On the other hand, this leveling of the playing field, as it's viewed, works for most people, while leaving those with less common types of heart failure, such as HCM, on very uneven footing. Thier policies accommodate general congestive heart failure very well. But HCM patients in need of a heart are forced to undergo treatments and drug therapies that are not only un-needed, but often contra-indicated, so that they can meet the UNOS criteria for transplant. We've been jumping through those hoops for four years and this has been without question the single most challenging and frustrating part of this whole journey. It's forced our family to re-locate numerous times, not to mention forced us to spend time apart from one another - the last thing a family wants to do when there's a risky surgery on the horizon to begin with.
My current situation is a direct result of ill-fitting and short-sighted UNOS policies. I've been implanted with an artificial heart and placed on a portable driver for the express purpose of being able to live as normal a life as possible at home with my family while awaiting transplant. Yet, because of UNOS policies, my place on the waiting list drops down into the hundreds when I go home (what's currently known as a Status 2 listing). As long I stay admitted to the hospital, I am listed as a 1A patient, and my name rides the very top of the waiting list for O+ hearts. Due to my accumulated time here as a 1A for the last 2.5 years (spending 2 weeks at a time every 6 weeks with a swans cath on IV drugs I didn't need), my name shows up a lot when the facility gets offers - though so far, none of them have been good. So regardless of the fact that I would be safer from infection at home, as well as more closely watched and listened to (in case something went wrong with my heart driver), here I sit, an otherwise healthy, ambulatory, independent 45 year old with a family that can only be together about twice a week. The fact that I literally have no heart is irrelevant to UNOS. To their 1+1=3 way of thinking, I'm healthy enough to live at home, therefore, my need is less urgent than someone living in the hospital. Period. Though there is some recognition on the part of UNOS that this makes no sense, a forth-coming policy change from UNOS is about as likely as Sarah Palin being able to string two coherent sentences together in the English language. So it's about saying NO MORE because they don't want us to know with the people because hearts being needed for some who just can't handle the truth for all the sick, flick your bic, is that an icepick, dontcha know?
Huh?
It's really hard to answer the question, "So, how are you doing?" It's quite a loaded question. You can imagine the abiding frustration of the situation, just because of this whole UNOS inanity. But living in an ICU ward as an independent, functioning, technically "non-sick" person is enough to drive anyone mad after a time. I've tried to think of the best way to describe what it's like, but if you've never been hospitalized for any length of time, I imagine it's difficult to grasp. Let me relate this to normal life as much as possible, and maybe it will provide some insight.
It's imperative to me that my readers understand that I'm relaying all of the information on this blog as honestly as I can because I know that one of you might experience some of this in the future. That said, it reads like I'm whining. Which is the last thing I want to do, or be perceived as doing. The situation I'm in obviously elicits pity and sympathy from most people. I understand that. But in turn, please understand that I don't share these things for the sake of pity and sympathy. I'm a pragmatic person - pity and sympathy buy me nothing, and do nothing to change the situation. Therefore, I have no motive for complaining and whining to elicit these expressions of pity from anyone. I hope the relay of my experiences to the reader is received as intended - information, honest thoughts, reality.
Ready?
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You awake in your bed to find someone drawing blood from your left arm (now, I have a permanent line they can draw from, so I don't actually get a needle every morning). This person will be your escort today. You may not even know their name yet, maybe you've never seen them before in your life. You will interact with them roughly once per hour, and they will accompany you everywhere you go. You didn't pick them. They may not even be a nice or interesting person, certainly not someone you would seek a friendship with. Nevertheless, you're stuck with them for the next 12 hours, at which point they will be replaced by someone else you may or may not know. Rinse and repeat.
As you come to your senses - possibly from REM sleep because you stayed up late the night before - another group of 4-6 people enter your bedroom, a mix of acquaintances and strangers. One carries a small netbook. One of them begins peppering you with questions - how are you feeling? What was your weight yesterday? Did you poop? You don't wear pajamas to sleep but try to keep yourself covered the best you can as this person squeezes your ankles and wants a detailed look at your stomach (where my drive lines are), all in view of the group. Any response you give is quickly recorded by the guy with the netbook. This is all WHILE you're still laying in bed. Before coffee. Before you've had a chance to pee. The only way around this is to put a sign on your bedroom door warning everyone not to disturb you before such-and-such o'clock, and hope they honor the request. Once they leave, your escort wheels a huge scale into your room. Don't like being in your underwear in front of strangers? Sorry - you need to step on with as little clothing as possible. You can buy your own scale for your room, but you still have to weigh on this one at least once a week. Because UNOS.
