How Are You Doing? (Redux - The Morning Edition)

Much of my little corner of the web has been used to explain UNOS policies to the uninitiated. Patients like myself have a strong love/hate relationship with the United Network For Organ Sharing. On the one hand, they keep organ transplants and donations from devolving into an income based system whereby the wealthiest or most influential are able to buy organs out from under patients in greater need (with the exception of Dick Cheney who was able to procure the heart of Satan himself without contest, because no one else wanted it).

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.

But they'll want to come again - maybe next week, maybe the week after. They have to do this because it's their job. But they don't actually do anything to address the problems you have. In the end, it's really nothing more than an imposition and a waste of your time, but they must do it - if they don't, the property value of the house drops (Google: Healthcare Facilities re: Magnet Status). They need to keep that from happening, without really improving the quality or living conditions of the house. You're just a tool to help them do that. You can (as I have) put another sign on the door informing all visitors that they need permission from your escort before they can enter your room. You quickly become astounded at the illiteracy rate of the people living in your house. Now - make sure that each day, you point this sign out to your escort (because it may be a new person every day) so they will keep these intrusions to a minimum. But remember there will be times in the privacy of your bedroom when you're changing clothes, peeing in your jug, having a private or intense conversation with a loved one (you may die tomorrow, by the way, so understand my full-meaning when I use the adjective "intense"), or just having a good cry. If your escort is away helping one of their other charges, not watching your room, people will just (to be continued tomorrow)

The Story So Far

I know there are some new readers (HCMA Holla!) and there are a lot of old posts to wade through. It's probably an opportune moment for a timeline, while new readers catch up on old posts. When I say "timeline" it likely conjures up images a nice, tidy, short, linear graphic with three word phrases at various intervals to denote significant events. My timeline is more like a drawing scrawled in crayon by a blind meth-fiend struggling to find his seat-belt in the middle of an ill-advised roller coaster ride. Shall we begin?

May, 1990, Memphis, TN, 19 yrs. old - Struggling through a music performance degree, I awake in my dorm room one morning to intense chest pain, nausea, and disorientation. I had to skip my morning class, but knowing I was going to vomit, literally crawled down the long hallway to the dorm bathroom. I vomit twice on the way, and uncontrollably once I reach a toilet. I have no idea what's happening. My roommate all but carries me to the college clinic where a nurse (without a any testing) diagnoses me with mononucleosis. I don't leave the bed for three days except for the bathroom. My roommate graciously brings me soup from the cafeteria and I effectively manage to fail my most important class - music theory, by missing nearly two weeks of class including the review for the final. I know now that I had no signs of mono, but it was going around and the nurse made a lazy diagnosis. It was the first progression of my HCM, but with no family history, heart disease is the furthest thing from my 19 year old mind. The HCM goes back into hiding. I drop out of college and return home to Little Rock where I get married and spend the next eight years building a life and business, and playing music anywhere and anytime I can.

Spring 1998, Little Rock, AR, 27 yrs. old - After a nine month hell of exams, tests, and unnecessary medications administered by ENT's, Pulmonologists, Endocrinologists, Gastroenterologists, Cardiologists, and Neurologists, I been told it's possible I have chronic GURD (true), lung failure, HIV, stomach cancer, Gallstones, and finally "IIHS" - which I learn a few years later is actually called HCM. I'm told I have six months to live if the disease continues to progress. We sell our business at a loss (and subsequently become unemployed), lose our home, and move in with my in-laws, two hours away from all of our current friends and commitments while we circle the wagons and try to figure out how to pay $1100 a month for prescriptions. Being self-employed, our very expensive health insurance didn't cover pharmacy costs - we couldn't afford it. It took two years from this point to obtain Disability Compensation. Over the course of three years, we were able to recover some of our previous life, and though I felt sick most of the time, life returned to as normal as could be expected. By 2001 we'd had a son (after being told we couldn't - and knew that was probably best due to HCM being congenital).

