I’m Aware That I’m Rare: Alvin Rocha, MSN RN CPN PHN (473)

the phaware® interview

Alvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children’s Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending the World PH Symposium to learn more ways to help the patients and families he cares for.

My name’s Alvin Rocha. I am the nurse care manager or the pulmonary hypertension coordinator at Children’s Hospital Los Angeles. I’ve been doing this for about six or seven years now. I manage the pulmonary hypertension patients that range from birth to 21, 22 old. I manage their symptoms, help them with medication authorizations, and just kind of guide them through their journey with PH and childhood and going through junior high and high school. My ultimate goal is to prepare them to transition into the adult world.

It’s a process. It’s not something we do last minute. When you transition, you look at the patient as a whole. What is their family dynamic like? What is their learning ability, their developmental stage? I try to start transitioning patients or teaching about transition when kids are able to understand what’s going on. So as soon as they’re able to understand their diagnosis, their disease, and their medications, I start preparing them for when that day comes and they are old enough to transition to an adult hospital.

What that entails is education that is tailored to where they are in life. If there’s a patient that’s in junior high or early high school, I start with the basics, what their meds are, when they should take, what their disease is and what it’s going to look like in the future, what they can expect. Then, when they go to high school or end of high school into college, I talk about what they’re going to experience, what kind of influences they’re going to have, how certain things can affect their medications and how they feel. I just kind of have to go with the flow until they’re 21, 22 years old and almost treat the visits as if they are adults and let them take the lead in asking questions and telling us about what’s going on, how they’re feeling. It’s a process that takes sometimes a few years.

It’s almost like building their confidence for them to go to adult appointments on their own without feeling insecure about how they communicate with healthcare workers or healthcare providers. It’s definitely a process. We see the patients until they have at least their first meeting with their new PH team once they transition to adult centers. We’ll see those patients one more time, almost have a little graduation ceremony, and then hand them off to the next team that will take care of them.

I let the parents know what I’m trying to do, what the process is. As the patient’s mature, if the patient is very talkative and open, I will ask the parents if it’s okay if I speak to the patient or Dr. Jackie and I speak to the patient without the parents in the room. Even if it has nothing to do with PH, nothing to do with their medication, it just gives the patients confidence to speak up for themselves and ask questions without feeling intimidated or nervous. Parents are usually open to that, which is nice. I think when I make it a regular part of our visit, they kind of get used to it. As long as everybody knows what the plan is or what I’m trying to accomplish, it goes really well. I haven’t really had any issues with that. The patients and the parents are usually very involved in their care. They’re involved with decision making together because it’s so complex. Little decisions can change what their life is like at home. It’s usually a team effort already right off the bat when you have a new diagnosis.

School is a big thing. When we have patients that were either athletes or in clubs or playing instruments when they’re diagnosed with PH, we have to really think about their quality of life and what’s going to make these patients happy, what’s going to keep them compliant with their meds. We really work with the schools to come up with a plan to make their life as best as they can at school. We do that by meeting with the patients and the family. What are their expectations? What can they handle? What can the patient tolerate? How much activity can they tolerate? We write a letter to the school with very specific guidelines to help with planning out what the child’s day is like or what the patient’s day is like.

We really advocate for keeping the quality of life, but also keeping the patient safe. If we need to ask for extra assistance, kids are entitled to have an aide or a nursing aide at the school with eyes on them at all times, if that’s something we request. We usually try to give the patient as much independence as possible, but also keep them safe by having someone keep an eye on them. Over time, patients that need oxygen or are on Remodulin or Tyvaso, they come up with a routine, they figure out how they’re going to go through their day, and they’ll let us know like, “Oh, I don’t think I need my aid anymore. I think we’re good without having someone follow me the whole day at school.” Things are always changing as the patients mature and as they kind of go through life with PH and their meds.

