Little Lauren RN was really feeling the need for a short vaca from all the long hours put in at St. Luke's Hospital. What better excuse could there be than running away to the 10th International PHA gathering in Orlando, FL (where only the coolest of all people meet up). Boom. decided and done.
My sassy-pants partner in crime mom came along for the excursion too. I found myself sipping my Alterra coffee and people watching, when i looked across at the bench seats in front of me and saw a bag that said "Accredo" on it. I then proceeded to ask the woman sitting next to the bag if she was going to the same conference we were. She smiled and said "yes, i am going with my sister, who was just diagnosed a few months ago." We befriended Samtan and Tsetan (native from Nepal, and now residing in the twin cities). Ready for the irony: Samtan is a psych nurse, my mom's a psych nurse, Tsetan is a nursing student, and I am a cardiac nurse. Holy nursefest! This was both of their first conference, and my mom and I couldn't have been happier than to chat their faces off about how much they would get out of this conference.
We made it to Orlando and checked into the hotel. My mom and i decided to meander our way down the road to find some dinner. What could be better than cold raw fish guts (AKA sushi) on a hot humid night?! We called it a night fairly early in preparation for an exciting day ahead of us.
Friday morning we made it over to the conference. We were walking around the expo center and met up with a couple of familiar faces. I was walking past the United Therapeutics booth, when i heard by name yelled out. I looked and found a very friendly face that i hadn't seen in months. It was Chris, my old nursing coordinator from the PH clinic and "medical mom." After all the bear hugs, she asked if I would be interested in speaking in Chicago this fall as a Tyvaso advocate and i gladly agreed, so we'll have to see where this adventure leads....
We proceeded to hit up some of the support groups of all different topics. I don't think any PH patient could be happier, than to sit in a room filled with other patients and discuss relevant topics related to their everyday lives. I loved listening and contributing to the various different discussions.... This trip, being my mom and I's 2nd, was more so beneficial from the networking end than the education. It was such a blast being able to put faces to names with all of the Generation Hope group too. I was able to meet Naomi and her husband Heath from Kansas. We shared our journey's about how we got to where we are now, and its just too funny to hear about all the misconceptions our brains tell us when we are undiagnosed. My favorite from Naomi was on her first date with her husband as they were hiking she stated, "Sometimes i randomly faint when I climb inclines." My own personal statement was, "I'm gonna be asymptomatic until i have a syncopal episode during a bootcamp class at the YMCA and bash my face on a treadmill." Yeah, not normal. Its completely in the human nature to rationalize PH symptoms and why a patient feels them. This is part of the reason diagnosis can be so impossible to identify, until years later when symptoms are much worse. For example, I always told myself I'm just not in good shape for climbing mountains and thats why I was so short of breath and my heart was pounding when i was in South Korea climbing around one of the national parks while visiting my boyfriend.
During the dinner presentation, we were educated on all the history of pulmonary hypertension is regards to research, medicine, outcomes, and future ideas. How freakin cool! The last 2 decades have been nothing but an explosion of amazing findings, and it only continues to look better. Its also pretty sweet touching base with the long term survivors that have had it for 20+ yrs, before treatment was even available and they were the first of all patients to trial IV flolan. A lot of these same people have families, work jobs, live normal lives, etc. Thats staring hope straight in the face! Rock on.
Friday night was probably my favorite time of the whole conference. It was the Generation Hope meet up. We were spoiled with fondu and great company. I got to see many of the people i hear from in everyday emails. I also spent a better part of my evening with the fabulous Colleen Brunetti. That woman really knows how to work things. She has a lot of various leadership roles in the PHA community and has some of the best input there is. We very much think on the same cranial wave-length, so its awesome bouncing ideas and delving into deep conversation. I also had the privilege of finally getting to meet Jenny. We live literally 20 miles from each other, but it took two years and a different state to meet up. She brought her boyfriend with her. Cutest and coolest couple I met that evening! I always loved the term Jenny used to describe herself has a "PH Warrior," such a down to earth individual. Let's say after the first day, i went to bed smiling from such an amazing day, and the types of interactions with people that i long for so often.
Saturday was another day filled with different seminars to get the mind thoughts rolling in different directions. I'll never forget sitting in one of the medically lead sessions about emergency situations. An elderly woman with PH raises her hand and asks the panel, "What do I do if they want to give me nitrates for chest pain?" (side note: Nitrates are a huge no-no for patients that are taking sildenifil or tadalifil. Basically the blood vessels are pre-dialated as a result of the medication and if they were to take another nitrate to relax the vessels even more, your blood pressure will systemically tank out.) One of the M.D.'s from Mayo Clinic says to the woman, "Just tell those EMTs or ER workers that I TAKE VIAGRA!" I think the whole room was filled with laughter.
A majority of Saturday my mind was preoccupied with thoughts of one of our fellow friends. Katie, who was unable to make it because she was put at the top of the transplant list, had received the phone call from her doc that they had a new pair of lungs for her. She was brought to surgery right away and has been doing fairly well since then. I am so stoked for her. This woman is in her 30's and was a marathoner, flight teacher, and just a super funny girl. I couldn't think of a more deserving person of such an awesome gift, to be cured. Its amazing how close you feel to people that are so similar to you, even though you've really only connected via internet or email. Keep Katie in your thoughts and prayers. Keep breathing easy and fast recovery Katie, we're all rooting for you!!
Sunday went by way too quickly, making it a slight rush to get to the airport. The breakfast presentation had a young kid who's best friend had PH. In his friend's honor, he climbed more than 5 peaks from all over the world to help raise awareness. Then to top it off, he and his family did the "50 peaks in 50 days" challenge, where they climbed to the highest points in all 50 states to recognize and help fight pulmonary hypertension. This kid has be about 17yrs old. I am just miffed at the energy and support of everyone.
My mom and i are going to do what we can to hopefully kick up a PH bike tour next summer. We sat in on a seminar that discussed how other members did various "PHundraising events". I always come out of these conferences so inspired. Last time, it solidified my decision to do the MS150 bike tour, this time I think i want to become certified to teach a spin class. My goal and hope is to really do something over the next 2 yrs before the next conference to see what I had done in that time frame in regards to awareness.
Overall, it was a rejuvenating experience once again to come out so hopeful. It also puts me back in my place for how extremely blessed I am. To have the support and energy that I do is something I take major advantage of sometimes. I was diagnosed and treated within 6 days, that is completely unheard of... I was able to dominate nursing school at the same time i was able to learn how to mix remodulin... I went on a boundary waters trip to canada for a week... I get to work closely with other PH patients on a regular basis... i have the best family and boyfriend in the world... this weekend was a solidifying memory of the reasons i have to tell myself to shut up, slow down, and soak up what I truly do have. Everyone for that matter, everyone should stop and take a moment to simply breathe. We're all guilty of feeling sorry for ourselves, but in moments like that you need to allow yourself the chance to feel frustrated, kick a wall, take a deep breath, and know you really are ok.
One of the strongest quotes i heard this whole weekend was a doctor talking about how sometimes PH patients are cursed because they feel their put in that position to think have to think that maybe their lives will end earlier than they anticipated. Only true to a point. The M.D. said "We were all born into life, and life is terminal." So when you walk out to get your mail today and not trip down the stairs breaking your neck or drive to work safely and avoid any type of car accident along the way or make dinner tonight without burning down the house.... do me a favor and smile. You were blessed with another day to dominate. Another day to get out into the world and make a difference. Another day to enjoy the sunshine and beautiful summer breeze. Another day to hug the people that love you. Enjoy it. Life was meant to be enjoyed.
With that i leave you with my last three favorite words: smile, breathe, thrive.
