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The Organ Donation Chronicle of Michael Podolny, Albuquerque, New Mexico
(As posted on his blog: http://de-intimidator.blogspot.com/)
April and May of 2008
D-Day Minus 18 And Counting
Most of the people close to me are aware that in 18 days I should be in
the operating room of the Hartford Hospital in Hartford, CT, where I
will be donating one of my kidneys to my sister. But since one needs to
write about something in one’s blog and 1) this isn’t
exactly a common everyday event, 2) it will give me material for at
least a month and maybe more to write about, and 3) being open about
this has over the last two months has opened a wellspring of uplifting
events; it really seems like the right thing to do.
The Journey Begins
It has been almost two years since this odyssey began.
Approximately a year ago last winter I got news that my sister’s
kidneys were failing. I would say that my family (siblings and
remaining parent) is not exactly close. And while if I were a
good brother, I would have known this much sooner than I did about, it
came to me as shock. My sister lives back in Connecticut and I would
not characterize her as the most self-reliant person in the world.
So getting this information, what was I going to do. There was a
initial passing thought about donating but with conversation with my
father, I was counseled to be very careful about what commitments I
made and to really think about the consequences of my actions.
That led to a hiatus in activity. But it became apparent very
quickly that there were very few people who had expressed any interest
in donating and those that did were either not compatible blood types
and/or my children. I really didn’t like the idea of my
children with so much of their life in front of them to take this
risk. And I knew that I was compatible. A nagging feeling began
to arise. I was being put into a situation where for once in my
life I had to make choice that could affect if someone was going to
live or die.
So I began to start reading about live donation and getting an idea of
the risks that were involved and what type of commitment would have to
be made. I learned that this is considered a very, very safe
procedure – but that it was major surgery – and you could
die. I also found that I could be out of commission for up to 3
months – Yikes! What was going to happen with my income? I
am self-employed. Most of my income is what I generate.
Because out legal system wants to discourage any trafficking of organs,
it is very, very difficult to get any financial aid to assist a
donor. Our financial situation was going to be doubly taxed
because of having to go to Connecticut and all the associated costs of
funding the travel and staying their. What would be the consequences to
my wife if I died? What would happen if I didn’t die but became
disabled – financially a much worse scenario? There was a lot to
consider.
Weighing The Choices
The choices I discussed last time get going over and over in my head
and in my discussions with Wife – what would be the consequences
to us to her if the worse happened. At the same time there was
this other theme – I could save her life. Or I could let
her go on dialysis and wait and wait and wait until maybe she came up
on the donation list. And I balanced this against the importance of my
life to my family and what my sister’s contribution was.
That was a particularly bad space to be in. How do you judge
another persons life. Do you do it on accomplishment? Values?
Wealth? What? Ultimately for me the entire conundrum came down to
a rather simple thought. If the roles were reversed, would I want
someone examining my life and passing judgment on me as to my
worthiness to be saved? Hell no I wouldn’t. I’d
want them to save my ass.
That sealed the decision in my own mind. But that did not take
into account the feelings and desires of Wife. I don’t want
to put words in her mouth. I think anyone who is married or has
had a long relationship with a partner would be less than happy to have
that partner making such a choice. After long talks with Wife I got her
acquiescence to proceed.
Getting Serious
By now it was getting towards the summer of 2006. We initiated contact
with the hospital where my sister was being taken care of, Hartford
Hospital in Hartford, Connecticut and began the series of screening
tests. This consists of blood and urine tests that identify how
well you match or don’t match and how healthy one’s kidney
functions are since they’re not going to take a kidney from you
if you are having your own problems.
There were a couple of humorous moments here. When you stop in
for the first set of blood tests they come out with almost a dozen
vials. I think my jaw must have dropped because the technician
made a comment about how this was indeed a lot of blood to be
taken. Another test is known as the 24-hour urine sample.
This requires you to literally collect all one’s waste for an
entire day. I will just tell you that it’s a helluva lot!
Emotionally once you’ve made a decision like this, you now start
to become worried about failing to be able to follow through on the
commitment. So it was relief to me when the results of these
tests were positive
The next hurdle was a trip to Hartford Hospital. By now they had
gotten a complete medical history, ekg, and other general health
tests. The trip to Hartford included meeting the doctors, being
told what was going to happen, meeting a psychologist (they try to
screen out the self-sacrificial) and getting an MRI to find out what
the kidneys look like and where they were exactly located.
The results of everything were positive. I was fully
approved. We began talking about dates. Our desire was to
do it around Christmas time when activity in my business tended to slow
down. We began discussing specifics and mechanics of how we were going
to arrange for my care and stay in Connecticut and what we were doing
business wise. I began to tell various business contacts about
what might be happening so that the appropriate planning could take
place. We researched mechanisms for financial aid (there
aren’t many) and I talked to lots of people who had been through
donating. We were gearing up and dealing with our concerns and
issues as best we could.
Then we got a call from my sister. Everything was going to be on
hold. Evidently the deterioration of her kidney function had
stopped and was hovering at a level higher than the threshold beyond
which they will do a transplant. We learned that this is not an
uncommon situation where a recipient will plateau, hold steady, and
then suddenly start having the kidney function deteriorate again. After
all of our efforts, we were on indefinite hold.
The Wait And The Call To Action
The wait began in the early fall of 2006. Through first part of
2007 the thought of doing the donation went into the background.
