I'm Aware That I'm Rare: Nancy Frede, RN

Nancy Frede, RN is a mother of a PH patient (Camille Frede) surviving 24 years since diagnosed. Nancy is a nurse, which is an advantage in managing healthcare issues with her daughter. Transplant is a new area for them both, but their support system with pulmonary hypertension has helped get them over many hurtles. Nancy is dedicated to helping others along their journey since children with PH are surviving longer.

Transcript:

My name is Nancy Frede, and I have a daughter, Camille, who has pulmonary hypertension, and I became familiar with the pulmonary hypertension community when Camille was about 7 years old, and we struggled without any support for approximately three years before getting some additional support from other PH moms.

When Camille was initially diagnosed, there was only one oral option available, so we were blessed to have that one oral medication available and as the years went by, we discovered alternate medications after being exposed to other parents in the pulmonary hypertension community and identified that there were other children running around and living active lives where our daughter was not running around and living an active life. We sought out additional information from other medical centers, and we feel blessed that we had the availability to travel to alternate centers.

I first reached out to another mother who had a daughter with pulmonary hypertension and previously had been told by a number of health care professionals that she would never be able to play sports. She would never be able to swim. We were given a five year diagnosis for her to live. So, after talking to another mother, her daughter was actively playing basketball, also participated in softball, and we were a family that was active. We ride bikes, we participate in sports, we hike. Knowing that there were other children out there that didn’t have as many restrictions, we sought those physicians and advisement.

Emotionally, it was enlightening, and it was like a breath of fresh air that we were being told that there was some hope. Medical professionals, they have to give it to you in medical terms, and they are not very good at providing a lot of hope. They have to give you the numbers and sometimes the numbers aren’t very good. We were given some hope through this other PH mother and then she also connected me with other mothers and since then, I have been called by other mothers to provide that same identical hope because you don’t get a lot of it from your physicians.

When she was initially diagnosed, we were given the instructions to take her home and enjoy her time. So, after she lived that five years, then you have to wrap your head around, okay, we’ve accomplished this so far and maybe there isn’t that deadline that we have to look at in the future. Let’s look at hope and alternate medications and see who’s doing the newest and coolest in therapies and maybe she’ll make it a few more years.

We identified early on that we had to give her the mindset of establishing goals. She had to graduate from grade school and then getting through high school, getting to that point of graduation is phenomenal. We made sure that she made plans for college and sought that plan as well as we could and there were obstacles, hospitalizations, setbacks, but we always made sure that she had her eye on an extended goal and to see her accomplish those goals was phenomenal therapy, and I think it provided her with some hope through those times of struggle and got her through those hospitalizations.

When Camille decided to attend a local college, we wanted her to experience college life and be in the dorms. We worked specifically with the college to make arrangements for her oxygen, and she initially had roommates, but after contracting a couple of colds, the college worked with us and they were able to give her a private room that attached with other suite mates so that worked out well. Having her close to home was reassuring that if anything happened, we wouldn’t be that far away but, it was hard for Camille because both of her brothers had moved out of state to attend college and I think she was excited just to be out of the house and be independent and I think that independence is important because they need to move on just like any other child and know that they can confidently take care of themselves but still have a little assistance with medications.

Physicians advised that she be independent with all of her medications and do all of her own mixing of her IV medications. We took the stance of allowing her to focus on school and we assisted with some of the mixing of medication and also taking care of the pills and the prescriptions and the insurance information. She wanted to focus on school so that’s what we helped her do.

I’m a nurse as of 25 years and that has helped navigate through this pulmonary hypertension with my daughter in insurance review. In clinical review, I’ve been able to kind of keep tabs on normal values. I think, maybe, sometimes it has driven me a little nuts because I know a little bit more than the average person, but I also feel that Camille is one of the older diagnosed children and children are new to pulmonary hypertension living this long so, we’ve always kind of made a statement that we’ve been a guinea pig for the medical professionals. Because we’re all learning and we’ve loved the idea of teaching and helping others learn how to navigate through this disease state. We communicate well with other nurses. The nurses are a little bit freer to share that information with ourselves and then we would connect with other parents to help them navigate through the difficult periods, because we knew that we had that advantage point.

So, now, currently Camille is listed for a heart lung transplant. She’s in the hospital. This is a new chapter of this disease state. We’ve reached out to one other family that we know of and now we’ve heard that there’s a couple of other ones we need to reach out to, to help us navigate this brand new area. We’re in the process of waiting and we’ve been waiting since October and we just have to not lose faith or hope and we’re privileged to have another option available. We can’t lose sight of that but, we also are scared because we don’t know what to expect.

My name is Nancy Frede and I’m aware that I’m rare.

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