May, 2003 - Little Rock, AR, 32 yrs. old - we are befriended by a young woman at church who it turns out has the same heart disease. "IIHS" "HOCM" we say. "HCM" she says. "Google it." We do. Boom! Google returns links for the HCMA, we meet Lisa Salberg, and eventually fly to the HCM clinic in Boston to meet with Dr. Maron and company. Medications are adjusted. HCM is dormant. Nothing to do now except hope it doesn't ever progress again.

September 2009, Bentonville, AR, 38 yrs. old -  My wife becomes an RN, largely so she can help to navigate this disease that no cardiologist in our part of the country seems to know anything about. Despite a healthy diet and low impact workouts, I start inexplicably gaining weight. By Christmas I'm a full 35 pounds heavier and feeling so awful I can barely get out of bed. By this time we've had our second son (again, after being told we couldn't conceive), who is now 4 yrs. old.

February 2010, Bentonville, AR -  39 yrs. old - My cardiologist recommends that I go back to the HCM clinic in Boston to see Dr. Maron. A test has shown a "shadow" on my heart and he doesn't know what it is. Or does, but doesn't want to tell me. He forwards the result of my recent MRI to the clinic at Tufts.

March 2010, Boston, MA - A  trip to Boston confirms without a doubt that my HCM has progressed aggressively in a matter of months. Dr Maron informs me I'll need a transplant, and worries that if the disease continues to progress at this rate, I'll be dead in six months. I've been unable to find an HCM specialist in Arkansas and trust Dr. Maron to keep me alive until I can get listed and transplanted. We return home, agonizing over how to break this news to parents, in-laws, and most of all our oldest son, Rich, who is only 9 at the time. We'd told them all before the trip that we planned to look at apartments in Boston but what was intended as a casual info gathering excursion suddenly turns into an exhausting and frantic two-day search for a place to live so we can relocate as soon as possible.

July 2010, Fayettville, AR - We move to a small apartment in view of having to downsize if we're to survive in the very expensive Boston economy. In the meantime, we find an HCM clinic in St. Louis that may save us from the move to Boston. Nursing wages are abysmal and cost of living is nearly twice our current expenses. Not sure what to do. Phone conversations with heart clinics in Memphis, Dallas, Houston, and Tulsa make it apparent that there is nowhere in reasonable driving distance where I can be successfully listed and eventually transplanted. I'm laughed at by several cardiologists for even suggesting that an HCM patient should be transplanted, despite the glaring evidence of the MRI comparisons and cardiac output numbers from the previous spring. Ignorant morons.

July- November 2010, Fayettville/St. Louis - Five trips to the supposed HCM clinic in St. Louis where the cardiologist tells me I'll never need a transplant, and refuses to even look at the MRI's. The transplant doctor, however, is willing to list me but as the months go by, it becomes clear that she has no plan or idea how to navigate the complicated and restrictive UNOS policies to actually list and transplant an HCM patient. A VO2 test says my heart will survive another five years, which is somewhat meaningless since HCM turns itself on and off of its own volition. Fortunately, mine stops progressing shortly after returning from Boston, buying us an unknown amount of time to figure out what to do. In the end we're out nearly $9,000 over the five months between hotels, food, gas, and lost wages, all for naught. I briefly consider a career in the meth/amphetamine industry after watching too many Breaking Bad episodes. Just kidding. Kind of.

December 2010, Fayetteville - Christie is unable to even apply for an RN job in Boston. There were record-breaking masses of RNs that graduated the previous spring thus flooding the job market. Even schools that had paid for student's education in exchange for 1-2 year employment commitments are now forced to release them from their contracts so they can seek employment in Maine and Rhode Island. Some find jobs, but many remain unemployed.

January 2011, Fayetteville - 40 yrs. old - We decide the only way Christie will ever land a job close enough to Boston is to take a travel position and request assignments in the Northeast U.S. corridor. I can be listed at Tufts if I live within four hours of the facility. There's more than one way to skin a UNOS policy.

