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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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

    Take “Time” to Read This..

    Living On Oxygen for Life

    Side Note: I am a big believer in paying it forward. This article is so inspiring and I am honored that I am permitted to post it on my blog for you to read. I hope it warms your heart as it did mine. Thank you Mr. Sarine.

    Time ©
    by William G. Sarine

    It was 1975 in Chicago and I was a salesman for a large computer company. I had a number of large accounts including Illinois Bell Telephone and American Can Printing Company. One day I was waiting in the American Can office pending my appointment and was watching a young man through the display window, running tapes on the computer system. It was a print shop and he was loading machines and then going to the command console and rapidly keying in command codes on a key panel in computer code. This fascinated me that anyone that could not only remember all the codes but key them in so rapidly.

    The manager I was meeting with came out and I commented to him how amazed I was at the skill of the young man. He nodded and with a quiet voice told me he had some bad news for the young man. The company was closing down the print operation and moving it to another site. He was going to have to let him go. What made it more difficult was that this young man had no education and was the support for his entire family. His father had died and he had his mother and three siblings to support. He said he always came in early worked late and never complained.

    Later that day I was meeting with the Comptroller of Illinois Bell and on a whim asked if they had any affirmative action difficulties. He immediately got serious and said one of his greatest challenges was finding qualified people with technical skills. I told him about Petro. He indicated he would like to speak to him and asked me to set up an interview. We set a time for the following day. I called his boss and arranged to meet Petro at his office early so I could give him some briefing.

    The next day when I met Petro I immediately decided that Jeans and worn sneakers were not the appropriate attire for an interview. We went to Marshall Field’s Bargain basement, fit him out with a suit, shirt, tie new shoes etc. he felt very uncomfortable so I decided to give him a pep talk. When I was starting in business one of my first mentors pulled me aside and gave me a watch. It was a simple Timex but the words he said always stayed with me.

    “This clock represents your time. You own it… and are the only one that can control it. Time is given to each of us and what we do with it sets us apart from everyone else. You can waste it, cherish it and grow or not– it is your clock and the time is yours to control. Use it wisely or foolishly but no matter what you cannot go back just forward.”

    I never will forget that look as he stared at the watch. I dropped him at the reception desk and with shaking legs he walked into the interview. Over an hour later he emerged with a glow in his eyes. Smiling he said he got the job.

    I lost touch with Petro over the years but heard he was doing well. I moved on to North Carolina and 30 years passed. Now I was running a company in the east and distributing electronics nationally. Attending a trade show in San Diego I had a very hectic schedule of booth operations, press conferences and committee meetings. Tired and exhausted on the third day I was taking a break with my 3rd cup of coffee when a well dressed gentleman approached me and said; “are you Mr. Sarine formerly from Chicago?” I nodded yes and then he dropped the bomb. “You may not remember me but I used to be called Petro. I am now Peter and I hoped I would have the chance to meet you again.” I guess I showed my shock. He explained that he had been given an opportunity to finish his education and in fact had a master’s degree from Northwestern and was now on the staff of ATT Headquarters in NJ. He was married with 2 children and a fine life. We planned to have dinner that night.

    At dinner he stated he had a gift for me and handed me a box. In it was a new watch. Included was a note that will always be sacred to me.

    “This is your new clock to replace the one you gave me. I am sorry I cannot return the original as I have already passed it on to another with your words. May it serve others as it did me.

    Thanks for your faith in me.

    Petro”

    Since then I have made it a practice to always have a spare watch available to pass on when needed. The price of the watch is not relevant. It is the use of time that is.

