Pulmonary Fibrosis Support Group
Diffuse parenchymal lung disease (DPLD), also known as interstitial lung disease, refers to a group of lung diseases, affecting the alveolar epithelium, pulmonary capillary endothelium, basement membrane, perivascular and perilymphatic tissues. The term DPLD is used to distinguish these diseases from obstructive airways diseases. Most types of DPLD involve fibrosis, but...
Hi all I am an almost 69 year old female with the new DX of IPD with significant deteriation within the first three weeks. Cat scann proven this. I have had a biopsy, culture cat scans 2, cardiac echo, chest films, ABGs etc. I am on 4 liter of O2 24/hours a day just began feeling leg strength lessen occassion aches in my lower lung area, eating is less fun, many foods seem to stick, I live alone and that is how I want to be. I will not go for transplants, I am also not looking to have an open or wedge biopsy as I see no sense in it. My biggest concern is how to remain active and deal with the finacial issues and stay independent as well. My mental state is fine I am happy and don't want to be a downer. I go for a sleep stufy tomorrow not sure if that is routine and I am waiting to see the Pulmonologist with my biopsy report and gain more information within a week or so. Any advice or information is welcome.
Just found some responses i am still on oxygen 24 hours. Now 3.5 at rest and up to 5 with activities. I have great days and a few days that I struggle more. I am sick of hooking up and unhooking to go anywhere and carrying oxygen with me always. I look like a beach ball due to the Prednisone and we are trying to decrease again first attempt did not go well. Currently alternating 30mg to 40mg but feeling the effects right now. I belong to Eastern Star and they are my saviors in that they help me out with plowing, emotional support and I go when ever I can. I have another battery of testing scheduled for May to determine changes but so far no major issues other than the Prednisone side effects and ? eyes. I do feel a significant slow down in my energy but I was always so active others don't realize it. I hate naps in the day but have found they are necessary often.
Thank you all for your responses and keep in touch. Going to buy an inverter for my car to put my concentrator in the car as I can not use a POC
I am a single female living alone (almost 68 y.rs. old) and have been diagnosed with IPF (in reports) since 1/15 by 4 pulmonary Dr.s. Pretty sure the diagnoses is correct. Am on 2L of oxygen 24/7 now but think it needs to be bumped up.
Had stage 2 breast cancer in 2017 which I think was caused by the IPF. Went thru Chemo,radiation and of course lost all my hair (which is now back Thank God). Have sleep apnea,fibromyalgia and carpel tunnel in both hands for probably 30 yrs. Living on oxygen,,a C-Pap and a nepulizer along with enhalers and pills all day now. The 24 hr. oxygen started about 6 weeks ago.
I sleep very little and am up usually all night.
As your last post was almost 4 months ago, I'dd like to hear how you are doing now. It would be helpful to connect with another woman that has IPF and is close to my age. Hope I hear from you and it is good news.