February 2011, Hershey, PA - Our first of several three month assignments after tearful goodbyes, moving out of the apartment and storing our furniture during an epic snowstorm (Yes, I drove a 28 ft. U-haul truck in the ice. Yes I'm awesome) - we'd planned to transport it all back to Little Rock, three hours away, and store it near our parents, but the snow forced us into Plan B; store everything in Bentonville, and figure out the rest later. More tearful goodbyes and we were on the road to PA with only what we could fit in our Honda Odyssey. It feels like an adventure, but a forced one. (which, by the way, is also chronicled at our sister blog, The Gypsy Schoolhouse). The company provides a nice furnished apartment and we set about exploring the area, making friends in the local homeschool group, and planning our next move.

June 2011, Danville, PA - After several trips to Tufts in Boston we realize we'll have to move closer to begin the listing process. Travel contracts wax and wane and we're stuck with an assignment three hours north in a dying coal-mining town. The accommodations are miserable but the hospital is great and we can still drive back to Hershey to spend time with friends we've made.

July 2011, Danville, PA - My first experience with A-Fib. Returning home from a trip to Gettysburg, A-Fib hits me like a truck. Christie has already left for work (night shift) and I'm alone with the boys. Phone reception is non-existent in Danville, but luckily, I'm able to Skype my parents who just happen to be visiting on their way through to see friends in northern PA. They rush me to the hospital where I'm cardioverted and sent home the next morning, hoping it won't happen again. Fat chance.

August 2011, Little Rock, AR - A nice contract back near our hometowns where we get to spend the fall and the holidays with family and friends before leaving for the Northwest permanently. My family helps us move our furniture from the emergency storage three hours north in Bentonville, to my in-law's storage building in Searcy, AR, about an hour from Little Rock. It will stay there until we find a permanent home in the Northeast.

January 1st, 2012, Lebanon, NH - 41 yrs. old - After spending a few days with friends near Hershey, we arrive in New Hampshire, hopeful that we'll find a permanent home there. Christie is working on contract at Dartmouth, and Boston is an hour and a half away. Upon arrival we unpack that van and set out for dinner when A-Fib strikes again. We spend the night cramped and exhausted in my tiny ER room, Christie and kids sleeping in metal folding chairs. So far, the worst moment of my entire life. I'm cardioverted the following morning, stuck in a room on the heart ward and forgotten. After threatening to leave AMA, the doctor wants to aggressively diurese me (read: Kill me. Permanently.) because of all the fluid I'm retaining. I refuse and am discharged. I have A-fib three more times over the following weeks with the same results and misery. The next trip to Tufts I'm started on an Amiodarone regimen to control the A-Fib, but we all know it's a band-aid. My heart is failing. I complete the tests for being listed. Now we wait.

April 2012, Norwalk, CT - Having loved our time in NH (A-Fib aside) we take the next contract in CT. Dartmouth offers Christie a full-time job the day before we drive out, but she's already signed the next contract. Bummer. CT turns out to be the most miserable three months we've ever endured. Christie is working 12 hour day shifts for three months with no more than two days in a row off the entire time (we're used to four). We only have the one vehicle, effectively trapping the boys and myself in the apartment every day for three months. We manage a few day trips to New York and I make it back to Boston for a clinic visit, but we never really get to experience or see much in the area - the main thing making all this homelessness tolerable. Great restaurants though. My coordinator calls to inform me that I'm officially listed for transplant. Mixed feelings, unsettling dreams.

July 2012, Springfield, MA - Finally, a contract in Massachusetts, an hour and a half from Boston. Listed. We're not in love with the city, but the job is good and the nursing wage more than balances the increased cost of living. We decide to come off the road when Christie is offered a job at Bay State hospital in Springfield. She signs a year contract, we sign a one year lease on a house, and get the dog we've been promising the boys when we stopped travelling.

October 2012, Springfield, MA - It's nice to feel like we have a "home," though homeschooling is virtually non-existent (MA public schools are the best in the nation). Not making many friends but I join a progressive metal band as the vocalist, mainly for the challenge. We record a five song demo and gain interest from Gene Simmon's (KISS) regional record and distribution label, and get significant regional airplay Christie's parents load up our furniture and bring it to us from Arkansas so we can set up a real household. Still going back and forth to Boston for clinic checkups.

