Entering DEFCON 4 – when someone is sick..

Living On Oxygen for Life

Hello everyone! I bet you’ve been wondering what I’ve been doing lately. Right? Well, it’s official. I’m placing our house on DEFCON 4 alert. K is sick with a sinus infection and it seems like he’s getting worse instead of better. You should hear his cough. It’s awful. Hence, the reason to move to DEFCON 4.

Wondering what DEFCON 4 means? The list below describes my self-made DEFCON alert system for our household. Enjoy!

  • DEFCON 1: Happy and HEALTHY
  • DEFCON 2: If one of us thinks we are getting sick, no hugs or kisses from each other. Definitely not sharing drinks or utinsels.
  • DEFCON 3: This one is harsher. It includes DEFCON 2 actions. Plus, I grab a tub of Lysol wipes and wipe down all door knobs, remote controls, cellphones and computer keyboards. I monitor K’s condition but I do not hover over him.
  • DEFCON 4: The doctor is called. Not just for him but for both of us. For obvious reasons since K is the one that’s sick, we either get an appointment or see if the doctor will call in antibiotics. Then I tell him the possibility of me getting sick from him. I just let him know that I’ve been exposed to something that K is currently fighting. ALL dishes that K touches goes immediately into the dishwasher. I never let him drink out of the same glass twice. So no refills in the same glass. Call me paranoid but I really think this helps. I keep a supply of Gatorade in the fridge and leave a bottle of it on his bedside table. He’ll usually drink it when I’m not around.
  • DEFCON 5: This is the one I generally have to enlist K’s mom to help me. K doesn’t really like going to the doctor let alone have to go to the hospital. There has only been one time that I’ve had to take him to the hospital. (Thank you Jesus!) but he’s had to go to a 24-hour emergency clinic once before when he was sick. He’s a pretty stubborn guy! Bed sheets are changed immediately unless I can’t get him out of bed. If that’s the case, the pillowcase gets changed everyday.

So this is my basic DEFCON alert system guideline. Obviously DEFCON 1 is Happy and Healthy and that’s where we always want to be! Now, I’m about to go to the grocery store to stock up on more sinus medicine and gatorade for K. We’ve had to put off the grocery shopping for days and days. Now, I’m going to go alone because K just isn’t up to helping me. It’s ok because he knows I’ll just get the stuff that we really, really need and then he will go with me the next time when he’s feeling better to get the heavy stuff like kitty litter.

I hope all is well with you! *hugs* Don’t forget to follow my blog!

[April 2015]

Better, faster, lasting longer… your portable oxygen system. Don’t we deserve it?

Living On Oxygen for Life

I recently received this comment below about an issue that many… I mean many oxygen users feeling strongly about. Only an oxygen user who uses portable oxygen knows exactly how difficult it is to be active while lugging any form of portable oxygen.

What if there was a way to make these portables lighter and longer lasting? Why isn’t there already any available? Sure, there are the battery powered oxygen concentrators but those batteries don’t last very long and they take a while to recharge. Do we really want to carry around multiple bulky batteries when a battery can be made lighter, smaller and last longer?

What can we, as an oxygen using community, do to further the battery technology and portable systems to become more beneficial for us so that we can lead a more active lifestyle?

Bill wrote this in hopes that we could raise awareness for this much-needed help from the tech world.

“I’m suffering from health issues and I feel like there is some uniquely innovative person who could help. I don’t want money and I really do not want sympathy. I want help solving a special problem….oxygen.

Three years ago I had a health event and since then have required a modest flow of oxygen. Before this I was largely unaware of what it meant to carry a portable oxygen system around. Suddenly, through necessity, I personally became aware of the challenges I faced using these systems. I, like many others, need to carry some form of oxygen with me every moment of every day.

What baffles me the most is that at a time when you’re feeling weaker because of your oxygen deficiency, you’re now saddled with carrying a significant extra weight. There is an array of systems available, but they are all heavy and clumsy. It makes getting around for everyday tasks even harder. I was also surprised at the large number of people using these systems as well as the many that cannot afford help and just suffer silently.

Excessively heavy, and inconsistently reliable power supplies are only a few of the major problems. When combined with clumsy delivery systems it makes for a real challenge.

I have admired the way some have attack problems and find new solutions. I would like someone to take the ball and find a solution to this problem. I know that it would be a great benefit to many people and you’d be giving life and freedom to those of us that are suffering. We need innovation in attacking this problem.

I believe with today’s technology there is no reason the needs for this fast growth health care cannot be improved. As one who will require oxygen for the rest of my life, I ask a small favor. Please take a look at this issue and help us if you can.”

Many people are still using the archaic e-cylinder metal tanks for their portable oxygen system. We, as the oxygen users who are already challenged with our illness, want our independence. Struggling with bulky, heavy portable equipment that may only give us only hours of oxygen does not promote a quality life. It’s frustrating to have to rely on oxygen equipment that could be so much better.

If you know of someone who you can pass this message on to and help solve this problem, you would be helping many people obtain a quality of life they deserve. This is achievable.

Pin this, Facebook this, and Twitter this post. Let’s get this out there.

I am opening this post up for your comments, suggestions, ideas, and ways that we can raise awareness for the need of better portable oxygen delivery systems and lightweight, longer-lasting batteries for portable oxygen. If people can create a computer in a garage, why can’t someone create a better battery for a better oxygen delivery system? Let’s do this for ourselves and better our lives.

