PHighter Friday: Jenny Janzer

My childhood was a dream, a dream that I woke up from on April 6^th 2001 as I held my parents hands, shaking in a doctors office with ringing in my ears- you know, the stuff of movies, just… not the kind you want to experience. I was only 11 years old when I was told I had Primary Pulmonary Hypertension (That’s what they called Idiopathic back then). I was stage 4 and pretty sick… the doctors told my parents there was a chance I could be dead within 6 months. This week I just surpassed my 15^th year of dominating PH. I never thought I’d make it this far, but I’ve got a fighting pulse within me that refuses to quit.  My name is Jennifer Janzer. The name Jennifer means, “white wave,” or “white shadow,” or sometimes, “the fair one.” There’s a reason I tell you this because for those first 11 magical dream years, I grew up on a lake and from the minute I could, I’d spend every day in the water. I embodied my name- white wave. My mom called my sister and I her little fish. We would snorkel, just lay in the water, rock hunt, swim out over the weeds to sandy spots or catch frogs and turtles while swimming amongst them. I played in the lake, I bathed in the mud, I was an earth-kid, claiming Mother Nature as one of my nurturing parents. April 6^th 2001 I was told I would not be able to swim ever again. It was probably the biggest blow they could have given me at that time. I also had to start on an IV pump right away, which would pump a drug called Flolan into my chest. I had no idea what this meant and went to sleep for the surgery thinking when I woke up, I’d be fixed, not attached to a machine that my life depended upon.

This change skyrocketed me into maturity. I no longer understood what my peers did, boys didn’t matter, the right shoes or clothes didn’t matter, making sure I had medicine with me 24/7 mattered, making sure I changed the ice packs on my Flolan every 4 hours mattered and keeping me isolated is what mattered. My doctors upon diagnosis, whether they meant to or not, instilled a fear within my parents and I that crippled us while I gritted my teeth through middle school. I’ve blocked out a lot. By high school I realized how ridiculous some of these rules were and fought against them like a little rebel. I wanted to be normal. I was in severe denial. I sobbed while watching my friends swim every summer, sometimes sitting on the pier, watching, listlessly chatting. I lost friends at school; people would point and whisper, “there goes the diseased girl.” People feared me- people didn’t understand me.
I was pulled from gym, but actually quite ecstatic about that as I had never been good at it. I was always last for the mile run, passing out and vomiting while we ran laps. Flolan was my lifesaver, but it left me miserable with side effects. I began to call myself the “blood leopard” because of the bright hot painful red rash the Flolan left all over my body, including my face. It’s this hideous splotchy white and red rash. I still have it today. I spent so many mornings as a teen crying and frustratingly trying to cover it up with layers of caked on make up and tears. I’d skip some days of school just because I hated how much I looked and felt sicker than anything. The pain drove deep into my bones and I became severely underweight. The side effects of this medicine make me miserable. I went through a depression and my anxiety grew to the point I became agoraphobic and couldn’t leave the house without having debilitating panic attacks.

At 18, I finally sought out counseling. I overcame that anxiety and so much more. I finally then, reached out to other PH patients, for the first time, breaking my shell of denial. My life began to brighten. I saw so many other PH patients going to school or working jobs. I had finished high school and decided to try college. I’d see doctors and when they’d find out I had PH they would say, “wow well good for you for going to college,” as if they knew I could never finish, but still felt like telling me, “hey, nice try.” It may have taken me seven years but I graduated with a Bachelor in English/ Creative Writing with a concentration in poetry. Writing has been my cure in many ways. 

