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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Sleep… can you tell I’m not getting enough sleep?

Living On Oxygen for Life

I’ve decided to try my hand at creating something new. Want to see? Of course you do! Just keep in mind that I’ve never made one of these before. So, it may look a little amateurish.


I named her Winter. I’m currently trying to crochet a little sister for Winter. Hopefully, the little sister, which I think I will name Snow (nothing like Snow White! haha!) to carry on with the “Winter Theme.”

I got home about 2 hours ago from my doctor appointment for my annual physical where I spent at least an hour updating my Primary Care Physician on my current lab results, the previous doctor appointments with my other doctors (Endocrinologist & Pulmonary Hypertension), and I let him know about my future scheduled Heart cath in December (booooooo!!!). I admit. I’m not looking forward to that. I mean, who is, right? We also went over my physical lab results which showed that I still have Hyperthyroid. Darnit! Though, my doctor did say that it can take a long while for the medicine to work. Ugh! *banging head on table* Work already!

I don’t know about you but I have to be REALLY tired or sleepy to be able to fall asleep. I usually take Benadryl to help with that but I’m ready to try something new. I haven’t been getting much sleep for the last two weeks, especially the last 3 or 4 nights. I told my doctor about it. I do well on my Bipap that I use with oxygen. So, I’m pretty sure that’s good. I don’t think I’m ready for what my doctor suggested, which was Xanex. My lungs are so small and sensitive (I tested at 20% lung volume today which was a blow to my psyche) that I can’t take typical medicine for pain or seditives because they bother my breathing. My doctor suggested Melatonin. I’ve never tried it before. Little nervous. Anyone out there have experience with this stuff? Let me know.

Keep in touch, y’all! FOLLOW MY BLOG! Have questions about me? Email them to me and I’ll answer them on this blog… Stay well everyone! Don’t forget to get your flu shot. I just got mine today and it didn’t even hurt! I swear! I’m about to go for a nap because little ol’ me is going with K to the Dallas Stars opening hockey game tonight! Oh yeah! Go get ‘em Stars! Hey, maybe I’ll be on TV?!?!?! haha!

My thoughts about Enterovirus D68 & Ebola

Living On Oxygen for Life

Ebola is here. It’s in Texas and for the first time someone has come into the United States who appeared well but turned sick with Ebola. I’m sure every one has been glued to their TV to learn about this virus. I am concerned… yes, but I’m not afraid of Ebola because top doctors, CDC personnel, and many more are working very hard to contain the situation. I’m much more worried about the Enterovirus D68 that is now in Texas as well. I don’t mean to say this to start a panic but I have respiratory issues that, though they may not be in Asthmatic in nature or that the factor I am not a child, I still am concerned. I found an articled at Body and Health that states this:

Enterovirus D68 infections occur most frequently in summer and fall. Children under the age of 5 and children with asthma appear to be the most at risk of infection, but it can also affect adults with asthma and those that have weakened immune systems.

To allay my concerns, I will be asking my Primary Physician if I need to be extra careful even though I do not have asthma. After all, no question is a stupid question. I will also asking how often I need to be immunize against the Whooping Cough. I’ve had the shot once already because my doctor said that if a came down with Whooping Cough, I’d be in serious trouble with my lung so weak as they are.

Protect those precious lungs. :)

And so it begins…

Living On Oxygen for Life

That’s right… the sick season begins. I sure hope everyone has got their flu shot, pneumonia shot and now the pharmacy is even offering the Shingles shot. What the heck??? What if you have never even had Chickenpox yet? I’ve never had chickenpox. My two sisters have. I guess I was lucky that way. I still remember my mother telling not to go in my sisters’ room because they were sick. I was soooo bored!

Last weekend, K and I took his mom and his aunt to the airport. His aunt was coughing in my van and I was really nervous about what she could have. Do you ever get that way around someone who is coughing? With breathing problems, I react to people who seem sick by becoming instantly alert and analyzing the symptoms of someone who might be coughing. I even hold my breath if they cough around me and then I make a run for it! Seriously! I am out the door! See ya because I don’t want to be sick too.

Unfortunately, I was stuck in the van with all of us and I was secretly praying the whole time that she only had allergy problems. *please, please, please!* Hey, they do have allergy issues in the family. The problem that I have now is that K texted me from work stating that he is sick. UGH! Double crap!

I have not had my flu shot yet.. I plan to get it next week when I go in for my annual physical. K has not had his flu shot yet either. At least I feel fine and I plan to keep feeling well. I ran to the pharmacy to pick up what my pharmacist recommended for K to take. She said Zyrtec-D. So I picked up some of that in the generic form which is outrageously expensive for over-the-counter medicine and then I also got some other stuff as a back up. Every now and then K and I have strange reactions… as in when we sleep or get jittery during the day… when we take certain sinus medications. It’s good to have a few choices. I don’t want him wigged out at work. haha! That would not be good!

Take care of yourself. Be proactive. You know what the saying of “An ounce of prevention is worth a pound of cure.” by Benjamin Franklin means, right?

I love hearing from you! I am wondering if you have any questions about me that you would like answered here on this blog. Are you curious about “Who is Christine?” If you’d like to ask a question to be answered by me and about me, email your question to and make the subject line: ASK CHRISTINE! If I get enough questions, I will answer them on my blog. Please keep all questions clean. Lots of love to you and stay well.

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!


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.