spreading the word...

So today is National PH Blog Awareness Day- it doesn't sound quite as exciting as national grilled cheese day or all those other various "holidays," but definately goes to prove a good point....

Today is the first day I am deciding to come out and tell the condensed story of my journey with pulmonary hypertension thus far(I say "condensed" because everyone knows that I am fully capable of talking forever and a half years!!).  This is not something many people know that I have unless you are around me.  It is something I am still learning to embrace everyday because it has taught me to live a different life. I am very open to talking about it, but its not generally something I will just announce all at once.

Before you start, this website gives a great definition as to what this conditions entails.
http://www.phassociation.org/

Ok, so grab your carpet square and sit pretzel legs for me, because here the story goes...

It was January 15, 2010.  It was 3 days after I returned home from an epic journey to South Korea to visit my boyfriend, Joey, for a few weeks. It was probably by far one of the most memorable vacations I had ever been on.  After I had caught up from jet lag and what not, I had made plans with a friend to hit up a YMCA "bootcamp" class on a Friday night.

We had gotten to the class and were about 20 minutes into the workout when we ran up 3 flights of stairs to the indoor track.  I had told my friend, Jess, to just scoot ahead of me in the running because I was going to catch my breath a little bit. I had stopped to lean up against a pillar and next thing i knew i was inbetween two treadmills 2 banged up knees and a black and blue face.  It was the first time in my life i literally woke up with no idea where i was.  The first person to the get to me was ironically an EMT.  He and his wife (a school teacher) began asking me if I was ok.  I had to ask where i was before i could even begin to recall what had just happened.  I apparently passed out cold and face planted to the side of the track. Thank God i didnt hit my head or spine! The absolutely wonderful fitness instructor of the class, Amy (whom i am still very close with and now babysit for her boys-ironically enough!) stopped to see what had happened. The paramedics were called and i was strapped to the body board and taken down 3 flights of stairs. Those men were awesome, the YMCA lacked an elevator to the third floor, so they were all troopers in my book.  Jess then called my mom and told her what had happened and explained i was going to the local ER for further tests.  All my mom could say was, "you'll do anything to cause drama!" Now if you know my mother, she is my best friend and partner in crime. She is also a nurse herself.

I was admitted to the ER almost right away and they ran a cat scan. Now, I had never passed out in my entire life before.  I gave the history about how i had just taken a 12 hour plane flight home and they wanted to make sure I didn't have any blood clots that went to my lungs due to the cabin pressures and what not.  After running the CT-scan, the results revealed an abnormality that my lungs were enflamed at the tops. I was then admitted to the floor i had clinicals on a week later (talk about the irony in that! For those of you who are reading that are unaware, at the time I was in my third year of nursing school) They were thinking that my lungs were enflamed because I had climbed mountains in the prior weeks and it was winter time in korea as well (pulmonary hypertension makes it difficult to breath in such climates and also weather).  So this was from prolonged exposure to the chilled weather climates. I was hooked up to telemetry and Jess and I had begun our first night at the hospital. I told my parents (who lived 2 1/2 hours away) to stay where they were until they found something for sure.

Needless to say, Jess and I hardly slept that night.  She was awesome and went home to get some of my stuff and brought movies back for us to chill.  It was about 3am when Joey had finally gotten the chance to call me.  I wasn't able to explain much, but just that I had passed out and was in the hospital. The next morning was when the final diagnosis had occurred.  The cardiologist came to see me and performed a "bubble study" with an echocardiogram.  This is basically just an utlra sound of my heart to see the structures and what was going on internally. I will never forget me looking at this doctor and saying, "if you can find something wrong, it would rock my world."

For about a year that I could recall, I had very non specific symptoms of the disease that just never made sense with my active life style and energy level.  I would occcasionally become short of breath from climbing a simple flight of stairs, when i would exercise almost everyday for an hour. Stairs is a pretty common barrier for those PH patients. I would have "good days and bad days" for working out, but nothing ever really made sense as to why i would be so tired on some vs others.  I would occasionally have heart palpitations climbing hills, but would only think to myself, "hmm i am just not in shape for doing things that involve incline."  All of these unexplained symptoms really got pushed to the side and ignored.

