tried to work with a transplant team in St. Louis, hoping I could be treated there and avoid a move to New England. We made five separate trips to St. Louis between 2010 and 2011. We estimate that between gas, hotel, food, co-pays, deductibles, and lost wages, each of those trips cost us in the neighborhood of $1000-$1200 (not including out of network payments and the medical expenses). That's conservatively about $7000 in six months - on a nurse's salary and just starting to pay off student loans. Christie had started a new job - no personal days, vacation days, or sick leave saved up. We moved from our nice rental into a cheap-o apartment to make ends meet. We were still trying desperately not to fill up our credit cards again.
When we realized St. Louis wouldn't list me for transplant, we had to look to Boston. Christie took a job with a travel company hoping we could scope out a town nearby to settle. Crap insurance, massive deductibles and prescriptions co-pays. When a normal person is sick, they may go to the doc one or two times. When you're chronically ill, scarcely a week goes by that you don't have some type of appointment, consultation, blood draw, or test. Those small co-pays pile up quickly.
And think about the way prescriptions work for chronically ill people: I was hospitalized three times in January of 2012 for atrial fibrillation. There's danger of stroke after such incidents so they prescribe a blood thinner to keep your blood from clotting and sending a Clot of Death straight to your brain which will kill you within seconds
"So," says the doctor, "there's a generic thinner we can prescribe, but it's not as successful in preventing Brain Clots of Death and gods forbid you should get one of those while driving down the road with your kids in the car and crash into an old folks home where the local children's choir is singing...OR, we can prescribe the name brand drug (Pradaxa) which almost certainly guarantees that you will not in fact accidentally commit vehicular man-slaugther. Which one would you like?"
Well, that's not a trick question. Problem is, the co-pay for the name brand that keeps The Clot of Death at bay was a whopping $90 per month. As for the ER visits, Christie was between contracts with her travel nurse employer and we had minimal insurance coverage for the gap. (Next month, I will finally pay off the bill that I started in February of 2012. It was nearly $8000).
I take 8 pills every day (some several times). I'll leave you to guess how many of those are generic and how many are name brand to prevent such things as The Clot of Death. When it comes to medicine, it seems like we were behind from the get go. I remember some of the early months of illness when I desperately needed to get a prescription filled but we didn't have $550 laying around and had to wait until the absolute last moment, thankfully the day before Christie got paid, so we could write a check that wouldn't bounce. Hand to mouth is a conservative description. My parents helped when they could, but they still had two kids at home. Most people fill prescriptions 90 days at a time, or buy them early, but we were always so far behind that it just wasn't possible.
While we traveled, we made trips to Boston about every six weeks for two years from wherever we were. Pennsylvania, New Hampshire, Norwalk Connecticut, Springfield, Massachusetts. Depending on the driving distance, we estimate (setting aside medical bills) that each trip cost somewhere between $800-$1000. That's another $8000 per year. It's no mystery where our "expendable" income went. Hotel rooms at $200 a pop in downtown Boston, food for 4 - not fast food because I have to watch my sodium - at $50 a pop for 2-3 days. $20 here and there for subway passes and taxi fares. And by trying to make the trips not such a drag for the kids, probably another $100 for admission to aquariums, children's museums, and anything to offset dragging them around all over the place. On a nurse's salary and less than part time disability, it's simply untenable. Some years, nearly an entire 3rd of our income has been sucked away by medical related expenses. Even now, with good insurance, our out of pocket is $3000 per person or $6000 for a family. Looks like we'll hit the $6000 first, but that's nothing to be thankful for.
So we settled in Springfield, MA. Rent deposits, utility deposits, new household expenses, the cost of moving our furniture there from Arkansas. That whole fiasco was another $8-10,000, not including deductibles with a new insurance plan. Eight months later, we were told my Boston listing was essentially useless for reasons I have explained previously on this blog.
This spawned a whole new set of expenses - we decided to move back to PA, but we had to find a house. Cue another four month round of gas, meals, hotels, and lost wages as we made 4-5 trips to PA to house hunt. Our friends, the Foleys helped us out a TON by housing and feeding us during this time, but there were weeks when they were out of town or otherwise committed and we had to do a hotel. We tried to find a rent house, but my physical limitations necessitate some fairly specific features in regards to stairs, bathrooms, etc. Rentals are scarce in this part of PA to begin with. So we gave in and got a loan to buy a house. Another $8-15,000 for down payments, deposits, moving expenses. The home is older and we've already spent nearly $5000 just on repairs, electrical and plumbing issues, etc. - but we were in a frenzy trying to find a place to live and couldn't examine the house as closely as we should have. But again, the illness forces you into frenzied situations where you have to make quick, often expensive decisions to get the medical care you need - everything else is secondary, but it eventually catches up with you. The piper WILL be paid, one way or the other.
Current day: Not only am I unable to work and incurring medical bills, Christie has had her own problems. The worst, worst, worst thing that can happen to a family with a chronically ill member is for another member to have health problems. She's the breadwinner. Since July, she has suffered an extreme reaction to poison ivy, requiring antibiotics and 2-3 weeks of lost wages, a concussion - another 5-6 weeks of lost wages, and tomorrow she is admitted for gallbladder removal and a possible biopsy which could result in another 5 weeks of lost wages. And we've not yet met our deductibles - it's February. She's had this job for 7 months - again, no sick pay, no vacation time, all personal days used up.
