Thursday, October 2, 2008

My Story...

My name is David I'm 31 and I moved to Teaneck, New Jersey from Miami in the spring of 2006. I was under enormous stress from the move and I wonder if that stress is what caused or triggered me getting sick? I got a head flu the 2nd week I got here then it came back stronger, I wasn't eating had fevers of 104. I saw a family Doctor who told me it was pneumonia and sent me on my way with antibiotics. I thought I was fine but 3 weeks later I got sick again, all this time I was losing weight and having unexplained fevers throwing up mucus and by now a pain in my abdomen on the left side had developed which my family doctor told me was "water in my lungs" never mind no x-ray was taken yet. I didn't have insurance but I had just started a new job that would provide it within 90 days.
That’s when I saw a real Doctor who checked EVERYTHING! She thought I was on drugs, cocaine particularly because I came in with irregular heartbeat, bloody mucus and fever. All the symptoms pointed towards lymphoma so I was sent to go see an oncologist. The oncologist ran plenty of tests, which included bone marrow biopsy that came back negative for cancer. However we did not have explanations for what has been going on with me. I was 310 lbs and I was losing weight at an alarming speed. Cat scans revealed that the pain in abdomen was an enlarged spleen (no really it weight 9.5lbs) which seemed not to be receiving enough blood. By this time I had lost 90lbs I couldn't breathe, I thought I was going to have a heart attack going up a few flights of stairs. Fatigue was my biggest complain though. There were days I couldn't even walk one to two steps without being out of breath. After consulting a few surgeons/ a cancer specialist surgeon decided to remove it. After the splenectomy they performed a biopsy on the spleen, they found masses of granulomas. (No Cancer!)

I went to see a rheumatologist who suggested we take the "wait and see" approach. Now here I am looking on the Internet and stats are showing like 90% of people with sarcoidosis have it in their lungs! No one even bothered to check mine even though one of my first symptoms was that I was out of breath. Needless to say I did not go back to that doctor. I found a doctor in New York's Mt Sinai Medical center that has a team of Pulmonologist that specialize in sarcoidosis! HA! So...

I was prescribed prednisone for about 18 months, this worked and put the sarc down but the minute I tried weaning off that sucker came back. I had also gained about 35 lbs back with the steroids and don't even mention the mood swings to my wife. Throughout the steroid treatment I had flared up more times than they raised taxes in Jersey. I was put on a drug called hydroxychloroquine generally known as plaquenil. This is an old drug used to treat or prevent malaria. The way it works for auto immune disease is not fully known but what is known is that it helps with inflammation and people taking it for malaria that had rheumatoid conditions started to realize that the drug improved their arthritis. The doctor said last week that this drug wasn't working so we are looking at other options. The Doctor put me back on the prednisone to get rid of the symptoms I currently have, which includes gigantic lymph nodes exploding at both sides of my face. Oh that's another thing the last 2 years I have had lymph node biopsies to rule out the C word. I just had a needle biopsy on the face a couple of weeks ago. So next week the doctor will tell me if I have to go on methotrexate. That is a drug used for the treatment of cancer but it will be given to me in low dosage.

I'm probably missing a lot of what happened on here like when I had to take a bunch of really strong pain meds for some crazy looking skin ulcer (I have pictures) on my tailbone. As a result of being in the same position for too long in the hospital bed after the splenectomy. These were the pills I was prescribed after the surgery, which didn't hurt as much as that ulcer. Or maybe the ulcer took my mind off of the surgery pain? Whatever, Now these pills had backed up my digestive system for almost a week I thought I was going to pull an "Elvis" one day in the bathroom.

This is my story I wish it wasn't but it's mine and that's ok. I gotta say some good things did come of this and I think it gave me some sort of push I guess to try and be better. It brought my family together as well. I know I loved having my mom fly up from Miami and "take care of me" after the surgery while my wife was at work. I got visits all 5 days I was in the hospital. I used to stay up just me and my morphine drip watching three's company and good times. Good times was sooo depressing though.

I'll update next week if I go on the methotrexate for now the steroids are working in getting my head in normal proportions. For now it's just me and my stage 4 sarcoidosis!


Mike said...

Holy crap man! Quite the story! Bad diagnosis from the doctors. Man, time to get a second opinion!

Hang in there!

Sarcoidosis Untied said...

yep, thankfully I got my second opinion and I'm still with that doctor. I consider myself luck to have gotten diagnosed in less than 6 months for a lot of people it takes longer. I'm also lucky it wasn't cancer.

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