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Two years on oxygen

I realized this past weekend that it has been a little more than two years since I started using oxygen. Wow! The realization makes me anxious. It would be typical for an HPSer to be doing much worse than I am now doing. Sometimes I wonder if I’m doing as well as I think I am. Then, I start to feel panicked because if I’m not, I’m running out of time to get listed.

The month I went on oxygen I had three other HPS friends who had to start using oxygen about the same time. Two of them have passed, and one had a lung transplant. It really does make one feel as though one is on borrowed time.

The last few days I’ve noticed myself more breathless as I walk around my apartment – something I can usually do for two to three minutes on room air. In an apartment as tiny as this one, that’s plenty of time to put away laundry or go to the bathroom without wearing oxygen. In the apartment it isn’t so much that I need more oxygen – I just seem to need it sooner. When I have one of my coughing fits I have real difficulty recovering on my own. I started checking my oxygen and found it could drop to the 70s when I was coughing. No wonder it is so hard to recover! So, I put my oxygen on when I’m having a coughing fit. It doesn’t help the coughing exactly, but just even a small “hit” of oxygen after coughing helps me recover quickly so that I can go back to room air and be fine.

After my lung injury in February, I had finally gotten back to my baseline by the end of April. This week, however, I notice I do need more oxygen when outside walking. That really troubles me! It puts me on the bubble of being able to use my portable oxygen concentrator. Tanks are just so much harder to manage. It makes it much harder to go anywhere, especially when you don’t have a car to put extra tanks in the trunk.

My allergies had started to improve, but this past weekend they were pretty bad. I feel like I have this tickle in my throat, like my throat itches. I’m hoping that this is the explanation, and not an advancement of my lung disease.

It is something I can’t help but worry about when I notice small changes. The panic sets in.

This weekend I wasn’t able to work or play as much because of a horrible headache, and a medium sore throat. That is when it is worse! I can cope with the panic feeling when I’m busy. But, when I’m not feeling well and in bed, all that is there is my brain and Finley.

Finley is such a sweetheart when I don’t feel well. He lays right next to me, only sometimes going to get a bone or a toy to chew on as if he were going to get a magazine to read. Yet, when he is sitting with me like this, I can’t help but worry about what will happen to him when I get really sick. I know he will be okay. He has a lot of people who will make sure he is cared for and always has a home, in case the worst happens. Yet, I will miss him greatly if I have to stay in the hospital a long time. We are so bonded that even if he is well cared for and has lots of people to play with him, I know he will miss and worry about me. I know it from just the week I spent in the hospital in February. He loves Jane, his dog sitter, but when I came home he literally leaped into my arms (quite a jump for a little dog!) When others want to take him for a walk, I have to fake him out and pretend I’m going out the door with him, or he won’t go. Often, when they get him outside, he refuses to walk and just wants to get back to the door.

It is touching, but it is worrying as well.

And, then I feel even more emotional when I think about what my fellow HPSers with children must go through and what they must be anxious about.



Yep, call me Debbie downer for the day. Thankfully, my headache is better today. It still hurts, but not so much that I can’t work on things today. That usually gets me out of my panic/worry mode.

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