PHighter Friday: Tegan

First international trip to Japan 2010

My PH story starts when I was six, sometime in 1995. I suddenly started having fainting episodes and was quickly diagnosed with Epilepsy, having uncontrolled Tonic-Clonic seizures. 

Within a year I developed a chest infection/cough, that wasn't going away with antibiotics. The local doctor sent me and mum down the road to have a chest x-ray. I don't remember specifics but I know that it landed me pretty quickly in the Royal Children's Hospital Melbourne on the Cardiac ward. Throwing my family in to chaos with my two younger sister being looked after by my grand-parent, while mum looked after me.

Being diagnosed with "Primary Pulmonary Hypertension" Functional class 4 (now known as Idiopathic Pulmonary Arterial Hypertension) was life changing to say the least. This diagnosis didn't just effect me emotionally and physically, but my entire family, my circle of friends, my school life, after school activities and general living. I was initally started on "Diltizem", and given a 5 year life expectancy. As a 6 year old I was blissfully unaware of this.

I managed to go to school full time, partake in sedate after school activities and play with my 2 sisters. If I forgot to take my medication, or refused (as i did in the beginning), I could feel the difference, and would often have a seizure as a result.

Around the 5 year mark I got really sick. I was unable to start high school, I was in and out of hospital trying to manage the symptoms. The addition of a few medications and eventually oxygen.

Hosptial stay 2001/02, recently started
 Epoprostenol and looking much better already

I tried "Beraprost" for a short time, but this made me feel sick three times a day for about thirty-sixty minutes after each dose. It made me feel isolated from my friends as I had to go to the school sick bay to have it during class, and rest until the side effects wore off. It also didn't make me feel much better. 

This period is very vague to me and everything sort of blends together. I know I had multiple seizures at school, ambulances were called on multiple occasion, late night trips into the city to get admitted quickly and always extra drugs and bloods and tests. Mum and I spent countless hours stuck in traffic on long stretches of road on the way to the hospital, we played many cars games, but often I was vomiting or simply too lethargic to play. 

Around this time I was placed on the transplant list waiting for a heart and lungs. I was too ill to go to school at this time, nothing was working. I made it through the year using a wheelchair, oxygen and many many medications. I was in heart failure and the rest of my organs were soon to follow, fluid retention, vomiting and weight loss among the symptoms. I was palliated, something i wasn't really aware of. New teams of medical professionals were seeing me all the time to help with one symptom or another, there was a constant stream of consults, reviews and medical rounds. I had privileges from hospital, and small windows at home.

Early 2001 I was given the green light to start this magical, mystical drug from the US (Epoprostenol) as well as oral "Bosentan" (plus my cocktail of "normal" meds). Conditions applied, a fair few. Mum had to be trained in making the medications, and had to commit to making it up from powder to liquid every single day. We had to be self caring with a PICC line (a semi-permeant line directly into the heart.) I had to do any test they requested (6 minute walks, ECHO's, ECH/EKG, bloods and Cardiac catheters). I was so unwell I was not yet able to have the permeant line, so I had a temporary one inserted with light sedation. 

Kakadu National Park 2014

The temporary line proved to last quite a while. By the time the 2nd one had packed it in, I was well enough to have a bit more sedation and get my permanent line. This was a pretty good indicator that this drug was working. I made leaps and bounds from here. I came off the transplant list, I was no long made palliative and I slowly started going to school. I had missed a few months of school and had to be slowly reintroduced. Luckily with a supportive school, and some great friends I got back into it.

The combination of drugs has changed a bit over the years,. I'm no longer in any organ failure, and I take a portion of the drugs I was taking. I take 2 medications for PH, Epoprostenol and Sildenafil. However, I do take a few a preventions of to make life a little bit easier with symptoms.

It took me a very long time to come to terms with my illness and accept it as part of my identity, but not something that will define me. I can thank the use of this drug for the life I lead now.

I work full time as a paediatric cancer nurse, I ride my bike 7kms each day to work and I have the travel bug. I have it in a big way. 

I still have to undertake the same tests, just much less frequently. I can't swim in the ocean/pool, I can never be too far from a hospital and I have to carry around a pump everywhere I go 24 hours, 7 days a week. BUT I will always try to do this with a smile on my face and a positive attitude!

I've been to over 20 different countries and can never wait to plan my next one. Of course I have limitations, but I'll take what I can get.

Repackaging 3 months worth of medication
for my upcoming holiday

My next trip is the biggest and the scariest and the absolute most exciting thing that I have been able to achieve since diagnosis. I have spent the last 6 months planning everything I might need for a 3 month holiday in Sweden and Europe. There is about 40 kg of supplies and 4 kgs of clothes.

This is a recent development as I switched to a more stable version of my drug. It means more freedom and less volume of medications (Thanks Veletri!). 

It has been a lot of preparation, research and challenges at every corner. I started to document my issues with travelling with a serious chronic illness and intend to continue while I travel.

I know I've had a hard life but I know its also been full of interesting moments, filled to the brim with love and most of all its been surprising. When you exceed the doctors expectations by 15+ years you learn to live life to the full.

There are so many people who help me with my challenges. I feel this is the key to my success.

Stonehenge England 2013

My blog can be found at https://www.tumblr.com/blog/tegamegadrive and my instagram at https://www.instagram.com/tegamegadrive/

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!

So after this novel sized blog post, I hope through writing this it helps even just a single individual. We were put on this earth to impact people, and the journey is suppose to be wild at times. My favorite quote is from Mark Twain, “Sanity and happiness are an impossible combination.”

Go rock your day!