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How Pulmonary Fibrosis Complicates Simple Appointments and Everyday Tasks
As patients with a chronic illness, I know many of us have weeks that are full of medical appointments and we’re often left feeling both physically and mentally exhausted. Somehow many of my appointments land on the same week, and I reflected on this experience in a column I wrote about a month ago called, How Pulmonary Fibrosis Complicates Simple Appointments and Everyday Tasks.
In this column, I talked about how my disease has made it harder for simple appointments like going to the dentist, hair or nail appointments and other basic errands we still have to do regularly. It was interesting to hear from others’ how much that column resonated with them, as they too find this disease complicates simple tasks.
In addition to the appointments I mentioned in my column, I’m curious to hear whether others find specific appointments or daily tasks challenging with this disease, and in particular, which ones?
Do you have any tips on managing the difficulty?
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3 Replies
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My condition has gotten worse. I stopped working because of severe shortness of breathing can’t even go to groceries unless they have a cart scooter. I have to wear oxygen around the clock now. I can’t even walk my dogs anymore. I’m imprisoned in my own home because walking inside my home causes me to miserably short of breath. This condition is very debilitating. With severe nasal and oral secretions with intense coughing, I feel that I wanted to die. This is indeed a life sentence. I may not be able to help but through this forum, I’m able to pick up good ideas to ease my discomfort.
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I was diagnosed July 2021. I left the hospital on oxygen 24/7.I was on 2LPM and 4LPM. Since a portable concentrator was not usable for me so I need to drag around a tank on a cart every time I leave the house. In the beginning it was just a slight nuisance. I was still able to drive and loaded the oxygen in the back seat. However I became worse and my oxygen requirements doubled. There were times I had two doctor appointments and two pulmonary rehab sessions per week. This meant I was using a lot of oxygen tanks and they became difficult to get. My supplier was limiting what I could get each week.
After a few months supplies got better but then I doubled my oxygen requirements again. Now I was using a lot of tanks to go out. I finally got to the point that I fell from low oxygen in my blood. Going out was getting very difficult. I had to stop doing tasks at home because I could not keep my oxygen level in my blood high enough for more than 5 minutes at a time. I now use a wheelchair to go out to keep oxygen requirements lower. I no longer drive and my wife not only drives me around but loads and unloads the wheelchair each time.
I was hospitalized this July after a fall in which I fractured the fibulas in both legs. So not only couldn’t I breathe but I couldn’t walk at all. My legs have healed so I can get around the house but we have put a bed in our living room and I sleep there to keep me from going up steps. It also allows me to use just 25 feet of tubing instead of 50 feet. I used to cook supper but now I am lucky to be able to cut up veggies or make a salad while sitting at the kitchen counter. I used to grill and smoke foods but for some reason I am not supposed to go near flames.
So, IPF has pretty much rendered me useless.
Dave
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Good Morning. As a patient newly diagnosed with ILD/PF. Could someone taking Pirofedene or Olef let me know if they have experienced substantial weight loss. I will be starting Pirofedene the first week of December as I am now tapering off Prednisone. My symptoms have improved immensely from the Prednisone. I will be starting Pulmonary Rehab sometime this year. There’s a waiting list but not a very long list. I hear the rehab is very beneficial with PF.
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