I hope you all are pushing through this disease. It is exhausting. I’m replying to test intervals. I was suspected of having IPF in 2020 by my family doctor after having shortness of breath. My lungs showed up a little behind my heart which was being tested.  With Covid and delayed pulmonary testing, I officially was diagnosed July 2021. I have… Read more

Hi Charlene. I read much of what you write to possibly give me an idea where I am in this disease. I’m sorry you  have to deal with this at such a young age. I’m also not sure what to think in my case. I recently had my breathing tests as I have one every 3 months.  My last one had a conclusion by the reader of the results that I had a moderate… Read more

I seem to be able to do less and less each day. I still clean, wash my clothes and do most of my grocery shopping. I  can take my time and take breaks. My biggest issue is all the appointments.  I do have people that take me to many appointments but I hate asking people so often. It’s gotten hard because parking seems to always be far away. Once… Read more

Don, try checking with the business where you had your rehab. The place I went to, you are welcomed to come back. I have to call ahead to see if there is room for me. I finished in  June and told them that I plan on coming back in late Fall.

This is an interesting discussion. I’m widowed so I don’t have my best friend to bounce my feelings off of. My son likes to hear what the Pulmonary doctor has to say. It’s nice but he tends to put a spin on my diagnosis. I think because he gets married in December of this year. He has said he wants me here which I understand as his dad died… Read more

I agree with you 100%. I’ve been having tests every 3 months  for a little over a year. This time my tests were done by two physical therapists that previously worked with me. They had trouble keeping my numbers up and were checking on me a lot. One even called the Pulmonary department to tell them what was happening. I was given antibiotics… Read more

Hi Natalie.

I just had my breathing test and 6 min walk last week. I was at a 3 or 4 setting. I have tests every 3 months. This week I’m going to try continuous flow on my portable machine. I can be at 1 if I’m just sitting with my floor concentrator. At 3 or 4 when I’m cleaning, gardening, or doing things around the house. For some reason… Read more

I too, feel that I share too much with one of my sons. My husband died 5 years ago so he’s really been a help to me. He also goes to my Pulmonary doctor appointments. I feel like I  have to try to make my breathing seem normal around friends. It sounds silly but adjusting to this diagnosis is hard. I am on oxygen. My number drops to high 70’s… Read more

Charlene. I tore my tricept off my bone right before Christmas last year. I did go to therapy because I chose to not have surgery. I wasn’t sure how hard it would be on my lungs. The therapy wasn’t hard. I still had problems doing the exercises because I would get short of breath. I was using my oxygen and still dropped to to the 80’s. I was… Read more

I have papers on tips from my physical therapist. I was doing many of the tips as I also have back issues.I was told to place most things at shoulder level. The reaching and bending takes more energy. I also have a Roomba and a light weight Shark for quick cleaning. I don’t wash walls anymore. I use a dust mop to get the ceiling and walls… Read more

My dad died from emphysema. He was at 25% lung capacity when he started failing fast. He was put on morphine at the end and he did not wake the last two days. I pray for that kind of ending for me. I was diagnosed after endless testing last July. In June they considered a PF diagnosis.  In July I was put on oxygen for activities.  I’m now on it… Read more

I hope my oxygen usage doesn’t go as high as many of yours. I’m only at 2 at night and 3 when I’m up and about. My nasal passage seems dry all the time. Then it hurts. Then I start feeling the cannula in my nose and then I feel like I could crawl out of my skin. I have a couple questions for you all. Why aren’t we supposed to use Vaseline in… Read more

What is PF trauma? How or why do we need Palliative care?

I was diagnosed last June, officially. I was referred to a Pulmonary Doctor May of 2020 by my Family doctor. Because of Covid it was hard to get an appointment but I finally did April of 2021. I’m reading as much as I can about this disease. I have been on oxygen since July 2021.… Read more