A CFS Patient Sees Dr. Peterson: Part I by Corinne
Let me begin by listing my reasons for writing this.
- to share my
experiences with everyone who's interested but may never intend to see Dr.
Peterson.
- To give some
insight to anyone who might be considering making an appointment but may have
concerns regarding what it may entail
- To help
someone prepare for a scheduled appointment to see Dr. Peterson
Becoming A Patient
Like many of you I had always dreamed of seeing a real, honest-to-goodness,
CFS/ME specialist. Like most of you, over the course of 18+ years with this
illness, I have vacillated between times of doing nothing medically with times
of seeking out new treatment or alternative approaches. Usually
after a disappointing expensive visit with yet another uninformed physician or
practitioner I would throw up my hands, deciding it was all a complete waste of
energy, time and money (E, T and $) and then spend another year or two resigned
to just feeling awful and dealing with it.
My health had declined enough recently to kickstart me back into the ‘proactive
‘mode but this time I wanted to see one of the best. After some investigation
and finding that most of the notable names were not taking new patients or had
waiting lists 1 to 2 years long I decided on Sierra Internal Medicine and Dr.
Daniel Peterson.
Realizing that he too had a long waiting list, I filled out the application they
sent me, asked my GP to write a short referral, copied all my many medical
records, wrote the required paragraph or two about myself and mailed it all
back. I hadn't even seen him yet and it was already overwhelming! Pacing myself
appropriately it took two months to complete everything.
After mailing my package certified mail I waited and waited and waited and
waited…there was not a word. After communicating with the
office staff it was determined that my file had been received, however, due
to the hiring of a new office manager and a three-month absence of the head
nurse , I was told it would probably be best to refile. Yikes! Do it all again?
Grrrr….I’d have to think about this awhile.
Meanwhile my headaches were getting so bad that my GP referred me to a
neurologist. After making an appointment I was surprised to receive the phone
call from his receptionist. He was calling to cancel the appointment- not
reschedule but cancel! It seems that after receiving my records the neurologist
decided he didn't want to see me. Because I have CFS he didn't think “he could
help me because he knows nothing about it” said the receptionist. Are you
kidding me? Now that was a first for me.
If I needed incentive to refile with Dr. Peterson this was it. I’d officially
had enough with uninformed doctors. If I was going to spend my precious E, T and
$ it was going to be spent at the top. Lo and behold after redoing the
application I received a phone call within the week an appointment within the
month. Wow!
But now the hard part. Like most of you traveling is very difficult for me. I am
primarily housebound - so how could I manage a 1600 round-trip trek? Like most
of you money is not easy to come by… how much would all this cost? More than
anything I was excited but was also afraid.... How hard would this be on my
health? Would I be able to handle the many tests I knew I'd be asked to take?
Would Dr. Peterson require numerous repeat visits?
I ended up pestering the office staff was so many other questions that I felt
uncomfortable bothering them with more. (In fact halfway through the first day
of my visit I was labeled “the Queen of Questions” by Dr. Peterson's exercise
physiologist. Go figure J)
The Journey
“Queen of Questions” is not the only name I had been dubbed with by a medical
practitioner. My G.I. practitioner called me her “high maintenance” patient.
While she pretended to be joking I knew she was serious. Those of us with CFS/ME
are indeed high maintenance. It's one of the side effects of being chronically
ill.
Because of this my best option for traveling is by RV and being fortunate enough
to own one it was my vehicle of choice for the journey. Even though it was 25
years old, which gave my husband worries regarding the trek through deserts and
over mountains, they (the RV and my husband ) accepted the job.
With a fridge containing my favorite foods and beverages, my favorite
pillows, soaps and shampoos, my wheelchair and earplugs all close by the RV was
the only way I could imagine tackling the trip.
The beauty of this is that I had received permission from the property
management company to remain parked in Dr. P’s lot for the duration of our
visit. What a blessing! What turned out to be multiple visits to the office
would now simply involve a short wheelchair ride from the RV to the elevator to
Dr. P.'s office on the third floor. So on Tuesday morning, June 9th,
we hit the road. Six days and 800 miles later (we stopped to smell the roses on
the way) we arrived in incline Village and parked our 27 footer in our
designated spot. We’d made it!
