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.

Pre-Op

Well, I guess it's time to cut me open.  Tomorrow afternoon I will go to National Jewish to do a Stress Test to make sure that my heart is strong enough to withstand surgery.  (This is not normal procedure, they saw an inconsistency in my EKG that led to this emergency testing)  It's hard for me to walk up stairs, but they think I'll be able to RUN!? 

Those few who know about the surgery have the same questions over and over?  "Are you nervous?"  "Are you scared?"  To be honest, the answer is no.  My mind is fine; it's my body that doesn't work.  I think that I have a great surgeon and an amazing support system that will help me recover.  I will spend the next 3 weeks recovering in Castle Rock with my Dad, Step-Mom, and Sister (Hilary). I imagine I'll have frequent visitors especially my (worried) Mother. 

The part of me that is scared isn't scared about the surgery.  I am sure that I will come out as good as I went in; and therein lies the problem.  This surgery won't fix anything.  I won't get better.  I won't stop seeing doctors every week or taking new drugs until they find something that curbs my symptoms.  The frustrating and scary part is that when all of this is over I'm "recovered" I will be back in the exact same position I am in today.  I can't breathe. 

I met with Dr. Amy Olson yesterday who will be my Interstitiary Lung Disease doctor for the duration of my disease (I think).  She seems very thorough and very on top of her game.  She asked a million questions and seems to want to attack this from every angle once the diagnosis is confirmed.  I will also be part of a research study.  Most Pulmonary Fibrosis is called Idiopathic (which means they don't know why it happens), but mine may be Familial (meaning it's genetic) and they want to find out the gene/cell/whatever that causes this so that maybe they can isolate and stop it.

For those interested my surgery will be Thursday (I won't know the time until Wednesday afternoon) and I will be in the hospital through probably Saturday/Sunday.  I will be at the CU Medical Center in the Anschutz Medical Campus.  After that I will be in Castle Rock; FB me for the address if you wanna come say hi.  Ashley will have my phone when I am in surgery so if she can she'll text anyone back who texts me.  I will post an update here and/or Facebook as soon as I can.

That's all for now.  See you all soon.  If you pray...throw one out for me.  If you don't...happy thoughts?

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....