Little emergencies can be big problems.

Living On Oxygen for Life


This was a bad moment at the doctor’s office today. The doctor recently started having an oxygen tank at her office because I told her it would be a good idea. You know, just in case. Well, today was that just in case moment when my tubing snapped off as K was switching my tanks.  We were all panicking until K remembered the recently acquired office oxygen tank (with cannula!) kept tucked away for emergencies. I had to hold my broken tubing onto my second full tank to try and get enough oxygen until they found another cannula. Thankfully, K moves fast and keeps a level head in a crisis. All I was in charge of was concentrating on breathing calmly until rescued. We have spare tubing in my van but that was in the parking lot 7 floors below. It would’ve taken too long to get it.

Life has a funky way of reminding me how fragile my body is but I can’t live in fear and never go anywhere. Lately, I’ve become a homebody because my breathing has gotten worse. I have to get myself out of the house more and I’m going I’m going to accept this challenge head on. Well, as soon as K fills my gas tank. I’ve decided that’s a “man’s job.” Honestly, I can’t handle the gas fumes. So, I have K fill my van for me.

What about you? Have you had some oxygen emergencies? Share your story in the comment section. Love y’all!

What’s an Oxygen Concentrator??

Living On Oxygen for Life

I am about to explain the basics of an oxygen concentrator for all of you who are confused about this machine. (click on the pictures to see a bigger view) First, let me mention that there are different types of machines or forms of oxygen. There is an oxygen concentrator (what I’m about to show you), there is compressed oxygen that comes in a metal cylinder, liquid oxygen which is pressurized and contained in a metal reservoir, and then there are battery powered oxygen concentrators which are mainly used for portable use. I hope with this list, I didn’t confuse you.

In the pictures below is a Respironics Oxygen Concentrator. It provides up to 5 Liters per Minute of oxygen to a patient. You can see that I do not use a white humidifier bottle with this machine. A humidifier bottle contains distilled water which the oxygen flows through a little tube and bubbles up through the water which hydrates the oxygen that you receive. However, I connect my oxygen tubing straight to the machine. It’s recommended to use the humidifier when using oxygen at a higher flow, such as what I do (6LPM).

An oxygen concentrator is an electrical machine that plugs into a electrical wall outlet. When you turn on the machine, it intakes room air through a filtered vent. It filters the room air through it’s sieve beds, separating everything from the oxygen; which is then flowed out to you through the oxygen tubing connected to the machine. All the other “air” is expelled through another vent usually located at the bottom of the machine. You can feel it. It’s the warm air coming out of the machine.

Respironics Oxygen Concentrator

Respironics Oxygen Concentrator

It’s VERY important to NOT block the vent that expels the air from the vent. The Oxygen Concentrator should be located in a central area of your home allowing you to reach everywhere you want to go. Also, do NOT enclose the machine in a small room like a bathroom or a bedroom. This machine needs air and ventilation to keep it cool and functioning properly.

The next important thing about an oxygen concentrator is about keeping the vents and filters (some have just one that needs to be changed) clean. As you can see from the pictures below, my vents are gross. But don’t worry, I cleaned them with a dry cotton sock. (The sock went straight into the washing machine!) You can change the filter if you know what you’re doing or have been taught by the DME (Durable Medical Equipment) company who provided the machine for your use. Some oxygen concentrators need to have their filters changed more often than others. Some older machines have more than one filter to change. My one filter is located behind the little panel in the upper right corner in the picture below. It’s REALLY important that you contact your DME company and ask them to come out and change the filter of your machine if you haven’t had it done within 6 months. Ask them how often it needs to be done on your particular machine.

IMPORTANT: Do NOT try to open your machine or try to fix it if it is having problems. Call your DME immediately.

Very dirty vents! Eww!!

Very dirty vents! Eww!!

Oxygen Tube Splitter

Oxygen Tube Splitter

As you may have noticed, my oxygen concentrator is sitting beside my liquid oxygen reservoirs. I use both the concentrator and liquid oxygen at the same time with a very handy device called a splitter. The splitter in the picture is made of brass but I also have an emergency backup splitter made from plastic. Remember, I always have a backup. When a person has to use oxygen 24/7 as I do and many of you do too, it is so important to have back ups of things like 50ft tubing, the nasal canula for your portable, tubing connectors, bipap supplies (mask, hose, head gear, filters, & memory card). You don’t want to be caught on a weekend or a vacation when something breaks and you need another part. Been there, done that… but no more! Hey, don’t forget that duct tape! Trust me… you’ll thank me later. haha!

I hope I’ve explained the basics of an oxygen concentrator in an easy-to-understand way. As always, you can email me at *hugs* I hope you are making your HAPPY JARS for 2015! Read about it here.

Life’s little emergencies…

Living On Oxygen for Life

For the past 3 1/2 months, I’ve been taking the new PH drug called Opsumit. The first month of taking this medicine, I did feel better, like I had more endurance. It was very much similar to the feeling I had the first month of taking Tracleer. Then as time went on with Opsumit, that endurance slowly went away and the increase of shortness of breath creeped in. I was like… what is going on???

About a month ago, instead of carrying the laundry basket filled with clothes to my bedroom on my own, I was starting to ask K to carry it for me. I was getting pretty short of breath from carrying a laundry basket filled with clothes??? Yes I was. And it was getting worse. When I was helping K clean the house for my sister’s arrival, and a while doing a number of things that week, I was nearly hyperventilating and my heart was racing when I exerted myself . Things like swiffing the wood floor or unloading the dishwasher was wiping me out.

