Friday, 12 September 2014
PHighter Friday: Lauren
I am Lauren Slattery. Life has given me quite an assortment of roles to play. Some of these include: daughter, sister, fiance, working professional, dog lover, world traveler, Green Bay Packer fan, practicing yogi, road cyclist, etc. These roles help define me as a person, as well as motivate me to keep striving to become a stronger individual. Life has also assigned me the role of fellow PHer. However, unlike those other roles, this particular one does not define me, nor will it ever.
My life did a complete 360 about 4 ½ years ago. On January 15, 2010, I was diagnosed with PAH. It is a long story that got wrapped up in a very short amount of time (let me explain!). I have been an active individual pretty much my entire life. I love being able to move and explore the world around me. It just so happens that I was in my third year of college on the last part of Christmas break. I decided to attend a YMCA bootcamp class on a Friday night. After warm ups, we were suppose to run to the top of 3rd floor gymnasium, where the indoor track was located. Well, I warmed up and I made it up those stairs just in time to experience my first syncopal episode at the top while I slam my face on the side of a treadmill… TGIF, right?!
So without too much detail, I was body boarded down those same 3 flights I had just run up to the local ER to be admitted for observation. The doc ordered a CT scan to rule out a pulmonary embolus because I had just returned from 14 hour plane flight from South Korea about 3 days prior. Negative for P.E. The scan did show the tops of my lungs were inflamed, probably from hiking in the snowy mountains a week prior. There must have been enough “pink flags” along the way to want to admit me overnight and consult cardiology in the morning. I kind of just brushed the whole thing off and ended up watching movies from my hospital bed with a good friend most of the night.
The following morning, the cardiologist on call for the weekend ordered an echo with a bubble study. Almost as soon as the probe hit my chest, the doc knew what my issue was. I will never forget his words, “You have pulmonary hypertension. We can’t treat you for that here. I am sorry.” Ironically, I was in the 3rd year of nursing school and had my med/surg text book with me. I went ahead and opened it to the cardiac section where it talked about pulmonary hypertension. I read it. It told me I had approximately 2.8 years left before I kick the can. I am a naturally an optimist and quietly put my text book away and hugged my friend while my parents drove 2 hours south to come see me.
My parents arrived at the hospital and the cardiologist returned to talk to all of us. His recommendations were to seek the help of a specialist, which there happen to be a few in the area about 20 minutes away. We chose to go to the out of network, but world renouned Dr. Diane Zwicke. Probably one of the best decisions I’ve ever made to this day.
I was transferred to St. Luke’s hospital in Milwaukee, WI that same night and underwent a TON of tests the next day. I was discharged that Sunday evening because the academic semester started Monday. I met Dr. Zwicke that Wednesday and she told me the game plan: right heart cardiac cath on Friday morning, hickman line placement Friday night, be started on an IV miracle drug the same night. One of the reasons I respect my cardiologist so much is because she doesn’t sugar coat anything, she is so straight forward there is no way anything can get miscommunicated. Her game plan happened exactly as stated. The only hang up was the preauthorization on the IV Remodulin that the insurance company decided to drag there feet on. Not to worry, all that clears up very quickly when an angry cardiologist has a “friendly” conversation with the board of directors at the insurance company! Diagnosed and treated in 6 days- that is UNHEARD of. I am so incredibly thankful for this detail, for many patients it takes years to get an actual diagnosis, I will never stop being thankful for cardiologist who ordered that first echo…So onward, new line, new pump, new semester as a full time nursing student. I was awfully glad when I had successfully finished that spring semester. To be quick and concise, those were some mighty trialing times.
My next follow up appointment was in June 2010. My mom came with me to see Dr. Zwicke grinning from ear to ear as she told me my heart had completely remodeled itself and went back to normal size and I would be coming off of the pump within a month. I was started on Adcirca (high dose cialis- which is a great icebreaker by the way:P). To celebrate getting my heart back, I started training for the MS150, which is a charity bike ride to raise money for MS research while takes place over 2 days and riders go 75miles each day. My mom did the ride with me and we were able to complete 110 miles, due to extreme weather conditions. I was pretty doggone proud of myself after that summer.