There was nothing my sister or I could do. Her condition needed
to run its course. To a certain degree it was if it never
happened. I couldn’t plan for it so I went forward with my
life. Every once and a while someone would ask or Wife and I
would bring it up but for the most part it became a non-issue.
Then in the summer of 2007, my sister gave me the news that her kidneys
were again failing. My sister is not the subtlest person in the
world. Her words were that we could schedule the donation surgery
again. I nearly blew up telling here I couldn’t just up and
do this that I had to plan things out to ensure the minimal disruption
to my business and our financial well-being. Wife in the interim had
suggested that maybe there was a chance of a non-living donor being
available. My sister was very apologetic and asked if I had
changed my mind. I did take a few days to reflect and no, I had
not chanced my mind. This was something I still felt was
important for me to do.
I needn’t have bothered with my explosion. Because of the
time that had elapsed they (the hospital) were starting the process of
approving her for a transplant all over again. During the hiatus,
there had been a complete turnover of the personnel who were the
coordinators for the recipient and the donor. So both of us were
dealing with new people that we had no prior contact with. In
addition these people seemed very inexperienced and to my mind very
bureaucratic.
My sister went through another round of screening and there was serious
concern on the part of the hospital after her psychological
examination. They asked her to get an outside opinion.
I’m not sure what the issue was but I can extrapolate that they
were concerned about her ability to follow through on all the
requirements following the receipt of the organ donation.
While all this was going on, we are waiting and wondering because the
hospital refused to talk to us. There position was until my
sister was officially approved, there was no authorization to talk to a
donor. I was livid. What about my life? Didn’t
my needs enter into the equation? I needed to talk to them.
I needed to tell them that I couldn’t just drop what I was doing
and run and donate my kidney. My business was at a critical point
and I had to plan for my absence. We wanted to do the donation in
December when business was always slow. I tried to explain all
this to my sister so she would understand but in reality she was caught
up in the system too.
The Decision is Made
We watched the dance of my sister trying to deal with system going to
her own psychologist and then the Hospitals and back. In the
meantime the weeks and months ticked away – September, October,
November. We were supposed to be spending Christmas with our
daughter in Chicago but we couldn’t make any commitments or
reservations because we might get the call that we can do the
transplant in December. I’m balancing commitments to my
associates at work. What can they expect of me? Wife, who
has been so supportive, asks only one thing, that this doesn’t
screw up a long planned river cruise in Europe. I keep trying to
tell my sister what my restraints are that if it can’t be done
December, we are going to have to wait until May.
Finally in December the call finally comes. Sister is approved.
Let’s do this in late January. Explosion number two.
The hospital is telling me that they only schedule these donations six
weeks in advance. I talk to my coordinator and explain the
situation (now that I can actually talk to someone officially), how I
need time to put my affairs business and financial in order and how May
is the time that I want to do the donation. The hospital agrees
to my request. In the game of Hospital Bureaucracy vs de-I,
it’s 5832 to 1. I’m on the scoreboard!
Of course my sister wasn’t too happy about the delay but with my
assurances that I was fully committed to making the donation, she was
ok about it. Just a side note for the purpose of full disclosure
– my sister never once asked me to donate my kidney and I can say
in all honesty that I don’t think she ever even once made the
slightest implication of guilt. All she has ever shown was
gratitude.
Starting the Countdown
We had set the date, May 14. It was real. We were going to
do this. Now the reality of trying to organize my business so
that I could maximize my cash in the bank and some how have some
momentum for when I came out. I told my associates that from now
(January 2008) until the donation was complete that I was going to
focus exclusively on earning income and was putting longer term
developmental projects on hold. We were in the process of some
significant developments with associates having their own challenges
and there were lots of questions as to where everything was going to
end up. Not exactly a comforting set of thoughts as I’m
wondering how we’re going make this all work financially.
Because so much time had elapsed since we had started this process, it
was necessary to redo most of the medical tests. Back I went for
the dozen test tubes of blood and the 24-hour urine sample. Of
course by now I was pro and was non-plussed. Certain tests for
tissue sampling and various dread diseases, the hospital in Connecticut
wanted to do directly. So in February, I took a trip their.
Around this time a funny thing happened. It had to do with my
motivations. They didn’t get challenged. They
expanded. I can’t quite remember how it took place but I
was becoming very aware of gratitude and specifically my personal
gratitude for so much that had happened to me in my life.
It might not seem this way to some, but I feel I’ve had a charmed
life. Any time something bad happened; something else happened to
bail me out. When I was in the Army, I was supposed to go to Viet Nam
– I had orders to go – but there was a one-letter error on
the orders. The clerk could have easily said that it made no
difference. Instead she said the orders were faulty and sent them
back to Washington where we promptly never heard from them again.
I was not the best person when I started my marriage or raising my
kids. But my Wife had unlimited patience and waited until I got
my act together. I had business failures and made bad spending
decisions that were ultimately bailed out by relatives. Just in
the last few years I have missed major auto accidents by the tinniest
of margins. Never had I been put in a situation where I had to
make a conscious decision about putting myself at risk for something
that was truly important – like another’s life.
