TheBanyanTree: Heart Chronicles - Again

[Jim Miller]

Dear Banyan Tree Friends,

Peter poked at me earlier today. In my mind, I've been writing every
day, and my but its good. Unfortunately that doesn't cut it in reality.
Thanks for poking Peter. My writer's guilt is once again relieved.

Transplant Journal 7-21-2004

Today marks two months since I began my confinement. So far, so good.
With consideration for my health and stamina, each day has its unique
challenges. Some days I awake fully refreshed with a zeal for work and
business. Other days, I drag until the day is over. Not at all different
from my level of energy and tasks accomplished for the last two years. 

I find it difficult to end a day without completing specific goals.
Linda reminds me frequently that for now I can't complete the amount of
work that I set for myself. She tells me that it's alright to sit still,
read and take a nap. I know that she's right; still, it's difficult to
waste the day. I know that I won't get it back.


The journal software has been installed on my website. I tried one and
didn't like it. The current software has good flexibility and can be
customized any way that I want. I've started to play with it, but am so
rusty with my HTML and am just learning PHP. It typically takes several
hours to make the slightest change. The next go at the same problem can
be completed in minutes. I'll continue to practice and get better. I've
also linked a photo gallery, which features pictures I've taken while
here in the hospital. So far no writing has been posted. Soon, I
promise. You can see the photo link at:

http://www.maze.cc	

One of the nurse assistants speaks fluent Spanish and is coaxing me to
start working on it again. Linda brought in my Spanish language CDs. Now
to find the time and energy.

There was a transplant completed last week. Because of HIPPA mandated
privacy regulations, no information is available outside of the medical
professional's need to know in order to care for the individual. Because
the activity originated on another floor, I was not aware that a donor
heart was available.  The regulations are so rigid that technically, my
nurse, who may be caring for a patient in the next room, can not tell me
that they are experiencing a bad day. The confidentiality is compounded
within the transplant clinic. I have visited with VAD patients on this
floor. After receiving first hand information from the patient, my
transplant coordinator can neither deny nor confirm facts that I already
know.

So Tuesday, I hear from a reliable source (no names as I can't risk
losing my sources) that a transplant may happen that day. I put out
feelers to the usual people to find out what they know. Those that know
something, admit nothing but look at me with that 'how do you know'
look, so I know that it's more than rumors. All day goes by and I know
that something is happening on floor six, but anyone who knows for sure
isn't talking. (I've since learned how to get more factual information
sooner.)At about 6PM a cardiologist that Linda fired way back in the
beginning (he still hasn't figured it out, and talks to me every time he
sees me) stopped by my room and said that one of his patients down on
six was getting a transplant and that he was going to get more
information. I found out later that it wasn't his patient, but another
doctor's in his group. I didn't see him again. I received confirmation
about 9PM that in fact a transplant was happening but no details were
known. Other clues were confirming my information sources. 

On the night shift, the charge nurse usually looks after me, since I'm
the 'easy care'. Mike came in at midnight to do an evaluation. I said,
"Mike, are you my friend?" He paused and said, "Yes, why?" With as
straight a face as I could muster, I said that "friends don't keep
secrets". He asked what I was talking about and I told him I knew that a
transplant scenario had begun on his shift the night before, and that I
expected him to let me know about those things when they happened.
Whether he was putting me on or not, I couldn't tell. He said that he
got word around 1:30AM, but that he heard there would be a least a 24
hour delay, and assumed that it was another no-go. OK, Mike's off the
hook for now.

On Wednesday morning, I confirmed that a transplant did happen, with
surgery beginning around 1:30AM and completed in four hours. I also
heard that the heart didn't go to the originally intended recipient.
More investigation was required.

In September, the 8 North acute cardiac care unit will no longer exist.
All cardiac care will move to 6 South. 6 South is currently a heart
unit, but has not taken care of VAD patients or housed long term
residents like me. That will change, although, I'm lobbying to stay put
until my transplant. Right now, it's wait-and-see. 

