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Daniel W. Stoddard of Lewisville, TX died April 3, 2006 at
the age of 36. Dan is the son of Ed and Norma Stoddard of Chester, NY and lived
in the Dallas area for 15 years. Dan served in the US Air Force as an airplane
technician and then attended Cheyenne Aerotech where he trained to become a
commercial airline avionics technician. He then worked for Delta Airlines for 13
years. At the time of his death he owned 'The Handyman at Castle Hills' and was
the founder and president of Sarcoid Life, a nonprofit organization dedicated to
education, research and support networking for sarcoidosis. Dan is survived by
his wife, son, and parents, as well as four brothers and sisters.
We will all miss Dan dearly. His dedication and pursuit of
solutions for living with sarcoidosis, and the happiness and cheer he brought to
the lives of those who knew him will always be treasured.
interest in the disease of sarcoidosis
started in the January of 2000. It was the
night of the super bowl football game, and
my heater broke. I awoke early in the
morning freezing. Yes, it does get cold in
Dallas in the winter. By the time I found
someone to fix it I had come down with a
cough. Just a cold, I thought. Well after a
few weeks the cough became worse, and my
sleep was starting to be affected. I went to
my doctor and was prescribed a cough
medicine and antibiotic and went on my way.
About a month later the cough was worse, so
back to the doctor's office. This time he
said that I had pneumonia. Another course of
antibiotics and cough drops, but 3 weeks
later I was still coughing to a point of
almost losing my breath. Back to the doctor,
this time for an x-ray. The x-ray showed
something in my lungs. The doctor said that
I might have cancer! I was floored. They
took some blood and had me back in a week
for the results. It wasn't cancer.
I hadn't always been as safe as I should
have, but when the doctor said that I might
have AIDS, I almost passed out. I had never
done any illegal drugs, and had been pretty
safe overall, but there is always a
possibility. So they asked for my consent to
test for HIV and took some more blood. They
said the results would be back in 24 hours,
so I did my own research on the internet,
and ended up scarring myself to death. I
didn't sleep all night, and when my results
were not ready the next day, I was really
worried. But after 2 sleepless nights, the
results did come back, and I did not have
But this only brought up more questions.
They decided that a pulmonologist (lung
specialist) was the way to go. It seemed to
take forever to get an appointment with him.
When the day finally came, he said that we
would have to do a bronchoscopy, and take a
biopsy (a sample) from my lung in order to
find out what I had.
After about 4 months of non stop coughing,
medications, x-rays, blood tests, and doctor
visits, they found sarcoidosis after the
lung bronchoscopy. What is sarcoidosis, I
thought. The pulmonologist said that most
people who come down with this disease end
up getting better within about 2 years, and
that I shouldn't really worry too much.
So I went about my life trying to forget
about it and wait it out. Over the next few
years I had the normal sinus infections,
colds, and a few small bouts with skin
rashes, but nothing to get all worked up
The fall of 2002 was progressing along
nicely when a small lump appeared on my
forehead. It looked like a large zit, but
lasted for months, and if you squeezed it,
nothing would come out. Not a normal zit. My
new girlfriend (at that time, now my wife)
had a plastic surgeon friend who thought it
would be a good idea to remove it. When it
came back as sarcoidosis, we were all
amazed. I was apparently healthy at the
time, no coughing, no shortness of breath,
weird. My doctor suggested that I go to a
pulmonologist to see if maybe my lung
sarcoid was active. The pulmonologist
performed lung function tests, x-rays and
allot of blood work to see how things were
doing. No apparent progression from the
x-rays years ago. We would monitor things
for a few months, and see where they went.
My personal life had taken off on a path
that I had waited 33 years for. My
girlfriend and I were in love, and starting
to make plans for our future together; 2003
was starting out as a great year. That's
about the point when my health took a turn
for the worst. It started out with diarrhea
that lasted for about 11 days straight. I
went to my doctor after about day 4, then
back on day 8, and finally saw a specialist
on about day 10. By then my body was
shutting down, and none of my regular
medications were being absorbed. He admitted
me to the hospital that day. One thing that
I heard over and over during my stay, was
"you don't look sick". Well after a few more
days of antibiotics, and yes diarrhea, they
diagnosed me with pseudo membranous colitis.
This is also known as antibiotic induced
colitis, and can appear after being on
antibiotics for a while. I had just had a
sinus infection, and a 2 week dose of
Over the next few days I felt better every
day, but had a pain in my right lower back
near the hip. Also the diarrhea reappeared
after a week, so they decided to perform a
colonoscopy to look for a colon disease.
Nothing was found during the colonoscopy, so
they performed more x-rays to look for the
cause of the pain. They found arthritis of
the sacro-iliac (basically your hip) joint.
I dealt with the pain with over the counter
pain pills for about 3 months, then the pain
progressively worsened in a very short time.
