Long term survivor Jenny Janzer shares her pulmonary hypertension diagnosis story and how she has battled depression in her tween and teen years along with PH. Jenny discusses how she uses her art not only as therapy, but to express herself and raise PH awareness. Check out Jenny's Etsy profile: www.etsy.com/shop/MostPulp Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod
My name is Jenny Janzer and I'm from Hartford, Wisconsin.
I was an active kid. I grew up on a lake and had like the most magical childhood of my life. At 11, I went in for a sinus infection and actually my doctor heard a heart murmur and she's like, "Hmm, you don't have a fever but you have a heart murmur, that's odd." She was like, "Just to be sure we're gonna chest x-ray you." So, I had a chest x-ray done and it came back and my heart was super enlarged. She was like, "This isn't right," so she sent me immediately to Children's Hospital of Wisconsin, which is a great place. They're amazing there. There they gave me an echo and an EKG, and then they sat me down and like, "You have pulmonary hypertension," and trying to tell me what it was. They were like, "We're pretty sure it's what it is. We have to confirm through catheterization." We did a right heart cath, confirmed it.
I at the time being 11 thought I was going under for surgery for something and was going to wake up cured and normal again. Growing up on a lake this was like the biggest thing when I woke up and they told me, "You can't swim," and I wasn't aware that that was going to be a thing and I woke up with a tube in my chest. I got lucky. I was one of the lucky ones that was diagnosed right away. I got very lucky with that, and I got diagnosed young, which I think is lucky, because I think my heart has adjusted to being with the really high pressures.
Growing up with it was pretty miserable and I didn't talk to anyone else with PH, really, except for the two people that ... It was very odd. Two other kids were diagnosed at the same time, in the hospital with me at the same time having central lines put in at the same time, the three of us. The one girl, she was about a year older than me. She ended up not responding and she passed away after her parents each donated a lung to give her a lung transplant. My friend, Steve, who we got close-ish. We were on the same meds. We kind of had the same track and he passed away, too, after a lung transplant in Madison. That was rough. I had not reached out online or to anyone until then. It was at that point that Lauren, who's not with us anymore either, she was the first person I talked to when I started on subQ.
I did not respond well to it so for two years I had more freedom and it was great. Then they told me, "We think you should go back on because your pressures are back in like the 120s." I'm like, "Oh, okay." The lowest my pressures ever got were in the 60s, so I've never been normal, but my doctor said that he's seen like some reconstruction in my heart that he thinks helped have my body handle the high pressures. I'm like at 110 right now and I was just recently given another, "You have one to two years to live thing if you don't get a lung transplant," but I've heard that before and I am just gonna keep fighting.
First, I was a teenager, like 14, I was depressed. I wore all black. I was like goth, you know, in denial of it and hated the idea of having it. I just wanted to be normal. I'd like hide my pump. I wasn't on O2 then. I've had it 15 years now, so before I was on the O2 and what not I could kind of hide that I had it.
In middle school this was messed up. They shouldn't have done this. They actually, when I was in the hospital for nine days when I first was diagnosed, they got just my class in middle school, but it was still a decent amount of people together to tell them. They had like an assembly to tell them, "Okay, she's gonna come back. She's sick. Don't touch her or bump her in the hallway." They really over did it, because when I came back kids treated me like I was diseased and "don't touch her, your gonna get sick." I didn't have friends in middle school and I've kind of like blocked that whole time out. In high school I just got really like depressed, and Gothic, and weird about it, and I didn't want to meet other people. My mom would always print out inspiring stories. I'm just like "I don't even want to hear about it." I just wanted to pretend I was normal.
Lauren was the first person I reached out to when I transitioned to subQ because I was nervous about it. I was like, "It's a new med." My parents were super amazing support system through the entire time, but then meeting Lauren it was amazing. She was so great and I never actually got to meet her, so that really bummed me out, too. I know it was very shocking when she passed. That was like after, though, I started chatting on line, so that was the first support group I found, which Jenn Lalonde, who is now like one of my best friends, just even out of the PH realm, we get along so good. Meeting her was amazing.
