PH Caregivers, Family Members & Spouses

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.

Thanks, @colleensteele; I can imagine as parents, you will always be “on alert” for Cullen. Yesterday, Manny stayed home with me. When my mom called, he answered as I was in the kitchen. She automatically was stressed. But she was happy to chat with me and know that I was not in the hospital. I just had a rough few days after my long day of…[Read more]

@jenc to be honest Cullen’s health still takes precedence over everything. I’m not acknowledging that in any bitter way. Everything we do for him is out of intense love. There were a few years post-transplant when things were more relaxed but his kidney disease has intensified our concerns again. Brian and I do enjoy non-medical related…[Read more]

Wow, another excellent column that patients and caregivers both can relate to, @colleensteele!

This is something that I often find; I tend to focus on my social media is PH updates. Ironically, I find that Manny, my hubby, and my caregiver also tend to stay updated on our PH community. It is often a joke at our house that I may not be active on…[Read more]

@jenc when they were younger it was more along the lines of tattling on the other, but as they got older I noticed it shifting to more about concern for the other. If they try to help each other by suggesting something and feel like they weren’t heard, then they come to me and express their concern. This doesn’t happen often though. As adults they…[Read more]

Thanks for your advice and for sharing some of your experiences. I talk to my mom the most; the others are “too busy” for her, too, most times. She knows of the ongoing struggle. I had a long chat with her not long after I got home. I think it was day 4, and I had yet to hear anything from them. It hurt, but I think it also helped me create the…[Read more]

@jenc, even if you don’t want to put your mom “in the middle,” I suspect she might not see it that way. My youngest (the one with CTEPH) rarely discusses his siblings with me, but the other two talk to me about each other, the good the bad and the ugly. Sometimes I can offer advice to them, but more often that not, I find that listening to them…[Read more]

Thanks, @colleensteele. I have talked to my mom about this, and of course, she shouldn’t be in the middle as we are all adults. I do talk to my therapist about these issues. I am working on setting boundaries, so they do not disrespect me. I am learning to be OK with this, depending on the day. Big hugs to you-

Since you are an only child, do you…[Read more]

@mamabear007 since my boys were so young when PH entered their lives it’s hard to tell what their relationship would have been like if Cullen was never diagnosed. I think if anything, the dry sense of humor they both share might have kept them connected. I do think PH and transplant has bonded them in a way that other siblings might not…[Read more]

Thanks so much for your kind and thoughtful words, @mamabear007. I can certainly understand that they may have different emotions related to my PH. But after almost 16 years, you would think they could grasp it better. As you said, it is too sad and their loss.

I am forever grateful for my other family here within the forums and around the…[Read more]

Merry Christmas, @jenc.

I’m so sorry your sisters have distanced themselves from you. I wonder if it might help if you told your mother (hoping she would rely to your sisters) that there’s no wrong or right way to feel. They could call and verbally hug you. Or listen. It sounds to me, if they’re afraid to let your PH into their lives, that they…[Read more]

Hi @mamabear007, I am grateful that your kids have bonded and became closer. Like you mention, I do not like the reason behind this. When you describe your kids before CTEPH, that “too busy” is what I get from my sisters. However, they both were laid off months ago, still “busy”, even too busy to call when I came home from the hospital. Still,…[Read more]

I love this column and post in many ways. It melts my heart as I know how much Aidan cares for Cullen. <3

I am the middle of 3 girls. We moved to Texas to be near them. Sadly, this didn't turn out how I had hoped. We rarely talk, and one lives about 15 mins. away, the other about 45 mins. When I interviewed my Moma a few columns back, she said, "…[Read more]

My son with CTEPH has an older brother and sister. His illness has strengthened the bond between him and his siblings. His brother and sister both live out of state, yet when he got married, they both traveled across the country to our home state to be there for him (even though their schedules rarely allow for such travel). Even though they don’t…[Read more]

Ughh, so sorry for back pain. I also have some degenerative issues that add to my chronic pain. I love heat, like my heating blanket bit I wrap myself up like a burrito in it, hehe.

That sucks when you are allergic to so much, @mamabear007. I hope that you can find some type of relief. Colleen is right; the cooler air does not help. That and…[Read more]

Thank you, @colleensteele. My back pain is from degenerative disk disease. While my disks are either herniated (or gone, causing bone on bone in my spine) along the entire spine, I mostly feel it in my neck and shoulders. The past few days, I’ve been feeling in in my lower spine, as well. I’m allergic to most things (Rx and herbal) that would…[Read more]