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    • #25274
      Jen Cueva
      Moderator

      Although, when we think of PH, we tend to focus on the heart and lungs, PH affects our overall wellbeing. That being said, this week, I wanted to share my most recent column. May is Mental Health Awareness Month, and I think this is the optimal time to open up and share our struggles with mental health.

      Often, when we open up and share our struggles with mental health, others want to open up and share too. I think this is a great way to help spread awareness about the importance of mental health to our overall wellbeing.

      PH affects our mental health in ways one would never imagine. Do you struggle with mental health? If so, what coping mechanisms do you use? Do you see a therapist? What works for you? Let’s talk about mental health and raise awareness this month.

    • #25286
      Colleen Steele
      Keymaster

      @jenc another excellent column and such an important topic. I have not officially been diagnosed with PTSD but I do believe I struggle with it. Many of the signs are there and I am often aware of it. Anxiety is definitely an issue for me and I am taking something for that…have been since Cullen was listed for transplant. It definitely helps.

      I have a friend who had 3 adult children pass away from Cancer. When the first passed away she noticed her memory, thought process and concentration levels deteriorated and it has never improved. When Cullen became critical and we weren’t sure if he was going to make it to transplant, I started noticing similar problems. I still feel like I’m not as sharp as I use to be and my memory often fails me. I really do think all the trauma I have been through with my so has played a part in this.

      Do any other caregivers feel the same way?

    • #25296
      Jen Cueva
      Moderator

      @colleensteele, can’t even begin to imagine how traumatic this must be for you and your family. I know with my diagnosis and traumatic hospitalizations, it affects my family as a whole. I’m grown, and I know this continues to influence my mom.

      Oh no, your poor friend. That is a lot to deal with, losing 3 adult children. I, too, notice that focus and concentration are off most days. I was an honor roll student, and in the last five-plus years, I feel like I’m losing it some days. Often, it takes me much longer to type and complete things.

      Thank you for your kind words and support. I know for me, talking through some of this, although painful, is helpful. I would guess that most caregivers also have noticed some of these mental health changes.

      What other mental health changes have y’all noticed?

    • #25305
      Colleen Steele
      Keymaster

      @jenc I told my friend when I started experiencing the symptoms she was struggling with that I now totally understand. I do believe trauma can have that effect on people.

      To be honest, I do believe I have been doing better mentally since Cullen’s transplant but that’s not to say that I don’t still sometimes have bad days. Cullen is doing great. He seems to have found a way to balance the ups and downs so that it doesn’t overwhelm him. Losing a PH friend on his birthday last year was hard and he was quiet for a while. That’s how he deals with things, he asks for space and time to deal with things privately and will ask to discuss things when he feels ready. I try to respect his wishes and give him time to come to me with things that are upsetting him.

      How are you doing these days Jen? Have you experience any dark days or managing to stay in the light? Always here to talk whenever you need a listening ear.

    • #25318
      Jen Cueva
      Moderator

      Thanks, @colleensteele, you are so kind. I am a bit like Cullen when I am down and tend to keep more to myself. I know ghat is not always the best idea per my therapist-hehe. I am working on this and think that I have made some progress in opening up more about my feelings.

      I can imagine that after transplant and then once the post-transplant stress tends to decrease, you must feel somewhat less stressed. But as a post-transplant patient/caregiver, do you think that you can ever “let your guard down”? I know many say this is an ongoing issue mentally for them.

      I am doing ok, the forums and keeping busy helps me when I am having the not so bright days. Do you tend to busy yourself in dark times, too?

      What about everyone sale, do you tend to busy yourself or the opposite when your mental health is not at it’s best?

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