First in a series.
Many pulmonary hypertension (PH) patients and caregivers experience survivor’s guilt.
During my son’s battle with PH and the five years since his heart and double-lung transplant, a staggering number of patients have died because of PH and post-transplant complications.
Each time I learn of another death, I fight the urge to clutch my son in my arms and beg God never to take him from me. I often am overwhelmed with conflicting thoughts and questions: “Thank God my son is still alive. But is it OK to feel so fortunate when many are struggling with inconceivable loss?”
I’ve wondered how grieving moms would respond to these feelings of survivor’s guilt? So, I stepped out of my comfort zone and asked five bereaved moms to step out of theirs by sharing their perspectives.
Julie Keeton’s son Weston was likely born with PH. Around the age of 2, he started experiencing crises that mimicked seizures. Fragile but a fighter, Weston survived several years with PH until he received a heart and double-lung transplant in December 2013. He passed away from complications three months later at the age of 7.
Julie and her husband, Adam, have eight children. The day Weston died, they walked over a long bridge on the way home. They held each other tightly, both fighting the urge to jump and end their pain. “We knew we couldn’t because we had to be strong for our other kids and for each other.”
Weston has been gone for almost as long as he was alive, and Julie and Adam have nurtured his siblings through their grief. They still ask painful questions like, “Why was Weston so sick?” and “Why did he have to die?” The youngest, who is 5, is inquisitive about the pictures she sees of someone she never met.
I asked Julie why she continues to follow the PH journeys of other families when dealing with so much personal heartache. “I will forever cheer on the families of children who fight this disease,” she said. “Some of them became as close as family and I want to be that person that they were for Weston. Always cheering.”
Julie said that the best way to support her family is by remembering her son. Bring up funny stories and tell her kids how they look like and remind you of Weston, she said. “People tag me in Flamin’ Hot Cheetos posts (his very favorite snack) all of the time and I love it!”
Becky Anderson’s daughter, Isabella, was diagnosed at 3½ and battled PH for five years. She received a heart and double-lung transplant shortly after her 8th birthday and passed away six months later.
When asked whether she continues to follow the lives of other PH children, Becky questioned how she could not. “I became so close to several of the parents and their kids and I genuinely care about them.”
She cheers for the families whose children are thriving and for those who have received transplants. It’s exciting for her to hear positive updates and see children responding well to treatments. “It gives such hope for others,” Becky said.
It does take an emotional toll on her when she hears of another child losing their battle to this awful disease. “The memories of the day I lost Izzy come flooding back, and I sit and have a good cry.”
Despite this reaction, Becky encourages families to share all aspects of their journey. “This community is about being there for each other, through the good and the bad.”
Kathy Groebner’s daughter Katie Grace struggled with her health for two years before her diagnosis in 2008. She received a heart and double-lung transplant in June 2014 and passed away on Christmas 2015 at the age of 13.
Kathy compared balancing her grief and following survival stories to walking on a picket fence. “Sometimes I lose my balance and fall on the side of anger, resentment, and self-pity.” But she believes it’s important not to lie about her feelings.
Being honest with herself helps Kathy wake up in the morning and climb back on that fence. It helps to know that on the other side there is PHenomenal Hope. New treatments are offering more promise: Children are attending school, playing sports, and doing things that PH kids previously were told they couldn’t do. She struggles with heartache but rejoices that others still in the PHight are doing well.
For those less fortunate, she offers help, a listening ear, and a shoulder to cry on.
Next week, Christina Doak and Rhonda Williams share the heartache of losing their daughters and their feelings about survivor’s guilt.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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