-
Determining when it’s time to stop working
Working full-time while living with idiopathic pulmonary fibrosis (IPF) has been a topic of discussion on these forums in the past. However, we welcome new members to this forum community every day, and it’s likely a topic many can relate to!
We all know how exhausting living with IPF is, both physically and mentally, and working on top of that can feel exhausting and overwhelming. Sadly, I am experiencing that these days and have posed the question to myself once again, “How do I know when it’s time to stop working?”
For others who have made that shift, how did you decide? I’d love to hear what the process of that decision-making was like for you if you’d be willing to share.
Charlene.
-
2 Replies
-
I finished work in July 24 as I started to suffer with blackouts. If you receive pip and. ESA it’s not great but you can manage. I now have a RS1 in place meaning less than 12 months to live. I’m in the process of withdrawing my Pensionbee funds tax free. Just a lot of red tape .
-
I have 20% good lungs left, I am on 10-25 O2 levels depending on what I am doing. At home watching TV I can get by on level 10, but when I move out of my recliner I need more. I have 3 level 10 floor oxygen concentrators at home so all my home is covered. I am on O2 24/7. I have a work office outside my home and a home office. If I get up and feel bad – ie O2 level under 88 and I can’t get it up easily with level 25, I stay home and work. I had to buy my level 25 regulators off Amazon, the suppliers don’t have them, they fit all the tanks I have but the very large ones that need a wrench to get them on and off and need to be wrenched on.
I am working about 3/4 time now. My PF is at very severe – the worst level. I am on the transplant list and probably will get my transplant this next summer, my most recent in January walk test – they stopped it because at 25 (on my own reg) I kept going below 90 and I had to keep stopping during the 6 minutes to get my O2 above 90. My PFT done also in January was terrible. I had to use tank O2 at 20-25 between tests to catch my breath. I call the PFT a torture chamber.
I also have connected 2 level 10 home concentrators together using a Y connector so I can get 20 out of them. As I have 4 – I have 2 sets of 2 each, I connect them together when 10 isn’t working very good, or I switch over to a tank at 20 or 25.
In the car, I have a battery portable concentrator (goes to level 8) and a large tank behind my seat (needs a wrench to get the reg on and off) it goes to level 25, also I have another tank that goes in the tank dolly as a back up in the car, also I have 2 small fat bottles in the car on the passenger side floor to use when I go to work or a store or as a backup.
I probably have 30 bottles in my garage as I go through them fast. The ones in the bottle dolly I go through in 1/2 hour.
When I come up 1 flight of stairs before I go to work, I need to put on the bottle at 25 to get my O2 up to above 90 and walk to the car, then I put my car ones on. When I get home from work I put the bottle one on at 25 until I get into the house and switch it over to the level 10 floor concentrator. I sleep on level 10 from a floor concentrator.
I have congestion in my nose as I am allergic to dust, my dog’s dander and other stuff, so I can’t use a nose cannula so I use a OXY mask which has openings in it for my exhale to go out. When I eat, shave, bath, etc I put on a nose cannula.
The Y connector attached to 3 – 7 foot hoses is at Amazon and is <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>Salter Labs Sa12277710 Y-Connector W/2 – 7′ Bonded Green Tubes,Salter Labs – Each 1
Thanks,
John
Log in to reply.