Quick Update

Just a quick note to report a few things:

* I went into the ER Sunday morning again for Afib and was cardioverted (shocked) out of it again. Since this seems to be turning into a chronic thing, Dr. Link, my electrophysiologist at Tufts that I started seeing two weeks ago, started me on an anti-arrhythmic med called Amioderone. I'm taking a huge dose of it this week to get it built up in my system, then I'll take 1/6th of that next week and from now on. It initially caused some blood pressure problems, but we have that sorted out now.

*This Afib is certainly a symptom of my HCM/heart failure, but even without HCM, many people struggle with Afib and take medications for it. In the case of HCM patients ("hypertrophs"), Amioderone is really the only drug option. Afib is extremely hard to tolerate because of our limited oxygen reserves. It feels like having the wind knocked out of you and causes weakness and nausea. Hypertrophs have to be cardioverted out of it pretty quickly, not because it's necessarily dangerous, but because it's extremely uncomfortable. It's something that most hypertrophs deal with their whole lives, but is new for me, and to be expected because of my deteriorated heart muscle.

*Eventually, the Amioderone will not be able to control the Afib. At that point most hypertrophs either have an ablation procedure to "burn away" the area of the heart muscle where the Atrial Fibriliation originates. Some have pacemakers or other IDE devices implanted to help the heart stay in a steady sinus rhythm. These have never been options for me to help with the HCM, but if the Afib persists or comes back, that may be a solution as well. Obviously if I have a heart transplant before I reach that point, it's a non-issue.

*I cannot say enough good things about Tufts Cardiology department. I am working with three different doctors and a transplant coordinator to deal with these issues that come up, as well as the upcoming evaluation for transplant. I will meet with the transplant doctor to discuss testing on February 23rd. This team is part of a huge hospital staff, yet I am amazed at how well they communicate with one another. They always know what's going on, even if it isn't their department or job - I hardly ever tell them anything they don't already know from conferring with one another. That is a huge relief, and it gives us a great sense of security to know they are so diligent to keep up with even small changes (like the Afib). Details matter, and they really, really get that.

*Despite getting off to a rough start, I'm still very mobile and productive. I'm doing schoolwork with the boys, cooking, and even took them to a homeschool group field trip today. It's not too cold here yet, so I'm also able to go outside with them pretty often to let them sled or work on their igloo. I'm really tired sometimes, but otherwise I don't think my HCM has changed much since last year. My water weight/edema is the lowest it's been since this time last year. I'm eating well, sleeping pretty well, and generally enjoying life.  We have a long road ahead, but being nearer to my doctors has taken so much stress off of us, I don't even know how to express it. The support of family and friends is very uplifting, and I appreciate everyone's thoughts, prayers, and various expressions of concern. For those of you trying to inflict me with voodoo curses, I say again, voodoo is FAKE (you know who you are).

Thanks for reading.

All The Things You Leave Behind

Being chronically sick is a purifying fire of sorts. I don't know that we've ever been overly concerned with material things or "keeping up." I think the many years spent in ministry necessitated a lifestyle that was somewhat hand-to-mouth and therefore devoid of the concerns that come with "stuff." 

Of course, over the years, we've also accumulated Stuff, and all that Stuff had to be moved and stored somewhere because of our travelling and the need to fit into a small apartment for the foreseeable future. We got all our Stuff condensed down to fit into the space of a single car garage. Mostly furniture we didn't want to replace, and keepsakes from days gone by. But there's also my 200+ book collection and my 500+ CD collection, and other such things that could be considered frivolities. I may discover in the end that they're just more Stuff that I can do without. 

The things we've left behind are far more intangible than that though. When you're constantly dealing with fear of the ER, fear of new meds, fear for the future, you start to circle the wagons and there's very little that gets pulled into that circle with you. You haven't seen the newest movies. You aren't keeping up with all the TV shows you'd like to watch, and if you watch any at all, it's when they come out on DVD, Netflix, or Hulu, because then you can watch them when you want - you need as much control over your own schedule as possible, and television minus Tivo doesn't conform to that. Speaking of which, you don't see the point in paying for cable anymore, or anything else that many might consider "normal" expenses. You eat out more because everyone's exhausted, one person sick, the other one working. You used to be really conscious of eating healthy food, but find there's not enough time or energy to be fully consumed with that any more. You do the best you can.

You go from the house and van being Clean to being Clean Enough. You pay your taxes at the last minute because it's a distraction from doing more meaningful things. Any extra money goes not towards savings or investments, but toward warding off the most pressing hospital or clinic bill. You cut back everywhere else you can, but keep one or two things in the circle, like the internet and netflix subscriptions. You leave behind movie theaters and DVD/game/CD purchases instead. You buy things used or not at all. You don't care about matching dishes, sheets, curtains, clothes, picture frames...all that Stuff is temporal and a waste of attention that has to be spent just getting through the day. 

You also leave behind a lot of opinions too. I used to think I had everything figured out. There are still concrete things about which I have strong opinions. Things that I know that I know. Public school is training kids for a by-gone era. Van Halen deserves a solid comeback. Dick Cheney is a war criminal. I will argue these things to the death. But I don't know so much anymore about what people should and shouldn't believe, or if it's even any of my business, so long as they're not hurting anyone or breaking the laws we've all agreed on as a society. I don't know what the answers are for the medical industry, the tax laws, the waning interest in the classics. I used to have an opinion on all that. I was a pastor and people expected me to have an opinion on everything from the economy to stem cell research, and I had neither the education or energy to know much about any of it. I did my best. But when you're chronically ill, those things just don't matter anymore. You're more concerned about how much time you spent face to face with your kids today than how much time the public schools are spending on the three R's. Having a family meal together is more important than the fact that you just bought tomatoes shipped all the way from China while your local farmer goes out of business. It's not that you don't care at all, it's just that you only have the energy to care about a few things. The rest you leave behind. And that circle grows tighter the sicker you get. 

