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.
Some of you know that I started on Tyvaso on Friday. A nurse showed up at my house, went through the paper work, the instructions on how to assemble and use the inhalers (there’s 2 of them to be rotated every other day). She stayed about an hour to make sure I did well on my first of 4 doses for the day.. everyday… for as long as I have to take this medicine. I’m to wake up in the morning, prepare the inhaler with distilled water and the Tyvaso medicine for the use of the whole day. Then, I do my first treatment. But on Friday, after the nurse left, my reactions to the medicine started to kick in. First it was a little sore throat and then within about 30 minutes after the treatment, from the back of my throat & down my esophagus felt like so raw that it hurt to inhale. That was just the beginning. I was like.. what have I gotten myself into??
I crawled into bed and swore I was not going to cry. My husband, K, wasn’t home yet. I so needed him. He’s my rock but I was going to be strong in the face of this pain. Right? So, the puppy hopped up on the bed and kept me company. When K got home, he walked into the bedroom like he was walking on eggshells. “How’d it go?” He asked gently. He REALLY didn’t need to ask. He just knows these things. I went into the kitchen with him and watched him make his lunch. I sit at the table still holding strong to my “I am NOT going to cry.” But it just came… I was so mad.. so very very mad. He asked me why I was mad. At first I thought surely he’s not being obtuse, right? Instead of getting upset at his question, I realized that he was just trying to get me to talk about how I was feeling. So I told him that I was mad because I didn’t understand why I was taking a medicine that made me feel so badly. Why do I have to feel bad before I feel better? I was pretty optimistic about this medicine before I started it. Don’t get me wrong. I haven’t given up but being in pain like this sucks bad.
My husband has been totally wonderful this weekend. After each treatment for about 3 hours, I get short of breath and breathing hurts. When I get up to do anything, I have to do it slowly because of the breathing problem and the pain. I just don’t have strength to do what I was able to do before the medicine. I’ve been on it 3 days now. Is this normal? I’ll be calling the doctor tomorrow. I’m only on the starting dose right now. I am suppose to raise the amount of inhalations next week. UGH!
The following steps for using an inhaler is the technique for which I apply when I need to use one. I’ve had many compliments from doctors while they watch me use an inhaler. Now, I want to share with you how I use one.
Remove the actual metal cylinder that contains the medicine and make sure the plastic device is clean. If it’s not, run it under hot water and then dry it thoroughly.
Place the metal medicine cylinder back into the plastic device and shake vigorously for a few seconds.
Place your mouth around the mouth-piece completely, making sure there it is air tight.
Tilt head back slightly and breathe all air completely out and hold your breath a couple of seconds.
As you push the canister down within the plastic device, slowly inhale taking in the medicine straight into your lungs. Be careful not to get your tounge in the way.
Hold your breath for the next few seconds to allow enough time for the medicine to enter the blood stream.
Slowly exhale at a steady rate, hold your breath for a few seconds and then exhale.
If you require a two puff dose from your inhaler, wait for a minute before repeating process once more.
If you have problems using the plastic device directly, you can use what is called a SPACER which is a 6 inch plastic tube that is fitted over the mouth piece of the plasitic device. You would then place your mouth around the end and then press down on the canister, allowing the medication to flow into the spacer tube. Then you would inhale the medicine from there afterwards. This is usually beneficial for those who have weak lungs or for children.