I'm Aware That I'm Rare: Anna Jeter, RN

Anna Jeter is a long term survivor battling pulmonary hypertension. In this episode, Anna discusses approaching the transplant window and how her patient experience was the driving force behind her to decision to become a registered nurse.

Transcript:

My name is Anna Jeter, and I’m from Minneapolis, Minnesota. I have been a patient of pulmonary hypertension for many years. Me and my parents have really gotten rooted into the community through the PH conferences, but also just through social media and the connections that are made on Facebook, and seeing people’s stories pop up, and being able to be connected in that way.

So, I was diagnosed two weeks before my fourth birthday, in 1999, which feels so far away and ridiculous now. So, it’s been 18 years. Since then, now we’re preparing a little bit more for transplant. We actually started being seen by the Mayo Transplant Clinic my freshman year of college. And sort of withheld just so I could keep pursuing education, as long as I was stable. Now, we’re sort of at more of a crossroads making some different decisions and moving forward.

Nobody can definitively say, “We have to do this now.” And so, that ended up being a bit of a back and forth game of, this is really probably the right time. And I think a lot of that is the fear that you’ll pass the transplant window. Once you decline too much you in a way lose your opportunity. And that’s something we never want. And so, it’s better to be conservative and we’re almost approaching it. Probably right on the cusp of when I’m entering the transplant window, but we would rather be conservative in approach, but now we finally have a consensus and we’re able to move forward with a lot of peace, and so that feels really good.

I actually just graduated in May from Bethel University with my nursing degree, and I passed my nursing boards in June. So, I am a registered nurse. I think this is a sentiment that any PH patient would agree with, your nurses play an incredible role in your care. And I think as a kid growing up with a rare complex illness, nurses were the easiest to trust. I received incredible care from incredible doctors, but the nurses were more the comfort, and more of the putting you at ease, treating you like a kid, or treating you like something that was just more than your illness. And that just was incredibly impactful to me.

So, initially going into college, it was kind of this concept of wanting to give back, and wanting to be able to step in this role that had meant so much to me, and that I felt like I had a really good understanding of. And I think the medical field is always interesting to a patient, because I grew up with it, I know so much about medicine that other people aren’t able to experience at a young age. And so, that was really the driving force behind nursing for me.

So, I had actually an incredible job lined up in a NICU. And I think the NICU is an area that’s particularly interesting for me. It’s a little further for home, not quite pediatrics, but it’s still that incredibly vulnerable population. It’s still working with families and parents, which is something that’s really close to my heart after seeing my parents manage this. And so, I do have a huge heart for the NICU.

And as we come up on transplant, we’re honestly not sure how nursing will be available to me after transplant. And so, that’s something that’s always being considered, and we’ll have to kind of navigate what roles make sense to me in the medical field after transplant, once I become more vulnerable. You know with immunosuppression. That’ll be like the balancing act. Because the first year for sure I just don’t think it would ever be recommended for me to be in a hospital setting even. There’s just germs everywhere. But it is pretty unknown like long-term where I’ll be able to fit in, because NICU is honestly one of the best population I could find, because typically a newly born baby isn’t infectious. It’d be more working with like severe care, that’s not infectious, which would be pretty ideal. But it’s just a matter of whether or not it’s safe for me to be in a hospital environment at all. So, that’ll definitely be an ongoing conversation.

My nursing education is always going to serve me, and it’s always going to allow me to serve others, it’s just figuring out how that’ll work and what it’ll look like. But I do think there’s always going to be ways for me to positively interact with patient populations, whether it’s being in a nursing role, or just using nursing knowledge to relate in an impactful way.

Some people become nurses because like their mom or their aunt or they’re just a family of nurses, and that’s what they know from the professional aspect. And so, that’s why they step into the role. And then there’s a lot of my peers who maybe didn’t experience health struggles personally, but for sure have seen like a mother go through breast cancer, or something like that where it’s really left them raw and wanting to step into that role for those reason. Then there’s like me, and I honestly think it was unique to be stepping in having so much patient experience. I don’t know if that’s quite as common, but there’s always for sure those reason. I mean nursing is a very oddly personal career to step into. And I think people always have a bit of history with why they’re doing it.

Going to college was a bit of a whirlwind for me. So, right when I graduated high school, stuff just really took a dip for me health wise. And that summer is probably like one of the sickest periods I had. That’s why we ended up in the transplant clinic at Mayo. And we were able to correct some stuff, and my health kind of took a usual upswing and I stabilized again, but it was this period where we were like, “Wow, I might not be able to go to college.” And that was like a very real fear. So, that combined with just even having pulmonary hypertension, and then suddenly my mom and dad having to send me off, was all pretty extreme.

I think there’s definitely shifts in responsibilities. Having to mix my own IV medications, having to be my own reminder for taking my pills every day. And I feel like that’s stuff that we worked on shifting those responsibilities during high school, but it’s definitely a bigger deal when you’re like going away to school and your mom’s not around every day. And my school was 45 minutes from home, so not a horrible distance. And my mom would still play her role, still do pill trays, and bring them to me. Tried to still carry some of the burden, so that like I could just be focused on being a college student.

But I think probably most of the anxiety was on my parents, which isn’t something they always share, but I think you’re sending your relatively sick child off to school to be on their own, and you never know what can happen. And so, that’s for sure a fearful thing, but it’s also just a matter of communication and me being able to take ownership and say, “Hey, I know my limits. I know when something’s wrong. I know when I need to be prioritizing health over all else.” Yeah, those were all interesting things to approach going into freshman year, for sure. I mean now I’m 22 and guaranteed to this day it’s still the same way. I think that’s the nature of being diagnosed as a young kid.

My name is Anna Jeter and I’m aware that I’m rare.

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