Life on the Leash – Beginning Oxygen

Getting put on oxygen is one of those milestones in living with HPS that tends to be a rite of passage – and not in a good way. It’s the tangible signal that this thing you’ve been dreading happening one day has arrived. It’s like using a cane for a blind person. When you’ve got tubing on your face and air squirting in your nose, you can’t deny what’s happening. The people around you suddenly get that what is happening is serious (even if you’ve been telling them this for years and living with declining lung function). It’s just so viable!

A few weeks ago when my PCP wrote a script for oxygen if I went to visit my mom, I was really shaken. This time the news that I had to move to be closer to a lung transplant center was such a big blow that the oxygen just didn’t seem as big a deal.

Sometimes HPSers really resist the oxygen. I understand why. Not only is it this constant reminder of what is wrong with you; it’s also a big lifestyle adjustment. I’ve started calling it “life on the leash.” For now, I don’t seem to need oxygen when I’m sitting, and usually (but not always) when I’m walking casually around the house. I do, however, need it when I go up and down the stairs to do laundry, or take the trash out. When I walk the dog, it is a must.

When I don’t have the oxygen on, I suddenly feel a sense of freedom. Just walking across the room without dragging a tank or tubing seems liberating. It’s a false freedom, but there it is. It feels good to have the tubing off my face. As my oxygen needs increase, this little taste of my life before the leash will disappear too.

I was very lucky that I was able to get my oxygen on the same day it was prescribed. A delivery man arrived about 7:00 pm. We worked together to figure out how I was going to manage the equipment with my vision issues. I think he was a little panicked about it, but really, it was just like adapting a stove or washing machine.

After he left, I was all alone with the huge loud new machine, tanks and the nasal cannula. I fired up the oxygen concentrator for the first time, put a tank on it to fill, and plugged myself in. I couldn’t help but think about what this development meant as I put the nasal cannula around my ears and into my nose. Unless I get a transplant, or find a miracle drug, I’ll never be without this tubing again.

The first night with the machine I felt so angry. I don’t normally get angry about much, but that night I was furious. They had left me with 50 feet of oxygen tubing. I was supposed to stay attached to the concentrator while at home, and use the tanks for going out. The tanks only held an hour of air in one tank, and an hour and a half in the other tank. As my oxygen needs increased, I knew that time would lessen.

Funny thing is I don’t feel that sick. How could it be that I’m here? How could I be sick enough to be attached to this horrible machine now? How was I going to live life to its fullest while I still feel like it? The tanks aren’t too bad when you get them on your back, but they are heavy. If I’m having problems breathing, how am I supposed to lug around all of this heavy stuff?

Thankfully, I soon learned about pulse oxygen (no thanks to any help mind you). I learned an oxygen conserver that delivers pulse oxygen could be put on the tanks to make them last much longer. Catch was a respiratory therapist had to evaluate me for this, and they said they couldn’t send one for three weeks! Really? How was I going to do medical appointments if I needed to? Forget about my upcoming trip to San Diego.

I got on the phone with the oxygen company and my doc and explained why I needed this to happen ASAP. It wasn’t just the oxygen needs – it was combining the oxygen with the realities of being legally blind and not driving as well. A respiratory therapist arrived the very next day! Awesome!!!!!

I can’t say I’m thrilled about life on the leash, but I’m getting used to it.

I do feel a lot better with the oxygen. I have more energy. I’ve never walked my dog without being out of breath, and now I can (unless I’m pushing myself on purpose.)

The respiratory therapist told me I’d be able to feel when I needed the oxygen. Really? A week ago I had no idea I was getting into transplant territory or that I needed oxygen at all. Seems to me my judgment might be a bit off. My friend Carmen gave me an oximeter as a gift. She was worried I was getting light headed at the gym a year ago. It has proven to be so useful to learn when I need the oxygen, and when I don’t. I honestly can’t always tell by the way I’m feeling. This is part of the reality of dealing with chronic illness. You just get used to not feeling well. It’s normal to you, so you don’t always realize just how badly you feel until you start to feel better. So it has been with the oxygen. I didn’t even fully appreciate how out of breath I was getting until the oxygen and I was able to do more.

Here we are I guess – at the ever changing new normal.