PH Caregivers, Family Members & Spouses

Thank you, @colleensteele, for your continued thoughts and prayers. Yes, they both worry and my mom, too.

I am happy to hear that Aidan bought a car. I knew that you had mentioned before that the vehicles were not in tip-top shape. I know that it is costly. I am grateful that my hubby can work on his truck and the Jeep. His truck is 2002, lol I…[Read more]

Thank you, @colleensteele, for your continued thoughts and prayers. Yes, they both worry and my mom, too.

I am happy to hear that Aidan bought a car. I knew that you had mentioned before that the vehicles were not in tip-top shape. I know that it is costly. I am grateful that my hubby can work on his truck and the Jeep. His truck is 2002, lol I…[Read more]

@jenc I’ve kept your husband in my prayers as well because I figured he has been so worried about you. I’m not saying that to make you feel bad. Those who love you worry, that is what we do. I know you have worried about your hubby as well. I’m just glad you have each other, and your daughter too!

No, it hasn’t been easy living with one car.…[Read more]

Oh no, @colleensteele! I am sorry to hear that you and your family are down to one car. That has to be a struggle. I hope that this week will be better for y’all. I can see how with 4 adults, one car would be challenging!

This is an important topic. The patients are sick, but the families also deal with many struggles when a loved one has PH. My…[Read more]

Thank you @mamabear007. We really appreciate hearing that!

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.

@colleensteele and @jenc, you both have truly helped more people than either of you will ever know. <3

@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.

@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…[Read more]

@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.

@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…[Read more]

@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.

@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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

@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…[Read more]

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.