    This article is Copyright © by Bill Sarine, Writers Guild of America Registration number 1706756

    William Sarine, Vice President of Business Development at Beachglass Films has been a founder of both commercial and non profit companies. He has experience in strategic marketing and was a founder of a number of companies including EntreDot, a non-profit organization focused on mentoring and coaching small early stage companies. He founded a number of companies such as Global Data Networking Systems, Inc, a successful sales and consulting firm. He has experience in all stages of corporate leadership and has worked with all levels of corporate management. He has been a CEO, VP of Sales and Marketing, a national sales manager and a product manager for both large and small companies. He developed the “10/40 Sales Management Program”, a premier time management and motivational tool. He has been invited to speak on emerging technologies and evolving products at executive sessions at a number of firms including BellSouth, RJ Reynolds and FedEx. William was previously a guest instructor for the University of South Carolina’s NetGen CIO Academy. Bill has a degree in marketing from Farleigh Dickenson University with additional studies at Fordham University. Additional experiences include participating in a trade delegation to Canada sponsored by the US Dept of Commerce and the Canadian Commercial Attaché Board and being a member of NC Idea Lab, a non profit organization focused on generating new business concepts for prelaunch companies.

    The winner of the “Need a Hug” giveaway…

    Living On Oxygen for Life

    Yep! A name has been drawn and notified. Don’t forget that I will continue to create these “Need a Hug” afghan/lapghans until the end of 2014. I’m still thinking about continuing the “Need a Hug” program into the next year. I create these afghans and send them out of the joy of knowing someone who receives them knows that someone is thinking and caring about them. The expense is a factor in my decision on whether or not I can continue into the next year. I’ve actually thought about opening a GoFundMe account for donations but I feel really weird about that. If I did that, part of the funds could go to raise awareness of Pulmonary Hypertension.

    Pulmonary Hypertension is an incurable disease and I have it as do many people. If you want to read about Pulmonary Hypertension, there’s a great website filled with all the information you need to learn…. Pulmonary Hypertension Association.

    June 2014  Need a Hug giveaway

    June 2014
    Need a Hug giveaway

    More about bipap machines and sleep studies..

    Living On Oxygen for Life

    There are different reasons for needing to use a bipap machine. By now, if you have this machine, you know that a bipap is really different than a CPap machine. A CPap machine provides a constant, continuous positive pressure of air through your mask. It’s main use is for what is called Sleep Apnea. Sleep apnea can cause snoring. The continuous positive pressure of air the flows through the hose, tube and into your lungs keeps a your lungs open while you sleep. From experience during a sleep study, I could not tolerate a CPap but many people do well with them.

    For this reason my doctor tested me on a Bipap. The pressure from the CPap was too much for me lungs. Bipaps and CPaps can be difficult to used to. I’m not going to lie to you. I had to change the way I breathed when I attempted to fall asleep. At first, I would have panic attacks because I would be so tired from trying to get myself adjusted to the machine that I couldn’t fall asleep. I ended up having my doctor put me on Xanax. It helped. Word to the wise, Xanax is only to be used temporarily. After some time, I found what worked for me. I started by staying up late to the point where I was really sleepy. Then I tried reading in bed until I became sleepy. Reading really helped because it distracted me from keeping my breathing synchronized with the Bipap’s pre-set of “breathing.”

    Bipap’s are meant to function to continually breathe for you if in fact you stop breathing. That’s one of the main functions of a bipap. Think of a fail-safe or a backup to your own breathing.

    Bipap

    This machine is considered a Durable Medical Equipment and you must have a Sleep Study ordered by your pulmonologist to qualify to receive one and for your insurance to pay for or rent one for you. A sleep study is an outpatient procedure where you sleep in either a clinic or a hospital sleep department. The techs will attach electrodes and wires and the mask attached to the Bipap or Cpap. You also get a nifty wire that reads your CO2 and another thing called a pulse oximeter taped on your finger. Oh! They expect you to be able to sleep with all these electrodes wired to your head. Does anyone ever sleep during one of these?? haha!

    You may not start off wearing the Bipap or oxygen for the test. Try not to panic. They need a base-line of your breathing ability, oxygen saturation and other important data. Don’t try to change the tech’s mind about what you want because they are following the doctor’s orders. They will also attach a nifty wire that reads your CO2 and another thing called a pulse oximeter taped on your finger. Oh! They expect you to be able to sleep with all these electrodes wired to your head. Does anyone ever sleep during one of these?? haha! It will be a few days if not more before you hear the results. There is a lot a data to read from the sleep study.

    Be well and take care of yourselves. *hugs*