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How Helpful Is It To Hear About Other PH Patients?
Reading and hearing about the stories of other PH patients for the most part, has always been helpful to my family. Somehow knowing that others are going through what we are makes the journey a little less scary. I’m also the type of person who likes to know what to expect, so hearing about the ups and downs that others are experiencing helps prepare me for what my son might go through. Sometimes when he has gone through really rough patches I did find hearing about the struggles about others a little overwhelming. But never have I regretted growing our PHamily.
How does following the PH journey of others make you feel? Does hearing about something PH related that you haven’t experienced worry you or is it helpful to be aware of what you might be challenged with later? Share your feeling with us.
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13 Replies
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Hi @colleensteele, I, too, enjoy learning from and hearing the ups and downs of PH families. I think, as you mention, at first, one may become overwhelmed. But, for me, the more I heard, the more that I wanted to know.
It is a bit less scary when you have talked with others who have been through things that you may be going through. I would prefer to be prepared than not to know anything at all. I also know that there can be a fine line for some. Just knowing enough to “get by” is what I have heard from other PH families. Everyone is different, just like our bodies with PH.
Great question and topic. Does anyone here become overwhelmed too fast if you read too much at once? Do you tend to take breaks?
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@jenc I would also rather know what to expect. There were several times when I got Cullen into see his doctor sooner than later because I recognized problems that other patients had experiences. I also knew when it was time to list him for transplant before the doctor ever broke the news to us. Being prepared for what might be helps me adjust to challenges better than if I am taken off guard – but that is me. Some would rather not know and just deal with things as they come.
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I’m definitely one who wants to know what to expect. I find it also helps to know that my son isn’t the only one going through this, and I’m not the only mother who has an adult child with this blasted disease. My son, on the other hand… I’ve repeated invited him to join PH and CTEPH groups, and he’d rather just live his life and learn about the new things as they happen. I couldn’t live that way, but he couldn’t live like I do. It’s definitely different strokes for different folks.
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Great topic. I believe the PH forum is the only one I have stayed on and participate in – I am usually uncomfortable with forums. The PH forum has helped me 1. to understand I am not alone with this disease 2 I have learned so much about what is new, what has helped others, has humbled me knowing what so many are going througb that is so much more than I am. Sometimes it is overwhelming and I do take a break. But, I come back and learn more and try and show my support to others. Thank you all!
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@mamabear007 Cullen won’t join any forums or support groups either, not when he had PH or post-transplant. He is like me in that he wants to be aware of what he might be up against but he would rather research privately or use me as a resource. My column next week is about why I tell Cullen’s story instead of him.
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@cdvol3gmail-com thank you for sharing how the forum has helped you but also why you sometimes take a break from them. I think it’s a healthy approach to anything. When something consumes your life, such as a disease, you need support, information and a place where you can safely have your voice heard. But sometimes you also need quiet – a chance to reflect on things before you allow in any more information. I’m glad to hear that you take breaks, but even happier that you always return.
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Cullen is lucky to have you, @colleensteele. I know that he must love and appreciate you more than you’ll ever know.
Like you, I want to know what challenges lie ahead and I can better prepare myself when I do know.
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@mamabear007, I am happy that you are here and like to learn. You are also great support for other caregivers here, well patients, too. It sounds like your son and Cullen are similar. Does the research on his on? Or, does his wife more since she is a nurse?
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@cdvol3gmail-com, I am happy that you stick with us. Even with breaks, which all need, we enjoy it when you are here.
I, too only have stayed on this forum. I have never felt comfortable to stay in others.
No matter what stage each of us is at, it helps to have support. Please know that and ask questions when needed.
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@jenc, my son lets his wife do the research. While she was in nursing school, a gal that used to have PH (was cured with a lung transplant) came in and talked to the class about her experience with PH; the former PH patient had dinner a few times with my son and his wife. They learned quite a bit from her. Sometimes, he’ll also ask his doctor when he has a question. You’re right; I think my son and Cullen are very much alike.
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Oh wow, @mamabear007, that is awesome! What a cool way to learn, are they still friends? I am sure that his wife stays up on new things and anything relating to his health, too. I am sure that it helps you relax a bit more. Although, as a mom, I don’t think we can ever relax and not worry about our kids.
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@jenc, I don’t know if they’re still in contact. You’re right, as a mom, I never relax about my kids (not even my two kids that have no chronic health issues). Kinda comes with the territory.
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@mamabear007 I do hear a lot of similarities between our guys. I have always been the researcher but Cullen has impressed me because he has apparently been researching kidney disease on his own. It’s possible he knows more than I do right now.
Thank you @jenc for always saying things that make others feel good about themselves. I know that Cullen is appreciative and I think my other son is too. They both know that I worry a great deal about both of them.
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