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: Kayla

Hi my name is Kayla and I am 22 years old.  I am not your average young adult, I have overcome a lot of health issues during my life.  I was born with a lot of health problems including being born with a Giant Omphalocele, (all your organs outside of your body in a jelly sack) hole in my heart, (fixed when I was seven), club foot, scoliosis, and I was tube fed until 5 years old.  I also didn't get to go home from the hospital until I was about 3 months old.  During my childhood I was in and out of the hospital.  After middle school, I had a seven year gap of non-serious health issues.  Until the summer of 2014, when my world was turned upside down. 

I remember it was a hot summer day and I was walking in the mall with my mom and I was walking very slowly and trying to catch my breath.  I thought I was tired from the heat and maybe hungry.  So we made it to the food court, sat down, and got something to eat.  After that I felt better and could walk back to the car.  The next morning I was gasping for air while I was asleep.  I have never experienced that before.  My mom immediately called the doctor and got an appointment that morning to check out what was wrong with me.  When I got to the doctors I was still having a hard time breathing, but I was still talking and alert.  They decided to check my o2 sats and I was in the 60s.  They immediately called the ambulance and rushed me to the ER.  The ER thought I had an asthma attack, but I never had one of those before.  I do have asthma but it's only reactive when I have a bad cold.  So they gave me tons of breathing treatments and it helped a little, but not enough.  The doctor decided to admit me to the hospital.  He told me he wouldn't let me go until he found the answer.  It took a week to do all the tests to determine what was going on.  The last test to confirm their diagnosis was the right heart cath.  That was very scary being awake on the operating table.  I held it together barely.  When the heart cath was done the doctors told me I had Pulmonary Hypertension.  I was confused, scared, and speechless.  I had no clue what PH was.  The doctor explained in detail and still I didn't understand it.  All I remember was it is not curable and I would have to live with it for the rest of my life.  In the past I was use to having health issues and having the doctors solve them the best they could.  But I never thought I would have to deal with a rare and non-curable disease for life.  On top of that I had to be on oxygen 24/7 because of my low oxygen stats and I'm still on oxygen today.  

All of this was new territory for me.  I was in denial for awhile and kept asking my parents why is this happening to me.  They kept explaining it to me and they were really supportive.  Eventually maybe about a couple of months later I adapted with my new way of life.  I have always been a positive person and I knew I could get through this tough time because I have done it my whole life.  The o2 and the meds were what was saving my life.  I was in a new semester in college when I was diagnosed and had to get back to it.  I went back a week after coming home from the hospital.  I had to drop 2 out of 3 classes because I would have been too overwhelmed.  My parents helped out and bought me a portable oxygen concentrator, so it would be easier to go to school and get around.  I even bedazzled my concentrator, to make it more fashionable!  I got through that semester and during that time I knew I wanted to spread awareness about PH.

I never heard of this disease before until I got diagnosed with it.  So I knew I needed to do my part and raise money to help find a cure.  That's when I decided to start my own fundraising jewelry line called PHantastic Jewelry.  I always have been into fashion and love being crafty.  I created my own website (phantasticjewelry.com) to share my story about being diagnosed with PH and to sell my handmade jewelry for awareness.  The net proceeds go to the PHA to help find a cure.  I knew for myself to cope with this "new normal", I had to give back somehow and turn it into a positive.  I enjoy making the jewelry and spreading awareness about PH at local craft fairs and open markets.  Also at these events I get to meet a lot of great people and hear their stories of their own health battles. 

I feel good that when I share my story people are comfortable to share their's.  Some people may wonder how can someone on o2 be doing so much.  Well, since I was born my family, friends, and God have been my support system and my parents taught me an important lesson early on to never give up.  There is always a "silver lining" in hard times.  I strive to do my best and achieve the goals I want in life.  This past year in a half has been intense, but I learned so much.  With being diagnosed I actually have had more energy and developed an exercise routine with the help of Pulmonary Rehab.  I just finished another semester in college and I took 3 classes.  First time having that many classes since being diagnosed.  I feel so good that I am back at where I wanted to be.  I am so appreciative because I am stable with PH at this time and I can focus on school, enjoying being with my family and friends, and working on my fundraising jewelry business.