The kicker to all of this is that transplant financial advisers tell us that our part of the transplant procedure will be around $25,000 - $30,000, AFTER both our primary insurance and Medicare have paid their part. We can't even begin to think of saving for that while buried in credit card debt and previous medical bills. Then there's the exorbitant immuno-suppressant medications post-transplant that I will have to take for the rest of my life. There's the issue of the boys as well - HCM (my disease) is genetic. They will be tested again for signs of the disease in a month or so. There is a 50% chance that we could be looking at similar medical expenses for one or both of them - probably not a transplant, but if they are diagnosed, it's entirely possible we're looking at septal ablation, pacemakers, defibrillators, and more expensive medications. I don't want to borrow trouble, but as the Van Halen song says, "No light at the end of the tunnel due to budget constraints."
There is nothing to show for spending this money. I am not "better" than I was at the beginning (though I'm receiving much better care), and there's no guarantee I will be in the end. There is no big screen TV, no new car, no vacation, no college fund, or savings accounts. We've been very creative in trying to simplify, have fun, and do the best with what we have. But Medicare doesn't pay for hotels, gas, meals, or lost wages. The fact that my disease is rare and we've had to travel half the country to get knowledgeable care is the root cause of our debt.
I really hope I don't sound bitter in any of this - it's no one's fault, so being angry about it is just wasted energy. And money still doesn't matter to us all that much. We're not concerned that we don't have all the latest gadgets and a new car. But it's frustrating when your income disappears into thin air and you're still trying to figure out how to pay your kid's orthodontist bills. On the one hand, I'm grateful to live in a country where kids can even get affordable dental care. It could be much worse, as I am acutely aware from seeing so many worse situations in my years of ministry.
The point is, money isn't the point. Knowledge and information is. Healthy people just don't get it sometimes, which adds to the frustration of the chronically ill. Politicians and conservative news channels constantly lump us in with welfare leeches, illegals, and lazy people who defraud the system. Even Mike Huckabee - someone I consider a friend - once referred to the handicapped as "burned down houses," on national television. I have a great deal of affection for Mike. But that hurt. I've developed a thicker skin since then. It's not that sick people necessarily want anyone's charity. They just want a little bit of compassion and benefit of the doubt when it comes to their finances, rather than assumptions and stereotypes.
Here's my advice. You have a friend that's chronically ill? Knock it off with the flowers and cards. That's just more money in the trash. Pay their water bill. Watch their kids for free. Buy them gift cards to clothing stores and shoe stores. Buy gift certificates to restaurants. Take their car to get detailed and oil changed. Notice the things they can't or don't do that healthy people take for granted. We feel so grateful to be part of a community that has done many of these things for us - they pay attention. But these are the little things no one thinks about that get put off or neglected altogether to avoid going to collections for medical bills due to the very clinic from which they're receiving care.
And above all - don't assert to them that their insurance should or does pay for everything. Unless you've hit the out-of-pocket limit years in a row or had to travel 300 miles to the doctor, they have forgotten way more about medical insurance policies than you will ever learn in a lifetime. Just assume that they're doing the best they can considering the situation and mow their lawn. They'll be more grateful than you can imagine.
LET ME BE CLEAR - this is not a plea for pity or financial help. But, I feel strongly that many fear or oppose universal health care because they have spent most of their adult life in the secure confines of group insurance, local physicians, and short-term health problems. It's not a political thing. But I find the financial woes of the chronically ill are either horribly misunderstood or a complete mystery. That's not fair to the patient, their families, and those who look on helplessly. I hope to shed a bit of light on the link between illness and money (or lack thereof).
It's ironic that money was not too important to us in the early years of marriage. Now it looms over every decision we make. It's not an uncommon story. When I was diagnosed, we owned a successful service business and I was making money playing music for the first time. We had a comfortable lifestyle, a nice rent house, and expendable income. However, we were only six years into our marriage. We were on the brink of building savings, buying a house, investing a little.
When I was diagnosed, everything changed. Our potential rent-to-own situation collapsed, we had to sell the business to break even - meaning we both lost our jobs. Because we worked for ourselves, we did not have group insurance. We had a single-user policy that covered clinic visits and hospitalizations, but no maternity or prescriptions. Christie was excluded from any substantial coverage due to pre-existing conditions. This doesn't seem like a bad deal until you realize that my diagnosis and testing, though extensive required both co-pays and deductibles, and a lot of them. My medications exceeded $800 per month. This was during a period where we had absolutely zero income. It took Christie some time to find a job, but by then, we were behind on car payments, credit card payments, taxes, and utility bills. We moved in with her parents (1.5 hours away from our previous life) and spent a lot of gas money driving back and forth to work and the ministry we were involved in at the time. It took me 2 years to be approved for disability, and I was not allowed to work during this period without jeopardizing that.
Our families helped us when they could and we eventually got back on our feet to some degree, but it was hard to catch up, meaning we went without a lot during those following years. There were few procedures and Christie's insurance paid some for prescriptions - even then they still exceeded $450 per month.We struggled during that entire time to meet medical expenses and monthly bills, mainly because we were living on two small incomes and trying to continue pastoring a small church with no compensation.
