It’s challenging to develop healthy coping styles upon receiving a shocking pulmonary hypertension diagnosis. My 8-year-old son, Cullen’s, PH diagnosis was like a magic wand that instantly transformed our family’s lives. For roughly two years we had struggled to find the cause of Cullen’s distress, but once we had an answer, our old lives were blown away.
The most recognized stages of grief are denial, anger, bargaining, depression, and acceptance. Not everyone experiences the stages in the same way, and for us, denial is a recurring theme. Initially, denial came in the form of an overwhelming sense of panic. Sadly, that feeling always seemed to lurk in the shadows and never went away completely.
Denial also came in other forms. We still had a brief hope that a second opinion could rescue us, but we didn’t have the luxury of taking things slowly. Cullen’s already enlarged heart and deteriorating lungs needed urgent treatment to slow progression of the disease and improve and prolong his quality of life.
Fairly early in his treatment, it was suggested that Cullen apply to the Make-A-Wish Foundation. At first we thought that meant giving up hope for Cullen’s survival, but just as the Make-A-Wish mission statement promises, Cullen’s wish experience was life-changing in a positive way. His granted wish to meet U.S. President George W. Bush enhanced Cullen’s courage to keep fighting PH and inspired optimism in his parents and sibling. Hope was renewed through Make-A-Wish.
We also resisted when Cullen’s social worker suggested signing up with the Children’s Organ Transplant Association. It was well over a year post PH diagnosis before we finally took that advice. It was difficult for us to ask others for help, but our community pulled together, lifted our spirits, and fundraised for the inevitable heart and double-lung transplant. When that life-saving surgery happened in 2014, we were so grateful for all the people who helped us rise above our grief and prepare for Cullen’s second chance at life.
We also experienced denial when Cullen’s doctor suggested we get a handicap placard. At first we felt uncomfortable using it, but as Cullen’s disease progressed, we came to rely on it more and more. We could say the same for supplemental oxygen. At first it seemed unnecessary, but before long, it became something he couldn’t do without.
Anger was another sinister shadow that followed us through the years. Anger that Cullen wasn’t diagnosed sooner. Anger that Cullen is treated differently because of his condition. Anger about life experiences that Cullen will never have because of PH. And many times, anger at God. I can remember more than one heated “conversation” with God asking how he could let this happen to our son. Afterward, I would regret those thoughts, but as my husband says, “That’s OK, God can take it. He forgives you.”
One good thing about anger is that it often fueled the fires of determination that helped give us the strength to continue fighting.
Any bargaining I did was always with God. I often prayed for God to please help my son survive. Inevitably, those prayers ended up at acceptance. At some point, the doctors, nurses, and caregivers have done everything they can, and I just have to let go and trust God.
The hardest stage to deal with is depression. Once you’re “introduced” to a life-threatening disease, depression is a constant companion. We know too well the odds are against us. We have seen WAY too many PHamily members succumb to the ravages of their condition. Depression saps your energy, clouds your mind, obliterates your determination, and destroys your hope. Please do not underestimate its power or it will latch on and drag you down. Reach out to others and let them help you beat it.
- Don’t let denial keep you from things that will improve your quality of life.
- Don’t let anger hurt the ones you love or make matters worse. Direct it at God. He can take it.
- Bargains may offer some degree of consolation, but don’t let them keep you from making informed decisions about your treatment.
- Try to keep yourself from sinking into depression. Reach out to others if you’re getting overwhelmed.
- Accept your situation, but don’t let it keep you from fighting for your life.
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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