February 2013, Valentine's Day, 42 yrs. old - Springfield/Boston MA - after feeling somewhat sidelined due to my blood type and low priority on the waiting list, I'm informed by my transplant doctor at Tufts that there has been such an increase in need and decrease in donor organs that some people have been living in the heart failure unit for fourteen months or better, and the chances of me moving up the list before I'm in trouble are pretty much zero at this point. But it's okay, he tells us. Since Christie's a travel nurse, I can just get re-listed somewhere else with a sparser population, increasing my chances of getting a heart. I refrain from strangling the man, since we'd made commitments and made our home in Springfield to be near Tufts. He recommends North Carolina (where I wouldn't want to live were it literally the last place in the universe sustaining human life - all due respect to North Carolinians, but surely you've watched the news lately. And by "lately" I mean the last ten years), California, and a few other places where he doesn't know they won't list Hypertrophs (he's a transplant guy, not an HCM guy). We eat lunch at a nearby oyster bar, too stunned to taste the food, and once again wonder what to do. At home we methodically crunch data on the UNOS and OPTN website to find hospitals that have transplanted HCM patients successfully, how often, and how long the wait times average. The obvious choices are at the top of that data filtering - The Cleveland Clinic (owing to the famed Dr. Lever's excellent HCM work there), Tufts, of course, California, etc. About third on the list we're stunned to see Penn State Hershey Medical Center - the very same hospital Christie worked at on our first travel nursing contract. Though not listed with the HCMA, apparently a Dr. Popjes in their cardiac group specializes in Hypertrophy, and even has a family history of the disease himself. It was our last trip to Boston and we calculate that all told we'd spent roughly $20,000 in the preceding year on hotels near Tufts, gas, food, taxis, Charlie T-passes, outrageous parking fees, lost wages, and related expenses. Mostly for naught. Credit cards are maxed out and our youngest, Brennan falls apart when he learns we will have to move yet again.

March 2013, Springfield, MA/Hershey, PA - After some phone calls to our friend Lisa Salberg at the HCMA, and conversations with a few of the HCM patients who'd been treated and transplanted there, we made a trip back to PA to talk to the Dean of the cardiology school, Dr. Davis. He's the most brilliant man I've ever met. We leave the hospital confident that the program there will work because they have a very pro-active plan to allow Hypertrophs equal footing with other transplant candidates, as well as a solid history of treating them while waiting. Between March and July we make three more six hour trips to the Hershey area for doctor appointments, Christie's job interview, and house hunting. We want to rent but find it impossible to obtain something in our price range, close to the hospital that both meets my physical needs and allows the dog that we now have because we thought we were settled. We were able to stay with friends one of those times, but expenses, hotels, and lost wages hover somewhere in the  $3-4000 range. Load up the credit cards again.

Late May, 2013, Hershey, PA - On our second such trip, we find a home we love, with a few fixer-upper issues that we can deal with (Chip? Joanna? New Discover card?). It's perfect for our price range and our family. We make an offer through our realtor and head back to Springfield, confident we've found the right place and relieved that we'll have plenty of time to arrange the move.

Early June, 2013- Springfield, MA - Our realtor calls with bad news. The house, is incorrectly listed as being on the market, but is actually in short sale with a local bank. It could take years for anyone to consider our offer, and just as long to settle, since banks aren't typically in a hurry to sell re-possessed property. We're now in a very stressful position since a) Christie has accepted a job at Hershey Med that she MUST start on July 5th in order to orient on their schedule - or she can't begin until October, b) she's given her resignation at her current job effective on July 3rd, because she can't miss even a week of work - we're broke from all the trips back and forth and need our meager savings for a down payment on a house (which is why we wanted to rent!), and c) our landlord, having graciously released us from our lease agreement due to the circumstance, has a new tenant moving in on July 5th - two days after we're supposed to vacate. We frantically rush back to Hershey and decide to buy the very last house our realtor shows us, but can only spend fifteen minutes looking at it since we have to rush back so Christie doesn't miss work. Oh. And all these trips are happening with a dog who gets car sick just looking at a car. Fun times.

