With the new year… it brings changes.

Living On Oxygen for Life

And now for something new… drama! I realized this past weekend that I had a letter on my refrigerator which I’d slapped under a magnet back in October 2017. Of course, you all know me by now to think… “oh dear, that can’t be good!” If you’re anything like me, you stick important things on the fridge, right? You know, things you DO NOT want to forget. Especially if it’s from the health insurance company.

This important document I have stuck on my refrigerator informs me of a change for the new year. Don’t worry… I was thinking the same thing.. “but these people never give THAT much of an advanced warning.” Am I wrong? Of course not! So I put it on my refrigerator so I wouldn’t forget.

Well, I forgot all about it because my brain just doesn’t retain all the things that have happened since October. Life was happenin’ around K and me. How was I supposed to remember that my Specialty medicine for my Pulmonary Hypertension was going to be dispensed through a different pharmacy? This is the medicine that I have to get labs done every month to even get a refill of this stuff.

I can only say that it’s truly inconvenient and very stressful for a patient, who must take this life-sustaining medication, to have to make this transition at all. It hasn’t been a smooth transition to the new pharmacy because I never have an available refill of this medicine due to needing lab work done every month prior to calling…then wait as I listen to at least 5 minutes of elevator/on hold music, for a refill.

Now I’m stuck within the slow grinding process of the new paperwork and out of medicine. They are supposed to call me when the pharmacy is finished “processing” my account to set up a delivery date. Meanwhile, I’m at home with no one other than myself to blame and feeling like I am slowly suffocating. I’m very short of breath and it’s a constant reminder to never let this happen again.

It’s pretty hard to juggle everything that has been going on in mine and K’s life lately and to have this slip from my memory makes everything seem like a crisis to handle right now. So, when my husband asks me to handle something for him, I start feeling a little buried right now.

For sanity’s sake, I made myself step back to calm down. I’m making a list to prioritize what “crisis” I should handle first because when I start feeling buried, everything feels like a crisis. From there, all of this mess will start to look clearer. I hope! haha!


A close call…

Living On Oxygen for Life

Even with all the planning in the world that K and I do for our vacations and even our outings around town, there is something that might go wrong. The trick is to have a plan or at least a calm head in the midst of what could possibly turn into a crisis. Let me tell you one of mine.

*cue: dream sequence*

It was the summer of 1998 and K and I had driven to New Jersey to visit friends. These friends and a few of their friends all decided to pile into a van (not mine) with my 75lb liquid oxygen reservoir in the very back. I guess you could call it a trunk if vans have trunks. We drove into the big city (aka: Manhattan) and ended up eating dinner at the Jekyll and Hyde restaurant. That place sure is strange but the food was good. After dinner and driving around a bit, we decided to go back to our friend’s house in New Jersey.

Well, something must have happened because there was a massive amount of traffic and cops out directing the flow of cars. And it was at this precise time that I realized my portable was out of oxygen. We couldn’t exactly get out of traffic and unload the reservoir to refill my portable. The van we were in didn’t have the clearance room to place the portable atop the reservoir like mine did. The traffic was that bad. So, since my reservoir had a spicket on it with a green tree to attach a oxygen canula, I decided to just breathe connected straight from the reservoir.

Unfortunately, the reservoir had a leak. Guess where the leak was.. Yep, in the place where the spicket was attached to the reservoir so that when the oxygen was turned on, out leaked the oxygen. I started to get really worried. I told K what was wrong and he tried to fix it but to be able to tighten the spicket nut, he had to be able to remove the plastic cover (I think!). You couldn’t do that inside the van and we didn’t even have a wrench or pliers. The guys in the car were starting to notice that something was wrong and they started to panic. In fact, one of them actually got out of the van and approached one of the cops to see if they could help.

By this time, I was not only panicking and struggling to breathe, I was so embarrassed. Luckily, K put on his hero cape and saved the day… er… night. We noticed that if he held the spicket a very specific way and not moved, I could get enough oxygen (barely) through the canula to get us back to New Jersey which was almost an hour drive. I just had to sit there, not talk and concentrate on being calm. Now that was a close call!

The next morning, we called Lincare to come out to fix and refill my liquid oxygen reservoirs so that it didn’t happen again.

Don’t let this scare you from getting out though. Just have a plan of what you would do or who you would call if you need help in a hurry. Don’t forget to follow my blog!