I realized we've been living in this ever tightening circle for almost 12 years. There have been moments of reaching out beyond it, trying to be keep up with the lives of friends and family, nieces and nephews, cousins. But the circle is only so big. You stop sending out Christmas cards - 7, 8 years ago? There's no energy left over after all the shopping, cooking, and travelling. Then the cooking has to go. You're only shopping online now, and there is little thoughtfulness to the gifts you give, only the determination to get through the whole season with a few good memories in tact for your kids to enjoy. 

Daily life is the same way. Schedules are at the mercy of nausea and sleeplessness. Circle the wagons - how long can we scrape by on leftovers because cooking is out of the question tonight? Blogging isn't a commitment, it happens when everything is spilling over and you've got to get it out of your head. Television and reading are often escapes rather than pleasures, but you're grateful for the distraction. You still know that they're not really important in the grand scheme. 

Now, all this may sound very dismal, but quite the contrary - it is freeing. I can't remember the last time I fretted over whether or not my toothbrush holder matched the wallpaper, or if the laundry was done exactly right. I'm not stressed about every ding and scratch on the van, just thankful that we have a working vehicle. There is no getting bogged down in the minutiae of consumerism and detail. Everything is big picture, everything rolls out before you in one long, unending line, and if it portends to have no relevance five years from now, it is not worth your time. It's the ultimate Carpe Diem, the seizing of today, the divorce from the tyranny of the urgent. It is terrifying and liberating all at once. I consider myself fortunate to have had such a shift of viewpoint at such a young age, because it has made a tangible difference in the decisions I make on a daily basis for many years now. I wouldn't wish it on anyone else because I also firmly believe that ignorance is bliss. But I also know that I will never be found guilty of taking anything for granted or wasting the day on trivial pursuits. I don't miss much of anything I've left behind. 

The Reality Of It All

We arrived in New Hampshire tired, excited, and hungry, and dying to get a first hand, twelve hour tour of the Dartmouth Medical Center ER. One of the above is not true.

Two hours after our arrival my heart jumped into atrial fibrilation. If you've never experienced this before, imagine someone parking a Wal-Mart truck on your chest and you're pretty close. Every step becomes an effort of supreme willpower, like you have 200lb weights around your ankles. For most HCM patients, the solution to this rather common problem is cardioversion, in which you are anesthetized for a few minutes, then shocked with paddles to get your heart back into a normal or "sinus" rhythm.

I enjoyed this so much, I decided to do it again two nights later. I won't bore you with the details of the procedure and the dangers of me being in the ER to begin with. What I want to emphasize here is how much this sucks, sucks, sucks for my family. I really don't want anyone's sympathy because this is my/our mountain to climb, it's no one's fault, and there are people who have it much worse. I know all this. But for me, I think the effect my HCM has on my family is the hardest part for me.

These two night in the ER had Christie and boys curled up in uncomfortable folding chairs trying to sleep while we waited long enough for the procedure to be safe. Christie and Rich already sick with head colds, after several weeks out of pocket, traveling, not being able to have our "stuff" with us...I just wanted us all to have a relaxing first week in the new place, the boys finally getting to build all the Legos and play the games they got at Christmas but couldn't really open because we were leaving two days later. I hated having to be in the ER so much because of this. Not to mention, Christie just started her new contract this week.

The thing about chronic illness is that it interferes with *everything.* Follow the cause and effect: I have HCM < I must be near my doctor < Christie must take a job near my doctor < the easiest way to do this at present is to be a traveling nurse < we move every 3 months < when in a new area, we don't know anyone who can watch the boys when these things happen < it would be nice to be near family, but there are no HCM specialists in Arkansas, so here we are in New England < my wife and kids are trying to sleep in folding chairs in a noisy, brightly lit ER for the second time in a week < because I have HCM < go back to the beginning.

It's enough to drive me mad, and it will undoubtedly get worse before it gets better.

The frustration of this is beyond anything I can describe. I vent about it here so I can do it once, own it, and get over it.

Most of the time, I'm not scared of HCM, or a heart transplant, or waiting for a heart transplant. But I am terrified that I will be separated from my family for long periods of time while in the hospital. I've been home with both of the boys from the day they were born. I have been their primary care-giver the majority of their lives. Christie and I worked side by side most of our marriage and it's still strange that she goes off the the hospital a few nights a week to a group of people I know nothing about.

Yet I know that eventually, a time will come when the four of us cannot be together 24-7. We're spoiled from having that for so long, and have fought really hard to have as much time together as possible. Knowing that our proximity can be shattered by my heart problem, something completely out of my control, is the thing that really, really gets to me in all of this.

These two nights in the ER have driven home once again how much we are at the mercy of the situation. I have faith in the transplant program at Tufts, in our friends who have so graciously offered to help with the kids as much as possible, and in our ability to adapt and conquer the seemingly impossible. Christie specializes in this. I just hate that she has to.

I'm supposed to go to Tufts next Wednesday for an EP study to determine which anti-arrhythmic medication  will work, and I will be admitted, most likely overnight. If the first med doesn't work, we'll have to wait a bit and try another. This is yet another situation where we're not really prepared for a long stay in Boston, but I guess we need to start figuring these things out. I've learned from experience that miracles are hard to come by, but sometimes there are angels.