But here it was – that situation where I had in fact been offered
the opportunity to make a conscious decision – to decide if I was
willing to take the risk to save someone else. It was so clear in
my mind at that moment that God was giving me a test. Was I going
to take all the good fortune for granted as if I was entitled to
it? Or was I going accept that I needed to repay all the good
fortune I had received. Was I going to be true to the spiritual
principles I had worked on for 25 years? Or when there was a risk
to my life, was I going to bail?
For me there was no question. And it filled me with even more
confidence that this was what I was supposed to and what I needed to do.
Coming Down the Final Stretch
As we moved into March life was getting unbelievably hectic.
Fine, I’d made my decision. I was totally comfortable with
it. But that didn’t take away from my need plan my life so
that this wasn’t going to be a bad financial disruption. I
had bought a copy of the DVD, The Secret, for my associate, Ricardo,
and we were watching it at his home. It’s all about the
power of visualization. I had got it for him but I took the
message to heart. I needed to visualize exactly how I was going
to power through this to the outcome I wanted. So I started
putting lots of energy into that. At the same time I was trying
to work as hard as I could to 1) make sure my existing clients were all
where they needed to be when I took my hiatus and 2) that I had some
business to look forward to when I was able to come back to work.
Other things were happening; signs that I truly had made the right
decision. After my visit to CT in February, my Dad had come to
the conclusion that his new guide dog really needed walking every day,
something he could not do. So he asked my sister to do it.
My sister and my Dad have had almost no relationship for decades.
Now they were seeing each other everyday – and talking –
and communicating. I never thought I would see this happen.
Some things with my associates that were real question marks suddenly
just resolved themselves. All of a sudden after years of effort,
we were seen new business being developed by people other than me and
in places other than New Mexico. And on top of it, totally unasked for,
a financial benefactor offered to provide me with financial support for
the period when I couldn’t work and had the extra expenses for
being in CT. A huge psychological burden lifted.
We had our trip to Europe coming up and I wasn’t excited. I
should be working. Even with the benefactor, I should be doing
everything in my power to make sure the business would be in good
shape. Up until the night before we left, I was working and when
we got on the plane I had done virtually nothing to be ready for our
trip.
It’s Becoming Reality
The chaos leading up to the trip was ultimately very beneficial.
I was in fact tying up lots of loose ends with my business and getting
things into position to go on autopilot for the period that I was to be
down. The vacation itself was great. I really wasn’t
thinking about anything other than what we were doing which was a
blessing. On the flight back, my mind turned back to what was
about to occur.
My associates and I made a decision to make a public announcement via
our E-Letter of my unavailability during the surgery and recovery
period. Our list is around 1000 and I must have had close to a
hundred emails expressing support not to mention all the expressions of
support from friends, clients and associates. It has been very
humbling and touching.
My associates were doing a phenomenal job. We have new business
opportunities being lined up for following the surgery. All the
client work is in good shape. We had a financial hiccup with a
lot of slow paying receivables that put Wife and I into a little
panic. But with the help of our associates we put that to rest.
Wife and I did a lot of talking – a lot of making sure we were on the same page and were OK with the decision.
More miracles within the family – my father prodded me about
making sure my sister had the proper support over the first few weeks
after the surgery when there is the necessity of a highly disciplined
regime of anti-rejection drugs she needs to be taking. This leads
to me calling my older brother and asking for help that is gladly
given...I don’t thing we’ve talked in over a year. We
have a conference call with my two brothers, my father and I. We
haven’t had this kind of discussion I think ever. My Dad is
incredibly relieved that my older brother is going to following my
younger brother coming to CT to provide support – and they
haven’t had a very good relationship either. My younger
brother is providing more and more emotional support to me. My
sister is showing that she is truly committed to doing what she will
have to do after the surgery.
Finally there isn’t a whole lot left to do other than pack and
make my way to Connecticut. No more thinking or planning.
Everything associated with everyday life has been programmed into the
autopilot and set on its way to a point in the future when I will
rejoin it. It is a very, very odd feeling. I’m mix of
emotions and feelings from blissfully spiritually to fear of the
unknown a potential end to it all. And I’m on the plane to
Connecticut. It is happening.
Crisis Averted
Yesterday was the first step of the actual process leading to the
surgery. As I am an out-of-state donor, they take a number of
steps that would have been done earlier and place them just before the
surgery so one doesn’t have to make that many extra trips.
One of these steps was supposed to have been done in February when I
visited last. This was visit with kidney specialist and a review
of my medical history. As the doctor and my coordinator were on
vacation when I was there, we couldn’t do this and it was
scheduled for yesterday.
I had a heart related situation fifteen years ago. Subsequently,
I have had a couple of clean stress tests though there does show a
light irregularity on my EKG. Looking at my chart, the kidney
specialist decided that I needed to do another stress test.
It’s 10 in the morning and they want me to the cardiologist (in a
different town than the hospital) at 11:45. In the meantime, they
are trying to get everything I was supposed to do Friday morning done
in the hour or so I had left. This included meeting the surgeon
that is most likely doing the work on me.
It’s a good thing I have researched this hospital completely and
know they have an excellent track record and reputation because the
experience I’ve had with the majority of the people (my
coordinator, the kidney specialist, my sister’s coordinator, the
social worker) has been unimpressive. It’s like
they’re this big factory and they’re just processing
us. Every time I ask a question, I get a “I don’t
know” or a pat answer that clearly is from the book.
