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: Jamie

Post-transplant

I always find it incredibly difficult to explain my PH journey. Even within the small tightknit community of PH, most of our journeys are vastly different. My story starts as a disaster but ends five years later and includes a family, a job, school, and enough energy to walk five kilometers a day.

Let me start from the beginning. Firstly, I was diagnosed late… actually 23 years too late. I was born with a hole in my heart and after countless doctors’ appointments where I was either given antibiotics, or accused of lying to get out of work, I spun my car out on the busiest highway in Toronto, which finally led to my diagnosis.

After going to the local walk-in clinic, and having an oximeter reading done, I was diagnosed within the month with stage IV pulmonary hypertension.

My health for the next four years really only went downwards, oral medication did not work, subcutaneous medication did not work, and when I was finally put on IV Remodulin, while it was true that I was feeling much better, a month in a clot broke off the line and caused a minor heart attack.

The final breaking point before my life changed forever was here in Ottawa. I had chest pain so I texted my nurse coordinator who told me to go to emergency immediately. I was pretty busy, so first my wife and I signed my school loan documents before heading over. This was a VERY bad idea, my saturation levels were sitting at under 50 percent, and I was heading into full organ failure.

The decision my PH team came up with was to fly me to Toronto General for a transplant workup. It turned out that I was so far gone, that they put me at the top of the national registry immediately, and I had a double-lung transplant/heart repair within 48 hours.

As I said this was the shift in my life to make everything better. At the end of three months in Toronto, I was jogging, walking up seven flights of stairs, and doing things that I was never able to do.

 I’m not suggesting transplant is for everyone, certainly it has its up’s and down’s, but for me, I’m the healthiest – and happiest – I have ever been.