K was really worried about this. And for the first time, he took action for me. He picked up the ball and ran with it becoming my champion. From his job, he called my PH doctor and told them what was happening to me. Their suggestion was to bring me into the Emergency Room because that’s the best way for me to get all the tests I needed to find out what the problem was.

Now, you know I’m never thrilled with having to go to the hospital but the next morning when K took me, I couldn’t even talk without becoming short of breath. It was progressing. If you don’t follow me on Facebook or read the little Facebook column on my blog here, you don’t know my hospital adventure’s details. So, I’ll share them here for you to read. You know, copy and paste style! 😉 (BTW: I took my own bipap machine up to the ER/Hospital knowing that it takes a long while for the Respiratory to get the order for one and to bring it to me. So, when I take my own, I can use it immediately even in the ER.

August 5th Well, poop. I’ve been admitted into the hospital. I am breathless while talking this morning. They already took X-rays and hopefully they’ll figure out what’s going on.

August 5th (a little later) Good grief! So much traffic in my room here at the Chateau de Hospital! Ok here’s what I know which really isn’t much more than what I already knew. After getting 2 sets of chest X-rays (because my doctor wanted her own set, apparently), multiple lab tests, and an Echocardiogram… No conclusions have been drawn on any kind of diagnosis. I have been given plenty of diuretics (without my usual potassium supplements, I might add), an antibiotic pill (just in case of an infection is happening) and a triple dose of albuterol (my least favorite medicine!) through a nebulizer down in the the ER. I did, however, go on a nice walk with K up & down the hall before he went home. I did ok but I was a bit breathless when I got back. I can’t wait to see what they have planned for tomorrow’s adventure.

August 5th (later that night) Well, the Saga continues …and I thought I was going to be able to read a little and then lights out. Oh but we have to flush the IV and that lead to the dead IV because it wouldn’t flush the saline into the vein. That means I had to get a new IV. I thought.. Ok all is well. I can just read a little and then fall asleep. *knock on the door* “I’m here to draw labs.” This at 10:30 at night. So I’m thinking… Of course you are!! Come on in! It turns out I’m to be stuck twice, once in each arm for cultures. I soldier through it, then pick up my iPad which has my Kindle app and *knock knock* My nurse walks in and wants to check my vitals and I casually mention that someone was in here earlier wanting to check my blood sugar. (I’m not even diabetic!) Yes I told that person to check my records. Sure enough that person had the wrong orders. Wow! And this is just the first day of this grand adventure. My arms are pin cushions and my sister asks me why I don’t ask for a central line? Then she explains they can put in central lines or pic line for blood draws and give IV meds if you’re going to be in the hospital a while and will need labs done often. I’ve been told I’ll be having more labs done tomorrow morning. Ugh!

August 7th (early that morning) Update! I’m still here in the hospital. *sigh* The first night was awful because I only got an 1 1/2 hours of sleep and I was lucky to get that. I hate the feeling of being tired but not sleepy. My room was a really popular destination for the hospital staff yesterday from the OT lady, the PT man, a transport lady to wheel me down for a VQ scan in Nuclear Medicine, all the nurses, vitals tech, respiratory man and lady to give me my Symbicort treatments, lab people, the doctors (3 sets), and finally the people who brought the food (the food is horrible but I can order it like room service anytime from 7a-7p like a hotel) unfortunately I’m on a low sodium diet which leaves off all the good food. I made the mistake of ordering meatloaf the first night which normally I love but this was like faux meat or something like that. Yuck! My sister and my niece came to the hospital which was the highlight of this whole adventurous experience. My niece asked about my IV. I told her that it goes inside by body to give me medicine. She sounded amazed when she said, “It goes inside your body?” She is such a doll. Basically the doctors aren’t sure what’s going on but they are trying to eliminate things by doing lots of labs and some tests. I hope, hope to get out of here today. I’ve been told that I have to have at heart cath via outpatient. Boo! No fun! I’ve been walking up and down the hall with K 3 times a day but it still tires me and makes me short of breath. I know I’ll get there but it will be a really slow bounce back. I only hope I can bounce back to how well I was before all this mess started. *fingers crossed and toes and eyes too!*

Thank you for all your prayers and thoughts. It has help me tremendously. *hugs* to you all!

August 7th (around noon) Update coming soon! Just know that I’m Free!!!!! Even though I’ve been discharged, it doesn’t mean I’m done with the doctor visits. *groan*

Let’s see how many doctor appointments I can squeeze in for next month!?!? I feel a challenge coming on! haha! Who’s with me???

At least I will see my sister and niece this whole evening before they go home tomorrow. Yea me!

August 7th (really late last night) My bed is the most glorious bed ever! I sure missed you, bed. *sigh* Goodnight everyone!

Basically, they only found out that I’m currently Hyperthyroid. So, they started me with some medicine for that. I switched back to Tracleer (my choice). It’s the only thing that I’ve changed in the last 3 1/2 months. I feel like I can get a deep breath now thankfully but they truly couldn’t give me a definite answer as to what was causing my problem. That’s very frustrating for K and me. I’ll keep you posted. Lots of prayers went out for my recovery and that was so appreciated! It worked and I’m home! YEA! Love to you all. Stay well and treat your lungs like they are the most valuable thing you own.