Fast forward to 2010. Realizing that Christie needed a dependable career, we sold our house and spent it all to put her through nursing school. Many eggs - one basket. Though we had grants, I couldn't work, and we had to fund basic living expenses with student loans and credit cards. During Christie's last semester my health took a downward turn again. We were almost completely out of the financial mess that started 10 years earlier. Now we had to finance a trip to Boston because I needed to see a specialist - there was no one in the mid-south who fit the bill. Plane tickets, transportation, hotel, food for several days. Some friends helped with these expenses but it was just the beginning of several years of financial ruin.
We tried to work with a transplant team in St. Louis, hoping I could be treated there and avoid a move to New England. We made five separate trips to St. Louis between 2010 and 2011. We estimate that between gas, hotel, food, co-pays, deductibles, and lost wages, each of those trips cost us in the neighborhood of $1000-$1200 (not including out of network payments and the medical expenses). That's conservatively about $7000 in six months - on a nurse's salary and just starting to pay off student loans. Christie had started a new job - no personal days, vacation days, or sick leave saved up. We moved from our nice rental into a cheap-o apartment to make ends meet. We were still trying desperately not to fill up our credit cards again.
When we realized St. Louis wouldn't list me for transplant, we had to look to Boston. Christie took a job with a travel company hoping we could scope out a town nearby to settle. Crap insurance, massive deductibles and prescriptions co-pays. When a normal person is sick, they may go to the doc one or two times. When you're chronically ill, scarcely a week goes by that you don't have some type of appointment, consultation, blood draw, or test. Those small co-pays pile up quickly.
And think about the way prescriptions work for chronically ill people: I was hospitalized three times in January of 2012 for atrial fibrillation. There's danger of stroke after such incidents so they prescribe a blood thinner to keep your blood from clotting and sending a Clot of Death straight to your brain which will kill you within seconds
"So," says the doctor, "there's a generic thinner we can prescribe, but it's not as successful in preventing Brain Clots of Death and gods forbid you should get one of those while driving down the road with your kids in the car and crash into an old folks home where the local children's choir is singing...OR, we can prescribe the name brand drug (Pradaxa) which almost certainly guarantees that you will not in fact accidentally commit vehicular man-slaugther. Which one would you like?"
Well, that's not a trick question. Problem is, the co-pay for the name brand that keeps The Clot of Death at bay was a whopping $90 per month. As for the ER visits, Christie was between contracts with her travel nurse employer and we had minimal insurance coverage for the gap. (Next month, I will finally pay off the bill that I started in February of 2012. It was nearly $8000).
I take 8 pills every day (some several times). I'll leave you to guess how many of those are generic and how many are name brand to prevent such things as The Clot of Death. When it comes to medicine, it seems like we were behind from the get go. I remember some of the early months of illness when I desperately needed to get a prescription filled but we didn't have $550 laying around and had to wait until the absolute last moment, thankfully the day before Christie got paid, so we could write a check that wouldn't bounce. Hand to mouth is a conservative description. My parents helped when they could, but they still had two kids at home. Most people fill prescriptions 90 days at a time, or buy them early, but we were always so far behind that it just wasn't possible.
While we traveled, we made trips to Boston about every six weeks for two years from wherever we were. Pennsylvania, New Hampshire, Norwalk Connecticut, Springfield, Massachusetts. Depending on the driving distance, we estimate (setting aside medical bills) that each trip cost somewhere between $800-$1000. That's another $8000 per year. It's no mystery where our "expendable" income went. Hotel rooms at $200 a pop in downtown Boston, food for 4 - not fast food because I have to watch my sodium - at $50 a pop for 2-3 days. $20 here and there for subway passes and taxi fares. And by trying to make the trips not such a drag for the kids, probably another $100 for admission to aquariums, children's museums, and anything to offset dragging them around all over the place. On a nurse's salary and less than part time disability, it's simply untenable. Some years, nearly an entire 3rd of our income has been sucked away by medical related expenses. Even now, with good insurance, our out of pocket is $3000 per person or $6000 for a family. Looks like we'll hit the $6000 first, but that's nothing to be thankful for.
So we settled in Springfield, MA. Rent deposits, utility deposits, new household expenses, the cost of moving our furniture there from Arkansas. That whole fiasco was another $8-10,000, not including deductibles with a new insurance plan. Eight months later, we were told my Boston listing was essentially useless for reasons I have explained previously on this blog.
This spawned a whole new set of expenses - we decided to move back to PA, but we had to find a house. Cue another four month round of gas, meals, hotels, and lost wages as we made 4-5 trips to PA to house hunt. Our friends, the Foleys helped us out a TON by housing and feeding us during this time, but there were weeks when they were out of town or otherwise committed and we had to do a hotel. We tried to find a rent house, but my physical limitations necessitate some fairly specific features in regards to stairs, bathrooms, etc. Rentals are scarce in this part of PA to begin with. So we gave in and got a loan to buy a house. Another $8-15,000 for down payments, deposits, moving expenses. The home is older and we've already spent nearly $5000 just on repairs, electrical and plumbing issues, etc. - but we were in a frenzy trying to find a place to live and couldn't examine the house as closely as we should have. But again, the illness forces you into frenzied situations where you have to make quick, often expensive decisions to get the medical care you need - everything else is secondary, but it eventually catches up with you. The piper WILL be paid, one way or the other.
