I’m Aware That I’m Rare: Kendra Meneghetti (436)
the phaware® interview
Pulmonary hypertension patient and Stanford’s Race Against PH 2023 Adult PH Courage Award recipient, Kendra Meneghetti, discusses her lifelong battle with PH, the challenge of receiving a transplant during Covid, and how her band provides a unique outlet by releasing her trauma through music.
Don’t miss the 23rd Annual Race Against PH at November 5 hosted by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford. Click here to learn more. #raceagainstph @phaatstanford
I’m Kendra Meneghetti. I reside in Martinez, California. I was originally born in Mexico City. My mom is Oaxacan, so I speak both Spanish and English. My connection to PH is that I was actually diagnosed at one and a half by an amazing doctor named Howard Rosenfeld at Oakland Children’s Hospital. He was the one who told my parents that it might be this rare disease. I was put on Flolan, which was still pretty experimental at the time. Dr. Hickman of the Hickman catheter was the one who placed my central line, so I was immediately started on IV therapy. My parents were mixing my medicine up until I was maybe 15 years old, and then I learned. I was on a bunch of oral meds as well on top of the IV meds. I actually got my heart lung transplant in September of 2021.
Definitely there’s been changes over time. I started with the larger pump, we used to call it the “brick.” Flolan at the time in the ’90s used to have to be on ice 24/7. I was on that pump for a very long time, and then I moved to the CRONO Five. It’s a small pump. It was nice because it was much smaller. So as I was entering my teen years, I could put that one in my pocket and it was less noticeable. Then I went back to what we called the “brick.” I was on that large pump until my transplant. I was always on the IV meds. I tried a lot of different oral meds. I was on REVATIO pretty much my entire life, as well. Then Letairis, I started when I was about 17 maybe. Compared to now, Flolan had to be constantly on ice, which I giggle at the thought now just because I was this tiny little kid carrying around this chunky little bag. It was constantly cold and leaking from the ice.
There’s been a lot of changes, so I feel very grateful and lucky to have been in that position. Growing up my parents and I were always one unit. I’m very grateful for their organization and consistency and their teaching and how important it is to mix on time. I was in a very, very lucky position with them and with my nurses and with my doctors, both in the pediatric field and then moving into the adult field, too. I started having a lot of syncope episodes in my early to late teens as well as episodes of supraventricular tachycardia. So the disease was progressing, which I knew. I knew that growing up. I knew that that would be a prevalent situation. I sort of came to terms with that. The syncope was definitely difficult, but around 16, we met with some doctors at Lucile Packard. We visited the transplant team. They said that this was something that may come to fruition in time. At that age it didn’t, so I transferred completely to Stanford.
As a new patient, they ran all the preliminary testing and told me I was a good recipient for a transplant. I was put on the list on and off, because I’ve struggled with my weight all my life, not only from the right heart failure and the pulmonary hypertension, but my dad’s side of the family is incredibly thin. So I had my genes working against me, as well. But in 2021, I finally did have my transplant. It was hard. I met amazing people though. The entire pulmonary hypertension team that monitored me while I was in the hospital for three months was incredible. I became really close with all my nurses.
Prior to being admitted into the hospital, I had a lung collapse. I was admitted to Stanford for about a week, and then was sent home for maybe 12 hours until I felt it collapse again. So it was very difficult in terms of both physically and mentally. The physical aspect being multiple chest tubes being placed and then having them fail and then having a new one put in and then just waiting three months in the hospital. But I feel very lucky and grateful that I have and had an excellent support system, both with my family, friends and the medical staff.
My husband told me something that stuck with me the night before the transplant. He said, “It’s out of your hands now.” That kind of calmed me down. I feel like I’d been fighting for a long time. I’d gotten a second chance, and at that point it was out of my hands and in the hands of the incredible surgeons and nurses who were able to give me that second chance on life.
