PHighter Friday: Bernadette

Hello! My name is Bernadette and I am a PHighter from San Francisco, CA. I am an identical twin. We are both lupus patients. Our diagnosis occurred November 2004. Same health condition, but very different symptoms. I experience fatigue on a daily basis, swollen joints, Raynaud's, thinning hair, and photosensitivity. I found out last year that I also have Sjogren's, dry eyes and mouth. My biggest battle is pulmonary hypertension.

I can remember when I was about 18 years old. I started to feel dizzy. Back then, I thought I was just stressed out since I was in school full-time and lacking sleep every week. So I ignored it and didn't think much of it. A year or so later, the dizziness began to intensify, my heart was beating at a faster pace, and I found myself breathless after climbing up stairs to get to class. I went to the ER a couple of times too. ER doctors kept telling me I was fine and that it was all stress related. I wanted to believe that I was okay.

Fast forward to 2007 when I was 20 years old. I decided to take a shower one night. Little did I know, this would be the a-ha moment. I showered for a good 20 minutes or so and the water was pretty hot. I started to feel really lightheaded. That never happened before. I had to turn off the water and step out. I called my rheumatologist right away to let her know what had happened. She ordered an EKG, a stress test, and an echocardiogram immediately. She was onto something. I was getting worried. I was a teenager and I was so confused about the state of my health. The EKG and stress test came back normal. The echocardiogram did not. I was told I had an abnormal lung and that more tests needed to be done. I was scheduled for a right heart catheterization in October. I was pretty anxious before the procedure. I was new to this. I was scared too. Thankfully, my mom was there to support me. I remember lying down for a good six hours (they went into the groin area) and I couldn't move. I can also remember the nurse telling me to go on a low-sodium diet.

A few days after the procedure my diagnosis was confirmed: pulmonary hypertension. October 11, 2007 to be exact. My pressures were elevated, can't remember the exact figures. I knew what hypertension was, but what did it have to do with my lungs? I had to meet with a pulmonologist ASAP. I was still very terrified. What did this mean? I thought a lot about the future. Doing my own research didn't help, the statistics scared me. How long would I live? The pulmonologist was reassuring. There is no cure for PH, but it can be treated. My mom was devastated when she found out I couldn't bear children. It's still something I think about to this day. I know I have options, such as adoption. I remain hopeful. Anyway, the doctor prescribed Revatio, my first PH treatment. I had to be positive. My journey isn't a walk in the park. I was in community college during this time. My goal was to transfer out in two years, but that eventually became 4.5 years. I had to become a part-time student and slow down.

I've had my share of losing health insurance at 21, dealing with the cost of medication(s), and trying to find the best care possible. 2008-2010 was so hard. I hit rock bottom. I eventually qualified for health insurance after a long wait and quickly decided to be seen at UCSF. My sister was already being taken care of there, I wanted the same for myself. I adore my lupus and PH team. :) They really listen and have always encouraged me to do my best. Thank you, UCSF!

I transferred to UC Davis, Fall 2010. It was so rewarding! :D I was ecstatic!!! Adjusting to the university wasn't so easy. I was 75 miles away from home. Davis is a small college town. I had to make new friends and everything was much more challenging compared to my community college load. Each quarter was 10 weeks long. I was definitely missing my 18 week semester schedule. During my first quarter, I felt alone. It was a silent struggle, no one knew my story. I was quite fatigued. I had to set a time for napping, even in between classes. Things eventually got better. I made a lot of new friends and became an advocate for the Asian American community on campus. The last two years of college was a dark time for me. I had to switch medications at the start of 2012. Letairis and Adcirca were my BFFs. My maternal grandmother passed away in October 2011 and my grandfather in December 2012. I didn't know how to cope because they were so important in my life. They were my role models and supported me when I first transferred to UC Davis. Education meant the world to them. I kept my word and I always told them I would finish.

My last quarter of undergrad, I was enrolled in an autobiographical course. I shared my story about health, family, and my resilience. I was exposing myself to my peers and friends. I was nervous prior to starting my piece, but it was rewarding because everyone was supportive. I graduated in June 2013 with a BA in Communication and a minor in Asian American Studies. It was a very emotional time for me and my family. I finally had a degree!!! :) I'm taking an academic break for now, but I haven't closed the door on pursuing higher education.

It's been six years, going on seven since my diagnosis. Currently, I haven't been feeling great. My six minute walk test a few weeks ago didn't go so well. I can tell that my medication needs to be adjusted. My PH team wants to start Tyvaso and hopefully that'll improve my condition. A right heart cath also needs to be done. I'm hoping to start walking at a faster pace and biking. Running only seems like a dream right now, but I'm hoping to do it again. Slow and steady. 