June-July, 2013 - Springfield, MA - Our offer is accepted but our lender, FHA (administrated by Satan, apparently) asks for a long list of unnecessary, ridiculous "repairs" to the house. Between dealing with these and the incompetence of our lending officer, I spend (literally - not figuratively - literally) ten of the next fourteen days on the phone and filling out paperwork from about 9 A.M. to around 7 P.M. Every. Stinking. Day. Remember how stress is really bad for heart failure? Yeah. Me too. After the hell of negotiating "repair" expenses with the seller, scraping and clawing to make the closing and move-in dates work with our incredibly narrow window, and jumping through inane hoops with FHA, we finally get everything settled. Until a week before closing, when FHA announces that they want the entire exterior of the house re-painted. We're quickly approaching July 4th weekend. Another 2-3 days on the phone desperately trying to find a paint crew willing to work that fast and on a weekend. No dice. In much distress, we have to withdraw from the sale, but wait! The seller comes to the rescue, rounds up a bunch of friends and they get the painting done (with interior paint, as we learned after moving in). There were a hundred other twists and turns to this part of the story, but it's boring. I'll just say - live in a cardboard box before taking a home loan with FHA. They will steal your soul. Everything eventually works, we close on the 5th, Christie starts her job, and we hope this is the last time we have to move. We discover several problems with the house that prove extremely expensive to fix, but we're still kind of stuck with it until life returns to normal.

October 2013 - Hershey, PA, - My accumulated time on the list in the Boston zone is transferred to the PA zone. Dr. Popjes launches his plan to get me a fair shot on the waiting list. I'll be admitted for a swans cath and observation every 6 weeks. I'll stay on the HVIC unit for 1-2 weeks at a time, during which I'll be accumulating precious time as a 1A patient, and who knows, maybe something crazy will happen and a heart will become available while I'm there. Since I'm only a status 2 at home, this increases my chances of moving up the list.  I'll have to be placed on inotropic medications via IV - these drugs are contra-indicated for HCM patients, but UNOS will not honor my admission as 1A time unless I do this. It's one of the many nonsensical and dangerous boxes we have to check in order for me to qualify for transplant - but it's one of the things HCM patients have to do since the requirements only accommodate people with more general heart failure (meaning, most people who need transplant). The inotropes make me sick, as expected, and we all hate not being together, but it must be done. A few months later, we meet Perry Jenkins, an 18 year old guy, living in the HVIC with a Total Artificial Heart (TAH) because his HCM progressed to the point that his own heart had to be replaced. We hit it off, spend a lot of time in his room between my admissions cooking, eating, playing board games, watching movies, and so forth. He becomes like a big brother to the boys, and becomes my own personal Yoda.

Late June, 2015 - Hershey PA, 44 yrs. old - After about a year and a half of these hospital stays, my A-Fib returns, as we knew it would. I have two more cardio-versions and an ablation to burn out the nodes in my heart that are causing the electrical issues. It's the second most miserable experience of my life, as I spend the following two weeks sitting in a chair, grasping the arms with white knuckles, wondering if astral projection really works because I would do anything to escape the searing pain in my chest. No amount of pain medicine seems to help but it eventually goes away. During my next swans cath admission, Dr. Silber, one of my cardiologists expresses grave concern about my condition. According to my lab work, my liver and kidneys are on the verge of total failure, and it seems doubtful that the ablation fixed the A-Fib, which will likely pop up again in another spot. He recommends emplacement of a TAH, with transfer to the "Freedom Driver" - a portable pump that will allow me to go home when I'm stable. After long conversations with Perry, Dr. Maron at Tufts, Lisa Salberg at the HCMA (who in turn contacts the Cleveland Clinic), and much research, this seems like my best, and possibly only option to not end up with multiple organ failure and being dropped from the waiting list altogether. I schedule the procedure for August, after Rich's birthday. The deadline for Christie to start back to school for her BSN has arrived. Given the situation, she appeals to everyone possible for an extension until after my transplant. Hershey Med Center denies it and threatens termination if she doesn't honor the start date in her contract. I conclude that the Powers That Be are evil and vindictive and I want to burn the building down. But I have children to think of.

