28 Male Long Island. My story

Before I was diagnosed about 5/6 weeks ago I never heard of this disease and reading these stories from real patients helped me. So here is mine.

I would consider myself a normal active 28 year old. In good shape, work full time, never get sick. Never had any health issues. Haven't been to the Dr. since my college physical 10 years ago.

I Would say for the past year I have been having digestive issues. Sometimes constipation, sometimes blood in stool, sometimes diarrhea, something wasn't right. Thought it was hemeroids or something, didn't think much of it.

Late June this year, I was in a meeting at work. I started feeling a sharp pain on the right side of my chest. Went home, figured just sleep in it (I wanted to see who the Knicks would pick in the NBA draft). Woke up in the morning still with the chest pain. Took care of some errands for work, and decided to go to the local hospital.

Local hospital isn't really equipped or staffed to figure anything like this out. They took an exray of my chest and they thought I had blood clots. They admitted me do the next 5 days and ran a bunch of tests. They ruled out blood clots and thought maybe infection. Limes Disease is common in my area so they put me on antibiotics. The chest pain went away so they sent me home. Pulmonary Dr promised to follow up in a couple days.

So a couple days pass I loose about 20 pounds and I am sick as a dog. no appetite & lots of diarrhea. Very tired, did go back to work, but sleeping 14h a day.

Pulmonary dr is MIA (4th of July week). He canceled my appointment and told me he'll see me in mid August. I know people in the hospital and ask them to check on some test results. everything came back negative. So I was on limes disease meds for no reason.

This goes on for about 2 weeks and I go see a family doctor. He takes some blood & just checks me out. The next day my dr calls me at work and was shocked I was at work because my iron levels were so low. He recommended I go to Stony Brook Hospital. I left work and went home to lay down.

I was a little stubborn and didn't want to admit I wasn't getting better. Also the knicks summer league started that day and I wanted to see their #1 pick in action. So I took a nap before the game and when I woke up the chest pain was back. Not sure why it went away in the 1st place, maybe loosing all that weight took some pressure off. I'm normally 180 do 20 pounds is a lot.

So after the game I packed my bags and headed to Stony Brook on what would be an 11 day stay. They checked me into the ER and started about what would be about a million tests. As a precaution for taburculosis they put me in quarantine for a couple days. They doses me with some serious antibiotics for a couple days. That didn't do anything, so that ruled out infection. I was in there for about a week before they came up with Granulomatosis.

Originally they said they were 90% certain that is what I had but they would need a biopsy on my lung to be sure. It was a Friday and I would have to wait until Monday to get it done. Over the weekend they started dosing me with Prednisone steroids and finally all the stomach issues and chest pain started to go away. Monday came and I was brought down for the biopsy and the surgeons decided it wasn't worth the risk. Getting stabbed in the lung between my ribs with a needle didn't sound like fun so I was too disappointed.

So my Rhumatologist decided we were going to this Nazi blood disease with 4 doses of Retuxin in 4 weeks. I took my first dose in the hospital. After a 5 hour IV I didn't have any reaction just a little headed ache. 24 hours later they let me go home.

I was prescribed 60mg of prednisone a day and was feeling a million times better. The next couple weeks I took it real slow but got better everyday. A few days after I got out of the hospital I had the worst pain in my life. It turned out to be a kidney stone(fml). Other then that I was doing better every day. I didn't push myself too much. My appetite was out of control I was eating like crazy.

I got my second dose of retuxin a week later. Didn't have too much of a reaction just drowsy and a head ache. After a couple days I was back to my super appetite and tearing the kitchen apart.

My third dose went the same. I just had my fourth and final 2 days ago. Yesterday I woke up with a headache and felt like crap all day. Today I feel good. My plan is to go back to work tomorrow(Aug 17).

I have to get some blood work next week and have follow ups with the Rhumatologist and pulmologist in early September. I believe the plan is to put me on some type of immune suppressents pretty soon but I guess I'll find out.

Hearing other stories helped me out and hopefully mine can help someone out there. I'm Still trying to recover from this nightmare of a summer, but I am keeping positive. I Think I'm very lucky to have one of the best hospitals in the world close by. Hopefully I will keep you posted with some good news in a couple months

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