I finished up my final year of nursing school and my doctor asked me if I would work with her, and I gladly agreed. I worked full time as a registered nurse on the same pulmonary hypertension floor I was a patient on for 3 years. It was such a fulfilling job, being able to connect with newly diagnosed PHers. I think it was a good light for those new patients to see: you can have PH and live a normal life.
Its hard for my to try and compare to what life was pre-diagnosis to after. About a year before I was diagnosed, I remember getting winded and tachycardic at random times while I exercised, it was never very consistent. It was hard for me to climb to the 3rd floor of main hall for a few of my classes, but that is easy to write off because I was carrying a heavy backpack and a lot of my other friends would be winded as well. I do remember one particular night running up a sledding hill wearing all my snow gear with bad palpitations when I got to the top, but once again it is easy to say, “Oh, I am just out of shape for running up hills.” These random moments when I would be symptomatic just baffled me. I just remember thinking, “This is so strange, because I typically work out about 4-5 days a week.” Once I started with medication, I could tell a pretty quick difference.
I like to think I live a typical life, with the exception of certain hobbies that kind of set some things apart. As mentioned above, I hold a huge passion for world travel in my heart. Last fall I was able to backpack Europe for 3 weeks with my boyfriend. He picked the perfect place in Switzerland to pop the question that overlooked the city, had an amazing blue-green lake, and the Swiss cowbells echoed off the Alps from the valley below us.
On a normal weekday: I wake up around 9:30am and sip my coffee. I romp at the beach with my dog in the early afternoon and work 2nd shift at the VA medical center in Milwaukee. I am currently a progressive care/ICU step down nurse and love giving back to the veterans. I am getting married in early October in the Michigan woods with plans to honeymoon for two weeks in Thailand. This has been a majority of my focus lately.
Recently, I was transitioned from Tyvaso to the newly FDA approved Orenitram (oral remodulin). This has been a challenge because it takes awhile to titrate the drug back up to the similar dose in nanograms that I was receiving with the inhaled therapy. The first week of the transition was pretty rough with the “queasy belly” side effects and I was being underdosed. Once the dose correction was initiated and my GI system adjusted, I truly can’t complain much. I am still not quite up the physical activity level I was at before, but there is nothing wrong with taking time to smell the flowers either!
I know a lot of my journey sounds pretty easy going, but I have had my fair share of bumps in the road. There are many moments in a day that I get frustrated with PH. I wish I could just grab my laundry from the basement and walk to my 2nd story apartment without needing to stop. Some days I can, and those are the days I count my little victories. I don’t truly think a PH patient ever fully gets over the fact that they have a long-term condition, because there are many moments in a day that slap you in the face with full reminder that your heart is working very hard. I do think that a PH patient develops coping mechanisms to not worry about the small things.
For me, a lot of the PH journey is psychological. Sometimes when I feel like things are crazy and out of control, I have to sit myself down and close my eyes and remember I am never given more than I can handle. If anything, I am my own worst enemy. I think a lot of everyday people suffer from anxiety. I have found that yoga is my natural antidepressant. The breathing regulates HR, punches cortisol in the face, and the stretching is such a compliment to the body.
A huge portion of my well-being comes from the people in my life. I am so incredibly thankful for my family and friends. My parents, brother, and sister in law are all so loving. A major source of my support comes from my fiancé. He was actually overseas while I was diagnosed and not returning for another 8 months at that time. He could’ve easily cut the cord and waved goodbye, but the fact he didn’t says a lot about his character. The support from my friends is out of this world. I seriously don’t know how I got to lucky to have the friends that I do. Lastly, I don’t think I could ever say enough kind things about the PH community. Everyone is out there to lend an ear, propose an idea, seek support, and share in victories. You guys rock!
Go rock your day!