Day One: the Office
The building that houses Dr. P.'s office is properly named the Centrepointe
Building as for the next week it would be the center point of my life. I didn't
think I had any preconceived notions of what it would look like but when I saw
the simple, rustic structure I was a bit surprised. After all, for me I was
visiting a place that could be considered as equal in “awe factor” as Graceland
would be for a rock 'n roll buff or Cooperstown to a baseball fanatic.
THIS WAS INCLINE VILLAGE. THIS WAS THE OFFICE OF DANIEL PETERSON, MD. THIS IS
WHERE THE MODERN ERA OF CFS STARTED IN 1984!!
In my opinion
there should have been a “National Historic Place” plaque out in front. But even
though there wasn't, reading his name in the directory gave me goosebumps. From
the day I was handed my first CFIDS Chronicle in 1991 Dr. P has been one of my
heroes. Entering his office made my heart pound. I was so nervous that when the
nurse took my blood pressure was it was skyhigh @ 110/75!!!! (Well, skyhigh
for me :)).
Day One: Meeting Dr. Peterson
First Appointment
Not
far into the first appointment I realized that I wasn't going to have to say
much. Having already studied my records and history Dr. P. didn't waste time
discussing minutiae. He immediately asked me two questions: first, “if I could
take away just one of your symptoms what would it be?”, and second “If you could
work again, would you?”. I found the first very appropriate but wondered about
the second…. until he started mumbling something about “malingerer's...
ridiculous... who would choose to live on $1000/month”. It was obvious that
after 25 years he was still frustrated about the ignorance of the public,
medical community and the government regarding this illness. I knew instantly
that I had found an ally.
It was also evident in the way he would speak to my husband, look him directly
in the eye when explaining symptoms, tasks to be taken, etc. after all, I knew
how sick I was and Dr. P. obviously completely understood that part of his job
was to help my family understand. I can explain how validating it was in his
presence. He gets it! A doctor who gets it! Wow! The miles traveled, the money
spent, the money to be spent, the energy exerted.... it was already worth it.
The Tests
At the conclusion of my first appointment Dr. P. pulled out a pad and started
writing up orders for tests…. many tests. Because many of his patients travel
far to see him it was obvious he'd have practice getting in as many tests as
possible in the short time we had. At first it all seemed a bit crazy but by the
end I was using the term use to describe NCAA tourney basketball....”organized
chaos”. Everything is coordinated to a tee and I was amazed at what was
accomplished in eight working days (10 total) we were there.
Before I get into the individual tasks let me say this. Though I had a lot of
running around (Incline-Reno - Incline - Reno) to have tests done when the
Whittemore Peterson Institute (WPI) opens in Reno in 2010 I assume it will be
closer to “one-stop shopping”. Want to see Dr. P.'s face light up? Just mention
the WPI. He agreed that it will be a major advantage to someone like me to have
the WPI is the place to go and have most everything done. Awesome!
As for me, my first stop was Labcorb just two blocks from the office. Here,
about 15 to 20 vials of blood were drawn (nope, I’m not kidding). Some were for
routine tests and others far more complicated viral (this was pre XMRV) and
immune function tests. After that it was back to the office for the one test I
fear the most... the Exercise Stress Test. I was scared to death. I was so
nervous I couldn’t stop talking during the preparation part (this is where I
earned the name “Queen of Questions”
Exercise Test
My test was performed on a stationary bike rather than a treadmill, though both
are present. Though it “only” lasted eight minutes (short of the preferred 12),
I won't kid you it was hard. As my husband put it after “I haven't seen her do
that much in years”. It was true. As difficult as it was learned a lot and I'm
glad I did it. And the truth is, the down time after was not as bad as I had
envisioned. Later, I was given the results (I flunked!) My husband said to Dr.
