September 25, 2019 at 3:00 pm #21423Mark KoziolParticipant
A forum member recently requested a topic on palliative care for PF. Many people think of palliative care in the same breath as hospice care. They are similar in several aspects but the underlining difference is; in palliative care the patient will receive treatment for the symptoms and disease, and hospice patients will not receive treatment for their disease and are considered terminally ill.
Ozge Ozkaya wrote a column for Pulmonary Fibrosis News titled, “Palliative Care in Pulmonary Fibrosis.” Ms. Ozkaya in her column states what symptoms for PF can be relieved by using the standards of palliative care.
I have also included a publication by the National Institute of Health. The publication offers examples of several patients and how they came to choose between palliative and hospice care.
Has palliative care been offered to you as treatment for your disease? Do any forum members have questions regarding this topic?
September 26, 2019 at 11:07 am #21436Michael KesslerParticipant
I was able to enroll my wife (age 77) with IPF diagnosed 3 1/2 yrs ago, on oxy 24/7 at 8L.
I had read about it for quite a while and finally decided it was something that would be of great benefit for her.
I can only say it has been wonderful and so glad she is receiving the added care and attention she needs. They are truly on the ball and practice what thay preach. Our Pulmo also said it is a wonderful program. In fact they have already talked to our Pulm0 and primary Dr. for some issues they were concerned about.
There are many providers available and a reco could come from a hospital or Dr. or you can do your own research. You do not need a Dr. referral to enroll.. they will simply come out and do a needs assessment and go from there.
September 26, 2019 at 2:23 pm #21437Mark KoziolParticipant
Hello Michael, I am glad you presented your experience with palliative care. Your point of view is much appreciated and will provide some context for our forum members. I am glad your wife and you are having a positive experience. Thank you Michael, mark
September 27, 2019 at 8:29 am #21444Janette MacDonaldParticipant
Thank you for the information, but I’m in Canada. I’m going to research the hospice care fir the province I’m in.
September 29, 2019 at 8:38 am #21468Susan HowittParticipant
Looked up palliative care here and there is none, nor hospice care, far too out in the sticks and to go into a city like Paris would be the end of me because of the pollution, and would drive me insane lol. Normally health care here is excellent if you don’t have something out of the norm, I do and have done loads of research but get poopooed here as *doctors know best* found they don’t, and *you shouldn’t believe all you see on the Internet*, there I do agree. So I will look after me.
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