For the first time in awhile I feel like I can slow down and "stop and smell the roses" instead of being in survival mode.  I hope sharing my story will help others that are having a tough time that it is important to remember take it day by day.  And your life will change a lot being diagnosed with PH, but really try to have a positive outlook.  It truly helps in this situation!  Also allow yourself time to adapt to your new way of life.

PHighter Friday: Becca

 At one month old, when my parents adopted they were told, "I has a 13% chance of survival to the age of 5."When she was 3 months old they were told by the doctors there was nothing more they could do... they felt that I had 6 months or less to live. Hospice started coming to our house to help my family through the darkness. When I was a year old we were told that "things" had changed with her heart. There was a surgical procedure that could be performed that would enable me to grow up!

Miracle #1.On November 19th 1993 when I was 13 months old I had my second open heart surgery. The operation went well but I would not come off of the heart and lung machine. I was put on ECMO, a portable heart lung machine considered a "heroic measure" and taken to the Intensive Care Unit. Four days later she was taken off of ECMO and a month later she left the hospital.

Miracle #2.When I was 26 months old we traveled to UCLA for my 3rd surgery. My family had been told it was very high risk and I would have a very "rocky" recovery period. I surprised everyone, did wonderfully and was home in 10 days.

Miracle # 3.When I was 5years old she had her 7th heart catherization. In this cath massive ballooning and the placement of 2 stents were performed. I began bleeding from her lungs... they felt it would be very difficult to stop the bleeding, and if the bleeding did not stop she would die.

Miracle # 4.I had surgery at Lucile Packard Children's Hospital (LPCH), part of Stanford, when she was 12 years old. She did well but 2 days after we returned home she was back in a local hospital’s Intensive Care Unit fighting desperately for her life. During surgery she had contracted a deadly infection Methicillin Resistant Stafyloccus Arus (MRSA) that raged through my body. After 5 weeks in intensive care I went home very weak, in a wheel chair, with a PIC line and 6 more weeks of IV medicine to finish.

Miracle # 5.In my 8th grade year I started having arrhythmias. After trying for 4 months to control my irregular heart beats my condition turned life threatening and I was life-flighted to LPCH. I spent 2 weeks in the intensive care unit as they increased a strong anti-arrhythmia medicine and placed into me an experimental pacemaker/defibrillator.

Miracle #6 Just this past summer I had to go all the way to Pittsburgh for a heart-lung transplant evaluation. After being turned down by 3 other centers, Pittsburgh was our last hope. Thankfully the surgeon has decided that he thinks he can successfully do the transplant, but that at this time I am too healthy.

Looking back at my life, there were more than a few times when I wasn’t expecting to make it. Now I just celebrated my 22nd birthday with family and friends. Going to college was something my family didn’t know I’d be able to do, but I’m in my 3rd year at a community college and I love it.

I was lucky in the sense that I was born with my PH (secondary to my heart defect) because I have had my whole life to learn how to cope with this and I don’t have an old life to look back on and miss. But there have been times when I think about having a normal life or the things I wish I was able to do (go on roller coasters, fly without oxygen and go into the mountains) and miss the thought of those experiences.

In all honesty though, I’m not sure I’d change the fact that I’m sick if I was given a chance to. If I hadn’t been born sick I wouldn’t have been adopted by the amazing family I have now, wouldn’t have gone to the wonderful heart camp where I made so many friends, might not have picked up my two favorite hobbies; writing and performing ASL. Having PH has impacted my life negatively and I know I will more than likely die from it, but I’ve learned to look at what it has given me as well.

They say "It takes a village to raise a child." For me the saying would need to be changed to "It has taken five hospitals (in 3 different states), 4 pediatric cardiothoracic surgeons, several pediatric cardiologists, intensivists, pulmonologists, pulmonary hypertension specialists, infectious specialists, nurse practioners, nurses, respiratory therapists, a wonderful pediatrician, a special child psychologist, a loving family, caring friends and understanding teachers and schools to raise me and allow me to thrive as much as I have.

http://lifeasachronicallyillteen.blogspot.ca/