A doctor appointment…

Living On O2 for Life

On Wednesday, this week, I had a doctor appointment. My lung volume was measured and I was so thrilled when I saw the results. My total lung volume went from last year’s 15% to this year’s result of 22%. Even though it’s a better percentage, it’s still a very low volume compared to someone with the same height and age. To put it all into perspective, imagine that your lungs have a total lung capacity of one and a half cans of soda. That’s about the size of both of my lungs combined. Yet, I’m still alive thanks to the use of oxygen, medication and machinery. Yea technology!

I told the doctor that I’m having to turn up my oxygen from 5LPM to 5 1/2 to 6LPM when I do house chores because of increased shortness of breath. My doctor said the shortness of breath can be from two reasons in my case. One is mechanical and the other reason is from reduced Oxygen Saturation during the times of physical activity.

The mechanical reason is due to scoliosis and the deformation of my ribcage. My ribs keep my lungs from expanding fully. Any time a person is active, their body demands more oxygen to be able to do what it wants done. But in my case, my lungs can’t work harder to keep up with the demands of oxygen because they are so restricted. And neither can my heart. So, my doctor ok’d turning up my oxygen but only during the daytime hours. Not at night. Too much oxygen can trick the brain and cause a body to retain too much CO2 (carbon dioxide) which could slow respiration and possibly stop the breathing.

It is very important to use oxygen at the amount prescribed by the doctor. If you continue to have trouble with shortness of breath while using oxygen at the prescribed amount, it’s important to talk this over with your doctor. He may want to run some extra tests. My doctor is having me do an at-home oximetry test while I sleep to ensure that I’m getting enough oxygen at night. I’ll use my oxygen at 5LPM (my normal prescribed setting) with my BiPap machine and test while I sleep in my own bed. Easy, huh? I just don’t like having to sleep with a little glowing light taped to my finger. My doctor also recommended an Oximizer. An Oximizer has a built in reservoir to store continuous-flow oxygen that would normally be wasted from a nasal cannula as a person breathes out. The saved oxygen would be inhaled on each new breath; giving the person more of the oxygen. I would only need to use it during the day while I’m home. I will post a picture of this thing when I get it. I’m intrigued yet slightly skeptical about it. I would be using it to increase oxygen consumption rather than to “save” on oxygen.

I also have to replace the pulse oximeter that my dog chewed up. I know.. I know.. silly dog. I don’t even know how he got ahold of it but he sure made a mess out of it. I recommend for those on oxygen to get a pulse oximeter so that you can monitor your oxygen saturation rate. You can measure it at various times in a day. It could give you an idea of what things that you do make your oxygen saturation drop if at all. You can get a pulse oximeter at pharmacies, Wal-mart, and even at eBay or Amazon.com.

Normal oxygen saturation values are 97% to 99% in the healthy individual. An oxygen saturation value of 95% is clinically accepted in a patient with a normal hemoglobin level. The Mayo Clinic states that oxygen blood levels below 90 are considered low. And as always, take care of yourself. Wash your hands often to help fight spreading or catching the flu.

Be your own health advocate!

Living on Oxygen for Life

We all hope that we don’t have to be hospitalized but sometimes it’s necessary. The best thing to do when becoming hospitalized is be prepared. Know that you are your own best advocate for your care. What that means is:

  • Listen carefully to what the doctor is telling you about your condition.
  • Ask LOTS of questions (especially if you are not sure what the doctor is talking about).
  • Make copies of documents of: Test results. Medications taken in the hospital. Plans of care in the hospital. Hospital release orders.
  • Know that there are only so many nurses who have a lot of patients to care for but please let them know if you need help. It’s important that you are getting quality care. If you don’t feel that you are, discuss your concerns immediately with your doctor.

If you can’t be your own advocate, ask someone that you trust and who knows your health problems. When you are admitted to the hospital or about to receive treatment or a doctor prescribed procedure, the hospital should ask you to fill out a form to add any names who YOU authorize to receive access to your condition. That means, if those people you add to the list call to the hospital or come to your hospital room inquiring about your condition, the staff can give those people your status. There are other benefits to listing these trusted family or friends to this list. If you are too tired or too ill to talk with the doctor, these people that you’ve listed can talk with the doctor or nurses. However, the patient is the only one who can request pain medicine or a sleeping pill (if it is on the patient’s chart ordered by the attending physician).

Many of the things listed above also pertain to even doctor appointment visits. Write notes, list the questions that you and/or family have. It’s so important that you take charge of your health. Living on oxygen can be scary but it doesn’t have to be if you are informed and in charge of your health. If you are a person (like me!) who doesn’t remember everything the doctor says, take someone with you. I take my  husband. For one thing, his memory is like an elephant’s and another thing, I need him to wheel me around in a wheelchair for the longer doctor appointments. I’ve finally admitted to myself that I need the wheelchair and you know what??? I last SOOOO much longer for using it. We’re able to get out after the doctor appointment and do some fun things. We go for lunch as a reward! I’m big about the Reward System. Do something you don’t want to do, like a doctor appointment or a Heart Catherization (yuck!) and get rewarded with some activity that’s fun or even treat myself to ice cream! YUM!

I know life can be difficult and adding some rewards to my life for doing some of the difficult things that I normally do NOT want to do, makes everything a little bit brighter. Don’t you think?? Who else uses the Reward System?? Let me know what you do???