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    • #26357
      Colleen Steele
      Keymaster

      When my son was diagnosed with PH I experienced an intensity of emotions that I later came to realize was a grieving process. Thank God my son was still with us and treatments started to help almost immediately, but there was a sense of loss felt just the same. In my recent column I shared the grieving process my family went through and how it pushed past it.

      Have you gone through what I call, a PH grieving process? Tell us what that has been for you and how you are doing now.

    • #26374
      V.R. Peterson
      Participant

      When my son was diagnosed with PH, I sure went through those wide range of emotions. At first not believing this could be happening to my boy (denial), then I got ticked at everybody and everything, and the bargaining! I think that’s what my prayers were; trying to bargain with God to make my son well again. Then I sank into a depression. I honestly don’t know if I’d be at the acceptance stage by now if we hadn’t found out that his form of PH is CTEPH, treatable with surgery. I wish I could say that I would, but I don’t think I could ever be there.

      And then I see the people who don’t have the kind of PH that my son has, and I start feeling guilty and then get ticked off on their behalf. I’m not even sure that makes any kind of sense, but there ya go. Me in a nutshell.

    • #26384
      Colleen Steele
      Keymaster

      @mamabear007 it makes perfect sense! I wish we could meet in person some time because our stories, though different, have many similarities. I can relate to your grieving process upon diagnosis and the guilt of seeing others struggle with a type of PH that is different. I feel guilty that so many people are ineligible for transplant. My emotions sway between feeling so incredibly grateful that Cullen received a transplant to feeling so upset that many will never be given that opportunity.

      Thank you for sharing your grieving process. I know it’s not an easy topic to discuss.

    • #26389
      V.R. Peterson
      Participant

      @colleensteele, you are so right. And then after going through the grateful/guilty feelings, I feel guilty for feeling guilty about my son’s recovery. Sometimes being a mom is so confusing.

    • #26395
      Jen Cueva
      Moderator

      Beautifully written, @colleensteele. I love it when you say this and share your hubby’s response. “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.”

      Working in hospice care before PH, I thought that I knew the stages of grief from watching my patients and families. But as you mention, we often skip stages or go in different orders. I must agree that anger and most of the stages come and go at times for me. I am shocked that after 15 years that I continue to see struggle with bargaining, acceptance. I often feel guilty for being sick and grieve my old life.

      This is such an important topic, and I certainly can understand how you and @mamabear007 can relate on so many levels as moms and caregivers. I also feel guilty when we lose PHriends and I wonder why them. I feel more guilty if it is a PH kid.

    • #26586
      Marsha Ashurst
      Participant

      I‘m right in the midst of this six weeks ago diagnosis grieving process. Mostly I remain in denial, telling myself it’s all a mistake, how could a woman, who has been healthy, active, and a lifelong have PH. I’ve experienced very brief episodes of anger and sadness, but quickly revert back into denial. Even with a BNP of 4800, SOB, chest pain, dizziness, fatigue, a prolonged hospital and more, I still tell myself that the physicians are wrong. On top of that I’m a medical professional and have a fairly good understanding of the grieving process.

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