Current day: Not only am I unable to work and incurring medical bills, Christie has had her own problems. The worst, worst, worst thing that can happen to a family with a chronically ill member is for another member to have health problems. She's the breadwinner. Since July, she has suffered an extreme reaction to poison ivy, requiring antibiotics and 2-3 weeks of lost wages, a concussion - another 5-6 weeks of lost wages, and tomorrow she is admitted for gallbladder removal and a possible biopsy which could result in another 5 weeks of lost wages. And we've not yet met our deductibles - it's February. She's had this job for 7 months - again, no sick pay, no vacation time, all personal days used up.
The kicker to all of this is that transplant financial advisers tell us that our part of the transplant procedure will be around $25,000 - $30,000, AFTER both our primary insurance and Medicare have paid their part. We can't even begin to think of saving for that while buried in credit card debt and previous medical bills. Then there's the exorbitant immuno-suppressant medications post-transplant that I will have to take for the rest of my life. There's the issue of the boys as well - HCM (my disease) is genetic. They will be tested again for signs of the disease in a month or so. There is a 50% chance that we could be looking at similar medical expenses for one or both of them - probably not a transplant, but if they are diagnosed, it's entirely possible we're looking at septal ablation, pacemakers, defibrillators, and more expensive medications. I don't want to borrow trouble, but as the Van Halen song says, "No light at the end of the tunnel due to budget constraints."
There is nothing to show for spending this money. I am not "better" than I was at the beginning (though I'm receiving much better care), and there's no guarantee I will be in the end. There is no big screen TV, no new car, no vacation, no college fund, or savings accounts. We've been very creative in trying to simplify, have fun, and do the best with what we have. But Medicare doesn't pay for hotels, gas, meals, or lost wages. The fact that my disease is rare and we've had to travel half the country to get knowledgeable care is the root cause of our debt.
I really hope I don't sound bitter in any of this - it's no one's fault, so being angry about it is just wasted energy. And money still doesn't matter to us all that much. We're not concerned that we don't have all the latest gadgets and a new car. But it's frustrating when your income disappears into thin air and you're still trying to figure out how to pay your kid's orthodontist bills. On the one hand, I'm grateful to live in a country where kids can even get affordable dental care. It could be much worse, as I am acutely aware from seeing so many worse situations in my years of ministry.
The point is, money isn't the point. Knowledge and information is. Healthy people just don't get it sometimes, which adds to the frustration of the chronically ill. Politicians and conservative news channels constantly lump us in with welfare leeches, illegals, and lazy people who defraud the system. Even Mike Huckabee - someone I consider a friend - once referred to the handicapped as "burned down houses," on national television. I have a great deal of affection for Mike. But that hurt. I've developed a thicker skin since then. It's not that sick people necessarily want anyone's charity. They just want a little bit of compassion and benefit of the doubt when it comes to their finances, rather than assumptions and stereotypes.
Here's my advice. You have a friend that's chronically ill? Knock it off with the flowers and cards. That's just more money in the trash. Pay their water bill. Watch their kids for free. Buy them gift cards to clothing stores and shoe stores. Buy gift certificates to restaurants. Take their car to get detailed and oil changed. Notice the things they can't or don't do that healthy people take for granted. We feel so grateful to be part of a community that has done many of these things for us - they pay attention. But these are the little things no one thinks about that get put off or neglected altogether to avoid going to collections for medical bills due to the very clinic from which they're receiving care.
And above all - don't assert to them that their insurance should or does pay for everything. Unless you've hit the out-of-pocket limit years in a row or had to travel 300 miles to the doctor, they have forgotten way more about medical insurance policies than you will ever learn in a lifetime. Just assume that they're doing the best they can considering the situation and mow their lawn. They'll be more grateful than you can imagine.
Friday, February 21, 2014
Emancipation
So the day has finally arrived. Immediately after breakfast, Natalie (the same nurse I had last Friday) pulls the swan cath out. She can do this right in the room. First comes the most painful part of this entire procedure - removing tape that's been affixed to the most tender part of my neck for an entire week, along with the tape that was placed on top of that to keep it in place. Because of the awkward angle of the cath, it's really hard to keep it from leaning away from my neck, so it's a daily battle to keep it affixed - when it pulls away, it likewise pulls on the little stitch that affixes it to my neck.
So lots of tape. I prefer Natalie above all for this because she does it as gently as possible without being a wimp about it. Once the tape is off, I take a deep breath and hold it. Out comes the swan with one swift pull. I don't feel a thing.
Next, she cuts the stitch, which again, is painless. Then she pulls the sheath that the cath lab used to guide the initial placement. It's not much bigger than the cath itself but much shorter. Pressure on the insertion point for about 2-3 minutes, then an occlusion bandage to keep the nasties out until it scabs over.
So all that's left as I head home is the bandage and a lot of tape goo that won't come off for a few days. Our dog, Blitz, is really interested in the bandage. It smells funny because even though the area is scrubbed clean before I leave, the drainage over a week's time is funky.
I generally roll over onto my right side for the first time all week and catch a bit more sleep. Natalie disassembles all of Dr. DooDaa's decorations. It's a lot of stuff and has become a rat's nest over the week. We blame the float nurses and all of it has to go into the Bio waste bin.
