Today, I’d like you to meet a devoted mom who learned when her daughter was 15 years old there had been an undiagnosed heart defect which caused her daughter to develop pulmonary arterial hypertension and Eisenmengers syndrome.
After having her world turned upside down, Jane fiercely cares for her now 17-year-old daughter and manages to also successfully maneuver through the typical trials of raising a teenager.
Robert’s Sister: Tell us about your caregiving situation.
Jane: I am a caregiver for my 17-year-old daughter, Nicole. In January 2010 she was diagnosed with a congenital heart defect, pulmonary arterial hypertension and Eisenmengers syndrome.
Robert’s Sister: Tell us a little bit about the diseases Nicole is facing.
Jane: VSD (ventricular septal defect) is a congenital heart defect meaning that Nicole was born with this. A VSD is a hole in the heart between the two lower chambers of the heart (the right and left ventricle). This defect allows blood to flow from the left ventricle to the right ventricle (left-to-right shunt).
Eisenmengers syndrome is a rare, progressive heart condition that has developed because of the VSD and the lack of diagnosis of the VSD. It is the reverse shunting of the heart (right-to-left).
Pulmonary arterial hypertension is high blood pressure in the lungs which isn't the same as the blood pressure in the body. The arteries in the lungs begin to close up making breathing difficult.
Robert’s Sister: As a caregiver, what is the biggest obstacle you've had to face?
Jane: I think for me, the most difficult part is the loss of the hopes and dreams for my child. She can't have children of her own and her future is uncertain. It is also difficult for me to watch her struggle with this same loss. This disease (PAH/PH) is rare and progressive and there is no cure. The prognosis isn't always good.
Robert’s Sister: How did you overcome that obstacle?
Jane: I don't think I have over the obstacle at all. I think I deal with it every day. I think as far as the fear goes, education is power. I educate myself.
Robert’s Sister: What organizations did you become involved with due to your caregiving situation?
Jane: I am involved in the local PH support group. I'm also involved in the Pulmonary Hypertension Association (PHA) and participate in several online groups and telephone support groups through PHA. I am also a member and a regular blogger on Caregiving.com which is a lifesaver for me and I am honored that I am part of this community. I have met wonderful friends through this site.
Robert’s Sister: What motivated you to be involved and to want to share info or advocate?
Jane: I think it is because Nicole's illness PAH/PH is so rare and there isn't much know about it. PHA is dedicated to research and support. I don't want another parent to feel as alone as I did after her diagnosis. I don't want another parent to have the pain of finding out their child has a congenital heart defect that went undiagnosed until they are so sick like Nicole or they collapse on a football field and die. I want any caregiver to have support as it is a very tough and stressful job.
Robert’s Sister: What have you done as an advocate or to share information with others?
Jane: I'm very active on Facebook. I have a blog. I have spoken several times (one of them being at a United Therapeutics marketing event in Hawaii). I spoke at a dinner about one of Nicole's medications. I educated other mom's about the disease at a homeschooling meeting. I am involved at Caregiving.com and I am trying to be more active in the local PH support group. I also would love to see a local caregiver support group in my area.
Robert’s Sister: Is there anything else you want people to know?
Jane: Yes, always listen to your gut. If you feel and/or believe that something is wrong then make this known. If the doctor doesn't take you seriously, look for another one who will. Also, always ask questions and don't stop until you understand. I don't always take this advice myself but I am working hard to achieve this.
Robert’s Sister: How can people contact you if they want to learn more about the diseases Nicole is facing?
Jane: I have my own blog called "A Day in the Life." I am also on Facebook and you can find me by Jane Northrop or by my email address email@example.com. I am also on Twitter as @phmomma21.
Robert’s Sister: Many thanks to Jane for her time and willingness to share her experiences!
Next, we will meet Laura, who cared for her husband who suffered a severe spinal cord injury after he was involved in a horrific motorcycle accident.