The cardiologist had told me that i had "pulmonary hypertension." I remember briefly learning about this condition in my pathophysiology class the year before, but nothing really stuck out about the matter. Being the complete nerd that I am, I whipped out my medical-surgical nursing book at my bedside and began educating myself. BIG MISTAKE. One of the biggest problems with the research in the books at this point was the lack of accurate information out there.  Pulmonary Hypertension is one of those conditions that has had huge medical advancements and progress in the last 5-10 years, so even the information from my book published 2 years earlier was wrong.  The book told me that I basically had "2.9" years to live max. Try reading that and not bursting into tears when the hospital you are at does not know a whole lot about this specialized condition. I decided to close my book and stop reading because my extreme optimism was not allowing me to continue on. I fully believed there had to be something bigger. 

I called my parents and they began the drive down to the waukesha memorial. A very powerful moment at this point happened. My mom, Jess, and i sat on my bed and just cried. What happens next? All i could do was pray and know cling that there was something more to the situation. The cardiologist had referred me to a specialist who was in Milwaukee. This woman is Dr. Diane Zwicke, the best in the midwest with international research and complete life devotion to my newly diagnosed disease. I was taken to St. Luke's Medical Center. I was admitted to a cardiac floor and relieved Jess to go home after spending the first 27 hours with me.  I owe her more than words could ever express. I frequently tell her this as well.

The next morning my family was there with me to meet part of the team. Zwicke had a STUPENDOUS team of nurses. My forever favorite nurse practitioner, Wendy, came and found me sitting in the hall talking to Joey to tell me that she was ready to "game-plan."  The team is an amazing job explaining much better what the disease's origins, treatments, prognosis, etc. Basically everything there is to know about what needed to happen.  Let me tell you, the whole family was much more relieved after speaking with the specialists.  Never settle for uninformed sources if you know there has to be something more out there! The main part of the rest of my hosptial stay was to find out what was causing the disease.  I was a  voo-doo doll with all the needle poking for blood samples, had another echo done, and a v/q scan.  I was then sent home because they had done everything they could up to this point.

After an extravagant weekend in the hospital i was set free to go start school the following tuesday. Full credit load nursing student with clinicals, labs, and lectures to stay on top of... with little or no coping time because i was convinced that i was going to press thru.  I was trucking back and forth to st. luke's for different tests and doctor visits every day in between. Wednesday, I took my friend Holly with me to meet Dr. Zwicke for the first time in in the clinic. I had to tell me parents to back to their routines in Green Bay (home town) to continue on with their lives. I am so glad that Holly was with me to meet the doctor because I was a little overwhelmed at that point.  Dr. Zwicke is one of those people you instantly trust with your life because she's the boss. She holds a strong confidence, knowledge, and EVERYONE i talked to had a great deal of respect for her.  She told me what then needed to happen. In the next two days i was going to have a cardiac catheterization to help confirm what my pressures actually were and this would help determine the treatment options from that point. Being a 3rd year nursing student had great benefits at this point because i understood almost everything that was told to me by the doc, nurses, lab, etc. This was also much less explapining to do for the professionals ;) The most memorable quote from that doctor visit that Holly and I still talk about is Dr Zwicke saying, "I will be doing your cardiac cath on thursday and I won't even leave a mark because i am damn good at what i do!"