Requests to have certain people who are the specialist for the question
not known, are never followed up. Fortunately the surgeon seems
cut from a very different cloth and I felt very comfortable with him
and let’s face it, he’s the most important one.
At the cardiologist’s, I’m expedited on to the treadmill
and do a stress test. The RN handling this is big expressive very
outgoing guy. As we do the test and just afterward, he’s
getting quieter and quieter with a troubled look on his face. I
know something bad is happening. He tells me about the
irregularity which I know from the last time I did this. He shows
it to the cardiologist who says that they’re going to have to do
some additional testing before they can clear me; either a nuclear
stress test where they actually take a picture of your heart and
arteries or an angiogram that does that does this in even more
depth. These could take days to do. At best I’m
looking at the prospect of delaying the surgery or at worst my being
disqualified as a donor altogether. Emotionally, I’m taking
a broadside from a battleship.
At this point probably the nicest thing that could happen took
place. The cardiologist (I’m embarrassed that I can’t
remember his name) clearly sees my distress as I relate the issues of
distance and my personal circumstances. He puts everything into
overdrive. There is an extra dose of the nuclear dye. He
OK’s my explanation that I’m in good shape and can easily
do another stress test. He’s tells everyone they’re
going to do it now. The staff could not have been nicer or more
supportive.
The nuclear stress test involves them having you do the treadmill, then
shooting you with a nuclear dye, and then lying you down motionless for
20 minutes each on your front and back while they take pictures using
some sort of MRI type device. All during the wait, the test, the
pictures, I am meditating and visualizing with as much concentration as
I can. Finally as I am waiting following the test, the doctor
comes out and tells me I’m clean and I can go ahead with the
donation. As a final kindness he tells me he will call the kidney
specialist to make sure that they have gotten the news and that
everything is still on schedule.
It is almost 4 in the afternoon by the time all this has
happened. I haven’t eaten since breakfast, it’s
pouring cats and dogs out, and I’m totally wiped out. I get
to my father’s and he gives me a restorative snack of cheese and
armagnac. We decide to cook at the house. I run out and get
a big steak and baked potato that Dad cooks along with onions cooked in
schmaltz. I go down into his cellar and dug up a bottle of a
’91 Côtes du Rhone. It’s a real soul food kind
of meal and with my Father’s company, very restorative. I
crash at around 9 PM and sleep through the night.
Under 24 Hours
It’s 3:30 in the afternoon on Tuesday. By this time
tomorrow, the operation will be over. After the almost two years,
the moment has really arrived.
This most likely will be my last post until I am released from the
hospital. They anticipate that I will be released next Sunday
18th. I’m not sure if I will be able to get access to my
computer until after the release and I’m pretty sure
there’s no wireless access. I have asked daughter
Motherrocker to post-the updated news on the blog for me. I am so
ready to get to the operating room and have this accomplished. It
has been soooo long.
The weekend was uneventful. I just hung around my Dad’s and
we did the stuff we usually do when I visit him. On Monday, I was
back to the hospital for more stuff. This included getting my
admission paperwork done, more blood work for both general health and
final tissue matching, and a chest x-ray. Of course when I showed
up there were no instructions for what was to be done with me.
Evidently the transplant department hadn’t sent the appropriate
work orders down. But I was in the computer system so they were able to
get me processed until the orders came down. They give you a much
more detailed explanation of what will happen the day of the
surgery. I must admit I don’t particularly like hearing
those details but I know it’s better than arriving and having no
idea of what has happened. You stop eating around midday and are
supposed to be off of anything including water after midnight.
I’m supposed to be at the hospital at 5:50 in the morning with
the surgery scheduled for 7:45. It should last 3.5 to 4 hours.
Gloria arrived last night and my brother Richard came in the night
before. We had a dinner together with my Dad, my sister and her
husband.
I suspect that I will be very introspective tonight. I want to
thank everyone for all the wonderful expressions of support and prayers
on both my and my sister’s behalf and look forward to writing to
you about the fun times in the hospital.
My Trip Through Surgery and Recovery
I didn’t sleep very well the night before the surgery. Wife
and I decided that logistically it made sense to make use of some rooms
that the hospital sets aside for family of patients - nice logistically
but absolutely minimalist from a creature comfort standpoint. The bed
was so small I ended up sleeping on the couch. Between that and
the general excitement, it wasn’t much of a night’s sleep.
We were up at 5:15. You have to scrub yourself down with this
special soap for five minutes prior to the surgery. Then it was
walk the couple of blocks to the hospital and to the pre-op
registration. Here begins the transformation from civilian to
patient. I’m sure that many of you have had your hospital
experiences but this is the first time that I have ever gone in for
major surgery. I’ve commented previously on my frustrations
with the hospital’s bureaucracy however, I have nothing but good
things to say about the staff that prepared us for the operation.
Quick, efficient, calming, caring, they had all the aspects one would
hope for when entrusting your life into an organization’s
hands. Wife was with me through out and was a rock of calmness.
On my own part I was amazingly calm. In fact I was almost
buoyant. After getting rid of my clothes and getting in the
hospital gown and having given all the facts and figures to the
appropriate people you’re waiting in the hospital bed. I
had my iPod and was listening to mantra chanting. Before long I
was sitting in a meditation posture on the gurney and getting into a
very solid state. My surgeon came in. He and I had talked
about meditation at our visit on Friday. He is a very calming
soul as well and told me he’d be seeing me in the operating
room. The anesthesiologist came by to brief me. My sister
was across the room and I had a chance to give her some upbeat words.