If I wasn’t sick I’d love to be a geologist however, out in the field, digging up rocks, feeling the earth change beneath me, measuring its growth in sandstone dunes and river-carved valleys. PH took a lot but it also gave me a lot. I learned responsibility, I learned to laugh at myself, and I learned to love every miniscule moment. I know it sounds silly but I never find myself bored anymore… the world is bursting with possibility and even on the days I am restricted to my bed I’ve learned to value it and find ways to occupy myself if even just in my mind. I’ve always had a wild imagination. Any time I’m feeling good or even “okay”, it’s a good day. I no longer carry the denial or angst or hatred I did as a young teen. I grew to accept my rash- and found the best make up to conceal it on my face- (Kat Von D’s Tattoo cover-up make up has been my life saver, I so wish I had it through high school.) As of right now I’m on or have tried pretty much every medication for this disease. My story is so long that if I keep going much longer I’ll type you a novel. I dabbled in SubQ Remodulin for 2 years, but got sicker. However, in those two years I got so much freedom from the mixing and 24 hour watch of my pump that it was worth it. Flolan saved my life again as I went back on it at age 20. I also am on Opsumit, Warfarin, Digoxin, Lasix, Oxygen and my other least favorite- Adcirca; again for the bummer side effects it gives.

I also suffer from Ulcerative Colitis, Psoriasis, Asthma, and had Graves’s disease until I got that raging hormonal thyroid scraped out.  Life hasn’t been easy but it’s taught me to appreciate everything. It also taught me the value of people, true people that care. It’s rare to find a gem amongst all these grains of sand and the select support system I have I couldn’t be more grateful for. They make life worth living. I’ve found other things I love- music, for example. I don’t even care about what I look like anymore or who thinks what of me, I’ll drag my o2 tank right into a punk mosh pit, I’ll haul it around while I dance until I can’t breathe at folk punk shows and rock n roll festivals. I may look ridiculous, sometimes I get weird looks or rude comments but I feel strong. The more I smile, the better I feel. I also found a love in unsuspected places- abandoned buildings. Maybe I feel a connection with them but there is something exhilarating yet calming and just “right” about visiting them and photographing them. I can take the grimiest looking building and turn it into art with the right lighting and angles, or take a decayed peeling rusted post and showcase it’s abstract beauty, forcing people to look at things they would probably never think twice about. Forever, though, writing will be my special outlet to the constant pain PH produces and the constant fear, guilt, and anger it brings into my life.


Speaking of fear, since I was 11 and learned exactly what a lung transplant was, and had to listen to exactly what the surgery entailed, it has been my biggest life fear… and now it is my reality. My family was not ready for this; they have been my biggest support system. If it weren’t for them I wouldn’t be where I am right now. My mom gardens and when I was younger we had to come up for a new name for transplanting flowers because I couldn’t even hear the word “transplant” without having a panic attack. I’ve come a long way since that, but I’m still terrified, and I now need new lungs or I will most likely be dead in 1 to 2 years- or so my doctor said. Yeah, I’ve heard that before, DUDE, but I’m a WARRIOR and I don’t plan on letting this disease defeat me anytime soon. Life has given me a lot of lemons. And I don’t sugar coat it, no, I’m not about to make some lemonade. I eat that lemon, rind and all and spit the seeds out to the sky, grinning.

So, as much as this next step scares me, as much as I shake at night, and quietly sob through every morning, I will get through this, because like everything else I have to and I do. Looking back at what my name means, I now more so embrace the idea of the white shadow and the fair one… fair however, as in I keep a balance in my life. And white shadow as in, I will bring light to even the darkest corners I find myself in. SO! Bring it on, body! You may be trying to kill me, but I am not letting that happen anytime soon!

You can find me/my art and writing on these social media sites:

gofundme for my double lung transplant: www.gofundme.com/2bp6gthb
Instagram: @mostpulp
Tumblr: mostpulp.tumblr.com
Etsy: mostpulp.etsy.com

PHighter Friday: Astrid

 Hi everyone!

Hi everyone! My name is Astrid and I am 22 years old. I’m a newly diagnosed IPAH patient. I was diagnosed about 3.5 months ago and I live in The Netherlands.

It all started in 2014. I was passing out while I was doing sports. I did not think about it much until the

beginning of January 2015. I started to get extremely tired and I could not walk for 100 meters without gasping for air or getting dizzy. I also had palpitations. I could not work (I work as a registered nurse at a local hospital) and I was too tired to follow my classes (I was doing a bachelor in anesthetic and ambulance studies). I had no idea what was happening to me. The only thing I knew was that I needed to see the family doctor as soon as possible to get it checked. She thought I had some viral infection and I went home.

