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. 

Another Year

2011

Today wraps up an interesting year.  It's funny how these things work because to be honest I am only remembering things that have happened in the last few months.  It's obvious that health has not be something I'm thankful for this year, and with an appointment to confirm (or deny) my condition on the 3rd I hope that 2012 is much better than 2011, in that respect.

Beyond that I have also had some pretty amazing things happen.  Ashley (the love of my life) is now moved into my our apartment and for the first time in my life I have a full-time real life live-in girlfriend.  I am very happy and very much in love.  She is my best friend, and the person I want to wake up next to everyday.  I love days when the two of us get to spend all day together and will miss that as we both go back to work.  Ashley is the person that I have been looking for all of my life and  I only hope that I get to spend many many long years with her.

I've lived in 2 homes this year (with another brief stint at the parents for recovery).  My current apartment in Denver, which I share with Ashley, Matt McGovern, and Katie March.  If not for the apartment itself this would be an ideal situation.  I love living with Matt and Katie and think that we have a very nice groove to the way that we interact.  We watch Jeopardy almost every weeknight and while they get WAY more of the answers correct than I do it is still fun.  We rarely, if ever, argue and it is nice living with some of my best friends.  I also lived in Wash Park (Shermansion, how I miss you) with Kyle Pottorff, Bryan Brammer, Scott Wenzel, Chris Hall, and briefly Matt McGovern.  This was a beautiful sprawling home that I loved.  Sure the walls were crooked, and they tried to evict us because our landlord didn't pay his rent, but beyond that we had a good time.  Sure, things weren't always hunky-dory but we got along and I miss those late night talks in the kitchen, or at the foot of the stairs.

I have had the same job for all of 2011, and let me tell you....I love it.  EF was pretty much a random situation of needing a job, and having a friend (Thanks, Zack) know of an opening.  I am not the biggest fan of kids, and I don't really like to travel, but I love my job.  I said it.  I love answering the phone and helping people figure out the best way to make international travel happen for their kid.  I don't mind being yelled at, or screamed at because I know at the end of the day I've helped people do something that their kid will never forget.  I'm also REALLY good at my job, and I've been #1 in my department pretty much since I started working there.  I have 2 of the best bosses in the world; Abby and Kaitlin.  I am so very fortunate that I work for such amazing, smart, talented women because I can learn from them and because they care about my future both in the company and as a person.  When I got sick and needed help dealing with everything they were there with advice, and were very encouraging to get my biopsy done as soon as possible and to make sure I take care of myself first.  I am actually excited to go back to work next week, and hope that my health allows me to work there for many years.

I have great friends and while I'd love to talk about all of you I just want to say that if you're reading this then I am probably thankful for you.  It takes too long to name each of you, and other than Jeddy and Mark I will probably see all of you in the next few hours.  I also have an amazing extended family; my aunts and uncles, cousins, grandparents, and everyone have been so amazing, not only during this bad time, but always.  I love each and every one of you and cannot tell you how much the texts, and messages mean to me.  It warms my heart, and really does something physical that makes me feel better.


I also went abroad again, and had a great time in the UK, and had a decent time in Spain.  (Don't go there if you don't speak the language)  I've spent countless hours playing halo, hanging out with friends,  and lecturing/hanging out with my little sister, Hilary.


I want to just say how amazingly thankful I am for my family.  My parents (and step-parents) have been  a blessing to me, and I love each of them in their own ways.  My siblings are amazing, and while we may bicker about the little things I know that they love me, and I hope that they know that I love them.  I could not be happier with the lot in life I've been given as far as my family is concerned.

Have a Happy New Year!  Be safe, and I hope to bring you good news in 2012!

Waiting

This will be a short post that I plan to expand on later because I am posting via iPhone from bed.

Waiting sucks. I know that tests and results take time but it is very hard not knowing what the future holds for me and my family (and friends). The doctor originally told me that I would get results within a week and now I'm being told at least another possibly 2. There was a part of me that really wanted to know long before I needed to head back to work (I am on Short Term Disability through Jan 5th). Getting my head wrapped around the idea that I *know* I have this disease is as important as getting the treatments started.

The "if" is also killing me. I was told that this biopsy is for confirmation and somehow I have it in my head that we are on a new fact finding mission and I probably don't have it. Maybe I'm starting my stages of grief but it's hard because I was telling myself that I KNOW I have PF and if they tell me otherwise great but to be prepared for the worst. I don't feel as prepared anymore. I think part of it is my friends and family are so optimistic (and believe me, I appreciate it) that it leads me to feel that way too.