Then came two operating room nurses, one of whom I will call my
operating room angel, Irene. Angel Irene asked me what I was
listening to. When I did she asked if she could listen for a
moment. Then she asked me about some other yogic mantras that she
found very beautiful. We were ready to go. I was handing my
iPod and headphones to Wife and Angel Irene told me not to, that I
could keep them on until we got into surgery and that she would
personally make sure that they stayed with me. I said goodbye to
Wife and we rolled a very short way into operating room (I think unless
they had a pre-operating room). They put the IV into my arm and
that was the last thing that I remembered until I was in the recovery
room.
In the recovery room my first contact was with another sweet soul,
John, who let me know that the surgery had been successful for both my
sister and I and that I would be taking awhile to be coming out of the
anesthetic. When John talked to me I realized that I still had my
headphones on and they were still playing the mantra chant as when I
entered into the OR. This recording is only 45 minutes long and
is not set for repetitive play. So I don’t know what my
Angel did in turns of turning it off and turning it on when things were
over but I can’t think of a kinder expression of caring.
The pain wasn’t too bad in the recovery room but we were there
for quite some time. At one point John came by and told me that
my blood oxygen level wasn’t coming up high enough and they were
making adjustments. I was pretty fuzzy. What I didn’t
know was that outside in the waiting area Wife and my Brother were in
deep anxiety. The surgeon had come out right after the surgery
and found them in the hospital lobby to let them know that the surgery
was successful and that I should be up in another hour to hour and a
half. Hours go by with out a word. My sister’s
husband has been called into the recovery room to see her but all Wife
and brother get is a word that I’m having trouble with my oxygen
level. Brother the doctor knows that types of things that can go
wrong and Wife knows that I’ve had this type of thing
before. It is over 4 hours after the surgery before I’m
wheeled up to the floor where I will be staying. I’m still
very fuzzy at this point and don’t pick up at all on the anxiety
level of Wife and brother. It’s almost 6 PM by this time
and it has been a long, long day for Wife and she wants to let go of
the stress and I’m out of it anyway.
Through The Looking Glass – Life In The Hospital
My very limited and unscientific sample of hospitals has led me to
believe that an awful lot of them are big bureaucratic machines. But my
negative feelings about Hartford Hospital during all the months prior
to the surgery were confirmed in spades when I was placed in its bowels
for recovery following the surgery.
I briefly posted on Friday about the pain once surgery was
complete. I can’t say that I wasn’t warned by a
number of people. But as I’ve commented when you willing
yourself through such an experience, you are putting your mental
energies into visualizing your fully successful outcome, you just
don’t focus on the negative. And you are focusing on
getting to the finish line (the operation) so detailed thoughts of what
exactly was implied by having gone through this act were not fully on
the agenda either.
So starting Wed night in my hospital room the full implications of my
decision in terms of my person were hitting me like a ton of
bricks. I can honestly say that I’ve never been in such a
constant level of pain for such an extended period. Of course
I’ve lived a charmed life and there millions maybe billions of
people who daily are going through incredible levels of pain. I
can describe the pain as fitting into four categories:
> Pain from the operation – this includes
the incision and the resulting trauma to tissue in the body and around
the area where work was done
> Pain from gas – the gas the system generates from working out the anesthesia they put into you
> Pain from being in bed – Being bedridden
causes it own set of problems with aching and soreness and is
exacerbated by whatever you bring along such as my arthritic hips and
shoulders
> Pain from the hospital system – I include
in this all the physical stuff such as tubes sticking in you and out of
you, blood being taken, etc. plus the psychological aspects of the
hospital routine that seems to an outsider as specifically designed to
keep one disjointed, frustrated and as discombobulated as possible.
I may be being very unfair to the people who were working in the unit I
was at. There may have been some extenuating situations.
And there were some really wonderful people who really did their jobs
with caring. But the majority were just going through the
motions; doing as little as they could to get through the day.
There are these horribly annoying IV dispensing machines. You are
given a metal pole on set of wheels. On this goes your IV bags
(you could have several for hydration/nutrition, medicines, other
drugs), the dispensing machines, and your urine collection bag (you are
almost certainly have a catheter in you. In fact the cognoscenti
quickly figure out that urine production and the optical clarity of
your urine are very, very important. One of my roommates and I
would give each other pats on our back about the volume and good
looking nature of our urine).
The pole is your symbol that you are indeed a patient worthy of being
in the hospital. Once your input and output tubes come out, the
system will be looking to eject you as soon as it can (modified for
maximum final frustration). The dispensing machines are very
sensitive. If by rolling over your block one of your tubes
(really easy to do when you’re drugged up and in pain), it sets
off an alarm. It sets off an alarm when one of your bags is
getting empty. If it is on battery there is an alarm for it
getting low. When the alarm goes off, it goes beep beep, pause,
beep beep, on and on and on and on until someone comes and fixes the
problem and resets the machine. Until you become a cognoscenti
like during the first 12 hours when you are racked with pain and in an
anesthetic haze, you don’t even realize what is causing the
beep. No orientation is given when they wheel you in the
room. Your consciousness just becomes aware of the beeping that
continue and continues and continues with ever deeper annoyance.