I came in early on thursday and met my parents at st luke's. I was there bright and early to get the show on the road. Some of the details i failed to mention was that the statistics for a person of my age an shape having PH is about 1/100,000. The typical time period it takes to get diagnosed is months because it is commonly misdiagnosed as asthma, allergies, etc. I was diagnosed and treated within 6 days. Who knew that passing out at the YMCA would be such a blessing in disguise. I was the "hot patient" that everyone was there to see and work with. The cardiac cath required conscious sedation, so i wasn't actually under anesthesia, but had a some pretty incredible cocktail of drugs. I have to admit i was probably a blast to have as a patient. When I was waiting for the docs to show up in the operating room, one of the nurses asked me if wanted to choose the music for the procedure that was heard overhead. Being a complete daddy's girl, i grew up with classic rock.  So when the docs came into the OR, the little Indian doctor asked me, "Who the hell chose this music?" It was hells bells by acdc. :)

Coming out of the cath and into the room again by my family was apparently a really entertaining moment. I was still pretty hopped up on the drugs and talking about how I wanted nothing more to eat at that moment than a burrito. Dr. Zwicke and Chris (my coordinator that works along side of Zwicke) were there to tell me what was going to happen based upon what they found during the cath. Zwicke guaranteed me success with an IV medication that would be hooked up to a continuous running pump that went through a centeral line directly into my heart. Later that night I had my hickman line put in me and was brought back to the floor i was on the weekend before.  I was started on a miracle drug called "Remodulin."

The staff and faculty of the floor i was on was absolutely incredible.  I felt more like i was one of the nurses than an actualy patient. That was my whole motto as a patient though, "youre only as much of a patient as you make yourself." I would occasionally get scolded for leaving the floor with my IV pole to go check out the gift shop. My friends were absolutely incredible during the 5 days i was in the hospital. One friday, I even had 9 of them up in the room at 11pm to watch movies and eat icecream. I felt like i was hosting more than just there to get treatment. My parents had also been staying with my aunt and uncle who live in Waukesha (where i go to college). The constant support was very awesome and kept me thriving to stay positive. This could have been such a bad experience of being diagnosed and treated in the hosptial, but it truly was the best experience i had with any type of medical care ever.

I also owe a lot of thanks to Joey who was over in korea the whole time.  He told me he was about as close as it came to actually flying back home to see me, but i told him that it was not necessary. I know that my faith would carry through everything.  My family and friends were also the ultimate reason I could keep smiling and "keep on keepin on."  There were many nights in the hospital that I spent skyping with Joey and showing him around the room. He had the chance to take the easy option and just head out, but he decided to ask me "well, what are we going to do next?" This was also one of the best decisions I had made for myself later on because it taught be after the academic struggle with school and life happening at the same time that there is nothing in this world that I am not capable of taking on. My independence and self confidence by the end of summer was so high, i guarantee nothing could ever shake me.

Back to the story- i now had a tube sticking out of my chest and a sweet fanny pack to sport around that held my pump.  Talk about making a fashion statement. Joey had named my new pump "Remus." This was a really good way for me to help cope with everything in the small time allotment i was given with the start of second semester and all. My roomates Brooke, Candace, and Jess all had a welcome home party for me and Remus including cake and icecream. Seriously, what would i do without my friends? Brooke is also now a nurse at St. Luke's and was my second in command if something ever happened to me that I would need someone to mix my meds or what not. I was on a schedule of mixing my meds every 48 hours with a very specific technique to do so. My roomates were a constant support for me to keep doing what i needed to do. I will not get into details, but nursing school for that semester was not made pleasant for me. I will say that my mom, dad, aunt, and uncle are ultimately my heroes and I owe them more than i will ever be able to give.

it was incredible how fast the treatment kicked in, I was able to run up a flight of stairs without being completely winded by the end of 2 months! I continued to feel physically better.
By the end of April, I was completely burnt out of everything nursing related.  I had spent far too many moments of the semester in tears. I had taken my final exams and clinical days and was completely relieved when i was finally passing everything. I will say that I had never once quesitoned my decision to be a nurse- its hard to when you know its destiny!

