Brenda

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 a…[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 i…[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 i…[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 5…[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 that…[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 as…[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 to…[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 set…[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 dusted.…[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 2…[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 our…[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. Seems…[Read more]