I sleep a bit, get up, get dressed, and pack everything up while I wait for discharge. It's always tricky trying to figure out what time this will happen. Christie usually spends a while sitting around with me while we wait.
I also think I pulled a fast one on the cafeteria yesterday - just for kicks I ordered cheese pizza for lunch, which is absolutely not on the low-sodium diet, but probably more low-sodium than most of the stuff that is. They actually delivered!
A lot of ups and downs this week, but I hope this gives everyone a glimpse into what goes on while I'm here and takes some of the mystery out of it. I may not post as much while I'm home. I want to get the boy's homeschool blog going again and prepare for spring. Things to do at the house, writing and music to finish, new dishes to learn, book clubs, D&D clubs, game clubs, time with friends, new restaurants, good wine, Game of Thrones, Walking Dead, and Master Chef. So much to look forward to and time is precious.
Update on Christie: She goes in for gallbladder removal at 9:45 Monday morning. This *should* be a 1-2 hour surgery with an overnight admission. A pathologist will be present during the surgery to assess the situation. If he has any concerns, they will do a wedge biopsy which requires 3-4 hours, as well as a liver re-section, and a 3-4 day admission for recovery. Christie is trying to juggle her work schedule around this and hopes she won't miss much work. It's been a tough 8 months, between a violent poison ivy reaction, a concussion, and now this. She's understandably frustrated, but we'll figure it out like we always do. Thanks to everyone for your thoughts and prayers.
So lots of tape. I prefer Natalie above all for this because she does it as gently as possible without being a wimp about it. Once the tape is off, I take a deep breath and hold it. Out comes the swan with one swift pull. I don't feel a thing.
 |
| So the yellow cord in her right hand down to where the plastic wrapping starts is the part that stays inside the jugular down to the heart. You can see all the other tubing that feeds into it for meds, diuretics, testing, etc. |
Next, she cuts the stitch, which again, is painless. Then she pulls the sheath that the cath lab used to guide the initial placement. It's not much bigger than the cath itself but much shorter. Pressure on the insertion point for about 2-3 minutes, then an occlusion bandage to keep the nasties out until it scabs over.
 |
| Once the cath is out I have a few hours before discharge, so they leave me hooked up to my portable heart monitor - you can see one of the leads at the bottom right. |
So all that's left as I head home is the bandage and a lot of tape goo that won't come off for a few days. Our dog, Blitz, is really interested in the bandage. It smells funny because even though the area is scrubbed clean before I leave, the drainage over a week's time is funky.
I generally roll over onto my right side for the first time all week and catch a bit more sleep. Natalie disassembles all of Dr. DooDaa's decorations. It's a lot of stuff and has become a rat's nest over the week. We blame the float nurses and all of it has to go into the Bio waste bin.
 |
| Sometimes technology comes down to simple plumbing. |
 |
| Dr. Doodaa looks naked and alone. I kind of feel bad for him, but alas, he will go on to serve other patients until I see him again. Farewell for now, my top heavy friend. |
I sleep a bit, get up, get dressed, and pack everything up while I wait for discharge. It's always tricky trying to figure out what time this will happen. Christie usually spends a while sitting around with me while we wait.
 |
| My IMC survival kit: Cooler with fruit juice and meals, talcum powder (because the meds make me sweat like Al Capone at an IRS audit), Kindle (for reading, but also texting, blogging, etc.), Transformer pajama pants - easy access for the urinal and super comfortable. Earplugs - an absolute must if you're going to sleep through the night. I have a private room with a sliding glass door so it's fairly quite anyway. Also, the nurses are really good about whispering at night and trying to minimize noise. With these babies in place, I don't even wake up when they come in to draw blood through the cath and change drip bags. Not pictured: My laptop - Steam, Blogger, Facebook, and Music Creator which I've spent most of the week on, mixing some songs I've been working on. |
I also think I pulled a fast one on the cafeteria yesterday - just for kicks I ordered cheese pizza for lunch, which is absolutely not on the low-sodium diet, but probably more low-sodium than most of the stuff that is. They actually delivered!
 |
| Of all the pizza slices I've eaten, this was certainly one of them. It wasn't terrible, but it wasn't freezer-pizza bad either. I'm going to call it a victory and shoot for a cheeseburger next time. |
A lot of ups and downs this week, but I hope this gives everyone a glimpse into what goes on while I'm here and takes some of the mystery out of it. I may not post as much while I'm home. I want to get the boy's homeschool blog going again and prepare for spring. Things to do at the house, writing and music to finish, new dishes to learn, book clubs, D&D clubs, game clubs, time with friends, new restaurants, good wine, Game of Thrones, Walking Dead, and Master Chef. So much to look forward to and time is precious.
Update on Christie: She goes in for gallbladder removal at 9:45 Monday morning. This *should* be a 1-2 hour surgery with an overnight admission. A pathologist will be present during the surgery to assess the situation. If he has any concerns, they will do a wedge biopsy which requires 3-4 hours, as well as a liver re-section, and a 3-4 day admission for recovery. Christie is trying to juggle her work schedule around this and hopes she won't miss much work. It's been a tough 8 months, between a violent poison ivy reaction, a concussion, and now this. She's understandably frustrated, but we'll figure it out like we always do. Thanks to everyone for your thoughts and prayers.