P. “She had a hard time with that test”. Dr. P. simply replied, “That's why we
do it”. Enough said. It's important that our bodies are tested “under load”. Dr.
P said that only 15% of the result can be attributed to deconditioning and that
the real reason I scored so poorly was because of “metabolic poisoning”. For
years I told my husband “I feel like I'm being poisoned”. Now I understood that,
in a way, I really was.
After the test and was fitted with an overnight EKG monitor. I was very grateful
that my RV was just a short wheelchair ride to the parking lot. Day One was
over. It was about 4 PM.
Day Two: Dedication
Before I describe day two allow me to digress. When I was accepted as a patient
I was told that new patient appointments on Tuesday at 9 AM. However because of
complications resulting in the cancellation of my original appointment, was
rescheduled for 8 AM the following Tuesday. So on that particular day Dr. P. was
scheduled to see two new patients back to back.
Like most of you I have seen many doctors in the past most of whom it has been
impossible to get an appointment with before 9:30. “Bankers hours” I call it.
I'm a morning person so I always ask for the earliest one so when I was
scheduled for 8 AM I was hesitant. I was assured that he would be there. I was
also assured that two new patients in succession would work just fine. I know
doctors. Most don't appear real flexible when it comes to scheduling so I was
not confident things will go smoothly.
By Day Two that had changed. Overhearing conversations between office staff I
began to realize that this office operates to accommodate as many patients as
possible. “So and so just wants his shot” I would hear or “Ok have them come in”
etc. squeeze one in here, another there. On this day I overheard that there were
over 40 patients! OK, so it didn't always work perfectly. There were times I had
to wait and one time my appointment had to be moved to the next day but the
feeling I left there with was that this office and this physician were there for
their patients not the other way around. And they're all super friendly!
My first hint at Dr. P’s amazing dedication actually occurred two years prior.
The office manager told me to call back on a Saturday to check on the status of
my application because she said she'd be doing some work in the office. When I
called the phone was answered with “Hello this is Dan”. I recognized his voice
from the “I Remember Me” DVD and I was speechl
ess. What was Dr. P. doing
there on a Saturday? If you think this was possibly a fluke hold on a moment.
From an RV in the parking lot one can observe a lot. It became a standing joke
between my husband and I as we need breakfast seated at a dinette with a few of
the lot…”the Doc’s here” my husband would say. By Day 3 I didn't have to look at
the clock to know that it was 7:25 am! Yes, 7:25 AM…. every day… even on the
days (Wed, Thurs) that Dr. P. normally does not see patients as in the research
lab instead. Hold on it gets better. The next Sunday was Father's Day….:”the
Doc’s here” I heard my husband say. Granted he ‘only’ stayed three hours that
day :). I don't know about you but there is a tremendous feeling of peace I
possess knowing that there is even one Dr. working this hard and being this
dedicated to conquering ME/CFS.
Back to Day 2… MRI - After
having my EKG monitor removed I was off to Reno for my 1:30 brain MRI
appointment. The drive on Mount Rose Highway to Reno takes about 45 minutes.
It's quite scenic but also a bit winding but my fears of motion sickness never
developed. I was exhausted but took the energy to get out of the truck to snap
some photos of gorgeous Lake Tahoe overlook secretly wishing I was well enough
to join the numerous bicyclists on the road.
The MRI was on time and went well. The machine is state-of-the-art, twice as
strong as any I had previously used. My advice: remove all your rings even
though I was told I could leave them on. With my hands across my abdomen one
ring started to burn my finger as the test began and a small blister formed a
day or two later. We were packed and at the RV by 4 PM.
Not far into the first appointment I realized that I wasn't going to have to say
much. Having already studied my records and history Dr. P. didn't waste time
discussing minutiae. He immediately asked me two questions: first, “if I could
take away just one of your symptoms what would it be?”, and second “If you could
work again, would you?”. I found the first very appropriate but wondered about
the second…. until he started mumbling something about “malingerer's...
ridiculous... who would choose to live on $1000/month”. It was obvious that
after 25 years he was still frustrated about the ignorance of the public,
medical community and the government regarding this illness. I knew instantly
that I had found an ally.
