Life on Oxygen

Hello, my name is Christine. I use oxygen 24/7 and I’m 44 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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Reality…

Living On Oxygen for Life

I’m not invisible. Though, I like to think I am… *grin* I have weaknesses and I cry. I have bad days that make me feel like I’m dying and I struggle to find the one thing that will show me the goodness of life. A lot of the times it is the memories of fun things I’ve done with my sisters, family or with K. Other times, it is the comments or emails that I receive through this blog or my Facebook page. I take a lot of pictures and turn them into photo books for this reason too.

While in the hospital, earlier this month, my younger sister called me. She was surprised that I was laughing and cheerful and she asked me how I could be that way. I told her that it’s better to laugh about it than to cry. She asked me if I was scared and I said laughing, “Heck yeah I’m scared.”

Even though I have all these medical problems that make me feel bad (a lot!), I don’t want to leave with them a memory of me crying. I’d rather have them think of me as a happy person. Does that make sense to y’all? That doesn’t mean that I never break down and cry. There is only so much stress, bad news, pain, and struggling to breathe I can handle.

It’s ok to cry. It doesn’t mean that you feel sorry for yourself as long as you don’t wallow in it. To me, it’s like a reset button or a relief valve on the mounting stress. So, am I always the happy-go-lucky gal you see? No, because life is hard and filled with challenges. Filled with tests of strength. I’m up for the challenge. It’s just sometimes it gets to be too much.

This month has been exceptionally challenging. Thank you all for being there for me. *hugs*

Random Picture Day # 11

Living On Oxygen for Life

Almost every year K takes me on a vacation for my birthday and our anniversary. It’s really a big thing with us. We generally pick somewhere that has a beach. It’s just so relaxing and I love watching K playing in the ocean or the gulf even though it scares me half to death because he wanders out so far. Hey! There’s sharks out there!

In this picture, K devised a way for me to not get too much sun. I get sun poisoning pretty badly because of my heart medicine. I love sitting under the umbrella watching K play and then when I’m ready, filled with energy, I wade out into the water. I have my portable oxygen tank in a plastic bag, attached to the chair. Sometimes, K will dig a hole in the sand and drop the tank that’s in the bag in the hole. He’s my personal MacGyver! I use my 50ft oxygen tubing so that I can reach from my chair out to the water. All I have to do is watch out for other people on the beach if it’s crowded. Another idea I’ve thought of doing with the tubing but haven’t tried it yet is to cover the tubing with sand. Then people can walk on it. K tries to take me out in the early morning or late evening when the temperature isn’t too hot. I last longer at those times.

Do what you can to experience life. This year we aren’t going on vacation because we focused on some home rehab. But there is always next year, right?? =o)

How to play on the beach with oxygen.

How to play on the beach with oxygen.

A parent’s love… part 1

Living On Oxygen for Life

I’ve often wondered what my parents went through while raising me and dealing with my health problems. I had a challenging, but happy, childhood… but how difficult was it for them? So, I asked one of my parents what it was like. I grew up during the first 8 years of my life with my biological father. After my parents divorced, my step-father came into my life within the same year. Life was so different. I became a very stubborn and bullheaded child. haha! My step-father, who I look to as a father-figure even though he is no longer married to my mother, stepped in and took charge of my health. For that, I will always be grateful.

So, I asked him a series of questions in an interview style in hopes to help other parents out there who have a child with disabilities.

    Q. At the first moment you met me and noticed something was different about me, what did you think?

A. Having some idea medically about your condition, I thought of the many reasons that I had decided not to have children of my own because of my own problems and how little the quality of your life must be!!!I was told you would not live beyond 12 or 13 years of age and at the time, I actually thought of that as a blessing!

    Q. What made you want to step in and take control of my health problems by taking me to doctor appointments?

A. I began to see you in a different light as I realized you were a special person who had a lot of spirit and I just fell in love with you…Certainly, your problems seemed insurmountable, but you weren’t afraid to fight for your life, I realized just how wonderful you really were and if you could face death with so much against you, then how could I not stand with you too!! I knew just enough about medicine to see a path to help overcome some of your major problems and besides you were a willing guinea pig and fearless!!!