It was also during sort of an uptick in COVID when I was staying in the hospital. So at the time, the visitor policy was changing every day. I had two people that were allowed to come in and out to see me. I had a lot of family and friends come to Stanford and wave to me from outside while I was on the seventh floor. That was just so special. My family came from Mexico just to wave to me from the ground. It still makes me want to cry today, but it was just so special and things like that made me feel both physically and mentally stronger. I’m just beyond grateful and thankful that I had such strong and empathetic and kind people around me to constantly build me up.
It seems cliche, but I always tell people that it’s the very tiny things that I feel most grateful for. My absolute favorite thing is to be able to take a shower and then not have to change my central line site and clean it. Just taking a walk around the neighborhood without being in pain and short of breath and without worrying that I’m going to faint is beyond special. I sometimes just start to weep while I’m taking a walk around the block, because it’s not something that I’ve ever really experienced before. I talk to my family and my husband a lot and my friends about how the world has gotten so much bigger, and I’m grateful for that every day, even when I’m in a bad mood, I still feel grateful that I get to experience being cranky, if that makes sense. It’s vastly different. I don’t think that I realized how difficult and how sick I was when I had PH. it wasn’t until after the transplant where I realized how much pain I was in every day, how much fatigue I was actually feeling all the time.
Then, just looking at photos of myself when I had PH, like when the disease progressed pretty heavily is not shocking to me, but there’s a distinct contrast to how I look now. I just feel very grateful, and again, it’s a second chance on life. I always have to remind myself of that, but it really is the little things that I’m most grateful for. Another one is just being able to dance around the house and not being out of breath and being able to run up the stairs. Sometimes I just want to run up the stairs just because, so it’s pretty incredible.
Growing up, I was sort of quiet about my pulmonary hypertension and my chronic illness, something that I never wanted to have define me. However, I wouldn’t ever change it about myself, because it made me into who I was and who I am. I have met some incredible people and friends that I still talk to today from the age of seven to now we’re both 30 who have PH. My journey was maybe a little bit different from some other people who were diagnosed in the sense that I was more reserved about it, but it doesn’t make me any less grateful or proud to be somebody who had PH and somebody who has received a second chance at life with a transplant.
My reservation about telling everybody growing up not only had to do with the struggles of being a regular adolescent. Kids can be really mean. I grew up with obviously a large pump and always had to carry a purse. I had rashes from the Flolan. So, it didn’t only come from that, but it came from just a place of wanting to protect my own personality and not have it define me. However, it has defined me in the sense that I am much more empathetic and I have a perspective that I’m grateful for in terms of showing up for people. I feel really lucky to have gained that strength from having PH and having a chronic illness. I’ve just really met some incredible people along the way.
My husband and I are actually part of a band, and we have a very talented bassist and drummer. We are a four piece band, and the band started when I still had had pulmonary hypertension, and we’re still going post-transplant. We sing a lot about chronic illness and hospitals, both from the perspective of a patient and as a caregiver. It’s a pretty unique outlet and it feels really good to be able to put our pain into songs as most musicians do. That has always been mostly really special to my husband. He has been one of my number one caregivers. It’s something we do together and enjoy and a way that we can release our trauma through song and lyric. Shameless plug, our band is called Box Of Matches, and we are on Spotify. If you want to feel a little bit sad or maybe have a release of stress, you can listen to our music.
Another thing that I’m incredibly grateful for and I feel really beyond proud and I feel truly honored, is to be the 2023 Adult PH Courage Award winner for Stanford’s Race Against PH. It’s not something that I ever thought would happen to me and I truly feel honored. The Race Against PH is an event that takes place at Stanford. It’s a 5K longstanding event for doctors, patients, such as myself and staff. It takes place on Sunday, November 5th at 9:00 AM at Stanford. Of course, community supporters and listeners, if you’d like to learn more or register for the race, you can do so at med.stanford.edu/raceagainstph.
My name is Kendra Meneghetti, and I’m aware that I’m rare.
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