I started taking a low dose prescription
pain pill, and within a week, had to move up
to a narcotic pain prescription. My family
doctor is great, and decided to redo the hip
and pelvic area x-rays to look for
advancement in the arthritis.
The next day a call came with the x-ray
results. The arthritis was the same, but
there was a tumor on my L-4 vertebrae. A
tumor on my spine. Well as I was growing up,
nobody had explained "that any growth is a
tumor, but that many of them are not
cancerous". I had watched both grandmothers
die from cancer. All I could think was that
it was my turn.
They set me up for an MRI to get a better
image of my spine, and see just where to go
from there. After a few hours in the MRI
tube, they asked me to stay on the table
while a doctor of radiology looked over the
scans. I could see in my girlfriend's eyes
that something was very wrong. And remember
I was on narcotics at the time, but still in
a tremendous amount of pain. And laying
still on the table was one of the worst
positions to be in. After a little more
talking between the radiologist and my
girlfriend, and a bunch more complaining on
my part, they finally let me up.
The bone marrow of my vertebrae and hips
were full of something. The term leukemia
was mentioned, and I was ready to get off of
this roller coaster! Luckily my girlfriend
remembered my skin and lung sarcoidosis, and
asked if this could be related. The
radiologist said that bone sarcoid is rare,
but it could explain this. Only a bone
marrow biopsy would tell us what it was.
My father had donated bone marrow to my
uncle a few years earlier, and everything
was a success. So I figured that since mine
was just to take a sample, that it should be
no problem. Well when you pull up to a
cancer institute, reality starts to set in.
No matter what is wrong with you, if you're
at a cancer institute, it's big.
They gave me a pain medicine lollypop,
someone called it a "morphine lollypop", all
I know is it made the whole experience
bearable. You are conscious as they bore a
hole in your hip bone, and take a sample of
the bone and the marrow. With the pain
medicine all you feel is pressure. I was
cracking jokes throughout the procedure; the
doctor and nurses thought it was the
medicine, but anyone who knows me, knows
that's how I deal with tough times. Two days
later the results were negative for cancer,
and positive for sarcoidosis. The better
outcome of the 2 choices.
So here I am diagnosed with vertebral
sarcoidosis. A 33 year old male, who doesn't
fit any of the stereotypes of someone with
sarcoidosis--and who "doesn't really look
sick". I just started a course of high dose
corticosteroids, and am starting to have
less pain. The doctors think that I will
probably be on the high doses for a while,
and possibly be on a lower maintenance dose
for at least a year.
Sarcoidosis of the bone occurs in about 5%
of people with the disease, usually in the
hands. But sarcoidosis of the vertebrae is
I've found a sarcoidosis specialist here in
Dallas, but since vertebral sarcoid is so
rare he hasn't dealt with it before. This
was expected, and he seems very competent.
Due to the advanced involvement of my bone
marrow, high doses of corticosteroids
shouldn't be used for long. Long term high
doses of corticosteroids may cause bone
loss, (osteoporosis). When the bones are
involved, the sarcoidosis also causes bone
loss. Not a good situation.
I am going to start Methotrexate and lower
the dose of Prednisone. Methotrexate is an
immuno-suppressive therapy. They used to
call it chemotherapy, but I guess they don't
want to scare everyone these days. In
sarcoid patients the doses are lower than in
cancer patients, and usually the side
effects are less severe.
One of the positive things to come out of
this is the formation of Sarcoid Life.
Sarcoid Life is a non-profit organization
that is committed to education about
sarcoidosis, creating support networks,
research into the cause of sarcoidosis, and
the finding of a cure for this debilitating
Thank you for taking time to read my story.
And thank you for supporting Sarcoid Life.
October 22, 2003
Well it has been about 2 months since I
started the Methotrexate. It was started at
a low dose and tapered up to try to avoid
any major side effects. So far there haven't
been any noticeable side effects from the
Methotrexate, and I am up to the 15mg per
week dose that the doctor is hoping to
maintain me at.
As we increased the Methotrexate, we tried
tapering the Prednisone dose down from 60mg
per day. To prevent shocking the adrenal
system we would decrease the Prednisone dose
by 10mg per day, then maintain that level
for a week. If everything seemed to be going
well, we would decrease the level again.
Well I made it down to 20mg per day, and the
lower back & hip pain started to return.
That was on a Monday. I spoke with my
specialist, and he recommended upping the
dose back to 30mg. By the next Monday, the
pain was incredible again. I was back on the
We've had to keep upping the Prednisone as
the pain persisted. We're back to the 60mg
level now and are just waiting for the pain
to go away. They've upped the level on my
pain medication, but there are still times
when it isn't enough. We are still hoping
that the Methotrexate will start suppressing
the sarcoidosis soon. We really can't keep
the steroid level this high for long.