    Q. How did you cope with the challenges of the doctors and what they want to do for me?

A. If the term, “ nothing to lose “ means anything, then in your case, we were at that point. We knew you had pulmonary hypertension which was slowly killing you, so your heart doctor and I spoke of probabilities of you never coming off the table were extremely high, but the alternative was unacceptable! Granted I died a few times while you were in surgery, but you pulled us both through it. I had never faced terror like that even in Viet Nam.

    Q. At times when I was very sick from a surgery gone wrong and as a parent, how did you deal with the emotions that you felt?

A. Actually, all your surgeries were very successful which is why you are still here, with the exception of one. I call it the “ bridge too far “ which was for all intents and purposes was almost cosmetic in nature. We had discussed how you always disliked that your scapula stuck out because of your severe scoliosis and I researched it and found a surgeon in Oklahoma who could do a “ rib resection “ that would bring your scapula down in a more normal position. This involved actually cutting out a few inches of rib from your side and all should be well. Unfortunately, the lab didn’t do a total pulmonary functions test and when you came out of surgery, you had to go on a ventilator and couldn’t breathe on your own. I blamed myself for the outcome for many years because the surgery wasn’t absolutely necessary, and I almost ended your life. I remember coming home to be with you at the hospital the mid weekend while I had been at summer camp ( National Guard ) and was dying inside because I had to fly back Sunday nite, and you were getting worse.

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.

What you want to know about Bipaps…

Living On Oxygen for Life

I get a lot of searches for information about Bipaps. Things like:

  • Do you need to run a bipap every night?
  • Why does CO2 go up while using a bipap?
  • How long before sleep should i put on my bipap?
  • Can you use oxygen with a bipap?
  • Where did the o2 connect in bipap?
  • What does it feel like being on bipap machine?
  • Bad dreams when not wearing a bipap machine?
  • How much oxygen does a bipap machine use?


  • These are just some of the questions I see when people search for answers when visiting my blog. I hope that the people can find the answers they are looking for. I will try to answer the questions listed above. I don’t have ALL the answers but based on my extensive experience with a bipap machine, I will try to help.

    Q. Do you need to run a bipap every night?
    A. If that’s what the doctor prescribed based on the sleep study you had to qualify for the machine, then yes, you should use it every night. A bipap not only helps your breathing but it also provides many benefits to your body to keep it functioning.

    Q. Why does CO2 go up while using a bipap?
    A. The only way to know that your CO2 is elevated while using a bipap is to have blood work during a sleep study. I use a bipap to keep my CO2 down. Though, I use oxygen bled in while using the machine.

    Q. How long before I sleep should I put on my bipap?
    A. Even though I’m not often ready to fall asleep when I go to bed, I still put on my bipap. Putting it on when I hit the sheets, helps me relax and it allows me enough time to regulate my breathing with the bipap’s settings. There is a difference between breathing when you out of bed verses when you are lying down. Well, there is for me. It’s harder for me to breathe when I am lying down. So, putting on my bipap right away helps. Plus, I read for a while to distract me enough to get my breathing in sync with my bipap.

    Q. Can you use oxygen with a bipap?
    A. Yes you can if it is prescribed.

    Q. Where did the o2 connect in bipap?
    A. This is the tube that I use to connect my oxygen to my bipap.
    bipap oxygen port tube

    Q. What does it feel like being on a bipap machine?
    A. At first, when I started using a bipap, I felt a little like a jet pilot. It was difficult to get use to wearing the mask but I found one that was pretty comfortable. I had problems with anxiety for a while but I took some Xanex temporarily until I got use to all that air going through my nose. When I first put on my bipap mask, I breathe out to help synchronize my breathing with the machine’s breathing.

    Q. Bad dreams when not wearing a bipap machine?
    A. Back when there was a time when I could occasionally go without my bipap, I would have bad dreams where I would feel like I was going to stop breathing. This was a sign that my CO2 was rising. I would have headaches in the morning when I only used my oxygen and not my bipap. So, now not only do I use my bipap every night, I can no longer go without it. My lungs are too weak.