Early July, 2015 - Perry calls at 7 am to say he's getting a heart. We rush to the hospital to see him before the procedure, take the kids back home, and spend the rest of the day in the waiting room. The surgery starts late and goes on far longer than it should. The same surgeon who will be implanting my TAH comes out to inform us that they're still working on him and he is "very sick." Christie and I recognize this as surgeon code for "he may not survive the surgery." Hours later we learn that he's been moved to a room on the HVICU, but there's a team of docs and nurses still working on him. We have to go home, but this apparently goes on until the following day when we return to see the surgeon still making trips back and forth to his room. It seems that there was a very unusual and violent anti-body problem with the blood transfusions he received in surgery. He's in liver, kidney, and lung failure, and we can't learn anything about the health of the new heart, due to HIPPA privacy regulations. Eventually, we get permission from his family to see him, and learn from them that although the heart seems to be fine, he's in grave danger from the other issues. We try to prepare the boys since it's looking more and more like he may not survive. Nightmarish.

August - December, 2015 - Perry wakes up a few weeks before my surgery, but is extremely sick - yellow, atrophied, and fighting for his life. He can't talk much. I undergo heart removal and TAH emplacement, and see him a few times during my record six week recovery. I go home, Perry stays. I have some coagulation issues requiring me to be re-admitted for a week. Back home again, we start to grapple with the problem of being one of the only people in the nation living at home with a TAH, and discover that there's no system in place for such a thing. Christie spends a LOT of time figuring out how and where to do blood draws and dealing with the logistics of (surprise!) 3-4 trips a week to the hospital for coagulation checks, labs, etc. Insurance doesn't cover enough of home health care costs for us to use regularly. Sometimes she works 12 hours overnight, comes home, showers, loads all my backup equipment and drives the 25 minutes back to the hospital (TAH patients aren't allowed to drive). We normally get home around 1pm and she gets a 3-4 hour nap before waking up to eat and go back to work. This goes on for months. my aunt comes to stay for several weeks, but once she goes home, we need an adult in the house while Christie works. A few friends who were trained at the hospital on the pump, volunteer to spend those nights with me and the boys. The help is unbelievably generous and we are humbled. The loss of privacy is unbearable and we are unsure what to do. Conversations about the ramifications of leaving me home overnight with just the boys ensue - they're trained on the equipment, better than anyone, and pay very close attention. I trust them implicitly but lose many nights of sleep agonizing about the option of putting this burden on them. After many tears, much talking, and realizing our kids are way smarter and more practical than Christie and I combined, we decide to give it a shot. It works great - some degree of normalcy returns to the household, the boys and I get our time together back, and we also begin to set up rides to the hospital so Christie can get a reasonable amount of sleep. Perry meanwhile has finished rehab and gone home, only to return to the HVIC the day after Christmas because he feels sick and is coughing up blood.

January 16th, 2016 - 45 yrs. old - I feel great the rest of 2015. We want to move a little further east in the spring or fall, due to Christie possibly taking a much better paying, less stressful job at a hospital in that direction. We learn that Perry has been diagnosed with lymphoma, which spreads aggressively to his lungs and other organs. He's placed on a ventilator and is receiving round the clock blood transfusions.While painting some trim in our sun room the morning of the 16th, stuff happened (detailed in the last post). Two days after admission to the hospital, Christie receives a call offering her the job. She has to turn it down since it will put her nearly two hours from me. Perry finally passes away on January 31st. I think we've yet to fully process his absence. I end up in the room he spent many months in while living here on the HVIC. The lights flicker from time to time, and the motion sensor sink turns itself on occasionally. I think it's him, just messing with me, but by way of revenge I'm finishing off the huge box of Flavor Ice Popsicles he left in the patient freezer. I talk to him a lot some days. I miss him desperately; we all need him so much right now. I shake my fist at the sky.

