I almost died.

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In January, 2009, I thought I was getting my yearly round of bronchitis, so I was put on my regular z pack of antibiotics.  It didn't help.  My primary tried two more antibiotics, which weren't working.  While this was going on, I was having trouble keeping food down.  Two years prior, I had the same symptoms when my gallbladder went south and was removed, so my GI doc did an upper endoscopy, looking for a possible fragment of gallstone in my bile duct...nothing.  He sent me for a liver biopsy, and while I'm in the recovery room, the general surgeon came in and told me I had sarcoidosis.  I had no idea what it was. 

They sent the specimen to a liver pathologist at the University of Utah, and he said I had the highest concentration of granulomas he'd ever seen.  So, my GI doc put me on meds to quell the nausea, but it didn't work, and from May to August, I lost 50 lbs.  I was now having shortness of breath, so the GI doc made an appointment with a local pulmonologist in September 2009. 

By mid August, I was having severe bouts of shortness of breath, so I contacted my primary and he set me up with a pulmie in his hospital network a week alter, August 26th.  She looked at the EKG I had in the ER two week prior and said I had a serious arrythmia that needed to be addressed immediately.  She got me in to see an electrophysiologist the next day.  Oh, and my father died that day, the 26th, as well.

I saw the electro. the next day, and had another EKG in his office.  Where my vetricular beat should have been, was a deep trough--my ventricles weren't beating.  I had a cardiac MRI that evening to confirm his diagnosis.  He wanted to admit me that night, but I couldn't as my dad's funeral was that Saturday.  He warned me that I could have sudden cardiac arrest and drop dead just like that.

After the funeral, I went striaght to the hospital and they put a heart monitor on me.  At 7am Sunday morning, another cardiologist from the same office came in with a printout and said I was going to the cardiac cath lab ASAP to have a temporary pacer wire inserted in my heart with a battery to keep me alive.  He said that had I wated another day, I would have died.  The next day, Monday, they implanted an ICD, and I felt so much better almost immediately.  They also started me on 80mg of Prednisone to get the active sarc under control.  For the next few weeks, I felt like I was 20 again!  I had so much energy that my wife and I installed hardwood floors in our home.  BUT, the side effects started...uncontrolled hunger and the worst of it, steroid rage.  I turned into Mr. Hyde.

My pulmie backed me down slowly to 40mg, but then the sarc spread everywhere.  The only internal organs not affected were the kidneys and pancreas.  My liver and spleen are shot.  I have severe portal hypertension between the two, to the point that bloodflow backs up in the femural artery and I have several varicies in that region now. 

In the fall of 2010, I was approved for Remicade as the Prednisone was destroying my insides.  I was vomiting all the time because of this.

Slowly, it's been taking me down.  I have bone and joint pain nearly all the time.  Have neurosarc now, with spastic hand movements and cognitive issues.  Fatigue is horrible.  But, this my new "normal" and I've learned to accept that.  My wife and kids have more of a problem with it than I do.  I know I'm going to die early...and I have no problem with that.  This disease causes you to become a devout pragmatist.  It is what it is. 

I was lucky to have been approved for SSDI quickly.  I guess that once they saw my patient records, which are as thick as a city phone book, they couldn't deny my application.