Thursday, February 20, 2014
You Had A Bad Day
For all the days I'm here in which there's nothing to report, Tuesday was a doozy.
It started simply enough. I usually sleep on and off as the nursing staff, students, and residents buzz around taking care of business. In the midst of all this, my nurse tells me "they" are increasing my inotrophics. These are two meds (dopamine and dobutamine) on a drip that are administered the whole time I'm here. In fact, they are the main reason I'm here so often - UNOS (the transplant big shots) require that a transplant candidate spend a certain amount of time admitted to the hospital on inotrophic/IV drugs. So as long as I'm here, and as long as I'm receiving this treatment, I am gaining what's called "IA time" which in turn helps me to move up the transplant waiting list.
I always want to know why something is being changed in my standing orders. I've had too many close-calls with the Grim Reaper in emergency rooms and hospitals not to. I advocate for myself so aggressively that it's probably offensive at times but not doing so is a quick way to get dead. And that involves a lot of paperwork, so I figure I'm helping everybody in the end.
The nurse didn't know why, but the doc was next door and would be stopping in on rounds to discuss it. Now my suspicion was that he himself didn't order it, but rather one of his residents - my usual doctor is out this week, so one of his colleagues is running the show here in the heart unit. He and I already have this understanding that I want to know what is happening at all times. The doc who's here this week apparently gives his students more free rein with patients. It's a teaching hospital, I get that. But I ran into a problem on Monday when a resident tried to stop my Heparin (blood thinner) drip in favor of Levanox - administered by shots in the stomach a few times a day. Um, no thank you Monty, I'm going to stay with whatever is behind Door #1. Sometimes doctors change orders without talking to or even looking at the patient, as was the case here. I don't tolerate it because it's dangerous and they know it's dangerous. Turns out, the resident ordered this change without talking to anyone. And since the Heparin drip isn't really necessary to being with, why change the blood thinner med to shot form? I get enough needles as is.
I suspected the inotrophic increase was a similar situation. Before I could ponder this further, I was overcome with a headache, cold sweats, and gut-wrenching nausea that left me dry-heaving about a dozen times into a bucket. I have a much milder but similar reaction when they start the drips the first time, but it passes quickly. The doctors explained that since the inotrophs were helping my heart function, giving me a bit more might help the diuretic to work more effectively, thus helping to shed some of the fluid I'm retaining in my abdomen. The nausea subsided, but within about thirty minutes it had returned with a vengeance. Horrible stomach cramps made it feel like fireworks were exploding in my kidneys. More dry heaving. The nurse was incredulous because it was such a small increase.
Thus began what I call the "Let's Fix That" cycle, in which you are administered a drug you don't need, spawning bizarre and painful side-effects, that must now be treated with further medications, causing side effects which must be treated with further medications, and so on. It seems to me doctors, especially younger ones, sometimes lose sight of how this cycle began, and become hellbent on seeing the "Let's Fix That" cycle through to the bitter end. And so the doctors began to surmise that the reason for my sudden onset of pain and misery was due to lack of bowel movement, too much sodium, too little this, too much that, no enough of the other, the pull of the moon on the tide, the changing weather, my astrological sign, etc. It takes quite a while sometimes to force them to admit that the only thing that has changed is the thing they just did to you.
In the meantime I couldn't sit or stand without excruciating pain in my lower back and abdomen. I was given Phenergan to relieve the stomach pain. If you've ever had this drug before, you know that it is most likely what the guys in Pink Floyd were passing around when they wrote "The Wall." My dreams consisted of marrying Etta James to conquering an evil corporation run by Will Smith (with my sidekick, a talking toaster oven. Who else?) all to a really terrible dubstep soundtrack. Trippy stuff and lots of it.
I slept from 1:30pm to 5pm only to awake and find that the pain was still there. I had to have a nurse help me from the bed to the chair because I was afraid I might fall. This is how the "Let's Fix That" cycle works. Now I was not only STILL in pain from the med increase, but hungover from the attempt to fix the side-effects from the med increase. A nurse finally convinced the doctor to decrease the med again.
By the time Christie and the boys arrived, I was feeling a bit better and as soon as the meds were put back to the original dose, surprise! Most of the pain went away. I'm such a lightweight when it comes to pain meds, so after a delicious meal of chicken enchiladas and a short visit, I went back to bed. Slept from 7pm to 1am, took some pain meds for my neck (it was stiff from sleeping so much) then slept again to 5:30am. I've been up for half an hour, sore in my abdomen, and shaky from the hangover. But breakfast, provided by my lovely wife, is restoring my strength a bit. If you called, texted or email Tuesday after about 11, it's unlikely I saw it or remembered it, so I'll try to catch up today. Nothing personal, I was just busy at a rave with Bert and Ernie after our water-skiing adventure.
What a day. This morning I have to discuss this whole goose chase with my doctor, who will be here). The students will probably leave convinced that poo-poo or the temperature in the room were to blame for the whole thing. Either way, I know for next time to refuse an increase unless I absolutely need it.
Christie met with the oncology surgeon today to find out more about her gallbladder issue. I was able to listen in on speakerphone and the doctor didn't seem to have any concerns about her long-term prognosis. The "polyph" actually turns out to be a thickening of the gallbladder wall, consistent with stones and cholesterol. I'll update here if we get any new information. Thanks for reading and for all the encouraging comments, both here and on Facebook.
