For me, this all started in 2001 when I was diagnosed with Psoriatic arthritis in my L5-S1 joinT. It was agonizing, I literally couldn’t stand straight, and I was only 30. I was put on Methotrexate in 2002 and things got better. Then in 2005, 2006, and 2007 I basically lived with bronchitis or pneumonia. I had to go off the methotrexate and the pain came back. In 2008 I was on a business trip flying to Hartford, CT when I started having intense chest pain. By the time the flight landed and I reached the first security guard all I could say was “Help” and then passed out.

I was taken to a very good hospital where I spent nearly a week being checked for a stroke or heart attack with just about every type of test imaginable. They found nothing and said I should be checked for a hiatal hernia. I went home, a GI doctor rubber-stamped the hernia diagnosis and put me on Prevacid, which kinda helped so everyone said that must be it and moved on. In 2010 I had another scare and went to the local ER and they hooked me up. Nothing. Did a stress test. Nothing. Stroke tests. Nothing. I was told to get my hiatal hernia checked up on and sent on my way.

So I went to an internal surgeon to get the hernia fixed. During the Upper GI scope the doctor found nothing, just some evidence of minor acid reflux, but no hernia. Later that year I was back in a ER with the same symptoms. Same routine. Then again a few years later. Nope, nothing, nada. Without a hernia to blame every doctor said it had to be my weight and marched me down the “lose some weight” path.

In January 2018 everything changed. I once again found myself in the ER for chest pain and was shipped off to a reputable hospital in Nashville where I would get the first clue to this nearly 2 decade mystery. They did the standard stress test and stroke evaluations, but this time my ECG was just a little off. Nothing scary, but enough for the cardiologist to do a quick bedside EKG. Heart looked good except some “thickening of the heart wall”, which he didn’t elaborate on and prescribed me Verapamil which he said would help the swelling.

Starting on February 23, 2018 I spent two visits in the local ER followed by four more visits to Vanderbilt ER with a severely swollen tongue. Nobody could figure it out. At all. I’ve seen three ENTs, a cardiologist, a neurologist, a rheumatologist (who was the first person to begin to sniff a possible cause), a dentist specializing in tongue problems, an allergist and several visits to my PCP. I spent most of 2018 with a swollen tongue, losing 17 pounds in the first two weeks because I literally couldn’t eat.

In November 2018 I started having chest pain again. About a week later it was accompanied by shortness of breath. Finally, at 11pm on November 15 I was taken to the local hospital by ambulance because I was hyperventilating and was becoming confused. Local ER put me in a CT scanner and spit out a diagnosis of pneumonia and sent me on my way. We followed up with my PCP first thing in the morning and he immediately sent me to Vanderbilt, which probably saved my life. I didn’t have pneumonia, I had two collapsed lungs. The ER got me stabilized and I was admitted to be treated for possible infections that may have contributed to the condition I was in. As a precaution they had a Cardiologist look at me and he ordered every-other-hour ECG scans. About 11pm he come to my room with the a portable ultrasound machine and asked to look at my heart as he had seen some troubling trends in my ECG. He could see that my heart was beating very hard and combined with the ECG readings he immediately sent me to surgery to have my arteries scoped.

The good news is that I have the cleanest arteries of anyone that had ever been put on that table for a scope. The doctors even called my wife to tell them I was about to be scoped because it looked like I was actively having a heart attack. Another false alarm?

When I got back to the room the Cardiologist came back in with a better ultrasound machine and said that he could see spots of swelling tissue on my pericardium but that they weren’t something that would cause my condition and that he would schedule a follow up in a month. I spent a few more days recovering from the collapsed lungs and went home, not feeling much better than when I entered the hospital.

On December 5, 2018 all hell broke loose. Pain level: 10. Anxiety level: 11. Back to Vanderbilt we go (totally bypassing the local hospital this time) and they immediately put me in a CT and could see that my Pericardium was as much as 4cm thick in spots, but no thinner than 4mm anywhere. In two weeks it had gone from a couple of questionable spots to massive swelling all around with some extreme swelling. I was wheeled into the OR early on December 6, 2018 where they performed a complete Pericardiectomy. The team of heart surgeons at Vanderbilt saved my life. They sent samples of the removed Pericardium to various labs, including one at the University of Washington where they keep a genetic catalog of practically all known diseases.

Meanwhile, I spent a week at Vanderbilt recovering from the open-heart surgery and everyone was feeling pretty good about things, and just to make sure I didn’t have a major infection, they put in a pic line and sent me home with really, really strong antibiotics. Everyone from Cardiology to Infectious Disease to Rheumatology to the dentist down the street expected to find the exact match at the University of Washington and we would pinpoint that specific infection and kill it once and for all.

Except there was not a single foreign organism — virus, fungus or bacteria — in the samples. Everybody was shaking their heads and I wind up back at Vanderbilt on December 14, 2018 with more severe chest pain and shortness of breath. My heart was fine. My lungs were back to normal. They do another CT scan. A film of tissue 2mm thick had started growing on my heart. This had everyone even more stumped than before. And the tissue was growing daily. About two days into this visit one of the Rheumatology Fellows was examining samples from the surgery and recognized the type of cells from literature. He looked up treatments and Kinaret came up as the correct medicine to reduce swelling in this particular type of cell. Nurses immediately started giving me Kinaret and within 24 hours I felt better than I had in over a year. Overnight.

I continued to progress and was finally released on December 21. I have to say that the amazing care and the absolute push to figure this out was incredible. Three teams comprising some of the best medical minds in the world (Cardiology, Rheumatology and Infectious Disease all had full teams on this) worked around the clock to figure it out. I am certain that there are very few places where I would have had a favorable outcome as my body was rather rapidly trying to kill itself.

Unfortunately Kinaret is very, very expensive. My co-pay is $3200, per month. CO-PAY. Fortunately the manufacturer of Kinaret provides $10,000 per year of co-pay assistance, but I’ve gone through that now and the Rheumatology team is trying to find a suitable replacement because my immune system is already fighting back.

When I first went on the Kinaret my psoriasis reduced by close to 100%. Areas of my body that had been scaled over for a decade were clear. 4 months later and the psoriasis is once again a problem. The Rheumatology team is very concerned that it’s coming back this quickly. I recently had elbow surgery to fix a nerve problem and had to stop the Kinaret for about a week to prevent infection and at the end of that week my chest was hurting pretty badly. About two days back on the Kinaret I felt much better, but the psoriasis simply exploded during that week.

And a new problem is creeping up. I’m starting to have short periods of time where I cannot control my hands. They shake and refuse to follow orders. It happens only for a few minutes and has only happened three times, but it’s damn scary.

Also, my tongue is starting to swell again.

At this point I have no delusions that this is ever going away. The real question is whether the doctors can stay one step ahead of it so that I still have some quality of life before it’s all over. I used to beg to die when the pain in my back was so bad that I was at a 9 at all times. I begged to die when my tongue was so swollen that it wouldn’t fit between my teeth and was thus being chewed constantly, which exposed a wound that caused pain even worse than what I had experienced in my back. But when I really was about to die I chose to have the open heart surgery that saved my life.

Make no mistake, recovering from open heart surgery sucks… really, really badly. But I’ve decided to fight on as long as the doctors can keep up. I have three children and a wife who all love and need me, so I’m not giving up. But I do hope that I never wind up on the operating table again because my body has found a new and interesting way to kill itself.