Lala Juarez - phaware® interview 566

The Most Dangerous Phrase in Rare Disease: “You Look Fine.”

My name is Lala Juarez. I am a support group leader for Northern Utah. I’m also a patient. I was diagnosed with idiopathic pulmonary arterial hypertension in 2015. I had two years of being undiagnosed through, as a lot of patients know, like asthma, whooping cough, allergies. I went through oral medications. I tried the Sub-Q and we were not friends. It didn't work out. So I went to IV therapy. I had that for about two years. I had a double lung transplant consultation. The first one I took super seriously. I brought my best friend, I brought my parents, I brought everybody and was just like, "Hey, if we have any questions, if I don't get everything down, you guys could tell me what happened in case I forget or if it's overwhelming."

They ended up telling me, "You're too healthy for a transplant." So, I was like, "Okay." Then, a few years later, I had another consultation. I was like, "Oh, they're going to tell me I'm healthy again," because I felt like I was healthier as far as mobility and stuff. I was convinced they were going to say, "You're too healthy." They said, "It's time." I was very shocked. I had my double-lung transplant in June of 2021, and now I am four years post-transplant and doing great.

I'm back at work and I didn't realize a lot of things that I enjoyed. I didn't realize that I would be fond of salt. I didn't realize I'd be fond of hot showers. I don't know, just a bunch of things, even just bending over, I'm just shook, I could do it. I'm shook, I could go back to work and I could survive a full-time job and a lot of things that I had accepted that would never happen ever again, or at least not for a very, very long time.

So it was in the middle of COVID. All my loved ones were able to be there in the waiting room. I guess I was actually fine to have my sister and my parents in the recovery room. But I'm happy it happened then and not in 2020, because if it was at a point that nobody would be able to visit me and stuff, I think that would've been so hard. I know that there was people who did have their surgeries in 2020. I am just happy for me everything worked out the way it did.

Just being prepared. I think I've been over prepared. I did go to a PHA Conference in 2018. They have so many different classes or little groups that they have. At that time, I went to a transplant group (session). I was in a very receiving place where I'm like, "I'm not going to need this at least for another decade. So, let me learn about all this stuff now where I'm not trying to pressure myself to try to get all the information in and just be calm about the whole thing."

What I learned at the conference was there was this one girl who had said that when she had her transplant, I think her medications were at such a high level whatever, she had forgotten a lot of things like her passwords and her family. I guess she was either scared of her family or something. I don't remember exactly her story, but it was something along those lines. I was afraid of that. So, I told them all my passwords and I was like, "You guys, if I forget, if I get nervous, play me music." I think in that way that I was able to get that information from other people who have lived it, it made me more prepared than I would've been had I not gotten any of that information. Any of us that has any problems, whether if it's PH or if it's any other medical related problems, I think they learn to advocate for themselves and to ask questions.

I didn't start attending any of the support groups until a year or two into my diagnosis. Maybe it was after a year and I started attending the ones at the hospital I was at. Then, I started looking into other ones where I was like, "Oh, even if it's not quite the way that I had perceived support groups before, like what I've seen on TV, like AA meetings or something like that." I was just like, "What?" I just feel like the support groups and stuff are like, "It's not like that at all." So, I started attending them.

The original leader for our group started needing help, she's a little bit older. It was me and another older lady who took over and I was just going to help. Then, unfortunately, my partner had passed away in 2020 and it wasn't COVID related. So, now it's just me, but that's kind of how I kind of got thrown into it. The original leader ended up just slowly but surely kind of stepped back. So, now I'm just the only leader for my group for Northern Utah. But I don't mind, I really enjoy these groups. I enjoy even after my transplant, I feel when I do attend them and when we talk about them. It's not always negative things. I think it's an escape for most of us.

I think even when we do have problems that we're venting about, we understand each other like nobody else will understand us or like the “normies,” with people who don't have any issues. And our caregivers, we need our caregivers, but some of them don't understand. They could only go based off of what we tell them. They could only imagine what it's like, but they don't know exactly what it's like.

I went to a group for my old hospital and I feel so seen. I feel like what I went through, especially during my diagnosis, I feel like it was almost like (not my doctors now), but doctors before, just a regular pulmonologist and a regular cardiologist. I feel like in ways that they were gaslighting me to believe that nothing was wrong with me.

I don't know how much my age played a factor, because at that time, I think I was 22 when I started getting symptoms. Then I got diagnosed at 24. At first, they were just like, "You need to exercise more." I tried my best to explain to them like, "I know what being out of shape feels like, and I know the more you try, it tends to get easier to do it. But the more I try, the more it hurts or makes it harder to breathe and it doesn't end up getting easier like being out of shape does." They were just like, "Oh, well, you're young, you're fine, you look fine."

Being so young too, even cousins and stuff, they kind of looked at me like, "Wait, how can you not do this? You look fine." Even talking to my support groups now, like I said, I feel so seen. I feel like everything that they talk about I experienced, or if I explain it in a different way, they're like, "Yeah, that exactly." So, me staying in this in a way makes me feel like what I went through, I wasn't crazy. What I went through, there are other people who are going through this. I guess it makes me feel validated in a way that I didn't just make it up.

I understand them in a way nobody else will. I feel like I can't even say, "Oh, well, I'm not in this no more, goodbye." No matter what, even though I am quote-unquote “healed,” and I no longer have PH, I already accepted when I first started having my illness, I will be popping pills for the rest of my life, I will still be going to the hospital and having my evaluations and checkups and stuff like that. So, no matter what, it's not over, over.

I feel like I am different in so many different ways. In the weirdest way, I'm happy this all happened to me. I feel like I know empathy in a different way. I know how to just relate to other people who are going through issues differently than I did before. I feel like before I was more in a working mindset and too busy for everything and all this stuff. Now, I take time to be present with people.

I feel like everybody's better off than me. A lot of people seem to be accepting of it easier and better. I feel like the way that I cope with trauma or whatever, is I was in denial about the whole thing at the beginning. It just took a while for me to accept it and be like, "Oh, I guess this is what it was." I think part of it had to do with the two years to properly diagnose me where I'm just like, "Yeah, that's what they say, but is it really what it is?" There's a new normal and a different normal. I don't have exactly that, but it's not over, over. I'm not back to being a “normie.” I'm not back, or there's no way of going back to where I was.

My name is Lala Juarez and I am aware that I'm rare.

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