TheBanyanTree: Change of Residence

[Jim Miller]

Dear Leafy Friends,

I’ve been mostly quiet on the list for the last few years. Life has been 
full of twists and turns. Like many voices I’ve heard here, I desperately 
wanted to write more and promised myself that I would. It appears that I 
will now be able to fulfill that commitment to myself. I hope that you won’t 
get full of me too soon. I’ve got a dozens of stories rattling around in 
my mind, and more evolving on a daily basis.

Many of you have been with me for the more than eight years of my failing 
heart. In the early days you wheezed with me through the night. We even howled 
at a few full moons together. Both Linda and I remember that 1st year birthday 
party. What a great gang you all are.

For those who are new or don’t remember the details, I’ll provide a little 
background. For my entire life, I’ve been a hard working outdoors person. 
I’m a muscular 6’2” with hair the same shade of bright red today as it was 
when I was 1 year old. I stand out in a crowd. More about that later . . 
 if I get back around to it.

Sixteen days after my 52nd birthday, I was nearly dead and diagnosed with 
dilated cardiomyopathy; an enlarged sick heart. There was no explanation 
or apparent cause. The broad brush in this situation paints the cause as 
a virus. Nobody knows why or can provide a conclusive reason. Case studies 
showed that 50% of diagnosed persons died within 2 years. I didn’t die. I 
was even able to work in my business until two years ago. In 1997, I completed 
a heart transplant workup and was accepted in the program. Six months later 
my condition improved and I no longer met eligibility criteria. (for information 
on available organs vs. the number of people waiting, see http://www.unos.org) 
 I remained fairly strong until about two years ago. Of course being “alpha 
male”, I remained firmly entrenched  in testosterone drenched denial. Early 
last year I found myself at the emergency room, so weak I could barely crawl 
through the automatic doors. While dealing with and removing a very sick 
gall bladder, my cardiologist called for specific heart function tests, which 
proved that my heart had also been in serous decline. The transplant team 
was called back in and I was again invited to join the waiting list right 
after the 4th of July.

Now we find that the reduced function has restricted necessary blood flow 
to critical organs and they are showing signs of significant distress. I 
spent a week in the hospital beginning April 1. (I accused the transplant 
coordinator of an April fools joke) The transplant surgeon gave my other 
doctors the opportunity to resolve the problem with medication changes, or 
he could get the job done. They did try. They tried mightily. . . . . but 
failed. It didn’t work.

The initial option offered me was to implant a mechanical heart. More specifically 
an electric pump to assist the failing heart.  This device is also know as 
a Ventricular Assist Device, or VAD. It is only a bridge to transplant, not 
a solution. Three weeks ago I was invited to consider a second option; live 
in the hospital with an IV feeding me a continuous dose of Dobutamine. This 
drug causes the heart to contract more aggressively, and increases flow. 
This drug accomplishes this without additional damage to the heart. My April 
hospital stay proved the success of this technique.

Let’s see, get a piece of paper and do the old Benjamin Franklin close. Divide 
the sheet and put the pluses on one side and the negatives on the other. 
Start with the mechanical bridge device. Pluses include that my internal 
organs remain healthy. We can put that one on both sheets. Do you sense a 
little pressure to do something yet? Another plus is that it requires continuous 
and nearly constant medical attention, thus raising my priority in the waiting 
list database.  Yes, that’s a plus on the other sheet to. Can’t think of 
any other pluses. Whoops! Nearly forgot the big one. With both, I’m still 
alive. Now the negatives. The VAD requires major open chest surgery. Recovery 
is extensive. During the recovery, I’m unable to receive a transplant if 
a donor organ becomes available. I must live with control and power wires 
 protruding from my belly. This wound requires daily dressing and presents 
the risk of infection. The controller is worn on a harness as are 2 weighty 
batteries with a four hour charge life. Finally you walk around sounding 
like a bilge pump under load. All of this is for an indefinite period, until 
your number comes up, and an appropriate match is located. The IV includes 
all the pluses of the VAD. The downside is: a continuous IV in your arm with 
a pole buddy on wheels tagging with you for the duration. The other negative 
is that you get to live in the hospital, on one floor for the next; oh, that’s 
right, no one knows how long. Fortunately, one of the best transplant clinics 
in the world is here in Spokane. I have the best the profession has to offer, 
and I don’t have to leave town. Linda can visit everyday. After over 40 years 
of living together, it’s still hard to fathom. Not as hard for me as for 
Linda. In the hospital someone wants something every four hours, and that 
is at the outside. People coming and going 24 hours a day. How could I be 
lonesome? On the other hand, Linda gets to go home to a quiet empty house. 
A house, where for the last 20 years, I’ve fixed everything that broke or 
needed replaced.

After much thought and discussion, the decision was easy for us. I’ve just 
ended my third day in the hospital. I have a large private room. I justified 
a new notebook and other minor toys. For the first time in over 7 years, 
my home office is devoid of clutter as I prepared to be gone indefinitely. 
I have a computer desk, storage box with files for my personal books and 
for those business details that I can handle for Linda. I’m connected to 
a broadband WIFI network and the world is at my fingertips.  I have skype 
telephone. Call me if you want. You can find me by searching “dblthump”. 
If I’m out for a walk, or tests, I’ll usually be back shortly.

After just three days, I have stories to entertain for hours. Although I’m 
a slow typist, I should be checking in on a regular basis. I can tell that 
I’ll be bored silly if I don’t keep occupied with projects and routine. Stay 
tuned.

Jim Miller