The summer was completely therapeutic for me in the way of completely starting a new routine. I got a job at a coffee shop and enjoyed living with my new roommates Katie and Steph (because everyone else i had previously lived with had just graduated).  It was the beginning of June and I had my follow up echocardiogram to see how the medicine was working after 5 months.  my mom came down to spend the night and come with me.  I had my echo done and went to the clinic to see Zwicke and Chris. I didn't really know what to expect, but i did know that i was feeling the best I had in months.  Zwicke came in with a HUGE smile on her face after she read my results from the echo.  She told me my heart "completely remodeled itself" and i would no longer need to be on my IV medication. This just about blew my mind. She told me i am a medical miracle and would get my line out in the next two weeks. Oh boy, did my mom and i celebrate after that. Once again, i have no words for my doctor and Chris because i am at a complete loss. She gave me my life back. Right place, right time, right doctor. God's incredible.

The actually had taken gone to the national PH conference held in Anaheim, CA in the following two weeks to meet lots of other people just like me living with the same condition. I was completely inspired by everything.  Finally being able to meet people and talk about similar happenings blew my mind.  Also, being told i was a medical miracle a few weeks prior to vacation was prety incredible as well. I flew into CA ready to inspire. In one of the medical sessions that involved long term survivors of the disease, i got up and told my story of the previous past 6 months. So many instant, deep connections i could never explain unless you are a PH patient yourself.  I met many of the people i was in an email support group with,  one man in particular was Bobby the Pharmacist who had just completed an iron man carrying the PH flag with him the whole way.  I had gone up to him and talked with him after one of the sessions. I had this idea of a way i wanted to celebrate getting my heart back and it was to do a 150 mile bike tour for MS.  I had gotten the ok from my doctor and needed some other inspiration from such a PH patient. Meeting everyone at this conference truly inspired me and my mom alike. When you read on the internet that your basically going to die in 3 years in left untreated, to how i felt now- there is such a difference.

I spent the rest of the summer working part-time at caribou coffee and training for this bike tour. My mom was training at the same time.  We did the tour the first week of august.  I had another constantly supportive friend, Kyle, do it with me as well. It seriously was one of the proudest moments of my summer pulling into Whitewater, after that first 75 miles of hilly south wisconsin. Talk about victory.

A new year of school started and I was completely rejuvenated by the end of summer. I also started a new job on the floor that i was a patient on right at the tail end of summer. My doctor had asked me what my plans were after nursing school and I was joking when i said coming back to work for her.  She looked at me and said, "ok i'll arrange for that." I got an email from the manager of the floor i was a patient on and had an interview the following week. To be honest, I didnt even know what I was going to be interviewing for when I had gotten there. Sharon, the manager, asked me what I was looking for and i said a job after i graduated and then proceeded to ask if i could start sooner. I was working on the floor in the 2 weeks that followed. Hopefully, if all works out accordingly, i will be externing on the floor by january and be a real RN after i finish my boards in early summer. I did not see a career coming out of this at all.  I am only working as a CNA on the floor for now, but let me tell you that i have had so many contacts with PH patients on the floor. Its an incredible connection- the kind that every nurse craves. Try and convince me that everything doesn't happen for a reason....i'll probably laugh at you- ha!

About 2 weeks ago, i was contacted by one of the nurse practitioners that works with Zwicke.  She told me that Zwicke was going to be starting up a new website about Pulmonary Hypertension Awareness and asked if i wanted to give my testimony to be videotaped and put on the website. Naturally, I said "of course!" I was completely stoked at the idea because november is national PH awareness month. Oh, and i'm basically a celebrity now ;)!!

Well thats a rough estimate to my story. Maybe not as condensed as i would have liked it to be, but then again I'm Lauren- the gift of jabber is one of my strongest. Let me just say that there is no way I am where I am without the constant motivation of my little brother's legacy, family, friends, roommates, patients, etc. There is so much in this life to be thankful for and never take for granted what you have been given. I have learned to be honest with myself and learn to listen to my body. Trust me, this condition still does affect me negatively, but i believe it is truly in how a person perceives things as well. I have been blessed with the ability to be flexible and easily develop new norms.  That is also a skill that takes some practice to develop.

Do me a favor and take in a deep breathe right now and slowly exhale. be thankful for that :)