PH Caregivers, Family Members & Spouses

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]

Thank you @jenc for bringing this important topic back up to the top. I hope the caregivers among us will open up and share.

Knock wood…Cullen has been doing really well health wise. He has gone months now with controlled blood pressure and his kidney function has been stable (well, as stable as he can get with kidney disease).

So, my concern…[Read more]

Caregivers are amazing but need breaks, too. I am looking for our caregivers and family members and want to check in on y’all. What is your main struggle at this time? Are you resting? Eating and drinking?

Our caregivers often put themselves last and don’t get the rest, nutrition, and hydration needed. As a patient, I admire the strength of our…[Read more]

My recent column, “It Takes All Types To Be Caregiver” was inspired by this topic.

It sounds like the setup to a joke – A director, a socializer, a thinker and a supporter walk into a hospital…but it’s not about four people, it’s about one and it’s not a joke.

What strengths did you go into caregiving with and what strengths developed over…[Read more]

@mamabear007 I’m sorry! That is so frustrating. Will they at least read articles or listen if you discuss something you read or heard that you want to share?

Cullen has never joined an on-line support group and neither has my husband but they do ask questions and express concerns through me. They will also read things that I think they can…[Read more]

Thank you for sharing the article, @colleensteele. I’ve invited my family members to join groups and forums that I’m confident would help them understand my son’s illness. None of them feel the need. If they ever show interest in these groups, I’ll definitely provide the links. Until then, they’ll do them, and I’ll do me.

I think this is an important topic to re-visit. How is your patient / caregiver relationship holding up these days? Any issues?

Do you ever feel picked on by your caregiver, even if they have good intentions?

Share your experience.

Oh no, @colleensteele. I am grateful that you kept your appointment. I am sorry that you are now awaiting the cardiologist a[pprcval for another RA medication. At least this doctor read that note, so you know this.

I hope that they will find a safe alternative for you.

I do know that caregivers often neglect their care. I usually update…[Read more]

Hi @colleensteele, please reach out anytime. When Manny is home with me, I turn my phone off so I can rest. On his workdays, I leave it on. But, I usually try and rest after 2-3 PM if I can, depending on how busy I am that day.

I appreciate the continued support and love from you all here.

Take care of yourself, too. BTW, any appointments for…[Read more]

@jenc I was tempted to message you a few times this weekend to see how you were recovering from your busy day Friday, but I’m always worried about interrupting your rest. When you get the results back and if you feel up to discussing them, we are here for you. Praying they will indicate improvement.