A Family Fights Back Against PH

Brooke (center) and Ellice (second from right) with Jake (far left) and the rest of the Gunter familyBrooke (center) and Ellice (second from right) with Jake (far left)
and the rest of the Gunter family

By April of senior year, most high school students are thinking about prom, graduation and heading off to college. High school may be coming to an end, yet their lives are really just beginning. They will begin to learn a lot about who they are and who they want to be.

Two years ago, my little brother Jake was on this very path; he would be graduating in a couple months and starting his first semester at Temple University in the fall. He was just as carefree and optimistic as any other 18 year old — until he went in for a routine checkup for his ulcerative colitis and left in an ambulance.

While the doctor was performing a CAT scan, he saw that the right side of Jake’s heart was dangerously enlarged and had him immediately rushed to Children’s Hospital of Philadelphia (CHOP). After spending five days in an intensive care unit and undergoing an extensive battery of tests, a diagnosis of pulmonary hypertension was confirmed. From that moment on, Jake would no longer be that carefree 18 year old whom he very much deserved to be. He found out earlier than most who he was. He was now a person who had PH, and I think I could safely say that he would have rather been anyone else.

Our whole family spent the next few months digesting this diagnosis and helping Jake get accustomed not only to his first year of college, but also living his life with this chronic disease. We were very lucky that CHOP had accepted him as a new patient, even though he was already 18, and even luckier that Dr. Brian Hanna, a PH specialist, was interested in taking on Jake’s case. Dr. Hanna knew that we would be searching for more information on the disease, and he actually forbid us to look at any website other than PHA’s. With the help of Dr. Hanna, Jake was able to adjust to his new medical regimen and to integrate his disease into his life. Jake appeared to be living successfully with PH.

Unfortunately, his good fortune only lasted about nine months. When Jake went to CHOP for his annual heart catheterization the following summer, we were informed that the medicine was not effectively controlling his PH and that he would have to be put on a pump that would deliver medicine into his body 24 hours a day. Jake made a valiant effort to return to school in the fall, but he quickly realized that his body simply could not handle it. It was at this time that Jake knew he would no longer be able to pursue his dream of becoming an athletic trainer, and he withdrew from college for medical reasons.

Perhaps that first year after his diagnosis blinded us all to the reality of his disease. Maybe we were just too scared or delusional to imagine the possibility that all the negative things we read about PH would actually become Jake’s reality. One thing was for certain, we could no longer ignore it. We needed to get involved, to fight back.

I decided to create a fundraising page through the PHA website to tell people about my little brother and raise awareness of PH. I wanted to show him just how many people believed that his life was worth fighting for. The response I got was absolutely overwhelming. We were able to raise more than $5,000 in just two weeks. It goes to show that people really can surprise you if you just give them the chance.

Our mom contributed with fundraising efforts of her own as her office began a new program in which they would raise money for a different cause every other month. Many of her co-workers and friends had lived this journey with her from the very beginning, so they were more than happy to have PH be their first cause. My family and I have experienced great success in our initial fundraising efforts and plan to continue to tell Jake’s story and raise awareness of PH any way that we can.

Jake loves to make people laugh. He is undoubtedly one of the funniest guys I know, and I guarantee most of the people who know him would agree with me. Jake is smart in that natural, witty kind of way that everyone always wishes they could be. Jake dreams big, he has plans for himself that most would consider impossible given his condition. He is loyal and kind. Most importantly, my little brother is brave. In the two years since his diagnosis I have never heard him complain, not even once. I know Jake struggles with his disease every day, but he chooses to suffer in silence. Life has dealt him a less than ideal hand, yet he continues to joke his way through the pain; Jake may be a person who has pulmonary hypertension, but he has not, and never will, let his diagnosis define him.

By Brooke Gunter, Sister to PH Patient Jake, and Their Mother Ellice

This article first appeared in Pathlight, Summer 2012.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.