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.
 

Introduction:  Fall 2003
My personal 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 HIV.
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 over.

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 antibiotics.

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 very rare.

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 disease.

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 narcotics.

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.
 

December 23, 2003
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 destruction.

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, right?

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?
 

March 3, 2005
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.
 

July 10, 2005
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 looking helps.