PH Caregivers, Family Members & Spouses

[Kathleen Sheffer]

Welcome to the group for caregivers and family members. My hope is that you can find community here and support each other through the rollercoaster journey of a PH caregiver.

I am patient, but I know how important it has been for my parents and younger sister to connect with other parents and siblings of PH patients. The challenges you face are just as real and painful as the physical trials patients experience. Because I am not a caregiver, I will only be facilitating the discussion here, serving as a moderator and introducing new topics to the group.

[Brian Gilbert]

Hi! My name is Brian and my wife (Charlotte, but she goes by Charlie) was diagnosed with PH in October of 2013. She takes Sildenafil, Letairis, and Veletri (via hickman line since 4/1/16) as her primary PH meds. Secondary meds include lasix, potassium, etc. We live in rural Georgia, drive to Atlanta for her specialist, and Savannah for all other visits. I’m 47, she’s 48. We work from home and have several 4 legged children. I’ve been on a couple of the monthly Caregiver support calls provided by PHAssociation.org. I enjoy helping other caregivers during the calls and always learn something.

[Kathleen Sheffer]

Brian, thank you so much for sharing. It sounds like you and your wife have a wealth of experience with PH. Are your four-legged children dogs or cats? Or something else…I’m not sure how they do things in Georgia, hehe. I have a 10-pound Shih Tzu dog named Basil. She is six years old and always brings a smile to my face! How has the addition of Veletri been going? I know it is a lot of work to do all the mixing and pump changes. I was so lucky to have my parents help me with it for years. Welcome to the forums – I hope you learn something here too!

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