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?
No comments:
Post a Comment