These conferences when we all get together like this is the first time in your life you feel normal versus like you being the outcast. At these things when we're all gathered together it's like you feel normal. You're the normal one, because everyone's got the pumps, and the oxygen, and you're walking around and you all know the struggles and you all know how bad it is. It's really empowering to get together with these people, and I think that's one of the biggest things. I wish I would have reached out when I was younger and maybe I would have been less depressed.
The doctors, even if they tell you ... I was told like six months when I was first diagnosed, and I've lived 15 years. I'm still kicking. I was just told one to two years again, but I refuse to listen to those numbers and I'm just going to keep fighting. A lot of patients I feel like... I try to be really open and like friendly so that a lot of patients feel comfortable talking to me because I remember just being so alone and hating it. Now, people have told me that, "Oh, you were the first person that I talked to or reached out to," and that means a lot to me because that's like Lauren was to me.
It's kind of like vain and stuff, too. I remember there were days like I'd wake up for high school and I'd be so blotchy. I just looked disgusting. It looked like a pimple had mauled my face or something. I'm like, "I don't want to go to school looking like this." People'd be like, "Oh, there's the diseased girl," and like, "nah, nah, nah." People are more mature now and they don't do that. I even still get weird things like at concerts and stuff I'll have my oxygen with me. I'll go to concerts still. I'll go in the pit and in the punk mosh pits and stuff with my oxygen. I've got a lot of good friends who look out for me, too, though. It's like no ones going to mess with a little chick in a mosh pit with oxygen.
Art has always been my creative outlet. Both my parents are artsy. My dad is also a musician. He's like a blues guitarist, so the blues has always kind of been in my soul, too, I think. I kind of grew up with that being like really, you know you got to have pain in your life to feel the blues. My mom really got me into art. If I was healthy I would be a geologist because I love rocks. As a kid I don't know what triggered it but I love rocks. I've got a giant collection. If I could I'd be out traveling like crawling around in the dirt digging up, rocks. This rock, is this old, it's like so cool to me.
Since I can't do that I write. Writing is my favorite thing to do. I make little like zines and magazines, and I'm on Etsy and stuff where I post those, and right poems about PH. I actually put out a zine where I never ever expected to share like my personal really, really like deep emotional stuff from my journals, like personal journals that I thought I would just burn when I die. I ended up, "Maybe this story would help someone," so I put it out there and people can buy it and it's kind of intimidating to me and like scary for me, because it's like you're reading my really personal like feelings and like experiences. If it helps someone then cool. Art has been like a really great outlet for me. It takes the stress away, and then I also feel like I can share my story and share and maybe help someone along the way.
I know for like a lot of, I guess, for the younger kids, too, what I want to say is, a lot of them I know I kind of rebelled against my parents a little bit when I was younger. The darkness and the pain that comes out when you're a teen. It's hard enough being a teenager or kid. Just the relationship you built with your parents. I just want to just like thank and say how much my parents and my sister have been like the biggest support system. I don't know where I'd be without them. They're amazing. I think that was like a really big factor, too. I feel so horrible when I hear about the stories of people that don't have that support system. I'm so lucky.
I got very lucky with being diagnosed early and having such a great support system. My mom mixed my meds. My parents were so worried about me they'd go to concerts and stuff for me, and come along and stand at the back so that they're not embarrassing me. They'd do all this stuff, so that was really great. That really helped me, I think, to grow up with it.
I refuse to give up. I don't care how many times I'm denied transplant or that I'm denied this or that, or how many different meds I've got to try. I've been on like all of them by now, but I'm still fighting and I'm going to continue fighting. I got my English Bachelors degree. I finally got it. It took me seven years to get but I got it. It's possible. I think that's really important to tell people.
I am Jenny and I'm aware that I'm rare.