It started simply enough. I usually sleep on and off as the nursing staff, students, and residents buzz around taking care of business. In the midst of all this, my nurse tells me "they" are increasing my inotrophics. These are two meds (dopamine and dobutamine) on a drip that are administered the whole time I'm here. In fact, they are the main reason I'm here so often - UNOS (the transplant big shots) require that a transplant candidate spend a certain amount of time admitted to the hospital on inotrophic/IV drugs. So as long as I'm here, and as long as I'm receiving this treatment, I am gaining what's called "IA time" which in turn helps me to move up the transplant waiting list.
 |
| Ever present on Dr. Doodaa's hat, they look perfectly innocent but as I learned Tuesday, can cause a world of hurt if you don't keep an eye on them. |
I always want to know why something is being changed in my standing orders. I've had too many close-calls with the Grim Reaper in emergency rooms and hospitals not to. I advocate for myself so aggressively that it's probably offensive at times but not doing so is a quick way to get dead. And that involves a lot of paperwork, so I figure I'm helping everybody in the end.
The nurse didn't know why, but the doc was next door and would be stopping in on rounds to discuss it. Now my suspicion was that he himself didn't order it, but rather one of his residents - my usual doctor is out this week, so one of his colleagues is running the show here in the heart unit. He and I already have this understanding that I want to know what is happening at all times. The doc who's here this week apparently gives his students more free rein with patients. It's a teaching hospital, I get that. But I ran into a problem on Monday when a resident tried to stop my Heparin (blood thinner) drip in favor of Levanox - administered by shots in the stomach a few times a day. Um, no thank you Monty, I'm going to stay with whatever is behind Door #1. Sometimes doctors change orders without talking to or even looking at the patient, as was the case here. I don't tolerate it because it's dangerous and they know it's dangerous. Turns out, the resident ordered this change without talking to anyone. And since the Heparin drip isn't really necessary to being with, why change the blood thinner med to shot form? I get enough needles as is.
 | |
| Re-enactment of my "Yo, residents be crazy" face upon learning that some moron wanted to stab me in the stomach every eight hours. |
 | ||
| Actual bucket into which I dry heaved. E-bay listing to follow. |
In the meantime I couldn't sit or stand without excruciating pain in my lower back and abdomen. I was given Phenergan to relieve the stomach pain. If you've ever had this drug before, you know that it is most likely what the guys in Pink Floyd were passing around when they wrote "The Wall." My dreams consisted of marrying Etta James to conquering an evil corporation run by Will Smith (with my sidekick, a talking toaster oven. Who else?) all to a really terrible dubstep soundtrack. Trippy stuff and lots of it.
I slept from 1:30pm to 5pm only to awake and find that the pain was still there. I had to have a nurse help me from the bed to the chair because I was afraid I might fall. This is how the "Let's Fix That" cycle works. Now I was not only STILL in pain from the med increase, but hungover from the attempt to fix the side-effects from the med increase. A nurse finally convinced the doctor to decrease the med again.
By the time Christie and the boys arrived, I was feeling a bit better and as soon as the meds were put back to the original dose, surprise! Most of the pain went away. I'm such a lightweight when it comes to pain meds, so after a delicious meal of chicken enchiladas and a short visit, I went back to bed. Slept from 7pm to 1am, took some pain meds for my neck (it was stiff from sleeping so much) then slept again to 5:30am. I've been up for half an hour, sore in my abdomen, and shaky from the hangover. But breakfast, provided by my lovely wife, is restoring my strength a bit. If you called, texted or email Tuesday after about 11, it's unlikely I saw it or remembered it, so I'll try to catch up today. Nothing personal, I was just busy at a rave with Bert and Ernie after our water-skiing adventure.
.jpg) |
| Honeyed yogurt with blueberries and strawberries. Tons of potassium going down here. Yum! |
What a day. This morning I have to discuss this whole goose chase with my doctor, who will be here). The students will probably leave convinced that poo-poo or the temperature in the room were to blame for the whole thing. Either way, I know for next time to refuse an increase unless I absolutely need it.
Christie met with the oncology surgeon today to find out more about her gallbladder issue. I was able to listen in on speakerphone and the doctor didn't seem to have any concerns about her long-term prognosis. The "polyph" actually turns out to be a thickening of the gallbladder wall, consistent with stones and cholesterol. I'll update here if we get any new information. Thanks for reading and for all the encouraging comments, both here and on Facebook.
Tuesday, February 18, 2014
On The Inside
Being in the hospital for a week isn't all bad. I've been playing a lot of games, mixing some songs I've been working on at home, and catching up on my reading. Yesterday, my Valentine (Mark Foley) brought me sushi for lunch and hung out for a while until it started getting busy. We don't get to hang out just the two of us as much as we'd like, so it was really great to just chill out with him. I didn't take pictures because my phone keeps dying while looking for a cell signal and also sushi nom nom nom.