For the past 2 months I've been
trying to do my best to rest and try to get
my life back to normal. My prednisone dose
was being tapered down more slowly than
before. Prednisone is used as an immuno-suppressive
anti-inflammatory drug. It has many horrible
side effects, and I've experienced most of
them to some degree. Weight gain, increased
appetite, fluid retention, swelling of face
& neck, acne, thinning of skin, depression,
irritability, insomnia, nightmares,
euphoria, hyperactivity, nervousness, high
blood pressure, nausea, blurred vision,
decreased testosterone level, tingling in
fingers & toes, osteoporosis, muscle
depletion, and increased risk of infection
are some of the wonderful side effects that
this drug has to offer. Even at the higher
doses I have a constant low grade pain and
an occasional severe pain in my lower right
back & hip.
I've been on 15mg per week of Methotrexate
for almost 4 months so if it is going to
suppress the sarcoid it should have started
by now. I'm down to 70% of what normal lung
function should be for someone my age and
size. My most recent PFT (pulmonary function
test) showed no further noticeable loss of
lung function. For the first time in 3 years
the ACE level in my blood is actually in the
normal range. ACE stands for Angiotensin
Converting Enzyme, which is an enzyme given
off during the destruction of lung tissue.
The ACE level is often used as an indicator
of sarcoid activity in the body, however it
is only a good indicator of active lung
Overall except for the low grade back pain
things were looking pretty good. My sarcoid
specialist who is actually a pulmonologist
thought it was a good time to try and go
back to work. I'm the type who likes to be
doing something, and lying on the couch at
home gets old quick. And if I'm able to go
back to work then I must be getting better,
So a week before Christmas I went back to
work. But I didn't even make it 2 days and
the severe pain was back. Well only an MRI
will show if the sarcoid in the bone marrow
is the same or getting worse. So I'm
scheduled for another MRI on Christmas eve.
Then we can decide where to go from there.
February 2, 2004
It has been a busy month but I wanted to update everyone. The MRI
results came back and look like things might actually be slightly less inflamed.
The doctor reading the MRI also found 2 fracture on my L-4 vertebrae. He
also looked at my 1st MRI and said that the fractures were also on that MRI.
This means that I have been walking around for at least 6 months with a broken
back. Well this definitely helps explain the pain that I've been having.
Between the sarcoid in the bone marrow and the fractures of my spine we
definitely have a few things that can cause pain. They don't know if the
sarcoid in the bone marrow or prednisone had anything to do with the fractures. What's next?
February 29, 2004
Well a sarcoid lump has
reappeared on my forehead. It came back in
the same place where they removed a sarcoid
lump in late 2002. I've been doing physical
therapy to try and help the back pain. The
PT has gone well but it has not helped the
hip, back, and buttock pain. Yesterday I
spoke with my sarcoid specialist and he does
not feel that sarcoid in the bones can cause
this much pain. Well all I know is that it
has hurt for about a year and something
needs to be done. So I started doing
research on Pub med, a website that has
medical articles. I found at least 12
articles related to Sarcoidosis and lower
back, hip and buttock pain. At least the
articles make me feel a little better
knowing I'm not alone.
Along with the lump on my forehead, and the
back/hip/buttock pain, my most recent ACE
level was elevated again. We have upped the
Methotrexate again and hope that it will
work without the Prednisone.
As for the fractures on my spine, we tried
injecting the area around both fractures
with a steroid. We were hoping that this
might actually reduce the inflammation
around the breaks and decrease the pain in
the back and hip. Well the hip pain never
changed and the back pain may have decreased
for a few days, but is now back in full
force. The doctors aren't sure what caused
the fractures. Was it caused by the
sarcoidosis in the bone marrow, did the
Prednisone play a role, or was there a
congenital defect already on my vertebrae
just waiting for the right time to break?
April 29, 2004
Three weeks ago they performed
surgery on my back. They inserted screws and
wired my L-4 vertebrae back together. They
took a section of bone from my hip to help
fill in the area of the fractures. They also
used BMP (bone morphing compound) mixed with
some bone marrow to give me the best chance
of a full recovery.
Well the past few years have been quite an
education. After almost a year and a half of
severe pain I am just about pain free. The
severe low back pain is almost gone, and the
right hip only hurts were they took the bone
graft from. What a difference a little
My wife is about 3 months away from having
our first child, a little boy. And it
appears that by then I will be able to lift
him and carry him on my shoulders. I can't
wait. For so long I feared that I might
never be pain free.
I'm still on the chemo for the sarcoid and
since it doesn't have too many bad side
effects I'm going to keep taking it for as
long as needed. When I first started taking
it my doctor mentioned it may take a year or
so. It's been 8 months so far and the only
concern is that my liver enzyme level has
been up and down. This appears to coincide
with when I take my Methotrexate.