    Q. How much oxygen does a bipap machine use?
    A. A bipap doesn’t make oxygen or “use” oxygen but you can add oxygen by using an adapter to bleed in oxygen into the hose that leads to mask. I use the adapter (shown above) connected where the hose attaches to my mask.

    I hope you enjoyed this Q&A section of my blog. :)

    It was a longer than expected stretch…

    Living On Oxygen for Life

    When K got home from work last Saturday, it was earlier than I had expected. Sometimes that happens and it’s always a joy to see him home. I was about to take a quick power nap but there he was standing in the kitchen when he asked me…”What are your plans for the rest of the day?” Now, I know from previous experience when he has asked that question, he generally has something up his sleeve already. So, this time I just I played it real cool by asking him, “Whatcha got in mind?” Trust me.. K always has something in mind when he asks. So, why spoil the surprise by telling him I was about to lie down for a nap? Right? Are you with me?

    You see, for the past 3 weeks, I’ve been having trouble breathing. Ok… I know, that you know, that I have breathing problems all the time but, this time, over the past 3 weeks, it’s been a bit worse than usual. It’s like I can’t even bend down to the floor a pick something up without getting short of breath. crap… really? Yeah, really. K has noticed that I haven’t gotten out of the house much at all by myself lately. So, that’s why he asked me what I had planned. He was getting my butt out of the house. haha!

    What’s the one thing, you ask, that will motivate me to get out of the house? Shopping for yarn? Well, that is true but it’s not something that K would willingly take me to do. *wink* Nope, he wanted to take me to see the new Transformer movie. The one that has Mark Wahlberg. When we looked up this movie, the first thing that we noticed was how long it was. . It was 2 hours and 45 minutes. yikes….that’s long!

    I was thinking.. This is going to be tricky. The calculating begins! Will I have enough oxygen in my portable liquid oxygen tank to walk from the parking lot, into the mall movie theater, watch the movie and then return to my van? Now, we like having decent seats. So, we wanted to get there a little early. K was over in the driver seat saying..”You’ll be fine. You’ll have enough.” I gave him a very skeptical look. He said, “You can turn it down when you sit in the movie, right?” I was wearing my oxygen on 6 Liter/min nowadays. I was already going to have to turn it down to 5L/min just to walk to and from the theater.

    We actually did get pretty good seats. We thought it was going to be a little fuller. The movie start time comes and then it goes but finally started about 10 minutes later. What we didn’t know was that they had tacked on 20 minutes of commercials and movie trailers to the beginning of the movie. It was a long wait for the movie to start and it was a lot of time that we didn’t factor into my oxygen consumption needs. So, I turned my oxygen down again to 4 L/min. Now, I know I can do this as long as I remain seated and do not talk. Otherwise, I would need more oxygen.

    By the time we thought the movie was about to wrap it up, I pick up my portable to see how much juice was left and I nearly panicked because it was so light. K asked me if I wanted to leave early. I thought, “Surely it can’t last much longer, right?” So, we decided to stay.

    The very second the movie was over we bolted out of our seats. I had to grab K’s belt because I got woozy. He must have said something to the people sitting in our way to get to the aisle because they quickly moved out of our path. I was like… I’m so sorry! I hate mowing people over when they’re not ready to leave the theater. Usually, that’s us. We like to read the credits.

    We made it just in time to my van before my oxygen ran out. Thankfully, I have a big backup reservoir of liquid oxygen in my van. I don’t think we are going to try that again with such a long movie and only one portable oxygen tank. That was a little too adventurous!

    I hope you have a great adventure!!! *hugs*

    Oh my gosh! I love it!

    Living On Oxygen for Life

    I just had to share this with you because I love it so much. Kayla, from PHantastic Jewelry has made me a Pulmonary Hypertension Awareness bracelet. It arrived in the mail today. I immediately showed K because I was so excited. This bracelet that I ordered exceeded my expectation! Please check out her website. According to Kayla, the proceeds from the bracelets will go to the Pulmonary Hypertension Association.

    Below is the picture of my new bracelet! I love it so much! I don’t think I can say that enough! Thank you Kayla!

    My New Pulmonary Hypertension Awareness Bracelet designed by Kayla

    My New Pulmonary Hypertension Awareness Bracelet designed by Kayla