My symptoms were worsening and I felt so bad that I went to the ER on April the 17th. After some tests at the ER they were thinking about Pulmonary Hypertension. I knew what it was because of my medical background and I was so shocked! That evening I had an emergency RHC and my mean pressures were in the 120’s. My heart was exhausted and I was in NYHA (WHO) class 4. I went immediately to ICU and started with Veletri. I was there for 8 days. My brother returned immediately from his travels in Venezuela, I knew this was serious.

They were increasing the dosage of Veletri day by day. It was a pain in the butt because of the side effects. However, the nurses and doctors at the ICU were very nice and attentive, which made everything a bit better. While I was laying over there I always stayed positive. When I heard I would be attached to a pump 24/7 for the next years or even my whole life it was hard but I was thinking that if I could live a normal life with this pump I couldn´t care less. They told me they did not know if the medication would work out for me because of my high mean pressure, so there were some serious doubts about my recovery. However, I never lost hope. In the back of my mind, I knew my story was going to be a different one. After 2.5 weeks I was discharged from the hospital and went home to my parents house.

First time riding my bike again since diagnosis!

The first week of being home I was walking the dog again. THANKGOD! I was not out of breath anymore or neither feeling my heart pounding out of my chest. Day by day it got better. The second week after being discharged I was even riding my bike again. I live in The Netherlands so we do everything by bike over here. It was so weird and above all expectations. Every time I was riding my bike again I had tears of joy. I went back to my own apartment and started living on my own again.

In July I started working again at the local hospital. Because of the things I went through I started to realize even more what being a nurse is all about. The negative thing was that I decided to quit my studies because of some serious delays. My life is pretty normal right now besides of having infusion therapy 24/7. A couple of weeks ago I had my first echo since the diagnosis. My pressures downsized enormously and my heart was in pretty good condition again. It does not seem to suffer from the pressure anymore. My pressures are still above the normal range though. I went from class 4 to 1+.  I hope to get more better in time. I also started to eat cleaner and do (basic) work-outs. It is still impossible for me to do running but that is fine with me.

This week I had some great news. My PH specialist wants me to switch from the infusion therapy to oral medication. This process takes a couple of months and I just started. I need to have a lot of patience and faith. I hope it all goes well. I am a little nervous, but even more excited to have a look at my future results.

3 months after diagnosis

What I want to say to all (new) PH patients: have hope and faith! There are better days to come. On some days life is all about dreams, hopes and visions for the future. But there are some days where life is just about putting one foot in front of the other and that is okay. We need to remember that researchers are doing the best they can for us day by day. I have noticed that new medications are being introduced every year. Hopefully these new coming medications will keep us stable.

At last I want to thank my parents, my brother, my boyfriend, my friends, my PH nurse Nicole and my PH specialist Dr. Heijdra. Without them I would not feel as good as I am doing today.

PHighter Friday: Kellie

Life beholds many unforgettable experiences.  One of those cherished moments occurred for me on February 1, 2007 when Paul completely surprised me with his marriage proposal.  I was ecstatic to say the least, and we quickly set to work on planning our August wedding.  In mid-February the wedding planning came to a brief halt as I dealt with a short bout of the flu.  Once I was feeling better I dove back into wedding planning mode! However, something was not right as I became more active.  I was unusually short of breath during my workouts.  After a few weeks of trying to "get back into shape" I decided it was time to schedule a doctor visit.  The results came back fine, so once again I decided to start the workouts and push even harder.  By May my breathing was continuing to get worse.  Paul convinced me to set up another doctor appointment.  By the time I set up this appointment I could barely walk from my car into work without having to stop and rest.  At this second visit my doctor decided it was time to look at my heart.  A few tests were done and an echocardiogram was scheduled for a couple days later. 

