Sinonasal Sarcoidosis: Getting My Nose Out Of Joint
It took a rather arduous journey to arrive here. From beginning to end, when foot met pedal, slip sliding through distant New Jersey neighborhoods, to arrive at my final destination — at least for that day — I was hoping for the best. The town of Montclair, New Jersey, was not all that different than the suburban town of Linden I grew up in. It may have seemed a bit more upper class, but even as a child that’s kind of how we all saw “northern” towns. A little above us — in more ways than one. But on this day, I cared less about the affluence of this northern town, and more about finding the place I was seeking. Number one Bay Avenue. Yet another new doctor’s office in a litany of new doctors offices — past and present. Even two different mapping applications couldn’t direct me to the correct destination. I needed to pull over and call the doctor’s Rutgers Newark office to be finally put on the proper path.
I was originally directed to Dr Evelyne Kalyoussef — also of Rutgers University Hospital — by Señor Pulmonologist: Dr Andrew Berman. He was the one who proposed my chronically recurring post nasal drip might be caused by Sarcoid related Sinusitis. By what, you say? He said several of his Sarcoid patients have it. Oh boy! Another gift from the “disease that keeps on giving”! Can I get that gift wrapped? Obviously so!
I met with Dr Kalyoussef in her Montclair office at Mountainside Hospital. It was the furthest from Asbury Park I had traveled, so far, to see any specialist. But when it concerns Sarcoidosis — and doctors who know the disease well — no distance is too great.
After filling out the prerequisite mountain of paperwork, vitals were taken by the doctor’s assistant. As Dr Kalyoussef entered — smiling widely — I was immediately put at ease. Her demeanor was cordial, her methodology and questioning, right on point, and her “bedside manor” was quite comforting. She listened to my history intently, laughed at my Sarcoid related humor — I HAVE a routine — and she commented: “For someone who has gone though so much, you do have a good attitude. And I love you can laugh at all this”. My response: “If I didn’t laugh about my predicament, I’d be rolled up in a fetal ball in the corner of a padded room — with a view.”
Once the Q&A period was over, it was time for the real investigation to begin. Check my lungs, my ears and then my sinuses. She first sprayed my nose with a mixture of something to clear out my sinuses, and lidocaine to numb. Dr Kalyoussef used a flexible fiberoptic endoscopy camera to see far into the great unknown. Once my sinuses were numb enough, she started looking at the walls of my nose, and well into my throat and sinuses. I’m still waiting on unframed 5 x 7 inch prints for my photo album.
When she was done checking everything, including my larynx, Dr Kalyoussef told me Dr Berman’s suspicions were indeed confirmed. She saw several yellow spots in my nose and into my sinuses which she knew to be “noncaseating granulomas”. Granulomas are the sand like substance the body sends to wrap around and overcome a germ or foreign invading body, in the human body. In a Sarcoid patient — it is theorized — we don’t manufacture the enzyme to dissolve said granulomatous masses. So in the body of a Sarcoid patient granulomas can gather in any tissue, organ, bone and form rock-like masses. Depending on the severity of the mass or the density of granulomas — which can also scar tissue into non-functioning tissue – the doctor will decide on treatment, if any. Treatment usually is prednisone or other steroids — Sarcoid is yet another inflammatory autoimmune disease.
Dr Kalyoussef assured me that the even though the noncaseating (non-dissolving) granulomas do exist, there is nothing that can be done other than continue with my nasal Flonase spray twice a day. She offered: the steroids in the spray will help keep the noncaseating granulomas in check — and can possibly shrink them — hopefully. To help with the post nasal drip — nasal saline 3 time a day. Other than that — she’ll see me in three months for a follow up — unless things get worse. Which is always the cheery tagline from most Sarcoid-related doctors.
All in all I was impressed by Dr Kalyoussef. Add her to the growing list of Joe’s advocates!
For me, unfortunately, now comes the difficult part; trying to not overthink or project. I have this disease. It will never go away. They will likely find no cure in my lifetime — far too little research and funding. It can spread to any part of my body, including my nervous system, or my brain, or any other bone, or organ. It can cease my existence. But then again — so can a truck while crossing the street.
My next journey will be to a neurologist — Dr Machteld Elisabeth Hillen — also a fellow at Rutgers — also recommended by Dr Berman. She will be checking to see if Sarcoid has effected my brain and or nervous system. This is where — for me — the real fear starts to percolate and become real. Too real.
With all the issues I’ve had in the past year and a half with lethargy, “fuzzy brain”, memory loss, difficulty in focusing or following a conversation, weight gain — my brain & nervous system really do need to be looked at.
So my job, in the next few months, is to stay in the moment; to not project. Easier said than done. But I’ve had ten plus years to perfect this way of being. Sometimes I’m good at it and sometimes — my permanent press is a mess! And that’s okay too. Just one day at a time. One moment at a time. One second at a time — if need be.
And like so many other times — I wait. I wait for more information from my list of advocates — whom I entrust with my life — and together we plot out the next steps down this slippery path that is living with Sarcoid. Hoping. Wishing. Wanting — to come out as unscathed as I possibly can — from a disease — that for some — shows no mercy.
This is Joe — “Livin’ La Vida Sarcoid”.