I use a splitter to connect an oxygen concentrator and a 100 lb liquid oxygen reservoir together to provide me with 6 LPM of oxygen to conserve my liquid oxygen. I have my refill days for my liquid oxygen on Wednesdays. So, on the 3rd of June I had my tanks refilled. For some reason, since then, I had been feeling sluggish, tired, worn down more than usual. I thought maybe Mary, my cat, may have chewed kitty holes in my tubing again. So, I checked my tubing multiple times and there were no holes. Then I checked the green Christmas tree that connects my tubing to the reservoir tank to see if it was screwed on tightly… it was. Figures, right? I mean, it couldn’t have been THAT easy!
Now, I know it’s been raining like a monsoon here in Texas and it has taken its toll on my breathing but it has stopped raining.. *YAY!* and that couldn’t be the reason since I’ve been staying indoor as much as I’ve needed to be. Was my breathing getting worse? I was really worrying and so was K. I was using my inhaler, taking my diuretics as prescribed but I still felt puffy and so short of breath. It just wasn’t normal for me. I certainly didn’t want to call my PH doctor.
As my last ditch effort, and almost by fluke of chance while I was filling my portable with liquid oxygen to go to a doctor appointment, I decided to switch the reservoirs (I have two 100 lb tanks) to join with my concentrator. What could hurt, right? When I pulled my tubing off my reservoir to switch them around, I noticed something weird. The one I was about to switch out wasn’t putting out oxygen even though it was almost full. So what that means was that I was only using half of the oxygen I needed for 3 days. Once I connected the other reservoir to the concentrator, I started to breathe much better and now I feel like myself again. I understand now why my sleep, short of breath, and energy level was so bad.
From now on, I’m going to start checking the flow from both tanks when I get my reservoirs refilled. Equipment can fail and I will be reporting this come Monday so that I can get a replacement.
In other news, I’ve been crocheting like crazy! I have a box nearly ready to send out to a preteen girl who is awaiting a double lung transplant. I’m including a secret gift that I can’t tell you what it is until after she receives it. I don’t want to spoil the surprise. I have another box about to be sent out to Michelle & then one to Sara. After that, I’ll be trying to finish up my daisy afghan to go to the next recipient, Vincent. I couldn’t do this without the generous donations going to my GoFundMe.com/helpneedahug. Read how you can receive a Need a Hug afghan if you have breathing problems and need a hug.
Here I was thinking to myself as I walked out into the public for the first time wearing my oxygen. I was scared. I was a nervous wreck and I thought my life of carefree fun was over.
I knew all the right things to tell myself. “Who cares what other people think? You don’t know these people and they don’t know you. So why do you care what they think about you wearing oxygen? So, what. Right?” But I did care. I’m human.
So, what did I do? I jumped right out there with both feet. My best friend and I went out. She told me that if she caught anyone staring at me that she would beat them up. She was so serious that it made me laugh. She decided that she was going to be my champion. (no actual beatings ocurred!!)
People do stare. It’s human nature to be curious. When I catch them staring, I just smile at them and it throws them off. I guess people don’t expect me to be so… I don’t know.. Friendly? Outgoing? or Willing to talk about “What’s wrong with me.” However, a smile works every time.
You see, there’s nothing wrong with needing to use oxygen. It’s just your body telling you that it needs a little extra help. With that help of oxygen, you might just find that you can do more, be more active and live longer.
I’m sure ya’ll are wondering WHY I have to use oxygen at such a young age. Well, first let me say, when I was 17 years old, I started using oxygen at night only at 1 liter/minute. This was because I would have blackouts throughout the daytime and fall asleep during the classes of my senior year of schooling. I was always tired. I woke up every morning with a severe headache that went away after being up out of bed for about 15 minutes. Though, running to the bathroom having to dry heave every morning sucked! No one, at this time, knew why this was happening.
I’ll start at the beginning of my life and tell you what health problems I was born with to help you better understand why my lungs & heart need the extra help of oxygen. Here’s the majority of my problems:
Born with 2 holes in my heart (Atrial Septal Defect -ASD, Ventricular Septal Defect – VSD)
Scoliosis – severe, but have ONE Harrington Rod. The scoliosis deformed my rib cage to the point that leaves less room for my lungs to expand when I breathe. I wore a Milwaukee Back Brace for 11 yrs as a toddler up to my teenage years.
Born with only one kidney
Born with no left ovary and no uterus (so, no kids)
Lung volume is 24% of a person my age, weight, & gender and declining…
With all of this, I also inherited my mother’s migraines which I get every month and started when I was aproximately 17/18 years old. Since I have serious health problems, I can’t take heavy pain medicine or imitrex/maxalt. Now I use oxygen at 5 liters/minute. It’s a large amount, especially for someone who is still able to get out and about. I try to lead as close to normal of a life as I can. I think that’s what helps keep me alive so far.
I know this all may sound dreadful but I’ve survived it. So, ask your questions. I’ve even been stopped by people everywhere to ask about what kind of oxygen I use or even the tacky question: “What’s wrong with you?” I always cringe internally when I’m asked that last one but I always answer. There are so many people who have friends or loved ones who are using or about to start using oxygen and they need help with information on how to get what I have. So, post your questions! Just please be patient because I review every post before they appear on my blog to help prevent spam.
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Hello, my name is Christine. I use oxygen 24/7 and I am now 48 years old. I didn’t always have to use oxygen. It all began when I was 17 years old. It was a monumental change in my life. Since I was just a teenager at the time, it hit me hard. I’m hoping with this blog that people who also use oxygen can see that life isn’t over just because you need oxygen. I think the hardest part for me was accepting that I’ll never live without it again. Once I jumped over that hurdle, life began to change. For the good.
So with this blog… and for all those who are interested in knowing how I live with oxygen needs, I’ll post what I know in hopes that it will help others. Spouses & families too! I am married and what I’ve gone through since I was 19 years old, he’s gone through too with me.
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