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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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*

Top 5 Things You Don’t Want To Have Happen As An Oxygen User…

Living On Oxygen for Life

As an oxygen user, I think we’ve all experienced mishaps. I know I’m one of those people. Here is my top 5 things that I don’t want to have happen as an oxygen user.

TOP FIVE LIST

    Dropping a highly expensive medicine pill out of the bottle into a wet bathroom sink and it goes down the drain and/or on the floor where a pet could find it. Not good!
    Taking your diuretic pills and then forgetting that you already took the medicine only to take them again and ending up staying up all night suffering the consequences.
    If you use liquid oxygen: Having the portable and/or reservoir tank freeze open to spit out liquid oxygen when you absolutely have to go somewhere.
    While using your oxygen, one side of the nasal prong comes completely separated and not having a spare canula!
    Having a car mishap (engine trouble) in the middle of nowhere near a pay phone because you realized that you forgot your cellphone.

I have had all of these happen to me. My life is full of these fun adventures. What are your top 5?

Hope

Living On Oxygen for Life

Well, I took a nap and ended up sleeping until 10:30pm. I was very tired…obviously. The humidity here in my area of Texas has been hovering around 70% and it’s kicking my rear end. I can’t be outside for very long before my energy is sapped and I have to head back inside. But, I like sitting outside with K on a patio chair in the evening to talk with him while our pup sits at K’s feet. Yeah, that’s right. His feet. Darn that Rocco! My dog has turned traitor. haha!

One of the things I want to mention to you is that I started a section on my blog, the HOPE section, for those of us who have breathing problems and have a creative talent to design products to sell to further the awareness of their diagnosis. I hope you remember Ruthie from Josephine’s Jewelry. I had a giveaway of her HOPE necklace that she creates. She is on my Hope Page. I also want to give a shout out to another PH’er who creates bracelets to sell. She does this to raise awareness for Pulmonary Hypertension as well. I can’t wait to receive my bracelet that I just ordered Kayla! Her webstore is called Phantastic Jewelry.

When I know a person is truly trying to spread the word about needing awareness of their diagnosis, I try to help and this is what I can do. Posting a link to their blog or webstore is all part of staying connected and building a community of lung and heart patients. So, click on the HOPE tab at the top of the page and check out these two websites. Let’s stay connected! If you have a hobby that you want to use to further awareness of your diagnosis, email me at goredrider@gmail.com

In other news, my mother-in-law is coming over tomorrow…or should I say today? Since I slept so long during my nap, I’m not going to be waking up early. That’s for sure. So, tomorrow may be rough. =oP I had only one day notice. K conveniently forgot to tell me that his mom was coming over to help him with a project. I was scrambling as best as I could to “tidy up” for her arrival. Can you ever tidy up enough for a mother-in-law? haha! We shall see! We actually get along really well now. Though, in the beginning it was a little rough. She was afraid for K with my health concerns. (Which is totally understandable!) K’s mom didn’t approve of us dating and certainly wasn’t too keen on us getting married but after a few years.. well, ok maybe a few more than a “few” years, she mellowed. We’ve really grown close and she now asks about my health and doctor appointments and how they went. It makes me feel very much part of the family now. Since all of my family is in another state, I know I have K’s family if I need them quickly.

Don’t forget that June 30th is the last day for the Need a Hug giveaway. I will draw the winner on July 1st!