That's how I feel today. I also feel tired; perpetually tired. I think I was in bed 20 hours yesterday. I couldn't bring myself to get up. My pain is a solid 2 all the time with bouts of 4-5 if I let my Percocet lapse or I accidentally sleep on my right side (which is my favorite side to sleep on).

Mentally, I think I am doing pretty well. I don't feel depressed though I do sometimes feel sad. I had a really bad day mentally on Monday and had to make myself stop looking up life insurance policies (which is a whole other post I have planned). I miss Ashley who has been in New Mexico with her family for the last 7 days but only 4 more. I miss fresh air and my friends. I miss stupid TV with Matt or Jeopardy with Matt&Katie. I really want to start seeing people without them turning their head to the side and saying "how ya feeling?".

And now I am off to my Mom's but because of the Percocet I can't drive so I am writing this post while I am waiting for her to pick me up.

Post- Op via Facebook

"Still waiting. Is it a good sign or a bad sign that your surgeon is 2 hours behind schedule?"
Thursday 12:21pm


- So at this point I am starting to freak out.  I've been laid up in a hospital gown for a few hours and my doctor is running about 2 hours late.  My mind is racing with all the horrible things that can go wrong that will make a doctor late.  Now, obviously as I type this it all seemed silly but panic was starting to set in.


"This is Jean-Paul's mom, he is out of surgery, in recovery and doing well. He want me to tell you all that Tom is in control of his pain meds and doing a great job :) I just got to visit him and he looks great considering."
Thursday 4:


- I remember very little, if anything, from this point in the day.  There was a man named Tom who was giving me really really good drugs in recovery and I remember cussing up a storm because I was in so much pain.  The chest tube really was the culprit, but it felt like I was having chest pains, pains inside my lungs, everything.  Once they got me on enough drugs I calmed down and was that guy you see in the movies that is super nice to everyone and tells the doctors "I love you, man".  Yes, really.


"JP here. Ouch. Pain sucks but I am alive. PS- don't have a biopsy if you don't have to. — with Hilary Houlette and 3 others."
Thursday 6:24pm

-So they moved me from the Recovery Room straight to a hospital room instead of to the ICU, which was a good sign. If I was having problems with my lungs or if something had gotten accidentally left in there I would have been sent to Intensive Care. I was in a lot of pain since the cool drugs from recovery aren't used except RIGHT after surgery.

"Pain still at about a 6 but I hear love heals all wounds. Let's make it happen, then"

Thursday 10:11pm

My Mom has been with me all day (she is amazing), and Ashley was there most of the day except when she had to leave during a meeting.  Vicki (my step mother) and Hilary (my younger sister) came after I was let out and hung out with me for awhile.  Still in quite a bit of pain, most from the chest tube.  Finally kicked Ashley out around 10pm so she could get some sleep (she tried to sleep on the couch).

"Lung slight deflated. Starting a procedure to stop it from collapsing. Pain down to about 4.5. So very ready for sleep."

Thursday 11:03pm

Had my 1st X-ray which showed that my lung was starting to collapse which meant I had to keep the chest tube in for another day, and they had to use "suction" to blow it back up.  Pain was not really managed this night and I slept a total of 2-3 hours

"is amazed what a few hours sleep (and Valium, Percocet, IV Motrin, and Darvocer in conjunction with a hot pad and a device inflating my lung) can make me feel so much better. Pain at 2-3; back to sleep."

Friday 12:50am

-They finally got it right and basically it was the perfect storm of drugs.  I was actually given Dilaudid not Darvocet.  The Valium, Percocet, and HIGH doses of some kind of IV version of ibuprofen.

"Woke up in pain (6) again. Time for some Morphine. *fingers crossed*"

Friday 4:01am

Worked for about 3 hours and then I was in a crazy amount of pain.  Felt life my insides were trying to come out and and they wanted to come through the 3 holes the doctor put in my side.  They had to give me emergency Morphine because I had already taken too much of everything else.  Seemed to work for awhile and I got a few hours of sleep.

"Good Morning, World. Eating pancakes and watching Sex and the City. They had to put suction on my lung because it was dropping. They've pretty much got ahold of my pain."

Friday 8:15am

-Ashley came to see me bright and early and we ate hospital breakfast (I didn't eat much) and just talked.  Lots of nurses came in to talk to me about my chest tube, going home, oxygen, etc.  I was so loopy from everything that they had been giving me that to be honest I don't remember much.  I took a nap this day (finally some sleep).

"Just took a couple of laps (with the help of oxygen, a walker and Ashley). My lunch had Haagen Daas ice cream; so if you have to be in immense pain at a hospital this is the one. X-ray soon to make sure my lung is staying inflated and then a long drug-induced nap. — with Ashley Fern."