Many doctors are not that familiar with
using Methotrexate and don't feel
comfortable with the elevated levels. But
for anyone who is considering this
treatment, this is very common and unless
the levels stay high or get to extreme
levels the treatment can be continued. We
all wish for a cure for this disease, but
until that day anyone with a severe case of
sarcoid should at least discuss Methotrexate
with their physician.
I've been off of steroids since the
beginning of the year and even after my
surgery have not needed them. The side
effects from the prednisone were unbearable
and after a few months without them I really
do feel like my old self.
September 19, 2004
I'm sorry that it has been so long between updates, but things have been
progressing nicely. It has been 9 months since I last took prednisone and
I feel almost normal. I have been on Methotrexate for right at a year and
am doing great. My ACE level is still low and I rarely have any back pain.
I have appointments with my sarcoid doctor and my back specialist in October.
But for now things are great.
October 14, 2004
I just finished my visits with my back and sarcoid specialists. My back
appears to have healed nicely from the back surgery. I do have occasional
low back and hip pain, and for the past week it has been getting worse. My
sarcoid doctor decided to keep me on the Methotrexate at my current level for
another 3 months and then decide on possibly tapering me down.
A few days after this visit my doctor called
to tell me that my ACE level was back up to
160. This along with my fatigue and hip pain
means that my sarcoid is acting up again. We
are going to try a short burst of prednisone
and reevaluate soon. This news is hard to
take after feeling so good all summer and
having my ACE level almost down in the
normal range for a period of time. For it to
jump up so hi while still on the
Methotrexate is cause for concern.
February 25, 2005
I had sinus surgery a few days
before Christmas, so January was a month to
take it easy and try to recover. The surgery
went well and my sinus drainage problems are
much better. I am also more able to sleep
through the night, before the surgery
breathing while laying down was difficult.
As for my sarcoid, the hip and low back pain
come and go. But the bump on my forehead
tells me that the sarcoid is active. I have
an appointment with my sarcoid specialist in
early February, so I'll try to post another
update soon after that.
I went to my sarcoid specialist yesterday. I had blood work, chest
x-rays, and a pulmonary function test. My ACE level is elevated and my
liver enzymes are also elevated due to the Methotrexate. The chest x-rays
appear to have stabilized, no better but no worse. And my PFT shows that
my breathing is in the normal range.
So the good news is that the Methotrexate has stopped the progression of the
sarcoid. Also I feel good overall, and definitely allot better than when I
was on prednisone. But the sarcoid hasn't gone away and I still have flare
ups periodically, so it looks like I'll stay on Methotrexate for a while longer.
The past few months have been extremely busy. Soon after my last update
I came down with a bad case of bronchitis. When all was said and done, it
took almost 6 weeks, a visit to the hospital, a large tapering dose of
Prednisone and taking me off of Methotrexate. I had very few side effects
from the Methotrexate, but after so long on it, my immune system was shut down
and wouldn't fight off anything. But I'm off the prednisone also, and
doing fairly well. Only time will tell if I need to go back on something.
June was busy with my son's 1st birthday. He had a rough start to life,
but is doing great. June also was the World Association of Sarcoidosis and
Other Granulomatus disorders' medical conference. WASOG is an organization
that has most of the world's sarcoidosis doctors and researchers as it's
members. It was my first time attending, and I was amazed at all of the
countries that are involved in researching the causes and treatments of sarcoid.
Although they still haven't found a cause or cure just knowing that they are
Many ask me for more information
in my updates. They ask if I am able to get
around and how my day to day life is. I am
doing quite well. I do have occasional "bone
pain" in my hips and back. But after dealing
with a broken back this pain is only a
nuisance. I only take over the counter pain
medicine and am not currently taking
Prednisone or Methotrexate. I do
occasionally take Prednisone while trying to
get over chest colds.
I am in contact with many of you and do
enjoy hearing from everyone. I don't have
answers to everything, but I hope that it
helps. As for Sarcoid Life we continue to
try and increase awareness about this
disease. Everyone involved with Sarcoid Life
volunteers their time so all donations can
directly help our cause.
The winter months always seem to be the
worst for me. Everything that my wife or son
come down with, I seem to get and much worse
than them. I've basically been sick since
the holidays and ready for spring. The fact
that I'm well enough for this update is
actually a good sign. Things are looking up.
I also just realized that this page is
almost like a BLOG. In the future I'll
probably start posting the updates at the
top of the page. This would make it easier
to see the updates and also make it more
like a blog. Most bloggers post every day
and I don't know if I'll ever be up to that.
Please let me know what you think about a
Sarcoidosis Blog Page.
I want to thank everyone for their letters,
emails, prayers, kind words and donations to
Daniel W. Stoddard
President & Founder Sarcoid Life