You finally learn that you are supposed to call for help which almost
never comes right away and can take as long as 40 minutes. Not
only that, you can hear the beeping of other people’s
machines. You can hear their calls into the central desk.
You can hear the page for the appropriate Nurse or Care Assistant to go
to the room. You can hear the beeping continuing and
continuing. You can hear the second request. So if I can
hear other people’s beeping from around floor, can’t the
staff here it? If they do, there must be some sort of work rule
that says you can’t initiate any action until the patient
actually requests it because they never did with me or anyone else that
I could determine.
It almost never mattered what you requested because it was going to
take awhile to get. Sometimes you could hear that there was
something critical going on in the floor – lot’s of calls
for help at once, a critical patient being wheeled in, etc. –
however other times I would see (as I was getting better and walking
around a lot) that the staff was just chatting away while the calls for
assistance came and went. The body language of a lot of the staff
was so demonstrative – “I really don’t want to do any
work and I’m going to do as little as I can get away with”.
Within a short period of time, a day or so, you can hear totally
what’s happening. That’s a problem itself because
trying to get any quiet or darkness to rest is really difficult.
Then there are the routines that must, must, must happen. You
must get your vital signs (temperature, pulse and blood pressure) three
times a day and you must get your blood taken once a day. And all
your urine must be measured. Most of these are scheduled for when
you finally doze off to sleep.
You are encouraged to get your lazy ass out of bed and get walking
around. This of course is a good thing because it is what you
need to get out. However, there is that slight problem of getting
anyone to actually help you during those first few times. I was
lucky that my care assistant in the beginning was one of the best I
had. Then you go through the learning curve of how to unplug your
device so your pole was mobile and how to use the pole for support
while navigating with the device plus input and output bags and tubing.
Then there is pain medication. The whole thing related to pain
medication is very bizarre. Along with our device, they include a
narcotic pain reliever. You get another button (brown to
distinguish it from the red ‘pretend someone is going to respond
to your call for help’ button. They want you to use your
brown button - sort of. You can push it as much as you
want. The device will regulate things so you can never overdose
yourself. And the official posture is that they do not want you
in pain. You should not be in pain. You should take your
pain medication.
Now some of us are sensitive to narcotics and don’t react
well. They send me into all kinds of dark dreams and I feel like
I’m on the verge of asphyxiating. So after the first night,
I’m saying to myself, “I may be in agony from the pain but
I think the narcotic effect is worse so I’ll just deal with the
pain.” The system doesn’t like this. When the
doctors and nurses come in they ask how your pain is from 1 to 10 with
10 being the worse pain you’ve ever had. So you tell them
and they say, “but you’re not using your pain meds; if
you’re in pain you need to use your pain meds!). So you
insist that you hate the pain meds and you’d rather just deal
with the pain. Finally they relent and let you take a much
smaller dose by mouth that dilutes the effects substantially.
Additionally the narcotics slow down the body’s digestive and
elimination system. This is the second big rite of passage to
getting out of the hospital…you have to poop. No going
means not going. So the more you use the painkillers the more
you’re slowing your system.
Since I’m pretty much a paranoid individual, I’m convinced
they want everybody drugged up as much as possible. If
they’re drugged they won’t ask for so much pesky help that
interferes with standing around the nurses station, chatting, being in
the break room and surfing the Internet.
From Recovery to Exit
I’m up from the recovery room. Wife’s gone. And
I’m in a lot of pain – more pain than I can remember
ever. You’d think they’d cut me open and pulled
something out? Oh yah they did. What a change. One
moment I’m totally focused on composing myself for the
operation. In a blink I’m in la-la fuzz land of the
recovery, and in a couple of longer blinks I’m in the hell of the
four pains. I’m using my brown pain button but the narcotic
feeling isn’t helping things. I’m trying to figure
out this whole bizarre world of the hospital with its noise and
interruptions. My roommate, an older person in for a kidney
crisis, watches Spanish language TV all night.
You keep getting different people, nurses and care assistants, as shift
changes. You’re getting a handle on what to expect and what
not to – all while dealing with intense pain and
discomfort. In the morning the doctors come by and let you know
things are fine. I had my best caregiver that morning. She
gave me a sponge bath that was a total act of gentility and
kindness. I later learned she had come from Peru where she had a
degree in psychology, had come to the US seven years ago, had started
as a cleaner in the hospital until she got here certificate to be a
patient care assistant.
Slowly through that Thursday, it seemed that I was stabilizing. I
was told that the key to showing the doctors that I was healthy enough
to get out of the hospital would be when my digestive track showed
proper elimination processes – meaning the passing gas and solid
waste. As we entered the second evening, the gas was getting
worse and worse. The pain was picking up again as the gas build
up put pressure on the internal bruising. I was spiraling
downhill in my spirits. My brother, the doctor, stopped by in the
evening and reminded me that this was a natural process, that I needed
to stop fighting things and that I should remember there were lots of
people thinking about me and supporting me. I grabbed on to
that. I wasn’t alone. I needed to let go and have
confidence that I was supported.
