Sleep Study Time

Living On Oxygen for Life

There are different reasons for a person who may require a sleep study. Sleep Apnea is one of them. I’ve had quite a few sleep studies dating all the way back to 1993. Even though I was already on oxygen at night only, my lungs couldn’t work well enough while I slept to blow off the CO2 that my body was retaining. My breathing was too shallow. I would have really bad dreams and I’d stop breathing while I slept most nights and the problem was only getting worse.

I was seeing a Pulmonologist in Dallas, TX, in 1993, who realized that my scoliosis played a large role in my breathing problems. Because my ribs are so deformed from my scoliosis-curved spine, it reduced the lung capacity that I had to breathe. Twenty-four years ago, my lung volume was approximately 25% of what a normal, healthy person my current age back then. Today, it measured at 16% at my annual physical. So, over the span of 23 years, my lung capacity has lost about 1/3rd of it’s former volume. Now, if you add the complication of Pulmonary Hypertension to the mechanical difficulties of Restrictive Lung Disease (from my deformed ribs due to Scoliosis), my health becomes difficult to treat. Now, add heart complications. I was born with an ASD (closed on its own) and an VSD (surgically repaired at the age of 10 years old) but also currently have trouble with Ventricular Tachycardia & SupraVentricular Tachycardia. This is the challenge my doctors face. How do you treat one problem without it affecting the others? The answer? Very, very careful trial and error. I make myself heard and understood. I carry test results from one doctor to all my other doctors. We are a team.

So, when I was starting to have a noticeably difficult time breathing earlier this year, I decided to systematically figure out what is causing this large step back in health. I started with my PH doctor. Then went to my Electrophysiology-Cardiologist. After that, I went to my family doctor to bring him up to date. Next, I went to my Pulmonologist who follows my bipap machine. We set up a sleep study. Not my favorite thing to do. I hadn’t had a sleep study since 2009. Maybe I just needed my bipap setting tritrated and that would solve everything… but I don’t think it will. I’m still thinking it has to do with Tikosyn.. the new cardiac medicine I started taking in place of Cordarone.

Next week… I see my normal cardiologist for an ECHO and to ask for a second opinion about this Tikosyn. I’m not giving up until I’ve tried everything to figure out what triggered this breathing setback. I don’t want this to be my new normal. Sure, it’s nice that K does all the grocery shopping on his own but sometimes we have fun together doing it. It just makes me too tired now.

If you’ve never had a sleep study done and you’re curious about them because you have been told you need one, well, wonder no more!

SleepStudy

Here I am all wired up for my sleep study. There are a LOT of wired that are attached to your head, arms, upper chest, and legs. Don’t forget a few weird places like under your chin and next to your eye. Those get a little itchy! You also get an upper chest band and an abdomen band that monitors your breathing. I was able to bring my 3 pillows that I use and my own bipap mask because I already use a bipap. There is a dress code for pajamas. Some sleep studies are done in the hospital and some are done in a stand alone building. If you are to have a sleep study and you use oxygen 24/7, be sure to mention that and take a tour of their “bedrooms.” If you are doing a sleep study outside a hospital and you use a high flow of oxygen 24/7, like me, make sure they can accommodate your oxygen needs. I had to bring my splitter so that I can use two oxygen concentrators together; each set at 3LPM to be able to have enough oxygen while doing my sleep study.

Once you are in your sleep study, if you are having trouble breathing or with the mask they gave you to try, speak up. Let the technician know what’s going on. They’ll try to help as much as they can according to the doctor’s orders. Make sure you understand what your doctor wants to try during the sleep study before you have your sleep study. They really want you to be comfortable so that you can sleep as best as you can. Tell them how you sleep in bed. They’ll want you to try to sleep on your back for a while but my tech let me roll over (which was pretty hard to do with all the wires!) onto my stomach to try to fall asleep.

Seriously, I’d love to hear your comments, experience and advice for future sleep study patients. I know that the Bipap or Cpap machines can be a challenge at first to get use to but, once you do, they can help by improving the quality of your life… at least your sleeping life. *wink* My bipap machine has kept me alive for the last 23 years. I’m glad I didn’t give up on mine.

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Day Two… It continues.. Tikosyn!

Living On Oxygen for Life

There is one thing I want to bring up about the first day that I failed to mentioned in my earlier post about Day One. I’m still pretty upset about it. In fact, at the time, K and I were both very upset and flabbergasted about the whole incident. You see… when I have to stay in the hospital, I naturally bring along my bipap machine so that I can immediately have it available to use and I also bring all of my medicine. All of my medicine includes my specialty medicine which I know that hospitals, even though they are hospitals with lots and lots of drugs, may not have a supply of my specialty medicine. When I went to the Dallas hospital in 2014, that hospital didn’t have my Opsumit, that I was taking (no longer taking now!), in their pharmacy.