On Friday, May 25, 2007 I arrived for my echo a bit apprehensive, but hoping I would receive a simple explanation for my shortness of breath.  It wasn't long before I sensed something "wasn't right" during the echo, but the technician wasn't about to reveal what it was to me.  I will never forget the look on my doctor's face when he came in to break the news to me that my pulmonary pressures were extremely high, there was major concern about my heart, they were going to do a few more tests, and then I would probably have to be admitted to the hospital that day (which I was). 

After being admitted to the hospital the panic really set in.  As I was being wheeled away for a right-heart catheterization, I remember looking into Paul's eyes and both of our eyes immediately pooled with tears...tears of fear and the unknown. After the catheterization I was sick, chilled and scared.  Whatever I was given at that point knocked me out for the night.  The next eight days I slowly learned more about my disease and the aggressive treatment regime I would be starting to try halt this progressive illness.  It was decided that triple-therapy was in my best interest, so I began sub-q Remodulin, Tracleer and Revatio.

I spent the next three months focusing on healing and learning how to manage my medications so I would be ready to walk down the aisle.  It was a summer filled with much pain and suffering, but I was determined to move on and live life to the fullest.  By the grace of God, I had the most fabulous wedding day.  On August 11, 2007 I was able to marry my best friend and companion for life.  The challenges of the previous three months had only brought us closer together and made me all the more sure that God was taking care of me in a special way through the gift of my husband. 

One of the most difficult realities of my illness was the loss of being able to bear children. Although my heart ached, I was blessed with an adorable nephew and a beautiful niece, as well as a classroom full of first grade students to enrich my life. I was thankful to be alive and thankful to be back working full-time with children. I was gifted a notepad with the saying, “keep a dream in your pocket and faith in your heart.” This immediately became my motto, as it deeply resonated with the way I wanted to live my life. So I kept on dreaming and had faith in God’s plans for my life. I trusted that my life would continue to be filled with blessings, many greater than I could imagine.

In 2011, my husband and I felt fortunate with my improved and stable health condition and felt it was time to pursue adoption. Just as we finished the paperwork to be listed as a “waiting family,” PH was brought to the forefront in our lives when my mother was unexpectedly diagnosed with PH. That’s a whole other story in itself, but it was a magnificent reminder that anything is possible with God. We witnessed a true miracle in my mother’s recovery and are blessed to have her here with us today.

In 2012 the greatest blessing of our lives came into the world. My heart sings that we were chosen to be the parents of a beautiful baby girl. I will never forget the day she was born and the love that swelled inside of me as I took my first look at her. God had a plan, and it was even better than I could have imagined. My heart that once ached with loss is now bursting with love and I feel at peace. As I watch her play, learn and grow, I am reminded everyday how beautiful and precious life truly is. I am blessed to be a mom.

Since my diagnosis, I was determined to thrive, not just survive. I have taken an active role in doing my best to lead a healthy lifestyle that has allowed me to thrive. I immediately began a low-sodium diet. It was a difficult change in the beginning, but I could sure tell a difference. Prior to my diagnosis I was active in sports that my body no longer tolerates. I have since found new activities that I enjoy and are a benefit to my health. I enjoy yoga and mediation. I love going for walks and recently got a Fitbit so I can track my daily steps and activity. I have also delved into the world of Young Living Essential Oils and am so excited to have something that helps me as I manage the side effects of all my medications and has given me a boost in my overall feeling of wellness. 

I am thrilled to be involved in the study with the implantable pump for Remodulin. It is such a delight to swim and shower without worrying about an external line and pump. It’s amazing to think of all the advancements in therapy that have come about since my diagnosis 7 years ago and I trust that even better things are coming.

I am thankful for the continued support of wonderful family, friends and medical professionals. I am grateful for the Pulmonary Hypertension Association and all that has been accomplished thus far. I will continue to PHight and give my support until a cure is found!

Although the path can be bumpy at times, I am confident that God is with me every step of the way.  I am keeping a dream in my pocket and faith in my heart because anything is possible with God!

http://phight4wellness.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 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