My PH journey has been a roller coaster, but I'm still here. At times, I'm fearful yet I block the negativity and opt for optimism. It all starts with yourself. I've learned to listen to myself. Sometimes, one has to decline an invitation for fun. Learning to say no is important! Getting enough sleep does wonders for me, even if insomnia creeps up once in a while. Taking my medications regularly is a MUST! I can remember a time when I didn't listen to my healthcare providers and they lectured me good. Always surround yourself with positive people. Their energy is contagious. Have faith! Many people pray for me and I pray for myself. I believe the big man upstairs is listening. My siblings mean the world to me, they are my heart and soul. I love you, Christian, Bianca, and Loretta! <3 Our dogs too, Laki and Coco. Journaling and blogging helps me cope. It's always good to vent. And take up as many hobbies! I love sports, Go Niners, Giants, and Warriors, photography, and traveling. I hope to see the world soon. But for now, domestic travel will do. And I haven't given PH support groups a chance yet, but I'm hoping to very soon. I'm a PHighter! Can't stop, won't stop.

You can find me on Instagram (@heartbern)! I post a few times out of the week. :D

Love to you all!

Bernadette

"Don't give up, don't ever give up!" - Jimmy Valvano

PHighter Friday: Haley

I, like so many other young adults, spent the majority of my high school time impatiently waiting for the "real world." I was tired of high school, tired of being a so-called kid, and my body was physically tired. But, two weeks after my eighteenth birthday the real world came crashing in brutally. I was diagnosed with stage four Pulmonary Hypertension, and was given two years to live. Ahhh, the real world was SO awesome so far.

When diagnosed with something that is terminal, people automatically think you have all this wisdom, you're at peace with your life, and you're somewhat a courageous fighter. We see it in cancer books, on Grey's Anatomy, and other ridiculous interpretations of illness. I spent at least the first year of my diagnosis trying to evaluate my emotions, my lashing out at anyone, and my random crying sessions after doctor appointments. What in the hell was wrong with me? Simple; the picture in my head of what illness is supposed to be, and what it actually is was in the process of tearing me in half.

People really do underestimate and ignore the mental side to a disease. Yes, the problem is in my lungs, which works its way to my heart (causing it to work harder) but it eventually leaves an impression into my actions, thoughts, feelings, and emotions. After a while, you feel like a disease. I would be treating my body for a while, then decide I didn't want to live, stop treatment, and was battling suicide. What was the point of fighting something that would claim a life I didn't even want to keep?

After a broken relationship, and removing certain people from my life, I was surrounded by my family, and best friends only. They were probably just as tired as me because they had spent the past couple of years watching me carelessly throw myself into deaths arms. When I looked into their eyes all I could see was a high school memory of one of my friends in his beautiful casket being lowered into the ground because he had fallen victim to suicide. I remember his parents and friends standing around, and hardly anyone could make eye contact with anyone else because of the perfusing sadness throughout their face. The idea of my family, and friends standing around my casket was unbearable. There in that moment I took my first step into my own sort of mental rehabilitation, and acceptance of Pulmonary Hypertension.

A little over four years later, I'm writing this with oxygen tubes up my nose. Its not the most ideal picture I had in my mind, but at this point I wouldn't, and literally could not have it any other way. Having Pulmonary Hypertension has been a form of art called Mind Over Matter. Mentally, I wrapped my head around this disease and I felt like my body soon followed. My art now has a purpose, my writing has given me a purpose, and I've met countless supporters, people, and had amazing opportunities. Why? Because of my crappy lungs. I really am thankful for them sometimes. It really takes reminding yourself that you have a disease, you are not the disease. On this email sent by Serena, she states, "Statistics are not kind or hopeful when it comes to this disease." Then she asked, "What have you been able to do that you were told you cant?" Well my statistics were given to me in the words of, "You may not live another two years" and that my loves is what I've been able to do; live.

-haley.
phenomenalhaley.wordpress.com

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!

#PHighter Shirts

Thank you to everyone who purchased a #PHighter t-shirt. The campaign is ended and hopefully you will be receiving your shirt soon! We helped raise over $250 USD which I will be donating to the Pulmonary Hypertension Association of Canada.

Because of the positive response I have decided to sell #PHighter shirts for the winter. The shirts read #PHighter, come in the grey, with purple writing. Below is an example of a the long-sleeve tea that is for sale.  The price for one sweatshirt/long sleeve shirt is $22 USD. If I don't reach the goal of selling 10 of these shirts in 21 days none of the t-shirt sales will go through, and no shirts will be sold (if you reserved a shirt you will not be charged.) If I reach the goal of selling 21 shirts in 21 days and you reserved a shirt, you will be charged for it after the deadline to sell shirts has been reach. To reserve a shirt and to learn more about where I will be donating the profits to, please visit http://teespring.com/PhighterSweater.

