Most of the trouble re-appeared when I started noticing my breathing change over the winter. Prior to that I had enjoyed a 5 year honeymoon from beng pummeled by TSC & LAM because of a drug called Rapamune. I was at less than 50 percent of my lung function when I started, but I had felt the best I had in years. The drug stopped the non-stop roller coaster of interventions I had from 2004-2009. Had only one brief one in 2010 to correct a problem the drug had not stopped before.
Yet, this past winter around February, I noticed my breathing had changed again. I thought to myself that doing a customer service job at a call center for a few years had made me more sedentary. As a result I had put on more weight. I figured if I dropped about 10 pounds or so that would take care of it. In the past, that had been enough to level things off. I dropped 12, but I was still having issues.
So I knew it was time for a check-up. I had asked my pulmonologist to give me a pulmonary function test (PFT) & 6 minute walk test, since it had been a long time since I had a six minute walk, but about a year since my last function test. Because I was feeling so good, I stopped asking about my numbers specifically. Primarily because I wasn’t going to get bent out of shape crying over a few points here or there when I was enjoying not having to obsess over it like I had to in the past. I knew in my gut that was going to change soon.
Well, I failed miserably. For those who don’t have lung issues, put it this way. A 6 minute walk measures how well your oxygen saturations are (which means how well the oxygen is moving to your body & circulating to other organs). In a nutshell, most people pass this no problem with a few points dropping here or there but never come close or fall below 90 in that period. I did it big. I started out walking the normal pace I had always walked NY at & the pace I had typically started exercising at. I went three minutes but then dropped from 91 to 81. The remaining 3 minutes sucked too, because my lungs as crappy as they have been always typically rebounded by the end. They only rebounded to 85. Anything sustained below 88 qualifies somebody for oxygen, because the bottom line saturation level that’s safe where things are circulating well & you’re not doing damage to organs because of insufficiencies is 90 or above. Typically even at 92 most places will put people on a bit of oxygen just in case their meter is off a point or two. All in all, typically the body does use more oxygen during exercise so people will always dip to some degree. The key is though picking up on when it’s at a dangerous level.
I freaked out the respiratory tech of course. I was expecting this, but not to this degree. I thought I’d have to put up a fight to be at 88. In my mind, I wondered just how long this had been happening without me realizing it.
After I got the oxygen (which was an ordeal in itself) it was hard too, because a lot of times I had to wear a finger oximeter & test everything. The more I tested, the more I found I was dropping with other things & hadn’t realized it before. Moreover, I didn’t feel any different until I was at 85 or 81 where I’d spike a headache. Way too low, but between 95-85 I wouldn’t know the difference outwardly & that freaked me out.
Based on this change, I knew it was time to check-in with the transplant team. Again I figured, I don’t feel sick, there’s nothing else to worry about but I should tell them about this. I was a bit taken aback when I was told I needed a transplant evaluation. Certainly I knew after I saw my ugly numbers on the most recent PFT & after I reviewed the last few over the past 2 years (not realizing I had been at about 35 percent lung function for at least 2 some odd years and not known, & now was at around 33) certainly qualified me for one, but I figured they’d just tell me to check back in 6 months. But, they didn’t.
I started out needing mainly 2 liters here or there, but after an ER visit a few weeks back need it pretty consistently now pretty much full-time. I do this though because I notice I feel better & breathe better with it than struggling at 92 or 94 & feeling constricted. It’s hard because I know this means my body has lost its ability to adapt.
Luckily, while I was waiting for my portable concentrator to come I figured out pretty quickly which bottles I needed to use & what settings on the conserver to set for what activities. When I started having to take it in on humid days to my job, I took a bigger tank so I didn’t have to switch it out until the end of the day. But I found that whether I was using m6s or m9s both fit very well in a camelbak hiking/hydration pack (removing the bladder) with a little bubble wrap for cushion. This allowed me to be more hands-free & made exercise easier. Even just walking around it was comfortable & lightweight. That was the first hack & I have to say, I didn’t come up with it on my own. But I’m glad I did hear about it from some other ladies with LAM. If I used the Luxe, which is lady’s version of the mule, I could carry two tanks at the same time pretty easily, which worked great for vacations or weekend volunteer walks. If I just used the single, then believe it or not, I used a mini-mule which was a kid’s version. It was a tighter fit but it worked. It was very easy to switch out tanks on the kid’s pack since it was open at the top & didn’t have a zipper, I’d just slide the tanks in or out.
Plus these didn’t look medical — they were fashionable. More coordinated people could use the loops where they string the bladder through for the cannula. I tried that but found it would get kinked or twisted up on me more often than not. I also hated the cross-body bag that my oxygen supplier gave me. This was so much lighter & easier. I found they also came with a bunch of useful pockets that helped carry extra tubing, cylinder keys (to open tanks), & even a lot of times my wallet, car keys, & a few other essentials.
I received a great many compliments from my local friends & improv performers on my innovative use of the bags. Which pleasantly surprised me. I felt awkward at first carrying it around, especially places even when I first would just have to have it on me as a precaution, but it lessened when I saw people ask me where I got the cool pack for it. The echoes of “a-ha’s” & “wow, what a great idea” helped cut down on the weirdness factor for me. Plus it was so much easier & handier than moving a concentrator around when I was trying to do things around the house like laundry or cleaning. I just zipped around with it, changing out tanks as I needed to.
Part of me wondered why I was so scared of needing to use oxygen in the first place. I just felt so much better when I use it.
So there you go. Whether you’re 26, 38, or 83 – you too can look fashionable with bottles of oxygen if you know how to go about it.