Friday 1:18pm

So, my nurse (Nikki) told me that I needed to walk 3 laps around the floor of the hospital wing to get my strength back up.  Ashley and I did 2 because I was really out of breath and needed to lay back down.  The food in the hospital was actually pretty good and I got as much of it as I wanted; I kinda want to go back when I am less sick because I barely ate anything.  Lots of chocolate milk and PB&J sandwiches.

"had his chest tube removed!! As long as my lungs stay inflated I will be outta here tomorrow afternoon!"

Friday 6:53pm

So, the Doc (do not know her name but I didn't like her very much) comes in and tells me x-rays look good and I can take the chest tube out.  She has me take a deep breath in and essentially just pulls it out.  It was kinda gross, but having it out was like night and day.  As soon as I was free from it my pain went from 6-7 to 3-4 almost immediately.  That may not seem like a huge jump, but it is.  Also, Vicki came back to visit me and brought me a bag of Clementine Oranges (for my health) and a CRAZY amount of candy (I think for my spirit).  Did I mention that she is the best step-mother ever?

"Hospitals wake you up early. I am ready to sleep in. Moved to OxyCodone for pain; not quite as good so we'll see. Should go home later today."

Saturday 7:14am

Lots of tests and "going home" prep.  Nurses talking to me about what I will need, etc.  I kept telling everyone that would listen to me that I was going to need supplemental oxygen for home when I left.  They ALL kept arguing with me that I was "young and healthy" and shouldn't.  So, I finally get a doctor to do a test on me and my resting Pulse Ox is 89 and as soon as I start walking it drops to around 85; within 100 feet I'm down to 83 and my fingers are blue.  I wish doctors listened better.

"Recovering — with Hilary Houlette and 2 others at Houlette House."

Saturday 4:12pm

-Ashley drove me home from the hospital and was amazing.  I was half asleep, and half back-seat driving and she never even raised her voice.  She was very sweet to me and made sure not to get too excited, or rattle my oxygen tank.  She really is an amazing woman.   Vicki, Hilary and Ashley made sure I was set-up in my parents room and comfortable.  I took a long nap, had some dinner with the family and then went straight back to bed.  I was very tired and very ready for a night of uninteruppted sleept.

"Evil"

Saturday 8:54pm

I am sure this device has a name, but I don't know it nor do I care to learn.  I am supposed to "work out" my lungs with this thing 10 times an hour.  It is awful.  It hurts, it makes me cough, and worst of all... it seems like I was getting better results when I first started it.  Evil.

Muppets Christmas Carol. I don't want to say its better on Percocet, but... :)

Sunday 12:12pm

- Ashley left me this morning to go see her parents for Christmas in Las Cruces, NM.  :(  So after she left I slept a few more hours and made my way (with the help of 2 liters of oxygen) down the stairs to have some breakfast and hang out with Vicki.  We watched some Muppets Christmas Carol and I dozed in and out of sleep.  I had a few friends stop by today, as well, but that is for another post.   That was my post-op facebook information.  Is this blog boring and redundant yet?

Minimally Invasive, My Ass

Everyone keeps saying "oh no need to worry"  "It is a simple procedure" etc.  And I appreciate the happy thoughts.  I really do.  The one that is killing me however is "Don't worry; it's minimally invasive".  The doctor said it to me when he told me I needed it, the surgeon told me when I did my Pre-Up appointment and I've had many other friends and family use the term "minimally invasive".

Let me tell you when it's YOUR body that they are thinking of cutting open, it doesn't really matter how little they are cutting.  There is nothing minimal about it.  There is a man eating Cheerios right now, or kissing his wife good-bye that will later take some form of sharp instrument and slice into me while I am asleep. 

Minimally Invasive, My Ass!

So, I used their weird red soap and I am ready to go.  My bag is packed and my hair is unproducted.  I haven't eaten since 10am (which really isn't that bad) and Ashley is getting ready to drive me to the hospital.  Last night I woke up at around 3am and started to freak out.  All the "what ifs", but I had so many nice messages, texts, and phone calls that you all really did calm me down.  I cannot tell you how much I appreciate the well wishes, prayers, and thoughts.  I feel really pretty relaxed at this point, though I think I'll probably get a little nervous as time gets closer.  I probably will not have my phone on me from now until after I get out of recovery so I'm not ignoring you (like normal).

 At 10:45- Throw an extra one up for me.  Thanks!

Quick Update

Stress Test went okay. Surgery scheduled for 10:45am tomorrow. Ashley will have my phone and will update those who text as she can. I'll update when I am able.