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A myPHteam Member asked a question 💭
Palmyra, IN

I asked my PCP if he could get me started on Palliative Care, he said yes, we are talking on Friday.

April 10, 2024
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Answer Summary

Members shared a wide range of experiences with palliative care in the context of pulmonary hypertension, from those just beginning to explore... Read more

Members shared a wide range of experiences with palliative care in the context of pulmonary hypertension, from those just beginning to explore it to those who have been enrolled for years. Several members noted challenges around insurance coverage, with some finding that Medicare and certain plans like Humana do not cover palliative care outside of hospice, while others praised the quality-of-life improvements they experienced, including better pain control and more activity. A recurring theme was that palliative care availability and quality varies greatly by location, and members encouraged each other to ask questions, check coverage, and advocate for the support they deserve.

A myPHteam Member

They are working great! I breathe so much better and can do more!

May 5, 2024
A myPHteam Member

I don't think I really understand the differences between palliative care and hospice care. I need to start reading about it to better understand it. Right now I'm still pretty independent.

April 10, 2024
A myPHteam Member

Hi Cheryl736, l'm sad to hear that your area is not as well served with Paliative Care and Hospice. I was a Hospice nurse in Columbus Ohio and we had specific beds in each of our three hospitals for Palliative Care patients. These patients received care for symptom management including, but not limited to,uncontrolled nausea and vomiting, pain, severe
constipation, uncontrolled restlessness etc. Both teams worked closely together. I hope to God that l can get such good care if and when l need it. Hospice Care remains for people with a life-limiting illness such as cancer, Altzheimers dementia,
ALS, stroke, severe heart failure oŕ end stage renal or lung disease or no longer responding to treatment, to name a few. Some people wait too long to call Hospice
for care. It is best if care is initiated 6 Mos to a year before severe symptoms occur as the Hospice team has an opportunity to get to know the patient and family, so that teaching can begin early with everyone involved. Of utmost importance is the comfort of both the patient and family. Blessings!

April 17, 2024
A myPHteam Member

Hi Ladybug. Well, that’s great information maybe for a later date? I think that is reasonable because I got better then so much worse. Now I’m working hard on getting better again. At first I had left heart failure and was treated with Entresto. My left heart failure cleared up only now to have right heart failure. If I can get all the fluid off I can start PH meds. So possibly I would have just decided to maintain several months ago and not had anymore heart caths or treatment? For now, my Master Physician is in charge and I think I will know when to reconsider palliative care. For now, I’m feeling better!❤️

April 13, 2024
A myPHteam Member

I just saved the article onto my desktop for tomorrow.

April 10, 2024

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b'klyn, NY

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