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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The evil that I know… Tracleer!

Living On Oxygen for Life

I bet you were wondering what happened to me? Well, you know I had that doctor appointment with the Pulmonary Hypertension doctor, right? That was on September 5th. I wrote the September 5th blog post before I went to see the doctor. Did you know that the pediatric dosage weight limit for Tracleer is at 40kg? My doctor didn’t even see a pediatric dosing weight for Opsumit. You’re probably wondering why I’m telling you this, right? Well, it’s because I only weigh 98lbs which converted to Kilograms turns out to be nearly 45kg. So I’m pretty close to 40kg.

The whole time I’ve been on Tracleer, K and I have told my PH doctor that during the first month of taking Tracleer, I did and felt really great. Tracleer is started on half dose… IE: 62.5mg twice a day for a month. After the first month, the dosage goes up to 125mg twice a day. When I went up to full dose and after a few months, I started to feel bad. I lost endurance and my shortness of breath became worse over time. I even lost interest in a lot of things. Opsumit was much worse for me and I ended up in the hospital (August 5th of this year). I know, it’s crazy! Why aren’t the doctors listening to me and K?

Finally, during and after the hospital stay in August, K and I were at our limits with the whole PH medication thing. I actually told the hospital PH doctor (the partner to my doctor) that… “With me and the way my body reacts to certain medications, you have to start thinking outside the box to treat me.” I told her, “I want to be a part of the decision making for the treatment care to my body.” Not that I felt that I wasn’t on the team but I just wanted to remind them that I’m not stupid or gullible or even a non-active participant in this whole hospital situation. Shoot, I was on a roll! I told her that I wanted off of Opsumit and back on Tracleer. Heck, it was the evil that I knew.

So, at the doctor appointment on September 5th, we saw my PH doctor. K and I laid it all out there about how very frustrated we were. I think we finally got her to see the light. I do not have primary pulmonary hypertension. My pulmonary hypertension is something that I was born with and is due to malformation of my ribs that decrease my lung volume and due to the heart problems that I was also born with. They tried a lot of PH medication to treat the Pulmonary Hypertension and Tracleer does bring my PH pressures down but it costs me my breathing ability and the quality of life I would like to have. I didn’t start having my Pulmonary Hypertension treated until year 2006.

I bet you’re thinking: Now what? Right? Well don’t fret, y’all! We got a plan. It’s pretty shady but I finally got the doctor to agree to let me try it. The doctor, K and I all agreed that I could either come off of PH medicines all together or take Tracleer at half dose for the next 3 months and then do a heart cath in December. The way I see it is that however much the medicine brings down the pressure, if it’s bringing it down, it’s still considered HELPING whether at full or half dose. Of course, it could just not work at all like the PH doctors think will happen because according to all the clinical trials, Tracleer doesn’t work at half dose. I wonder how many lightweight people they did the Tracleer clinical trial on. I can’t even take long-acting type of medicine for this reason.

I’m thankful I still have a whole bottle of Tracleer leftover from switching to Opsumit. That way the doctor doesn’t have to do the paperwork yet for Tracleer full dose.. just for the half dose. It’s a little complicated. Technically, I’m not suppose to break the 125mg pill in half myself. The doctor said it shouldn’t be done. K and I looked at each other in the office and rolled our eyes. I’m breaking my own darn pills! Why get MORE Tracleer when I have pills I can break in half?

I hope everyone had a wonderful Summer! You know what season it is, right? It’s FLU SHOT season! Get yours this month! I’m getting mine early next month at my doctor appointment for my annual physical. I’m still battling to get my thyroid under control but I have hope that since I’m back on Tracleer…all will be well again!

Stay well! FOLLOW my blog!!! Lots of love to you all!

A lot of catching up to do…

Living On Oxygen for Life

I can’t express to you enough how crazy the month of August had been and it seems to be overflowing into September. I had a LOT of doctor appointments last month and there wasn’t a week where I didn’t have at least one appointment. This month has been a little better but the doctors now think it’s ok to call to tell me that they have to reschedule my appointment because they need to be out of town or whatever. I don’t know if they even realize that K has to take off from work to be able to drive me to these appointments. It’s not like he can take off willy-nilly at a spur of the moment. Unless it’s an emergency (like really an EMERGENCY), he needs to give his job a two weeks heads-up. These Dallas appointments and the actual emergency trip to the ER and my admittance to the hospital in Dallas last month is starting to really burn up K’s sick leave.

Now, that’s not to say that I can’t drive myself to the local doctor appointments except for the one’s where I’m having the nerves in my neck cauterized to help with migraine headaches. I’m not allowed to drive myself for those. In fact, until I get my breathing and my thyroid problems under control, I’m postponing the final cauterizing appointment. I just don’t need the added stress of the procedure.

The thyroid medicine that I’m taking has still not stabilized my thyroid level yet. It’s getting me really frustrated. We still don’t know for sure what caused my thyroid to act up. I had all sorts of tests in the hospital. I’m hoping it’s going to be a temporary thing and then go back to being at a normal level. The sooner the better! haha!

Today I have a Pulmonary Hypertension doctor appointment. I’m back on Tracleer; still on the half dose for the next 2 weeks. Then I get bumped up to full dose at 125mg twice a day. I chose to switch back to Tracleer because it’s the evil I know whereas I think (my personal opinion) that the Opsumit was the culprit causing the breathing, low potassium, body pain and thyroid problems. That is too many things happening out of the blue, in such a short time span, to make me think that Opsumit is doing something to me. However, I could be wrong. I’m pretty frustrated that I left the hospital with just the diagnosis of being Hyperthyroid. They wanted to blame it on my heart medicine (Cordarone) which is understandable but my Primary Care doctor was saying that he thinks Cordarone can cause “Hypothyroid” not “hyperthyroid.” So, he’s going to look that up. He’s on the case! Though, he doesn’t want to step on the toes of the Dallas doctors.

Another thing that bothers me is that while I was in the ER they drew labs and the results showed the ALT and AST functions were high which have never been that way for me in the past. These show how your liver is doing. Not once did they tell me this. I had to find out by requesting a copy of my labs. When I brought it up with them via email, they said they weren’t worried about it because the labs I took 3 weeks later were normal. My question is: Why were they abnormal in the hospital? and How long had they been abnormal before that?

Ok, I’ll calm down now and tell you how my week went with my mom since she came for a visit this week. I had a really good time with her. She doesn’t move very fast. So we could relate to each other really well. She transplanted the flowers I brought home from the hospital for me. She’s a great gardener! We had a fun competition of doing Sudoku puzzles. She is definitely better than I am. I guess she thinks faster than me. haha! It’s ok… we had fun. K and I are going to have her come down often because she can ride on the train now. YEA!

I do want to mention that there is a “Need a Hug” giveaway going on right now! The deadline is September 12th! Go here: Read how you can enter to win a Need a Hug afghan!

FOLLOW MY BLOG via email. I don’t want you to miss out of all the fun adventures I have while living on oxygen! Stay well!

Reality…

Living On Oxygen for Life

I’m not invincible. 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. :)