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I have emphysema, pulmonary fibrosis as well as PAH. Just lucky I guess. Any suggestions?

February 24, 2024
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A myPHteam Member

Dear John
I also have had sepsis. Also septic shock and PE in my left lung. That was in 2014 and I've struggled since, but I'm here! Now I have PH and emphysema! I know it's hard, but keep living day to day and pray as you go. Keep me posted on how you are doing. I wish you the best. Julie

February 28, 2024
A myPHteam Member

Dear John490, I'm sorry to hear of your situation. I'm a73yo widow and I live alone. I chose not to try for a transplant because I really lack the numbers for the support before, during and after. It's really quite extensive. I had pneumonia in the fall of '22 but luckily not sepsis. The doctor is very clear about doing all he can to keep me comfortable and as mobile as possible but I know it will go downhill from here. Just a matter of when. In the meantime I'm still trying to figure out how to get the laundry done. ;)

February 27, 2024
A myPHteam Member

I have the same diagnosis. My pulmonologist recommended a double lung transplant. I have been turned down by several transplants centers. My doctor is currently looking experimental drugs. I have been placed in palliative care for now. Palliative care thinks I need to go on hospice. I still believe there is hope, so I am refusing hospice at this time. My daughter does not want me to have any pain. I lied to her, I do have some discomfort. My spiral started when I got sepsis and pneumonia at the same time. Try to live life to the fullest.
God Bless,
John Chivalier

February 27, 2024

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