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.