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Krosby Myers, BSN, RN - phaware® interview 352

I'm Aware That I'm Rare: the phaware® podcast

Release Date: 12/01/2020

Krosby Myers is a registered Nurse at UC San Diego Health System.  Though she works in their surgical oncology unit, Krosby had no idea that UCSD was a leading pulmonary hypertension center, until she was diagnosed with PH in her 37th week of pregnancy.  In this episode she discusses her journey to diagnosis and how her nursing perspective changed in light of becoming a patient.

My name is Krosby Myers. I am calling from San Clemente, California. My connection to pulmonary hypertension is that I'm a patient. I was diagnosed in 2019, when I was 37 weeks pregnant with my second child. I also actually work at UC San Diego Medical Center, where I was actually receiving my care and I still receive my care. But I work on a surgical oncology unit and we also treat patients who have had kidney and liver transplants.

Throughout my pregnancy, actually, both of my pregnancies, I definitely felt short of breath and I thought it was due to my pregnancy and just being a little bit heavier with the baby weight. During the second pregnancy, every time I went to my OB appointments, my resting heart rate would be in the one teens, and my doctor just thought it was because I just went up the stairs. But I just was very short of breath, even walking from the car to the grocery store, I would have to take breaks. I still just thought it was due to my pregnancy. But thankfully my OB doctor at my 37 week appointment, she felt that I should just go into the hospital to get an EKG to be safe. Once I got that EKG that was abnormal, so that led to an echocardiogram, which showed I was in severe right heart failure. Then all the pulmonologists came in and told me how serious it was and that the next day I would have to get a right heart catheterization. That's when I was diagnosed and that started my whole PH journey.

It was really scary when they first came in, when they saw my echo results. The first critical care pulmonologist that saw me, she wasn't a PH specialist and they came in to see me after her, but she definitely told me how complicated and dangerous it was. So at that point, even though I'm a nurse, I wasn't a cardiac nurse, and I just kind of broke down at that point, because I was so scared. All I knew about pulmonary hypertension was that most people needed lung transplants. All I could think about was I had a one and a half year old and I was 37 weeks pregnant with my second baby. She just kept saying, "This is so complicated." She wasn't a PH specialist.

Once Dr. Papamatheakis came in to see me, he kind of gave me some hope and a different perspective. But they definitely made me very scared. They were talking about having to deliver the baby the next day. They were going back and forth with the plan, but ultimately they were trying to figure out if I needed a right heart catheterization. They decided that they wanted to go through with it even though I was 37 weeks pregnant. So the next day, I got my PICC line and then I went for my first right heart cath.

They have the OB team in there, they were monitoring the baby. It was my first one, and I had to lay flat while I was pregnant. I was very anxious and I felt very out of breath, just laying flat and trying to hold still, and just not knowing what to expect. But thankfully, my pressures decreased when I got to nitrous gas, they decreased in half. So Dr. Papamatheakis was really excited about that, because I think it's only 10% of people with pulmonary hypertension respond to that gas. It's a good sign for how we respond to medication, so that kind of gave me a little bit of hope during a really scary diagnosis.

Immediately, even during the right heart catheterization, they started me on Flolan in the cath lab. They decided the safest way to go was [to] start the Flolan. I was on that for as long as possible before I went into labor. The goal was to be on Flolan for two weeks. They had a set date, May 1st to have a plan to C-section. They wanted to optimize my pressures as much as possible. So every day, twice a day, I was titrating up on my Flolan. So for two weeks, I was in the hospital and I delivered at 39 weeks on my scheduled C-section date in the main OR. They had all the teams there. They had ECMO access in my groin just in case. My husband wasn't allowed in there. They had [an] arterial line. Everything was set up just in case something went wrong. But thankfully, I was awake and I didn't get intubated or anything during the C-section. It went very smoothly.

I was on Flolan through a central line for four months. Then, I was able to transition to oral medications last August after my right heart cath. At first, it was really difficult. I had to stay for 25 days in the hospital and my husband had to take my newborn home with my one and a half year old. I also was learning how to mix my own medications at home and we had help, but it still was very difficult and scary being on Flolan continuously. Thankfully, now I'm on oral medications and I'm feeling a lot better.

It's changed everything for me as a nurse. I have a whole different perspective, because I was a patient for so long. I'm so much more empathetic towards patients and family members, because I know what it's like to be in the hospital to be going through something that is so scary and there's so many unknowns. I wish every nurse could go through something where they could grow in their empathy, because it is scary. No matter any reason you're in the hospital, it is so scary to be there. I feel like nurses really need to grow in empathy, because these patients are going through so much.

Actually, I've told one of the nurses, (one of the PH nurses at UCSD), Sandra Lombardi, I would love to mentor and encourage any new patients that come through and are going through a new diagnosis with pulmonary hypertension, because when I was a patient, Sandra brought up someone who was 15 years out from her diagnosis and was doing amazing. It really changed my whole perspective seeing that someone could survive and thrive with this diagnosis.

I had no idea that UCSD was an amazing center for PH until I was diagnosed. I believe in God. I just feel like God put me there for a reason. I've worked for UCSD for six years. I started in Hillcrest and I moved to La Jolla and that's where all the PH doctors are. It's crazy that I actually work at a place and was able to receive care at one of the best PH centers in the U.S.

I would just say, don't give up, never lose hope. You always have to change your perspective, because sometimes you find yourself so down, just thinking about how long do I have to live? Am I going to survive this? How am I going to leave my kids? You just have to listen to your doctors. Never give up hope, and continue to take it day by day and just live in the present. I really had to learn to do that. I had to ask in support groups for advice, see how other people were doing, because you can't Google this. You will get very depressed if you Google anything about pulmonary hypertension and see how long they give you online.

You kind of have to live off the hope of other people in the beginning. I just wanted to thank my team, Dr. Papamatheakis, Cynthia, and Sandra, and everyone at UCSD that helped me get through my diagnosis and everyone that has encouraged me throughout this whole process. I would just encourage other people with pulmonary hypertension to give back because you never know when someone really needs that encouragement.

My name is Krosby Myers and I'm aware that I'm rare.

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