PHighter Friday: Lizzy

My PH Story

Lizzy

 I still can't imagine what it must've been like for my husband to find his wife laying on our bedroom floor passed out. Lifeless. Two little children by the body looking helplessly, at their sick mom. Jacob, 8, has since vowed never to leave my side. What a huge responsibility for a little eight-year-old boy! 

Now let's go back to the first symptoms. Breathlessness in summer, 2008. I had just birthed my daughter that same year in January and thought I was out of shape. Boy, too many enchiladas, if you asked me. Wink, wink. I had also just accepted an Operating Room position in Irvine, California that March. Lots of newness for my husband and I. The prior year we were living in Houston, Texas where thunder storms were really that, a THUNDER storm. Not like here in L.A. I laughed every time Jackie Johnson, the weather girl, announced a "Storm Watch" on TV. Whatever. Hehe. We were so new to the community and didn't have family nearby. Here I was running around potty training a rambunctious toddler while carrying a newborn in my arms. Oh -and did I mention my husband and I had just opened a new business? Yup! A Collision Repair Shop. We like excitement.  

We enjoy Thrift Store Shopping!

Then August came and I started getting out of breath by just climbing the stairs at home. In a matter of two weeks, it got so bad that I literally had to stop after just climbing five steps! By the time I got up to the second floor, I felt like I had an elephant sitting on my chest, as if I'd just ran two miles. Wha? My husband couldn't believe it. I've always been very active. Of course, right? These things only happen to us girls that love life! I use to run on the beach in Santa Monica before work every day back when I worked for a plastic surgeon. Back when I was so caught up with myself, making money and being 'successful'. 

Things have changed.

I believe the Lord took this opportunity to show me some humility. But above all, He's shown me an unmeasurable amount of GRACE. I can actually say that this, has been the best thing that's ever happened to me. And I know that sounds corny and movie-like, but it's true. I am so grateful for the wonderful friends and family that have stepped up to support me in my most darkest place. I've gone through a world wind of ups and downs, emotionally, physically, spiritually, and everything else "-ally". 

I like to host fun girly Tea Parties with my cousins

So I was officially diagnosed on Halloween October 2008 I don't know what stage I was at then but now I am considered a Stage 2, we are calling it "Primary Pulmonary Hypertension" because we have no idea why I got it. My PH is idiopathic, I never consumed recreational drugs, no heart problems run in my family, I didn't have 'rough' labor with my children (my labors were actually fairly easy). I have no idea why I have Pulmonary Hypertension. My daughter was 10 months old when I was diagnosed with this horrible disease, and my son had just turned three. I was a lively thirty-year-old working part-time in the Operating Room and finishing up with online classes in order to get accepted into nursing school. I was so proud of my 4.0 gpa. I felt like I could do it all. I couldn't. I was the one who never asked for help. Now I braced myself as I uttered these words to my husband, "Can you. Would you. Um. Empty the dishwasher? I get out of breath from leaning over." Not that he wouldn't do it, I just always did everything. I liked my independence. Loved it, actually. 

Here's my wonderful husband and daughter
at our Shop in South El Monte, California

I realize now, how God's hand was on my life from the beginning. Always there to cushion the blow. If we had remained in Texas, I probably wouldn't have been able to afford the expensive treatments. If I hadn't gotten the job I did just five months prior, I wouldn't have had the benefits that now pay for pretty much all my treatments. We had recently started attending a church in the area, and some of those girls and their husbands, are now some of our best of friends, which we consider family. They've been with us through thick and thin. They've provided meals for us whenever I have catheterizations. They've picked up my kids to give me rest. They've brought dinners and laughed with us and cried with us. They've shown me Jesus' hands and feet.

I was put on Tracleer, blood thinners, Viagra, Ventavis, and now recently, switched from Ventavis to Subcutaneous Remodulin. Lots of learning curves. But with each one, comes appreciation. Gratitude for another medication. Thankfulness for another year of homeschooling my children. And working part-time with the nurses at the Labor and Delivery floor. Life is good. But above all, God is good. All. The. Time. 

This is what a normal day of Home Schooling looks like

You can check out my blog LifeAsLizzy.com if you'd like to. I'm sorry it's been a while since I've written a post on it, life with meds is busy! ;-) You can also follow me on Twitter, @LifeAsLizzy. And if you'd like to follow some crazy pics of my everyday life, request me on Instragam @LivingLifeAsLizzy. 

Many blessings to you! Thank you to Serena for giving me the opportunity to share a little about my PH journey through her blog. What a great work she is doing here. 

~Lizzy

My daughter's kinder graduation this year