“You should go get that checked out,”

A few years back, in the fall of 2017, I had a hard partying, NYC weekend.  When the dust settled and Monday came around, my stomach was hurting.  I thought somewhere between drinks, I had gotten some food poisoning.  I’m not one to complain about pain.  I have a pretty high threshold but this pain was getting bad. The pain had moved down into my right side.  I thought I might have appendicitis. It got to the point that I needed an emergency room visit. I’m not a fan of doctors and hospitals but this warranted a visit.

Jen and I got in a cab and headed to Downtown Presbyterian emergency room in Lower Manhattan not far from our apartment in Battery Park.  The nurses and doctors started me on fluids and scheduled me for a CT scan of the area emitting pain.  Since my pain wasn’t an emergency situation they shuffled me around on a gurney and parked me where they had room.  I ended up, for the most part, in the middle of the action. Jen sat on a small uncomfortable chair next to me. We witnessed major life and death situations right out of a medical TV show.  It was literally happening just a few feet away.  Talk about, feeling like you’re in the way.

An hour or two passed and I was up for my first ever CT scan.  You always remember your first.  Getting on the table, sliding into the tube, the breathing, the sounds, it’s a bit emotional.  It was quick and I was back on the gurney, back, in the way of everyone.  The nurse, in the middle of my IV change, walked away and didn’t notice I had begun bleeding onto the floor. So, not only was I in the way but I was now bleeding all over.

After about four hours in the ER, a doctor came to see me. The good news was, it was just a bacterial infection in my intestines and I could finish out the IV and with a prescription, be on my way. BUT, when taking the CT Scan of my digestive tract they got the bottom of my lungs in the picture and spotted eleven small nodules at the bottom.

“You should go get that checked out,” he said.

Well, that will get you going. All kinds of thoughts were going through my head. I took it hard, thinking I had cancer and probably wasn’t going to make it much longer in life.

“It’s the big one” as Fred Sanford would say. Look it up.

So, I partied even harder, thinking, to myself, how I was going to live out my final days. I got pretty dark. In 1986 I was 17 and my father died of cancer at the age of 42. So, I thought making it to 50 would be a miracle and I was alright with that. I was 49 so 50 was a year away. It seemed right. I lived most of my youth and adult life thinking death was always coming soon. Not to get into it, but I never thought life was great when I was a kid. It had its moments, but it had more misery than happiness. The experience of my uncles death at an early age kind of put a grey fog over my mind. My friend, depression and his buddy death, were always by my side. I was diagnosed at an early age but I learned to hide it and function normally. I could fool any psychiatrist by the age 12. Although, they may have been bad at their jobs. Good old mom sent me to lots of therapists and even group therapy. I believe she had a therapeutic dependency. She was in therapy all the time.

In December of 2017 I saw a Pulmonary specialist and she scheduled a bronchoscopy with transbronchial biopsy. On January 26, 2018 I had the surgery. The results came back as benign. And I was kind of crushed. I thought I was on my way out. Three months of dark depression, soul searching and hard partying got me to a place where I was ok with seeing the end. Instead I was diagnosed with Pulmonary Sarcoidosis.

Not much was known about sarcoidosis back in old 2018. At least the doctors I went to didn’t seem to tell me much. My specialist did say that it was wiser to see what becomes of it before taking medication for it, because the medication can be far worst then the disease. So we took the wait and see approach and because of my dread of going to the doctor, that was fine by me. I did not see another doctor until I moved from NYC to SEA.

When we first got to the Seattle area in November of 2020 it was still just Pulmonary Sarcoidosis. By 2021 my blood pressure began to climb. I had a primary care provider and a cardiac doctor. They did not know anything of Sarcoidosis and just went with trying to change my blood pressure meds. I finally got in with a pulmonary doctor in November of 2021 and she started some tests and scans. My lung functions were fine but my blood pressure was climbing higher every visit. The doctors couldn’t figure out what was happening with my blood pressure until they started focusing scans on my heart.

Around February-March of 2023, about 2 1/2 years after arriving in the PNW, the diagnosis changed to Cardiac Sarcoidosis as well as Pulmonary. Cardiac Sarcoidosis spreads scar tissue across your heart causing the tissue to become useless. In April and May of 2024, I started treatment to subdue the Cardiac and Pulmonary Sarcoidosis. The treatment was high doses of Prednisone and Methotrexate. Methotrexate is awful. It is worst then the disease it is trying to cure. On June 6, 2025 I got an appointment with Dr. Ganesh Raghu, a specialist in Sarcoidosis at University of Washington Medical Center. He changed my meds to Mycophenolate and Prednisone, which started on September 22, 2025. Mycophenolate is used for organ transplant patience. It reduces the chances of the body rejecting the organ. It’s no joke, but the side effects are much better than Methotrexate. 😃

When I look back on my life I remember times I had massive crippling fatigue and pains in my joints, swollen lymph nodes, skin rashes and color changes on my arms and around my eyes. I had these symptoms as early as 18. They came and went. I thought, like depression, it was just something you dealt with. Who knew?

In the end, this is what I have. I’m 57, far surpassing 50. I can’t say it’s been easy and suffering from depression doesn’t help but we all have our shit to deal with. I’ve been on Prednisone almost two years now. Long term use of Prednisone is not good and has really been messing with my mind. The mood swings can be difficult. I’m not looking for sympathy or special treatment from anyone. Not many people know what it is or that I have it. I just thought if I wrote it out it could be a reference for anyone who might want to know more about it.

I have been on the NEW treatment since September 22, 2025 along with three different heart pills. My next PET CT Scan is next week February 03, 2026 and a follow up appointment with Dr. Raghu on February 18, 2026. So wish me luck hopefully it is on the mends. It is still possible that it stops spreading..

John Hopkins Medicine

Sarcoidosis is a rare disease. Its cause is unknown. It's linked to an unusual inflammation called granuloma. Granulomas are groups of inflamed tissue that can affect how organs work. It turns healthy tissue into scar tissue. Sarcoidosis occurs most often in the lungs and lymph nodes. But it can occur in almost any organ.

Sarcoidosis in the lungs is called pulmonary sarcoidosis. Some people have this disease along with sarcoidosis in other parts of the body. Other people have only lung disease. In rare cases, people have sarcoidosis in other parts of the body, but not the lungs. Pulmonary sarcoidosis changes the structure of the lungs. It can affect your breathing. Sometimes the lung inflammation gets better on its own without treatment. But some people have an aggressive form of the disease. This causes lifelong (permanent) loss of lung function, even with treatment. Symptoms may be a bit different for each person.

Symptoms may include:

Shortness of breath that often gets worse with activity ✔

Dry cough that won't go away ✔

Chest pain ✔

Wheezing ✔

Extreme tiredness (fatigue) ✔

Fever ✔

Inflammation of the eyes and pain, burning, blurred vision, and light sensitivity ✔

Night sweats ✔

Pain in the joints and bones ✔

Skin rashes, lumps, and color changes on face, arms, or shins ✔

Swollen lymph nodes ✔

Weight loss - I wish!

Symptoms of cardiac sarcoidosis include:

Chest pain ✔

fainting (syncope) Not yet!

Fatigue ✔

Irregular heartbeats (arrhythmias) ✔

Palpitations ✔

Shortness of breath ✔

Swelling in legs from fluid excess - Not yet!

Symptoms of cardiac sarcoidosis can be life-threatening. Ya think?

☠️