It was also evident in the way he would speak to my husband, look him directly
in the eye when explaining symptoms, tests to be taken, etc. after all, I
knew how sick I was and Dr. P. obviously completely understood that part of his
job was to help my family understand. I can explain how validating it was in his
presence. He gets it! A doctor who gets it! Wow! The miles traveled, the money
spent, the money to be spent, the energy exerted.... it was already worth it.
Day Three (Thursday, Incline Village, NV)
In
cline Village is a
beautiful town that seems to have been able to retain its down-home feel and
avoid the touristy atmosphere of some of the other towns around Lake Tahoe. As a
result it was for a very quiet and relaxing the entire time even though we were
in a parking lot. I believe the only hotel in town is a pricey Hyatt although
there are many hotels 7 miles down the road in Kings Beach, CA. The
weather was perfect for me the entire time we were there (2nd week in
June) with days in the 70’s and nights in the 40’s.
There are variety of
eateries, the majority “Mom-and-Pop’ restaurants. I saw only two fast food chain
establishments. The local market has a wonderful deli. There are parks, golf
courses, a nice library, a couple of sports bars and, of course, some of the
most exquisite homes you’ve ever seen along Lake Shore Drive. I'm sure you
already know about the magnificent snow skiing. Suffice it to say if you're
healthy and able there are a lot of things to do here… most of them geared
towards outdoor activities.
The SPECT (Note - brain images below are not from Corinne)
Today would be another full one. We would need to drive to Reno again for
10:30 AM brain Spect Scan, my first-ever, then return to Incline for a 2:30
appointment with Dr. P. (no nap today). This was the second day after my
exercise stress test it was difficult to get myself out of bed. Not because of
soreness, mind you, but of extreme weakness. My legs felt like cooked spaghetti.
I had expected some muscle soreness, you know, the kind we used to get when we
wer
e healthy and worked out - the normal lactic acid sore “quads and hammies”.
It never happened. I’m not one of the PWC/ME’s who suffers from a lot of muscle
pain so someone else's situation may be totally different, however, I still felt
it quite unusual to use muscles I hadn’t used in years and not experience
soreness.
Dr. P. agreed. We came to the conclusion that if I were normal, a.k.a.
healthy, I would have produced lactic acid is a byproduct of ATP (energy)
production. So what the stress test revealed was that I was not using the usual,
appropriate ways to produce ATP. In fact, my heart rate never really rose
significantly and I never felt my respiration get uncomfortable. Nor did I feel
close to breaking into a sweat. As a former personal trainer this seemed weird
to me. It made me wonder where my ATP was coming from - and no wonder I had so
little of it (metabolic poisoning).
In reference to this Dr. P. made reference to the CDC website which still
mentions exercise in the “treatment’ column and how this irritates him. He
looked me in the eye and said “Exercise will make you worse”. If he was
referring just to me particular I don't know what I do know is that my body has
been telling me the same thing for 18+ years.
Okay…back to the SPECT. If you've never had one, that me tell you this
test was MADE for PWC/ME’s!! Other than the Chromium 51 Blood Volume
tests I took two years ago, this one was as easy as they come. Example: the tech
draws some of my blood and he leaves me in a darkened room, on a recliner... and
covers me with a cushy blanket. So far so good. He tells me not to move, talk or
open my eyes if I don't have to…”OK”! He then tells me to rest for 30 minutes
while he labels the blood with radioactive whatever. Then he says he'll quietly
sneak back into the room, re-inject the blood, and then tiptoe out leaving me to
nap for an hour!! I can do that!! After the dye is set in my very relaxed
brain I am brought out to lie down under a camera that rotates around my head
and takes pictures for 30 minutes. Did I say it was going to miss my nap today?
Not!
Decisions & an Irritating BP Monitor (Day 3- cont)
First Test Results: After the
SPECT we return to Incline for my first appointment with Dr. P. since
Day One.