I'm not allowed to wander in the hospital, out of range of the
all-seeing telemetry monitor, without Linda or a nurse. Julie, an
evening shift RN has made herself available for short walks after
dinner. On Wednesday, I told her I wanted to take a look at 6 South. On
the elevator, Julie asked what I wanted to do on six. Was I just scoping
it out in the event that I am moved? I told her that I hoped to be out
of here before then. No, I was on a scouting mission and intended to
"find the guy that didn't get the heart last night". She said, "you're
not going to get me in trouble, are you"? I told her to just walk the
other way, when I started snooping. It wasn't necessary. When we stopped
at the nurse's station, a friend of Julie's came over, and after finding
out that I was on the waiting list, and might be moving down to their
unit; she asked if I had met Steve in 637. Well, that was easy. 

I visited with Steve for about 15 minutes. He told me everything. They
had prepped him the night before, including a complete shave. He knew
that the donor was 2.5 flight hours out, which allows a fairly wide
radius, as our docs fly by Learjet. Steve was a complete match, except
there was a question of organ size. Steve is a smaller body type than
the donor, but the surgeon wouldn't know absolutely until he began his
harvest and could take physical measurements. The heart was too big. The
next match was Doug (don't know his last name yet, but I will soon
enough, since he's now out of ICU) who has been on the waiting list for
seven days.  Steve has been in-hospital since May 26, five days after I
entered. At the time he was admitted, he wasn't yet approved for a
transplant.

Before I left the floor, I found out about another long term patient at
the other end of floor six. After enquiring, I found out that his name
is Jeremy in 618. These two didn't even know about each other. I visited
briefly with Jeremy, who is 28 and has a congenital heart problem. He
has been in-hospital since the end of April and also was placed on the
waiting list after being admitted. When I returned to 8 North, the
monitor tech said that she could clearly see my telemetry everywhere
except in the elevator. That opened the door to unaccompanied floor six
visits, and I fully intended to take advantage.

Thursday morning, I spent too much time thinking about what I had
learned. I tried to keep it all in perspective, but I found it difficult
to impossible. I have 18 months on the waiting list. I know of at least
one status 1B person who has been waiting longer. Here were three
newbies, and the newest got the heart. I completely understand, and
don't have any bad feelings. Match is critical, and I didn't match. For
about 24 hours, that didn't make any difference. In my mind, I wanted
the team to stop taking new patients until I could get my transplant. I
have so much life ahead, and here I sit spinning my wheels. Friday
morning, I got up and dressed in all black to clear the mood.
(Youngblood would approve) I guess it worked, because I got over it by
mid afternoon. The good news is that the heart stayed here and someone's
life was suddenly and radically changed for the better.

That raises the other perspective. My aunt in Budapest sent me an email
saying that my brother had mentioned the plight of the donor and donor's
family. She commented that she had failed to give the donor any thought.
"To easy to dismiss the unknown as inconsequential", she wrote. Her
comment caused me to think about my roll as it relates to the donor.

The heart donor MUST die of brain death. That requires a fatal brain
injury. Otherwise, the donor must be in nearly perfect health. That
means that in all likelihood the donor is relatively young and has been
cut down in his prime. This is truly an unfulfilled life. My roll is to
accept the gift of life from this person who has been denied life. For
me, this is redemption. In effect, I'm being born again. I find this new
roll to be an awesome responsibility. I see many transplants who
determine that they have worked hard for long enough, and plan to spend
the remainder of their life loafing. While I can't account for or judge
another person's motivation, I don't fully understand it either. I owe
my benefactor more.

So, I'm starting month three. I continue to be busy and not be bored for
most of the time. I have visited Steve and Jeremy again, and will
continue as long as any of us is still here. I expect to gown up and
visit Doug in a day or two. Then I'll get the whole story. 

If you want to view a cute animation of a full heart transplant
procedure, go to:

http://www.pbs.org/wgbh/nova/eheart/transplant.html

Jim
jim at maze.cc
http://www.maze.cc