Thursday night was a bad night. I was pushing myself to get up
and get around because they old me that was a key getting the internal
processes going again. There is just no way of simply falling
asleep for any length of time. With great effort and pain, I
would finally get myself into a position where my body was temporarily
feeling comfortable (understanding that each movement, each shift
brought some sort of sharp pain and required the negotiation
one’s various tubes) and I would sleep for an hour or an hour and
half. Then the body part arthritic body part (shoulder or hip)
that was my main support would start crying out and I’d wake up
or one of the many hospital disruptions would wake me up and I’d
be aware of the pain all over again. I’d decide it was a
good time get my ass up and move around. I was able to do this
with help the first night and on my own thereafter. Then
I’d get back into bed (painfully), use a breathing exercise tool
(to encourage deep breathing to avoid pneumonia), try to sit up
semi-lucid for a while, get tired, try to find a comfortable
position. Doze off for an hour or so. Etc. Etc.
That night I also had a set back when a nurse put an IV tube in
incorrectly and one of my left hand and wrist got all swollen. It
took a day for that to go down and the hand could not only be barely
used but I could no longer put pressure on it without pain that further
restricted my ability to shift my position.
I started Friday still in lots of pain with the gas building up.
But throughout the day my walking was paying efforts as gas started
coming out the front. We needed help from a suppository to get
things going the other direction but I finally got my breakthrough that
night. My roommate was sent to a nursing home early that night
and they moved me to the window side of the room – a bit
cheerier. Big event in the late afternoon – they took out
my catheter. I’d figured out how to unplug the IV machine,
so I could move around on my own. With only me in the room, things were
definitely more peaceful and I rested significantly better that night.
Very early Saturday morning, I got a new roommate, Dave. He was a
really cool guy with a serious prostate infection that had sent him
into a super high temperature. A bus driver for the Hartford
transit system, he was a divorced father of two, still friendly with
his ex and a love outdoor activities and food…and a frustration
with the hospital system.
When my doctors came in during the morning they gave us unexpected
news; we could be released – right then! One problem, we
had nowhere to go. Based on what we’d been told, we’d
made our reservations for the residence hotel in Manchester starting
Sunday. Wife went to work (she’s become a master at playing
the ‘he’s an organ donor’ card. The hotel said
they could get us into a smoking room for one night and then put us in
our non-smoking room starting Sunday. Somehow she got this
upgraded to a non-smoking two room suite that we were able to stay in
until Thursday for the same price as we originally quoted.
Getting out was another exercise in frustration. When we finally
got the room committed, we told them we were going to discharge, but
the doctor had already left the hospital. 45 minutes later I went
to the nurse who had still not made the phone call. It took 3
hours until the final paper work was done. I had gotten myself
changed and ready to go in the beginning. By the time we were
leaving it was 5 in the evening and much colder than when we thought we
were actually going to live. By the time we got to the hotel, I
was incredibly cold. I jumped immediately into bed. Wife
needed to go out and get my pain meds and some food. I could not
get warm. Wife was gone for so long. I thought the pharmacy
was across the street? I started to think that I was going into
shock and that I was going to be sent back to the hospital with tubes
put back in both ends and that Wife was in some parking lot lying
bleeding. I was in as bad a state as I have ever been.
Wife came back after an hour and a half. I had started to warm up
by then. As soon as I heard her come back, one fear was
gone. She had bought some wonton soup for me and as soon as the
warm soup hit with us together, I felt an almost instant
transformation. We sat together in the living room type area of
the suite, I with a heating pad. I was transformed and relaxed. I
was out of the hospital and felt like I was back in the world.
Conclusion
It has been over a week since the operation. I am clearly on the
mend with the swelling around the incision decreasing and a continuous
but diminishing level of pain. You definitely know you’ve
been through something. Physically it’s like they took your
high performance V-6 out and replaced it with a 2-cylinder
self-propelled lawnmower engine. My brain seems to have traded in
it’s top of the line MAC for a 1980’s PC.
Emotionally and psychologically, it’s another story. How
does one process and understand the consequences of doing something
like this? The first few days after I was out of the hospital, I
couldn’t even talk about the event without breaking into
tears. Why?
I had made such a huge investment into doing this. I did not want
to fail –did not want to fail. It has to have been the
greatest personal test I have ever faced. I did not want to face
myself and say that when the chips were down and someone else’s
life was at risk, that I was to afraid to pull the trigger because of
my own fear of dying.
What if it had been some outside influence that had prevented it like
the scare with the heart stress test? That brought on another set
of fears. When you publicly announce you are going to do this and
you receive as much public support back, how do you go and tell
everyone that you were rejected? That may seem like a petty
emotion, but it was right up their on my fear list.
And there was the fear of what if something went wrong. What if the worse happened and I died or came out a vegetable?
During those first few days out of the hospital, there was this
realization that none of these fears had actualized. I had done
it. I had followed through, put my life on the line, given my
sister a chance to live again. I had taken the risk in order to
balance my karmic accounts for all the good that I had received.
Nothing had jumped up to disqualify me. I would not be a person
who talked a good game but never actually did it. I was healthy,
recovering; my wife and her future lifestyle were safe. I
don’t know if it was relief, joy, incredulity, or what but I was
overwhelmed.
Then there is the influence that all of this has had on my family that
I eluded to earlier. Just after I got out of the hospital my
oldest brother arrived to assist in the transition. My Dad and
two brothers were together to discuss how we would help my sister in
the complicated process of establishing her new regimen. This is
the first time all of us had been together since my Mother’s
death four years ago. In the interim there had been fallouts
between one of my brothers and I and one of them and my Dad. And
none of us had been close to my sister. I can honestly say that I
had thought all of us getting together was never going to happen
again…but here it was…a reality.