We have done a lot of combination therapies that we didn’t do when I first started. The Remunity subcutaneous pump, that’s new for kids. The treatments are changing pretty rapidly, in the pediatric world at least. We’re constantly trying to figure out how to navigate training patients and families, but also training schools on a new pump, for example. With the SubQ pump, the Remunity pump is really new because it has a remote, and it’s a lot smaller, which is great for the patient, because you can’t really tell they’re on a pump, but it’s also brand new to everyone. So, we’re troubleshooting problems both at home and at school. So that’s a learning process in its own, and we’re still learning new things about it. Kids with this new pump, there’s a little more freedom with activities they can do. It’s water resistant. They have a little more freedom with it.

With telehealth, we’re able to follow up more closely and see the patient. A lot of times, the way the patient looks and how they feel. Their color is really important for us to assess. Just being able to assess virtually is great because they don’t have to find a way to get to LA if they don’t live nearby. We can do things a lot quicker by assessing virtually. Over the last seven years, it’s changed lot. Technology has really improved quality of life for a lot of patients. Communication has just been really key in growing and growth.

PH is a scary diagnosis right off the bat. I’ve learned over time that helping the parents cope with it first has helped the most just because they know the patient best. They know how to navigate their emotions the best. If I can get the parents’ emotions under control, help them understand what’s going on, what we’re trying to plan, what kind of meds we’re going to use, I find that the patients do better. It’s almost like the parents are taking the lead in their care, even if it’s managed by a doctor and a nurse. I also find that when I answer questions and when I do teaching, right off the bat, I go into a lot of detail. Over a few weeks, I go over all the meds. Every med we could possibly start, I talk about, just so the patient and the parents are able to make decisions, knowing a little bit of information beforehand. We might not start all the medications, but knowing that it is a possibility just helps in general.

I’ve also learned that when I talk to the patients and let them ask questions, that also helps with mental health just because their questions are completely different from parent questions. I can talk for an hour straight with parents and a patient. All the patient wants to know is, “Can I ride a roller coaster? Can I go swimming? Can I do this?” They just want to play. They just want to live their life. I just have to understand, again, where they are developmentally, where they are in terms of learning, because I find that the more they know what can happen, what is happening, the easier it is for them to cope.

I also tell them that what they can read on the internet is very scary, but it’s also very unique in pediatrics to have PH. Every child has a different experience. I tell them not to compare themselves to what they see on the internet, just because there’s a lot of adults and a lot of older patients that aren’t necessarily in the same place that kids are in. It does look very different. So, that also helps. I also found that if we have a chance to have patients meet with similar situations, let’s say two younger school age patients with a Remodulin pump, if they’re able to meet and just see that the other patient’s okay and they look normal and they are able to play and do things, it makes things a little easier. And parents, when they’re able to meet, parents from different patients, that also can help with just sharing experiences. Again, in pediatrics at least, I have to really read the family where they’re at, how they cope, how much information they can handle at a time, and just kind of go from there. Just knowing more right off the bat can help with coping in the long run.

I’ve been in this role now for going on seven years, and I’m just amazed at how much has changed over these seven years. We’ve seen a lot of change with medication and therapies for pediatrics. I know there’s other things in the works with clinical trials in adults, so I’m excited to see how patients do with those medications. I’m attending the World Symposium on PH in June, which I’m really excited about in Spain. I look forward to seeing what the rest of the world has been doing and what they’ve been seeing with different therapies and different combination therapies. Then, I look forward to seeing what will soon become available for kids. We’re usually the last group of patients to get therapies just as they do trials with adults, so I’m excited to see the results from those studies. I’m just excited to share with families what I learned, just because it gives them hope, it gives them motivation to stick with the therapies we have now.

We don’t always have the most convenient therapies. Some therapies are multiple times throughout the day. So hopefully, in the future, there are just therapies that are easier for kids to manage and easier for families to manage and just to have better outcomes with these therapies. I pretty much have decided that the rest of my career is going to be in PH. I’ve been a nurse for 12 years and I just don’t see myself going anywhere else. The PH community is so strong, the doctors, all the scientists that are working on these therapies. Things just keep getting better for PH patients. It is a very close knit community, people that really care, people that are excited about the future of PH and how we treat it. I just kind of hold onto that while I do my everyday job.

My name is Alvin Rocha, and I am aware that my patients are rare.

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