Skip to Accessibility Tools Skip to Content Skip to Footer

idiopathic pulmonary fibrosis

My husband has IPF and emphysema and on lung transplant list is there anyone else waiting patient or care giver that can give me practical advice? Many thanks

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • 1vi5whr
    4 years ago

    Hi, my younger brother just went through a bilateral tx and I was one of his caregivers. What I found helped me was to go to the FaceBook page of the people waiting for and the people who are dealing with transplants. Read about what’s going on, who the favored docs, what drugs had which side effects, trials and solutions are all there. Call your tx hospital and ask for the person who helps families with coordination of the transplants–see if that person can direct you. Get to know that coordinator person as soon and as well as you can–ours had the answers for everything. We were at the Univ of Washington.
    Tell your family and friends what’s going on–allow them to help. Be ready to ask for a bit of help and don’t be the ONLY caregiver if you don’t have to.
    TAKE CARE of the caregivers!! It’s hard to stop working to help, to go get, to call, etc. Be ready to delegate.
    Communicate–Full Disclosure–Ask questions of the Dr’s and don’t let them shut you down. Best of luck!!! Best Wishes!!!

  • Poll