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How Do You Share The Story Of Your Loved One?
Patients and caregivers are encouraged to share their story in an effort to spread PH awareness. There is a fine line that you need to be aware of when you are telling people the experiences of someone else. I wrote about this in a recent column.
How do you share the PH journey of your loved one? Are you careful about their privacy? Do you ask permission before posting to social media or other outlets? Share your thoughts with us.
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16 Replies
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Hi @colleensteele, this was a fantastic column. It opened my eyes more about the things you take into consideration when you write for others. As a mom and a caregiver, this must be challenging as Cullen gets older.
As I have mentioned before, Cullen is fortunate to have you. I am confident that he appreciates you much more than he could ever show you. You were his eyes and ears for years. As a mom myself, this has to be overwhelming at times.
How have you handled stress as you have dealt with PH, pre, and post-transplant? I know that your faith has played an enormous role in this. What else would you say helps you in the most challenging times?
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My son values his privacy, so when I share, I don’t share his name or other too-personal information about him. He seems to be okay with that.
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@mamabear007, I can respect his privacy and understand that, especially at his age. I think that you can share and help others while also protecting his privacy. Your caregiver journey is helpful for so many. Also, for those who have CTEPH, you have his surgery, you have that to share, too. Caregivers go through so many of the same and then their own emotions. Do you agree?
As a caregiver, what do you think was or has been the toughest time for you? I am sure any time seeing your child sick is heartbreaking.
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As a caregiver, the toughest time for me was before the surgery, while I watched his health fail, knowing that I was watching him die before my eyes. It got to the point that I didn’t think he was going to live, and my prayers changed from asking for his improved health to asking that God send someone to him who would help him enjoy life (however long that would be). God sent the woman who would be his future wife, and through her medical contacts, she was able to find the help he needed to improve his health. So he found the joy in life that I had asked for, and then (through the surgery) he got his life and his health back. God’s plan for my son took me 100% by surprise.
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Wow, @mamabear007, that just gave me chills. I cannot even imagine how you must have felt as you had no control and could not help him as you watched his health fail. God had perfect timing with his future wife, and that is what you both needed. What a touching story!
I am sorry that you endure so much pain at that time. As a mom, I cannot begin to imagine the toll that this takes. I am grateful for his surgery, and he got his life back. I am hopeful that he will continue to enjoy life. Let’s not forgotten those grandbabies to come.
This story needs to be told to as many you can to offer hope for others who may benefit from PTE surgery. Thanks for sharing with us – big hugs from Texas.
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Thank you, @jenc. I had major PTSD for several months after that. I knew he was healthier, I saw that his breathing was easier, yet I still felt the dread. From what I’ve read, this is normal. The PTSD is now gone, and I’m just feeling gratitude. I will never tell him how it affected me, though; if I did, I’m pretty sure that his days of confiding his health issues would be gone forever.
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Oh, @mamabear007, I can imagine this took a significant toll on you mentally and physically. I can respect that as a mom. I think we often leave those parts out when we talk with our kids. The PTSD sounds like it would be typical. I am grateful that you have overcome that. That must have been challenging and took years to get through. Did you go to therapy, or what did you do to help you with PTSD?
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@jenc, I got over it a few different ways… First by finding the PHA CTEPH Facebook group and letting the members carry me for a bit. Then when my son was healthy again, they asked me to help moderate the group. As scared as I was to do that, I found that helping others helped me. It’s kinda branched out from there, and now I don’t have time to be freaked about what used to be. 🙂
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@mamabear007, I am happy that you could share your story with others and help the Helping others help us in so many ways. I am grateful that you allowed them “to carry you” for a while. That is often more challenging to me than helping others.
Thanks for sharing, I am sure that others will relate, even if they do not comment.
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@mamabear007 as a mom and caregiver I can relate to so much of what you have felt and experienced through every stage of your son’s journey. I accepted the position as moderator because I am in a better place emotionally now and I want to help others the way many came to my rescue over the years.
I’m guilty of using my son’s name when at first he really didn’t want me to. It was getting awkward on the forums and challenging when writing my columns when I couldn’t share his name. We discussed it and he finally gave me permission.
I have really enjoyed getting to know you. The life your son has built for himself gives me so much hope for mine. I think what your son’s story has taught me is to never say never. You must be so incredibly proud of him.
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@jenc I’ve been very fortunate to have incredibly supportive friends and family. My family has good people that has stuck by us through thick and thin.
What helps me the most during difficult times is journaling and copious note taking. The better prepared I feel when talking to doctor’s and medical staff, the better I feel emotionally too.
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@colleensteele, your reply to @mamabear007 has me teary-eyed. This is amazing to read and watch as so many connect here in the forums. This is what it is all about- group hugs.
I am happy that you have such a strong support system. That certainly helps along this journey. Journaling and writing notes, as well as education, is an essential tool. I am so grateful that Cullen has such a strong, loving, passionate mom and caregiver.
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@jen I became a moderator because I want to help others but I continue to get so much in return in these forums. I still need advice and understanding too and many members such as @mamabear007 have given me that.
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@colleensteele and @jenc, you both have truly helped more people than either of you will ever know. <3
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Well said, @colleensteele, the love and compassion in this forum goes both ways. I am grateful.
@mamabear007, you are so kind. You are a huge support to us and all of our forum members. Thank you for all that you do.
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Thank you @mamabear007. We really appreciate hearing that!
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