A Little About Me
Hello and welcome to my blog. This page is a brief story about my journey into my Life With Sarcoidosis and the different conditions it has brought into my life.
I am the third of three boys. I was born in the Caribbean and lived there until the age of 24, when I moved to New York, NY. People seem to put a lot of emphasis on race when it comes to sarcoidosis statistics, so for the benefit of the curious (although I fail to see what race has to with it), my ethnic break down is as follows. French, Dutch, English, Carib Indian, Chinese and I am sure some black in the mix somewhere. When people meet me for the first time, they are shocked that I am from the Caribbean, well, because I am not black. My accent also throws them off as I went to catholic schools run by Irish Priests, so I was told that my accent sounds “BBC British” (whatever that means), South African, Irish and even Egyptian.
I am married to the most beautiful, supportive and patient woman in the universe. We met when I was 19 and she was 16. She was the girl next door when I moved into a new neighborhood, and we have been together ever since. We have no human children, but we do have three dogs and two cats that are our babies.
A few people asked me about my religious beliefs and all I can say is that I was brought up in a house that never focused on religion, but I went to catholic primary and secondary schools, and I am not a practicing catholic. I follow no religion, but instead I glean what I think are the positive messages from all religions. I therefore think of myself as a spiritual man and the universe is my church.
My Medical Journey
All of my life I always had that feeling that something just wasn’t right with me physically. I went to many doctors that made a guesstimation that I had many different things wrong with me from Tourette’s syndrome to my imagination. They would run tests for what they thought was wrong with me only to come back that I was a very healthy man and nothing was wrong with me, and look at me as if I were a hypochondriac.
In late 2002, I went out to Colorado to an altitude of 9,500 feet and never adjusted to the altitude very well. I started feeling ill and went to a doctor who said I had double pneumonia and severe altitude sickness. I was sent back to the hotel and had oxygen delivered. I left Colorado early, two days later and headed back home, which was in Virginia at the time.
A few months later, I had a physical and the lung x-ray showed bulbous air sacs in the upper lobes. I went to a pulmonologist who said I had emphysema. Since I was never a smoker this was baffling, and plus at the time I was only 40.
I moved back to NY in early 2004 and went to see a pulmonologist up here who said he didn’t think it was emphysema. He sent me for a bronchoscopy, which didn’t go very well as I am resistant to anesthesia and tried pulling the tube out my throat, so they were not able to get a biopsy. The doctor recommended an open lung biopsy instead.
I didn’t like that pulmonologist very much (terrible bedside manner), so I went
to see another for a second opinion. The new pulmonologist had a great bedside manner and listened to me. He also recommended an open lung biopsy as he suspected that it was Sarcoidosis, something I never heard of before.
I was hesitant to do any surgery, and resisted, but eventually had the open lung biopsy done in 2006. That was the most painful surgery recovery I ever had (Read my post on “Open Lung Biopsy – My Truth”). The biopsy proved positive for sarcoidosis, and my lung x-rays showed that the lungs were very scarred, so it appeared that I had this for a while. I was classified as stage four.
I was put on Prednisone at a high dose and then eventually tapered down to a medium dosage. Over the next year I was up and down on prednisone and was eventually stabilized at about 20mg
At the end of April 2007, I was put on a new medication, the name of which I can’t recall now. On May 1st 2007, I awoke at 5:00 am and my entire right arm was lifeless. There was no feeling. I literally picked it up and it flopped like a rag doll. I thought it might be that I had slept badly on the arm, but I had awoken on my back, not my side.
I sat there for a few minutes, not panicking but wondering what the hell was going on. Just as I started to get worried and was about to wake my wife, the feeling slowly returned and I went back to sleep. Later that morning I told my wife and she insisted I go see the Pulmonologist in case it was a reaction to the new medication.
I did go and he dismissed that I may have slept badly and prescribed a bunch of tests – MRIs, CT Scans, Blood tests and a full cardiac work up. Everything came back normal. Then my pulmonologist asked the cardiologist to do a T.E.E., A Trans Esophogeal Echocardiogram. That’s where they do the echo from the other side of the heart. It requires anesthesia and them lowering the echo device into your throat. And my pulmonologist’s suspicions were proven correct. I had a PFO, a patent foramen ovalae, or hole in the heart. The hole was a birth defect never picked up by anyone and likely allowed a small clot to pass through and cause a TIA or mini stroke.
When I awoke the doctor said it all went well, the hole was plugged and in time, heart tissue would grow over and form a complete seal. However, there was another problem. The heart function was seriously low and I had heart failure. My output was low enough to justify the implanting of an AICD (a pace maker/defibrillator) in my chest. In just over a month, Sarcoidosis had become active in the heart. I was told that if I didn’t have that TIA and all that happened subsequently, it would have probably gone undetected and I would have died in about two months.
I later developed secondary pulmonary hypertension in addition to the sarcoidosis and heart failure. The hole in heart took five years to finally close sufficiently to not affect anything by shunting.
After my AICD implant, I met with the heart failure specialist and was told that heart failure from sarcoidosis is irreversible, and actually only will get worse, and that I would need a heart transplant in five years. When the doctor told me that, I told him “I will get better”, to which he watched me and smirked.
I subsequently developed Secondary Pulmonary Arterial Hypertension, a result of the weaken heart and lungs. I continued to function normally, which I was told was amazing as my combination of conditions should have me pretty much incapacitated.
The five year “expiration” put on my heart came and went and my heart Actually began to improve. My heart’s function went from a 25% ejection fraction to my current ejection fraction of 55-60%, which basically means I no longer have heart failure. My doctors are amazed, after all, sarcoidosis of the heart, to them, was a death sentence. I proved them wrong.
In early 2015, I started having more shortness of breath, and eventually in April, I started to see a pulmonary hypertension specialist that suggested I do a right heart catheterization to see if my pulmonary hypertension was getting worse. Again, I amazed my doctors because according to to results, I no longer have pulmonary hypertension and the medication I was taking for it was actually making me worse.
Some days are still challenging as I do still have blood oxygen saturation drops with exertion, but everyday I am grateful to be alive. I write this blog for other Sarcoidosis sufferers ( I am not a sufferer) patients to get some information and I hope in some way, my experiences help at least one person.