This scenario potentially happens every morning - 7 days a week, but here's the catch. Those acquaintances? You never really get to know them, and you never get used to it because it's a different group of people each morning, save one or two. Good morning, sunshine!
You pee in a jug that you'll keep for your escort because they need to measure how much you do that each day. So yeah, you'll be peeing in that same jug all day, every day, and they'll record it each time. Then you take a shower - wait no. You can't take a shower. Let's say your shower is broken indefinitely - you have to bathe and wash your hair using the sink (I haven't really showered in 9 months because I can't get the PIC line in my arm, or the drive lines in my stomach wet). This kind of works, but you still feel manky and try to deal with it using powder and lotion. You're not done yet - take your own temperature and blood pressure, or let your escort do it. There are three numbers on the TAH read-out that have to be recorded. You'll be doing this roughly every four hours every day, whether you're in a meeting, the middle of a meal, television show, meal, phone conversation, while your eating, taking a nap, or mostly while you're trying to eat. Even though these numbers have been the same for four months, every single time, every four hours, for four months, you still have to do this. Because UNOS.
Time for first breakfast! A cocktail of nine pills, (most of them smell like roadkill) with water to drink. These will make you pee more, a real treat with the measuring jug (be sure to ask for hand sanitizer). Hungry yet? Yeah, you're starving. Time for second breakfast! You can have a tray delivered to your room. This morning it's scrambled liquid egg with a few chopped red peppers thrown in, diced potatoes, a fruit cup (like the kind you used to eat in third grade), a cardboard carton of skim milk (because whole milk apparently kills people instantly), and some unidentifiable liquid they claim is coffee. By the way, there is no seasoning on any of this - no salt, no pepper, no butter. You receive a small packet of pepper and Mrs. Dash. The meal smells like something the Donner party wouldn't touch. Be grateful - tomorrow is turkey bacon (last used to change the oil in someone's car) and microwave pancakes. This is breakfast. Every single morning. Unless you order something different. Kellogg's cereal? Fatty sausage patties with starchy biscuits? A fruit cup? (be sure to check each piece for bad spots, there will be many. And they're hard to see because by "fruit cup" I mean day old honeydew melon cubes).
But there's hope! Since you can walk, you could go down to your kitchen and choose your own breakfast. You're starving, but your escort has to repeat your morning ritual with one to two other people who can't move around as easily - they need help getting to the bathroom, and opening the little juice cups, cutting their pancakes, etc. So you wait. Sometimes you wait longer. Finally, your well-meaning and over-worked escort walks you down to your kitchen. You find pretty much the same options as offered on the tray. You're trying to eat as healthy as possible so if you manage to avoid the turkey bacon and greasy gravy and biscuits, you could have an omelet made from the chemical egg juice. Or maybe the yogurt. Yogurt's good for you, right? Which flavor would you like? Scooby-Doo Raspberry? Dulce de Leche with chocolate sprinkles? Ooo! How about Ghostbuster green apple! Where's the normal, healthy, unflavored yogurt, you ask. No one knows what you're talking about. There's desiccated fruit, or oatmeal. You could eat the oatmeal - that's good for you. Hope you like it A LOT because if you're going to eat healthy - it's oatmeal 7 days a week for you. Guess how quickly you'll get tired of oatmeal? I don't even want to type the word again.
You'll repeat this scenario at every meal, but also be aware that you can only eat $10 worth of food at each meal. Ever eaten anywhere but McDonald's or Taco Bell for $10? Keep in mind that whatever you choose, your escort will take note, because they are charged with your overall well-being. You do the best you can, but it's far from ideal nutrition (more on this later). You have to take the food back to your bedroom to eat (let's say for the sake of the example you live in a large house). By the time you get back, the food is cold. You can microwave it in a room down the hall, but some of the other people living in your house don't want you going in there - you have to get your escort to do it for you. Hopefully she doesn't get called away while you're waiting. Getting breakfast, even if everything goes smoothly, takes about 15-20 minutes front to back. Hope you're not a person who wakes up hungry, like me. It's been over an hour since you were woken up. You reflect on how your life has come to a point where you can't even control when you eat your own meals.
You finally sit down with your food, and another group enters your bedroom. I deliberately use the word "entered" because they didn't knock, they just entered. They want to ask you questions about the quality of your room, the color of the drapes, the friendliness of the acquaintances who wake you up each morning, etc. Because you're fool enough to believe that describing your morning to them will somehow make a difference in mornings to come, you actually answer their questions. They don't write any of this down, as your food gets cold once again. They thank you for your feedback, leave the room, clock out, go home, and don't remember your name or anything you said by the next day.
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