On the other hand, this has been a really tough visit so far. Friday, Christie started having what we thought were back spasms. Turns out (after a visit to the ER later that night) she was passing a kidney stone. In the process of examining her, they found a polyp in her gallbladder, which means she needs to have the organ removed, posthaste. She's having an MRI today and meeting with a surgeon tomorrow to discuss biopsy. Hopefully it's just a run-of-the-mill gallbladder problem. We're not yet sure how it's going to work out if they want to do the surgery this week. Though it needs to be done quickly, with me being in the hospital, the scheduling could get dicey. To make matters worse, she finally has an interview this week on the cardio unit where I stay, after six months of toughing it out in a difficult assignment on a medical/surgical floor. Hopefully that won't be jepordized in the mix.
As always, people from our awesome homeschool group and other friends are helping with the kids, the dog, the snow shoveling, and someone even took Christie to the grocery store and back the other day. We're so glad that we're not going through this craziness in Springfield, MA where we barely knew anyone. In all the uncertainty, it's comforting to be surrounded by people who jump in and help where it's needed.
As for me, several people were taken a back by my recovery room picture, but I'm only like that for a few hours. Once I'm on the cardiology ward, I'm up and around, walking, scrounging for food, and making a general nuisance of myself.
I can't remember, but I may have mentioned the food here isn't the greatest. In fact, I'd rather eat feet.
We decided after my last stay that we would freeze extra meals at home for my hospital stays. It relieves Christie of having to cook during such a busy week, and she brings me enough every few days that I'm not forced to eat whatever that is on my plate. I keep a little cooler in the room with real fruit drinks, yogurt and fruit, and some single serving meals to heat up.
The food situation poses other temptations that I'm slowly but surely giving into. I'm not allowed to leave the unit. That is a new rule instituted since some genius wandered down to the cafeteria and stepped on the cord to his swan catheter, effectively spurting blood all over the room and all the way back up to the unit. Tim Conway and Dan Akroyd would have been proud. I mean, the cafeteria probably has enough trouble keeping customers as it is without a Wes Craven floor show in the middle of lunch.
Yet, the patients take hope in the whispered rumors of a mysterious room where untold culinary wonders are locked away from those who would seek to plunder its treasures. Though heavily guarded, I was able to sneak a picture of the supposed location of this room.
Patients tell tales of ice cream, cold whole milk, endless cans of Ocean Spray juices and ginger ale, and sometimes, if the conditions are right, turkey sandwiches made from animals that were in fact actually turkeys to begin with. While the contents remain firmly in the realm of myth and legend, prophecies speak of One who will eventually breach the barrier and open the way for all to partake of the coveted bounty within. Until He comes, we wait.
Cabin fever sets in at times. Late at night I often open the door to the unit and stand in the hallway out of spite. It's empty - I obviously don't want to risk catching some nasty germ in a crowd and carrying it back into the cardio ward. But at night, it's quiet and peaceful out there and this small act of rebellion helps me make it through the week.
That's all for now. Much anxiety here about Christie's situation but hopefully we find something out tomorrow. I'll post here when we know.
 |
| The best window view from my unit. The window has a nice, wide windowsill and when it's not too cold, I like to sit up there and read. |
On the other hand, this has been a really tough visit so far. Friday, Christie started having what we thought were back spasms. Turns out (after a visit to the ER later that night) she was passing a kidney stone. In the process of examining her, they found a polyp in her gallbladder, which means she needs to have the organ removed, posthaste. She's having an MRI today and meeting with a surgeon tomorrow to discuss biopsy. Hopefully it's just a run-of-the-mill gallbladder problem. We're not yet sure how it's going to work out if they want to do the surgery this week. Though it needs to be done quickly, with me being in the hospital, the scheduling could get dicey. To make matters worse, she finally has an interview this week on the cardio unit where I stay, after six months of toughing it out in a difficult assignment on a medical/surgical floor. Hopefully that won't be jepordized in the mix.
As always, people from our awesome homeschool group and other friends are helping with the kids, the dog, the snow shoveling, and someone even took Christie to the grocery store and back the other day. We're so glad that we're not going through this craziness in Springfield, MA where we barely knew anyone. In all the uncertainty, it's comforting to be surrounded by people who jump in and help where it's needed.
As for me, several people were taken a back by my recovery room picture, but I'm only like that for a few hours. Once I'm on the cardiology ward, I'm up and around, walking, scrounging for food, and making a general nuisance of myself.
 | |
| Me and Dr. Doodaa. See? I'm not in a coma. He also got a new hat yesterday and thinks he looks very spiffy. |
 | |
| This is the menu you receive each day so you can select your meals. I will give you $100 right now if you can find a single item pictured down there in that kitchen. |
 |
| Great question. What IS on my plate? The CDC is supposed to be getting back to me on that soon. |
 |
| Blue ice keeps everything cold and the nurses help me change it out every day or so. |
Yet, the patients take hope in the whispered rumors of a mysterious room where untold culinary wonders are locked away from those who would seek to plunder its treasures. Though heavily guarded, I was able to sneak a picture of the supposed location of this room.
 |
| Forgive the blurriness, I had to act swiftly as the |
Cabin fever sets in at times. Late at night I often open the door to the unit and stand in the hallway out of spite. It's empty - I obviously don't want to risk catching some nasty germ in a crowd and carrying it back into the cardio ward. But at night, it's quiet and peaceful out there and this small act of rebellion helps me make it through the week.
 |
| It's like a portal to another world. See the lights shining beyond? Can you hear the angelic music? |
Subscribe to:
Posts (Atom)