Sarcoid...a Modern Medical Enigma?

It started with hoarseness, a cough, and a general feeling of exhaustion.  Flu or cold symptoms, right?  Next the hoarseness took away completely his beautiful baritone voice.  Even a whisper became a severe effort.  How can you be an actor, attorney, or singer, without a voice? Then the cough went deep, deep, down into Nyle's incredibly broad, barrel of a chest.  The cough became so powerful that it would literally drop him to his knees.

At that point I became the Nagging Nancy wife.  (No offense to any of you Nancy's out there...it is a lovely name it is just an example of alliteration which I enjoy).  "Nyle, it's time to go see the doctor.  At the very least you need to get on antibiotics."  He HAD virtually NO trust in doctors.  It didn't help when his beloved brother died at the early age of 42...from an infection he picked up in the hospital!

Finally Nyle agreed to go to the doctor.  She listened to his lungs and said, "I think we need a diagnostic test of your lungs."  That would be easy for most people.  Nyle was never, EVER an easy patient.  Any test of your chest is difficult when the simple physical space of your body is so immense.

We were very nervous when the doctor called us in quickly after the test.  (Any and all tests took a VERY long time to return...it took 4 months to diagnose me with breast cancer).  We were in the Kaiser System.  To give you an example, I once had a partially blocked intestine.  Since it was an emergency it only took six months to get the surgery to repair the blockage.  (After all it wasn't totally blocked, right?)  NOPE, NOT EXAGGERATING....six, long, miserable months.

The doc explained that the lymph nodes in Nyle's chest were enlarged.  They feared that he had Hodgkin's Lymphoma or some other type of cancer.  I had battled breast cancer two years before.  It seemed truly a nightmare to think that now it was Nyle's turn to battle cancer!

 Nyle went into the hospital for a lymph node biopsy.  He had the biopsy the day before our 10th anniversary.  That amazing man still had flowers sent to me at home for our anniversary, (he called from the hospital!)

The doctor explained that Nyle had a rare incurable disease.  (I hate these words when delivered by a clinician, rare, unique, unusual, incurable...HATE THOSE WORDS!)

"Nyle," she began, "The good news is that you don't have cancer.  The bad news is that you have an incurable disease called Sarcoid."  She didn't know much about the incurable, disease so Nyle went home and looked it up on the computer.

The first thing that he read said, "Sarcoid, is a modern medical enigma...it seems to be most common among AFRICAN AMERICAN MEN.  Not AFRICAN men...they had to have the combination of American and African genetics.  To the best of Nyle and my knowledge he has absolutely no African genetics...we have since learned that apparently those of Danish descent are also vulnerable to the disease.

The disease could strike any part of your anatomy, and it could move from one part to the other.  The most common cause of death was heart attack.  (The physiology of the disease granulates any soft tissue that it becomes involved with).  The second most common cause of death was from suicide.  The disease hardens soft tissue.  I think anyone can imagine that making your lungs, heart, or any other part of your body would NOT make you feel any kind of good!  In addition, the physiology of attack by the Sarcoid would definitely repress Serotonin, Neurepinephrine, and Dopamine production.  These are the three chemicals that our brains need to maintain a simple sense of contentment.  With a short of any of these three chemicals you WILL start struggling with clinical depression!  So, you feel terrible physically, and then you are so blue that you can't bear it?  Who would be surprised that someone would choose to end that type of suffering?

Nyle's disease had attacked his vocal chords, lungs, and heart.  There is no answer to why or when this disease may strike.  It can cause lesions on your skin, and granulate your skin...or it can petrify your internal organs.

We were referred to a pulmonologist.  (A lung specialist).  He was a most charming gentleman.  He was extremely well read, and intelligent.  He and Nyle quickly became kindred spirits.  Dr. Nottingham was a rich blessing.

What a wild ride followed the diagnosis.  Nyle was put on massive doses of Prednisone...a steroid.  Your appetite climbs out of sight...you feel as though you MUST have food in your mouth at all times.  You gain weight, even if you are living on nothing more than water.  Nyle's weight ballooned to 375 pounds.  The steroids made his already uncontrollable diabetes even worse.  His blood sugars were almost always 300 and above.  Then randomly they would drop down to 40, 50 which can cause Diabetic coma and death.

He was in bed 24/7.  He developed Benign Positional Vertigo (another unusual, and unique disease, STILL HATE THOSE WORDS)!  Now he would cough until he threw up.  He was too dizzy to get out of bed.  Yet he would force himself to sit in a chair for 5 minutes at a time almost every hour. 

He had respiratory infections, one after another.  He was desperately ill.  Dr. Nottingham called Nyle at least once a week.  He didn't really ask Nyle about his health except in passing.  They would discuss literature, politics, world events, current events, anything and everything.  This was a grand blessing for Nyle. Being stuck in bed for months at a time can make you feel SOOOO ISOLATED!

I was convinced that Nyle was dying.  I didn't tell Nyle that.  I tried to be as positive as I could be.  Yet the stress was wearing me down.  We had two small children, one 6 and one 9.  I was working a part-time job as Childcare Supervisor at a Racquet Club.  I had my own list of medical issues. 

At one point I asked an Elder from our church to give me a blessing.  It was such a sacred thing.  I was told not to focus on Nyle dying, but to enjoy any and all time that we had together.  One of the great lessons I learned from this incredibly difficult part of our life was to NEVER give up when someone faces health trials.  Even if the doc says "You have 6 months to live."  God knows more than any doctor....he is the ultimate physician.  There is simply no benefit to be gained by "giving up."  Make the time you have on earth count for as much joy as possible. 

Our girls would literally run from the car after school in to their beloved Papa.  He was ALWAYS there for them.  They would have a snack with him.  We would all watch TV, or play a game, or nap.  Tough times, and yet such profoundly joyous memories!

Amazingly, after a year Nyle's health started to improve.  His voice started to return.  His coughing lessened until it stopped.  The Benign Positional Vertigo got much better (never completely went away but went away enough for him to have a quality of life.)

I made a goal that I would NEVER forget what a miracle it was that Nyle not only lived through that tough medical time, but got back his voice, and was able to sing, and act again!  The Sarcoid would pop up every once in awhile in random places, like his tongue?  It never completely left him, and I'm pretty certain that it was one of the factors that led to his death at 54. 

Yet it WAS a miracle that I got to keep him for another 18 years beyond that time!  I got to sing with him, and listen to him sing, and perform.  Lest any of you feel skeptical that this was a true blue, dyed in the wool miracle I want you to think about what the doctor told us when Nyle's Sarcoid went into remission.  "Nyle, now that you are doing so much better I just have to tell you that I was convinced that you would not live longer than a year, if that long.  I have never seen a patient with symptoms as severe as yours that lived."

Oh I believe that the Prednisone and other medical treatments helped.  Yet, other patients with the same severity of disease as Nyle received the exact same treatments and DIDN'T live. 

It reminds me of the priorities, the privileges, and blessings I have had in my life to post this blog.  Thank you any who read this for letting me share and rejoice in this miracle in Nyle and my life together.