February-March, 2016 - I didn't mention it in the last post but during my stay, Christie has completed a six week orientation course complete with bi-weekly discussions, papers, reading, etc. I could digress into a diatribe about how the glaring insecurity of nursing unions and organizations, along with the greed of corporate healthcare has culminated in a needy and ill-conceived plan to change society's perception of nursing as a just " a job" to that of a "professional" career field, thus forcing experienced nurses into expensive and unnecessary degree programs that do nothing to solve actual point-of care problems or provide hands-on experience, all for the purpose of obtaining a so called "Magnet" (or some similar) status for the facility in question, which ultimately means jack squat to the patient who just wants an experienced nurse that knows what she's doing regardless of her degree or test scores, instead of one with a doctorate who's too busy trying to finish homework and write papers to give said patient his/her undivided attention, which would actually contribute to greater patient satisfaction and outcomes as well as a more stable and content work environment, thus negating the need causing the insanity I've mentioned above. But I won't get into that here.

April, 2016 - Still waiting.

And that brings us to now. Or rather to the last post. So really, this post goes back while the last one moves forward. Maybe I should change the order. Is there even a way to do that? I'm so confused. Does anyone have a flux capacitor?

So A Few Things Have Happened...

I know I've not posted since Perry passed away. There are several reasons for this.

Firstly, I needed a little time to process, and I was so frustrated that every time I tried to write something, it came out angry and sounding very woe-is-me. This being the antithesis of Perry's personality, I couldn't bring myself to follow up my last entry with such a post.

Secondly, as some of you know, I'm an aspiring writer/novelist (Isn't everyone these days?). In January I received serious interest in one of my manuscripts from a great New York literary agency. They ultimately passed due to timing conflicts with their 2016 list. They, along with another great agency in Conneticut, have asked to see one of my other manuscripts, pending a re-write to expand the length. For those of you who aren't familiar with the publishing world, the process goes like this: 1) spend a long time writing a book you're pretty sure no one will ever read, 2) get it perfect - manuscripts these days have to be near ready to publish when you submit them, 3) find a literary agent who agrees to represent you/your book to the publishing editors with whom they have an established relationship (book publishers/editors no longer accept unsolicited manuscripts - they MUST be submitted through a trusted lit agent) 4) re-write the book to the lit agent's standards, 5) hold your breath while they pitch the book to various publishers until someone buys it, 6) sit back, collect fat bank, and become the next Stephen King. Okay the last one is not true, but writers are usually dreamers as well. I've literally been working on this book pretty much all day every day since January, because as other writers know, once you get any kind of serious interest from a literary agent, you feel like you've won the lottery, and you want to make your book the best it can possibly be so you don't blow the opportunity. So I've purposely set all other projects and blog updates aside to get my book where it needs to be. What book? Which book? you may ask. I'm not telling. You'll have to click the website link in the sidebar and go to my new website to figure it out. No, I'm not above coercing people to create site traffic. Either way, I needed a break from the book today, so I'm composing several blog posts that I'll publish this week to catch everyone up on health stuff.

Thirdly. Health stuff - which will comprise the bulk of this post. Most of you are aware by now that I was admitted to the hospital on January 16th, the day before my birthday. I'd spent the morning touching up some of the paint trim in our sun room - this was not physically intensive labor, just standing, painting small strips of trim with an artist's brush. I'd not felt ill or bad, in fact, I've felt the best I have in years during the months between September and January when I went home with the TAH. As I was painting, the world started shaking up and down - like being on a trampoline. Everything was spinning and I couldn't take a step for fear of falling because the floor was shifting around. I was instantly sick to my stomach. Fortunately, there was a bench within reach so I sat down and yelled for Brennan to wake Christie. I began to dry heave uncontrollably as the room kept spinning. Closing my eyes heightened the sensation. Weird thing is, none of my heart pump alarms were going off - in fact, all the numbers were completely normal. I thought something had malfunctioned but the pump seemed fine. I was so dizzy, Christie had to call 911 for an ambulance while the boys hurriedly ran around collecting my spare bags and equipment.

