Diagnosis

So those who know me know that my lungs don't work; or my heart doesn't work.  Over the years the 2 organs have been fighting a battle for who gets credit for me not being able to run.  I saw doctors roughly 5 years ago and they all had various thoughts though I must say that my favorite was the cardiologist who was sure that I was coming down from a cocaine addiction.  I, however, have never even seen cocaine in real life so his diagnosis was worthless to me.  But, I started to feel better.  My heart didn't beat as fast when I walked and I didn't lose my breath walking up a flight of stairs.  Being the stupid college kid that I was I stopped seeing the doctors (who were really not providing me with any information anyhow) and went along with my life.  I've had a few "episodes" here and there where my breathing has bothered me but I was always without insurance so there wasn't much I could do.  It was never bad enough that I needed help, and I even worked at Disneyland paddling a canoe around a river.

Fast forward to 2011.  My breathing has gotten worse and I decided to go to the best Respiratory Hospital in the country; National Jewish.  I was assigned to Dr. Ronald Balkisson and he asked me to go through a series of tests of the course of the next few months.  I would also meet up with Dr. Kim; my cardiologist to go over anything in the way of my heart that could be effecting my breathing.  Now, let me tell you trying to go to work 5 days a week, 8 hours a day, and fitting in doctor's appointments is all but impossible.  I was getting up at 7am to be at the hospital by 8 to go to work at 9 and be there until right around 6pm.  Days became longer and longer and my symptoms were getting worse.

Symptoms:

• I can't breath. I don't mean like when winter is over and you've gained 5 pounds and it gets a little harder to go for a run.  It takes my breath away to wash my hair, put on pants, and I can forget about running up the stairs.  For those of you picturing an obese man; I am 5'6" and 156lbs.  While I was probably never in the best shape I am not a large man.

• Coughing is an hourly chore that can leave me feeling weak, in pain, and hopeless.  Coughing is usually something your body does to remove evil things from your body.  My cough is dry, hacking, and relentless.  Once I get caught up in a cough it can take me 20 minutes to calm my body down to the point that I can breath again.  I have to yell at myself (usually in my head), "calm the fuck down".  Sometimes it helps, usually it does not.

• Fatigue has taken over to the point that given the opportunity I would rather sleep than do just about anything.  I never feel alert, or awake.  My life is lived within a thick fog that never lets go.  I go to work, the grocery store, the movies just like everyone else.  I am pushing through as much as I can, but it is a conversation every morning about if I am going to get out of bed or not.

• Chest pain is scary because you know your body shouldn't be feeling that way unless it is shutting down.  Each coughing fit, or minute that I spend trying to catch my breath is coupled with the pain of an elephant (with knives on its ass) sitting on my chest.  It usually lasts only seconds, but those seconds occur much too often and seem to last hours.

So, what's going on?

I sat down with Dr. Balkisson last week and he went over my test results.  My breathing function is about 64% of that of your average 29 year old Caucasian male for my height and weight.  Not good.
I have a slight case of sleep apnea, but nothing to be alarmed about.  I have a PFO (Patent Foramen Ovale), or a small hole in my heart.  The hole is actually quite common, but usually found and corrected in infancy.  They do not believe that this is causing my symptoms, but feel that it may be increasing the severity.  So he tells me that I have an Interstitial Lung Disease; more specifically they show "fibering" on my lungs which leads them to the diagnosis for Pulmonary Fibrosis.  BAD.

For those of you who did not use the links above I'll give you a brief rundown.  Pulmonary Fibrosis is the scarring of your lungs which makes them stop working.  It is a completely degenerative disease with no cure and no (verified) treatments.  The average life span after diagnosis is 3-5 years.  So, I am 29 years old and I have the lungs of a 70 year old man (who smoked).  I was then told I would be scheduled for a biopsy on my lungs in order to confirm the diagnosis. 

"Surgical biopsy. Although this is a more invasive procedure with potential complications, it's often the only way to obtain a large enough tissue sample to make an accurate diagnosis. During the procedure, surgical instruments and a small camera are inserted through two or three small incisions between your ribs. The camera allows your surgeon to view your lungs on a video monitor while removing tissue samples from your lungs."- Mayo Clinic

My biopsy is Thursday.  I have less than 1 week before a surgeon, a very nice man named John Mithcell will slice me open a few times and take pieces of my lung out.  Secretly, I am hoping he'll find and take the diseased part and I will suddenly feel better.  I will be in the hospital for 2-4 days depending on my recovery and then sent home to recover for 2-3 weeks. 

So why are you reading this?  I needed an outlet.  There is so much going on in my mind all the time about this and rather than searching message boards for positive stories about this disease (there aren't any); I figured that I would get my thoughts out of my head.  Maybe someone else with the disease will find it and be interested to see someone else's journey.  Maybe they will tell me that they were wrong and I have something else that won't kill me....