Results

Today is the first day of the rest of my life.  As I sat in Dr. Olson's office listening to her go on about the disease, and the possible outcomes I could not quite understand what she was saying.  At no point in the conversation had the word "fibrosis" been said.  There wasn't a "yes", but there certainly wasn't a "no".  After about 20 minutes of Dr. Olson explaining exactly what happened during the surgery and what it meant for me in the future I stopped her and just asked, "So, then it's not Pulmonary Fibrosis?" and she said and I love these words, "We saw no evidence of fibrosis on your lungs".

I have been walking around for over a month thinking that my life was going to end in a few years.  I didn't know what the future meant for my job, Ashley, my family, or friends.  I was so scared that I didn't really know how to express it.  I made jokes, and tried to stay positive but inside was a very real very scared young man.  The idea that it was not Pulmonary Fibrosis didn't even occur to me.  The 1st doctor had seen scarring on my lungs, so then how could it be anything else?  Well, thank God for modern medicine.  I will happily let John Mitchell cut me open anytime he needs to.  In a time before an open-lung biopsy I would have been treated for and lived with the idea that I was dying and then I would have just NOT died. 

I want to thank all of you for your prayers and thoughts.  I can not express to you just how much it has meant to me over the last few weeks.  I know many of you have written me messages and notes, or texted me and I promise I will respond.  Between recovery and just not really knowing what to say to you it was difficult for me to know how to ease your mind.

I'm not totally out of the woods yet.  Obviously, my symptoms still exist and they exist for a reason.  I have something called Chronic Hypersensitivity Pneumonitis.  This disease is caused by something in my environment, but due to my family history and my "luck" it effects me more than it would a normal person.  My favorite line from the Wikipedia article is, "The prognosis of some idiopathic interstitial pneumonias, e.g. idiopathic usual interstitial pneumonia (i.e. idiopathic pulmonary fibrosis), are very poor and the treatments of little help. This contrasts the prognosis (and treatment) for hypersensitivity pneumonitis, which is generally fairly good if the allergen is identified and exposures to it significantly reduced or eliminated. Thus, a lung biopsy, in some cases, may make a decisive difference."  In other words, I have the good one.  Now, this disease can manifest into Pulmonary Fibrosis so I have to be very careful about my treatments and not getting sick.  If I were to get pneumonia or something it would be bad, but today I free of fibrosis.


Yesterday I was given a "treatment plan".  I will be on a HEAVY dose of Prednisone (which is a steroid), another drug to lower my immune system (because my lungs are attacking themselves), and another drug to make sure those drugs don't hurt my digestive tract.  I will be working out (Occupational Medicine) at the hospital a few times a week to get me back into some kind of shape because having muscle and losing fat will help my symptoms in the long run.  I will still see the doctor once or twice a month, but not 3 times a week like I was before.  I also still have a PFO and will probably look into surgery on that within the next year.  (Probably around the summer because it's much less busy at work).  There will be some changes in my behavior due to the drugs; mood swings and such, but I will try to keep them to a minimum for those of you who interact with me outside the blogosphere.  I will also probably be gaining some weight and you may see some changes in the appearance in my face.  The working out (and Ashley's healthy meal plan) should minimize these, but they are due to the steroid.

No more pictures like this!

I am just happy to know that I am going to be alive for awhile.  Sure, this disease can turn into Pulmonary Fibrosis, but I don't have it today.  Today, I am not riddled with a terminal illness and I can plan my life the way I always wanted to.  I cannot wait to go back to work like a normal person (though I guess I'll still have oxygen attached to me for awhile while the steroid does its work) and plan my future with Ashley.  I can look forward to marriage and children.  I can look forward to moving to the suburbs and living a happy middle-class to upper-middle class life.  I can think about my future in terms of years and not months.  I cannot tell you how happy I am today.  Today is truly the first day of the rest of my life.

Last 12 Hours

Tomorrow at 11:30pm I will meet with Dr. Olson to discuss my biopsy results.  In 12 hours I will either know for certain that I am, in essence, dying, or that I have some strange disease that mimics Pulmonary Fibrosis.  This is a scary idea.  I will spend most of the next 12 hours sleeping next to my wonderful girlfriend.  After that, I will make myself breakfast and get my oxygen in order for my appointments and drive myself to National Jewish.

I will spend the next 12 hours doing mundane and seemingly normal acts of life that we all go through everyday, but for me they may be the last one I do without the looming fear of an early grave.  I know that no one wants to talk about it, and it has been very difficult for me to come to terms with as well but if my diagnosis is confirmed then I will die.  "Everyone is dying".  I know, I know.  I could get hit by a car tomorrow and die much sooner than if this disease takes me, but I will know how and, to some degree, when I will go.  I understand that there experimental medicines, and that I am young.  I know that I have great health insurance, and I am seeing some of the best doctors in the country at LITERALLY the best pulmonary hospital in the country.  I know all the positive things about my situation, but at the end of the day this disease (if I have it) will kill me. 

The idea that I have to get married faster, and consider leaving Ashley a young widow kills my soul.  The idea of my parents burying me instead of the other way around literally knocks the wind out of me.  This is something I would never wish upon my worst enemy.  I even have to consider if I will allow myself to have children:  A. because I would leave them fatherless at a very young age.  B. because I have a good chance of passing along this evil disease.  I have always wanted to be a father and husband.  I wanted to live in the suburbs with my wife and have dinner parties with the neighbors.  I wanted to see my parents play with their grandchildren.  Today MAY be the last day I can even consider these things an option.  Tomorrow so much of who I think I am may change.

Here is the thing.  I don't think it will come back positive.  I did.  If you asked me the day before my surgery if I had pulmonary fibrosis I would have said "yes".  I would have even said it the day after my surgery, but as time has gone on I am either slipping deeper into denial, or I'm having some epiphany that I will be well again.  I've had symptoms in the past and they have disappeared and left me strong and healthy before... why can't that happen again? 

I will ask again for your prayers and thoughts as I find my results.  I will update tomorrow with what is going on.