I’m curious about any preliminary results might have. He discussed with me my
‘failed” exercise stress test, results of the 24 hour EKG (heart rate is low), and how some of my blood tests - the general ones I usually have done annually -
were normal, as expected. Oh, but here's the clincher - the evidence he needs to
convince me to do one more test; my brain MRI showed 10 to 12 “small punctuate
signal changes involving the subcortical white matter” or more familiarly known
as UBO’s (unidentified bright objects) - that many PWC’s exhibit. Reason enough,
in his opinion, to do the “dreaded” lumbar puncture, better known as a spinal
tap.
I’ve already mentioned that I had received little advice before I left on
my journey.
- SH said, “Remember, Dr. P. is a research doc. He likes to get to the point
and is not inclined to “chit chat”. And remember to stay well hydrated.
(Excellent advice considering the elevation, the amount of blood drawn, and the
exercise test).
- CJ said “Be prepared to have a spinal tap. I hear he loves to give them”
(another reason to stay hydrated!)
- MJ said “If he doesn't recommend a lumbar puncture I would demand one. I
would not leave there without one…who better to do it?” (Amen!)
So silently I was already resigned to the fact that I was going to do the
dreaded L.P. but I suppose Dr. P felt the need to convince me and with the MRI
results in hand he was chomping at the bit. I mean I could have MS, right? I
knew I didn't have MS and I told him so. I told him I'd have to think
about it which made him ‘sweat’ a bit J.
Actually the real reason for the hesitation was time. This was
Thursday and L.P. could not be done until Monday because of issues getting the
fluid specimen to the lab in time. And then there’s the required recovery time -
lying flat for 48 hours after the test. All of this required a big change in
plans. We would have to remain in Incline Village an extra five days.
In the end, I took MJ’s advice (“Who better to do it?”). I could get it
done somewhere at home but they would not take the amount of fluid Dr. P. takes
and they would probably only test it for MS and other obvious infections,
whereas Dr. P. would have examined for various viruses, lactate, amino acids,
etc. and he would freeze the sample for future reference. His staff told me that
he is one of the best and doiing the procedure (must be all the practice J).
They smiled and added….” he also does a great colonoscopy!”
This was really the only difficult decision I had to make the entire
visit. Dr. P. and his staff pretty much take control, unlike my experiences of
the past 18 years where pretty much nobody did or suggested much of anything.
Instead of blank stares, here I received goal oriented ‘organized chaos” and I
pretty much sat back and held on for the ride. Besides, whenever anything became
difficult (physically) I would remind myself why I was here and that it wasn't
only for me. I don't claim to be a martyr or a guinea pig but my fellow PWC/ME’s
who knew I was taking this trip told me numerous times that I was “doing it for
them, too.” If there was any way my tests would add anything to the research WPI
and Dr. P. were doing I was all for it. This is what gave me the strength to say
“Yes” to the dreaded L.P.!!
Blood Pressure Monitor - At the end of day three, my
husband wheelchaired me back to the RV with a 24 hour blood pressure monitor
cuff attached to my left arm along with a small box that hung around my neck
to record the results. Have you ever found yourself so totally fooled by
something... something that you thought would be so easy and it turns out to be
the biggest pain in the rear??? I never thought twice about it until I was
wearing it. The cuff would inflate every 15 minutes during the day and
then every hour during the night. Have you ever tried sleeping with a BP cuff
inflating every hour? Ha! How about tossing and turning and making sure the box
around your neck doesn't strangle you?? And if that cuff inflates when it has
slipped down to your forearm or when it has twisted enough that the sensor is on
your tricep rather than your artery….”BEEP”….then a huge “E” shows up on the
display. You know, like the big “E” the shortstop gets when he boots an easy
ground ball - the big E. for ERROR! I can't tell you how many big “E”’s I got.
Needless to say I did not sleep well that night after returning to monitor the
next afternoon, I had three days to do nothing but rest and prepare for the
dreaded L.P.