I also have an unbelievable wellspring of gratitude fill my
heart. Gratitude to my Wife who put her own wellbeing at risk
because she knew that this was something that I felt so strongly
about. Gratitude to God for having given me the opportunity to
show what I was really made of. Gratitude to all the medical
staff who in the clutch took care of my Sister and I. Gratitude
to my family who all rose to the occasion to help even though I never
asked or even thought about the consequences of my actions to
them. Gratitude for all those who gave us support in whatever
form from thoughts and prayers to the hotel people in Manchester.
Gratitude that whatever the magnitude of this decision it was a small
small sacrifice compared to that made by many, many millions and
millions of others around the world all the time.
So what does one make of having gone through such an experience?
I can’t say yet. It’s going to have to rattle around
in my being for a while longer. I know I’ve changed.
I’m not sure just how, but I’ve changed.
Home
Getting home on Saturday had a bit of drama. We were visiting my
sister in the hospital one last time before we left, when I received an
automated message from my good friends at United Airlines.
“Hello. This is an automated flight update message from
United Airlines. Flight 1196…from Hartford
to…Washington, Dulles will now be departing at…4:30
PM…”
I quick mental check – I remembered that there was a 2 hour wait
in Washington for our flight on to Albuquerque. And our flight
was originally scheduled to leave at 2:30 PM. That meant no
making our connection. We said goodbye to Sister and we
hightailed it to the airport. There was about an hour of
agonizing while I worked our options on the phone but ultimately we
decided to get in line at the airport. We were fortunate to get a
flight the goes through Chicago and still have our first class
seats. I was wiped out on the plane ride.
Tim de Buffalo picked us up at the airport. I had him stop so I
could give Pulisha a quick hug. Then on to our home where I
promptly collapsed and had the best sleep I’ve had since I headed
out on May 9.
Sacrifice and Purification
(Please note that this post is unabashedly spiritual in content.
If spirituality is not your thing or turns you off feel free to take a
pass.)
Well I spoke too soon when I titled the next to the last entry the
conclusion. As a number of people noted, that post offered more
in the way of question than answers. Now that I have returned
home I have had time to reflect - what is the significance to me having
made this decision and having gone through with it?
To understand what this has meant, requires an understanding of the
spiritual concept of purification. If you know how they make
metal, you know that we start with an ore subject it to great heat
(smelting) until it melts (think blast furnaces). If we want to
great an even purer form, we raise the heat even more (think making
steel from iron) which removes the impurities. Most spiritual
paths have a similar concept – that to achieve a higher level of
spirituality requires purification – and the path of purification
requires some kind of sacrifice. An example of this would be the
monastic paths of renunciation in many traditions where the renunciate
or monk sacrifices worldly pleasure for the discipline of a spiritual
path.
The tradition that I follow emphasizes that the spiritual path is about
purifying ourselves of a lifetime (actually lifetimes) of crap.
If we are fortunate, this process can be short circuited
slightly. This is through a process called Tapasya. Tapasya is a
spiritual fire. It is sort of a spiritual blast furnace that gets
rid of a whole lot of crap in a short amount of time. It is the
fire of purification. You have to have reached a certain level of
development in order to be able to withstand a Tapasya event just as an
ore has to be processed and smelted before it can be refined. Tapasya
is never ‘fun’. After all we are burning away
unpleasant stuff.
Prior to the going to off to CT, I had had a number of experiences
during meditation where I was getting the message that ‘I was
ready’ that ‘I was strong enough to accept’.
What I didn’t know was what was I in fact ready for and what was
I strong enough to accept? Now I do.
There are a number of things in my past involving how I handled my
relationships with loved ones that I have had lots of problems
with. On the surface I have dealt with just about all of
them. On the surface, the people that were affected by them have
long since gone on and shown that in fact I did deal with the
issues. But inside me, I have never been able to forgive myself
for those pasts in spite of all the assurances through word and action
from those involved.
When I got home and meditated in my own place on Sunday morning, I was
suddenly aware that those guilts, those attachments were gone.
They were cleanly and completely gone. Now it became clear what
the meaning of this experience was. I had been given the
opportunity to, of my own free will, make a sacrifice, a sacrifice of
myself. And by making that sacrifice and because of my previous
spiritual efforts, I was rewarded with the gift of Tapasya and had been
able to remove the things that had been eating at me for decades.
And on top of all this, this wave of Tapasya seems to have cleansed and
healed the issues among my siblings and parent that have extended for
decades as well.
I can tell you without embarrassment that the tears of gratitude were flowing that Sunday morning.
Now I think I really can conclude this Chronicle. I still need to
heal. This whole long, long process has taken a lot out of
me. But I see signs that gradually my energies are returning and
my wounds are healing. Hopefully my Sister gets out of the
hospital Tuesday morning. That will take a load off my mind.
I want to give my deepest thanks and gratitude to everyone who has
assisted over these last few weeks. My Wife has been an
unbelievable tower of strength and calmness. My brothers and
father totally have stepped up to the plate and supported both my
Sister and I. And all of the people all over the country and the
world that have been thinking of us, praying, sending us their
thoughts, calling, I cannot tell you how much it was appreciated.
Now the only problem is:
What the heck am I going to post on my blog that can hold a candle to this?