The paramedics had to bodily lift me onto the stretcher. On the ambulance ride, Rich calmly fielded about two dozen questions from the paramedics, explaining the pump and device to them, answering questions about my medications and medicine allergies, and helping them establish a frame for my base vital numbers. I was blown away that he knew all this, but the kid pays attention to everything. I mean EVERYTHING. With Christie and Brennan following in the car, I was rushed to the ER while the nurses looked on, probably thinking, "Oh God, a TAH patient. I hope I don't get assigned to him." Even medical people are scared of the thing. After a volley of tests, blood cultures, x-rays, and CT scans, it was concluded that....nothing was wrong. This is particularly scary because I was obviously reacting to something and not knowing what leaves a looming question mark as to whether it will happen again, and how to prevent it. In retrospect, I was probably severely dehydrated, as I've has some smaller episodes of the same thing since I've been admitted, and it usually has to do with me being too dry.

The docs were willing to discharge me after a few nights of observation provided I remained stable. I did. But the conversations soon drifted to the possibility of me being able to simply be admitted indefinitely to the HVIC unit. Being in the hospital raises my status on the waiting list to the coveted 1A position. At this point, I've accumulated enough hospital time that I'm told my name is popping up every time there's an O+ heart available in our region - they've rejected the offers because of age, questionable drug history, etc. But when I'm in the hospital, I'm as close to transplant as a person can be. At home, the UNOS (Organ procurement organization) considers me to be a 1B status. At that status, my name drops down into the hundreds on the wait list. As an O+ blood type, the chances of me ever getting called up for transplant from home are about the same as a Beatles reunion - nill.

A hospital isn't a hotel. Insurance will not allow me to check in and out at will. But if I'm admitted for a legitimate reason, they will pay for me to stay indefinitely since I have an implanted device that needs to be monitored. As you can imagine, our family agonized for a few days over our options - go home as a 1B, enjoy life as much as possible, and put off transplant until it might possibly be too late. Or stay in the hospital as a 1A, sacrificing time together for months, and get a transplant sooner. The obvious choice is to get transplanted as soon as possible. But if you've been keeping up here on my blog, you know that I've reminded everyone many times that a heart transplant isn't the silver bullet. There is a real possibility that I would not survive the surgery. Or sustain a brain-damaging stroke while in surgery. Or reject the implanted organ for a number of reasons. I'm an otherwise healthy guy, in the demographic with the best survival rates, but those other factors weigh heavily on my mind when choosing to spend what could potentially be my last days on this earth separated from Christie, Rich, and Brennan. As usual, we decided to do the hard, but sensible thing, instead of the easy, emotionally driven thing, in all hope that this story has a happy ending.

It didn't help that Perry passed away after I'd been here for two weeks. Though his new heart was perfectly healthy, the immuno-suppressant drugs every transplant recipient has to take in the months following surgery, opened the gates for the cancer cells already lurking in his body to rear their ugly heads. The bad thing about the human body, is it's really hard to know what's lurking there until you suppress the immune system and invite everything out into the open. It really does make a person question the whole idea of Intelligent Design. Intelligent? Really? My own body wants to kill me 74 different ways. If this is the best version of an intelligent design, I'd hate to see what an Un-intelligent Design would look like! Perry didn't die from a heart problem - he fought through that and got it fixed. But the cancer was ultimately the result of the transplant. None of us needed to be witness to that when I'm on the same path, not to mention the horror of losing him in that way. It only amplified the perpetual state of stress and anxiety our family is fighting off daily.

This is getting long, so I'll write more later. Just so everyone knows, I've been living in the hospital since January 16th (over three months) and no one knows how long the wait will be. We plan for me to be here until this is over, one way or another. It's been 17 years since I was diagnosed, 6 since we started trying to get me on a transplant list, 4 on the list, and 2.5 years in and out of the hospital for swans caths, cardioversions, ablations, TAH impant, and now the wait. But at least it's coming to a head and there will hopefully be some type of resolution soon.