PH Caregivers, Family Members & Spouses

@jenc you are definitely passionate! I also think that just like acceptance – patience and strength ebbs and flows for all of us.

I hope the succulents on your patio will hold great meaning for you now.

Such a profound piece, @colleensteele. I recall when you mentioned that you are writing about a TikTok video. Because I have only seen blips of those videos on social media from others, I thought of humor.

I love this as caregivers are resilient. Empathetic is undoubtedly you. But, strong, resident, holy, and compassionate are a few other words.…[Read more]

Oh, @colleensteele, I cannot imagine how difficult this was for you during the school year. Do you have any tips or suggestions that you learned through Cullen’s school years?

Yes, many thoughts and prayers are with our parents as they make these tough decisions this school year.

I remember the struggle deciding on when and when not to send Cullen to school during flu season. I can’t imagine how much more challenging it is now. Prayers for all the kids returning to school and for all the parents with worry on their minds.

Thank you @jenc. I’ve heard PH patients comment that they sometimes feel frustrated when referred to as strong, courageous, an inspiration, etc., because it make them feel like it’s an expectation. I think caregivers experience a similar version of this.

We are all human. We make mistakes, have emotions and can’t always give it all we’ve got.…[Read more]

Wow, another excellent column, my friend, @colleensteele! I like the analogy of Mary Poppins, and thanks, now I am singing that song, LOL.

This is an impressive piece that shares that everyone, including caregivers, is imperfect. I think that sharing this knowledge and will help other caregivers learn this early on.

Acknowledging this fact is…[Read more]

Hi @colleensteele, I am so happy to hear that your mom is improving and cooperating with PT. She sounds like a woman who knows what she wants and doesn’t want to do. I love that, but happy that you convinced her to seek medical care and participate in PT.

Yes, the timing was good in many ways. I am happy that you were there. We all know that…[Read more]

Thank you @jenc. There is never a perfect time for someone to get injured but if it were going to happen, when it did was perfect. So much better than if I were in WA, with no arrangements made to fly home, and find out that my mom had fallen. Not to mention, if I weren’t home, who knows how long she would have gone before finally going to the…[Read more]

Wow, @colleensteele, this certainly brought out my tears. I know that this was a long-awaited trip, and I, too, thought that you would relax a bit and focus on yourself.

But, knowing you as I do, I knew that once you noticed an issue with mom, you jumped right back in that awesome caregiver that you are. I know as I care for my aging parents,…[Read more]

LOL, @colleensteele, always been a fan of your excellent pieces.

That is OK if we are each others’ biggest fans.

Hopefully, others have read this but did not respond. I loved the pics. Corbin’s braids were beautiful. It is such a heart-touching and inspiring tribute.

Right back at ya @jenc! I think we are each others biggest fans. LOL!

@jenc thank you for the kind words. I wish I were half the woman you claim me to be. Trust me, I’m not super-anything but thank you for thinking of me that way.

I feel for you and how PH turned the tables on you. But I still see the nurse and caregiver in your. You might not be able to physically help others in the way you wish you could, but the…[Read more]

@colleensteele, I remember last week as you told Kev and me this story; it was funny. But I can so hear you saying that.

You are the supermom and caregiver, plus an awesome advocate for those of us within the PH community. I must add a special friend to that, too.

For me, this was the opposite. I was a nurse, the caregiver in my extended…[Read more]

Yes, I agree, @colleensteele. I smiled, was tearful, and inspired while reading this awesome tribute column. I love how you do your interviews.

You offer so many different perspectives of others while making such heartwarming stories for us all to read.

I thoroughly enjoy each of your columns and always left feeling inspired or learned…[Read more]

Thank you @jen-c. I was originally going to interview Corbin’s mom for the transplant ineligibility column I wrote prior to this one. But we decided with is birthday and death anniversary approaching I would write a tribute column instead. I’m so glad that is the way I went with it. It’s a sad story but also heartwarming and inspirational. His mom…[Read more]

Hi @colleensteele, reading this column last week, I have chills also; it broke my heart for Corbin and his family. He was so young but such a fun young guy, it seems.

Those braids were so cool!

I loved the rootbeer float and spaghetti dinner in honor of Corbin for his birthday.

I cannot begin to imagine the pain in his mom, Gillian’s heart.…[Read more]

Hi @colleensteele, this must take a toll on you mentally and physically. I am sorry to hear that your husband’s health issues have worsened lately. I pray that he will get some relief soon.

In the meantime, how are you doing? Are you taking time out for yourself?

I can only imagine how difficult this is for you on so many levels. Please rest…[Read more]

This is an important point. As we lean into being a patient or a caregiver, we tend to forget the other parts of our lives.

Lately, I feel like my life has been consumed with doctor calls, appointments, pharmacy calls, and insurance calls. Busy periods like this, I forget that I, too, am human. I am so much more than a patient.

I am a wife,…[Read more]

Hi @colleensteele, I am grateful that Cullen is stable, especially as far as his CKD.

I love that you are now focused on things, like school, a job, and his permit. It sounds like Cullen is trying to start these things. I am happy that he and Aidan are so close, and hanging out does help him, I am sure.

I bet he will be excited for classes in…[Read more]