On the 26th of May, my first day of hospital stay, the hospital realized that they didn’t have Tracleer in their pharmacy. The nurse came to tell us in my room and I said that’s no problem because this has happened to me before in 2014 in a Dallas hospital. I brought my Tracleer with me in it’s bottle. The pharmacist can inspect it, slap a patient label on it and put it in their pharmacy locker to dispense out to me. The nurse went to call the pharmacy to see if that was ok to do. She came back and told me the hospital pharmacy said they couldn’t do that, saying something about a law? *shrug* I told the nurse that I can not be without this medicine. The pharmacy looked around for a small supply of Tracleer 62.5mg and found some all the way in Dallas that they were going to have brought to Fort Worth for me that night. I was so mad. I was mad because I had my medicine not but one foot from me and they wouldn’t allow me to offer it to take. I was mad because the hospital had someone in Dallas drive in pouring down rain and hail to bring to it to me to use. AND I was mad because I knew this medicine costs $8500 for a month supply and I didn’t want an exorbitant charge for Tracleer on my bill when I have mine to take that the insurance has already paid for when all they had to do is inspect mine and put a patient label on it. Sorry, but I’m still really upset about this.

Ok…Day Two.. It was much better than day one…although, I didn’t get to sleep until 2am because the last vital check was at midnight and I couldn’t fall asleep until 2am. I’m a night person naturally but I was getting in that zone where if I get too tired, I can’t fall asleep. That’s a very bad thing for me to have happen. I will start to feel physically sick. At 4am, it was Tikosyn time! Then nearly 5am, they came in to take vitals and shortly afterwards, the lab lady came in to take blood. Do you see a pattern here? Anytime I would nearly fall back asleep, I’d get woken back up and by 6am it was time for the EKG. By then, I just decided to stay awake and wake for breakfast and K to arrive. And don’t forget the diuretics to begin. They had all my medicine split apart and coming to me at different times. It was crazy because I was so use to taking morning meds when I woke up and then evening medicines right around 5 or 6pm.

I drew this picture and stuck it on the bathroom door. You see me on the island?

I drew this picture and stuck it on the bathroom door. You see me on the island?

K scooted into the hospital right before the doctor showed up and I had my list of questions ready. I think he was impressed because I had them listed on a small notebook I brought in case I needed it. (I highly recommend this!) My doctor noticed that I had my yarn out and had asked if I crocheted. I was impressed that he knew what crocheting was and told him that K calls it knitting. The doctor said crocheting and knitting aren’t the same.. I felt like we had a bonding moment there. haha! He looked around the room and noticed my sign on the bathroom door. I’m so goofy!

This was the worse meal I had at the hospital. Plus it had pepper on it.

This was the worse meal I had at the hospital. Plus it had pepper on it.

The food here was something else. I was stuck choosing from the Heart Healthy diet on a paper menu but I started to get smart by penciling in requests like a bagel and a chocolate chip cookie. The bagel, I got! The extra chocolate chip cookie, I did not. *pout* However, K did go down to the in-house Starbucks and bought us some goodies. For him, he bought a couple of blueberry muffins.. the kind with crumble topping… and for me, 2 chocolate chip cookies of which he snagged one. By the way, all the vending machines in the hospital only had healthy selections..even the soda or other beverages were diet. Gross! After lunch, I couldn’t believe I was able to get a 2 hour nap. It was AWESOME! Then K was like, let’s get your butt up and walk the hall. We did this the first day and he won’t let me get lazy just because we’re in the hospital because he knows that the more time I spend in that bed, the more my lungs lose function and I can have a set back. So, staying active was our main goal. As long as I wasn’t dizzy or woozy, I walked twice a day with him.. or my nurse tech when K had to go home for the night to take care of some errands for his mom and take care of our dog.

K use to sing and act out this song by the Beatles (A Day in a Life) for me.

K use to sing and act out this song by the Beatles (A Day in a Life) for me.

After hanging my motivational picture on the bathroom door, I wrote on the patient information board. It’s a dry-erase board in my room. I wrote my Day’s Goal as to “Be A Ray of Sunshine.” Cute, huh? [Picture shown on Day Three post] I wrote it because I was so cranky the previous day. Before K left for home and while I was in the bathroom, he wrote me a goodbye motivational message on the board that he knew I would know what it meant. I came out of the bathroom and saw that he was guarding it so that I couldn’t see what it was that he wrote. I was thinking that he wrote something to the nurses to get me to walk that evening. I mean, he kissed me goodnight and made me pinkie-swear to walk that night no matter what. I thought it was so cute that he would pinkie-swear with me that I just went ahead and pinkie-sweared. Well, when I read what he wrote on the board, I almost cried. I know that to you it’s just lyrics to a Beatles song but to me, it’s a happy memory that makes me laugh out loud. He’s so good at writing the perfect thing that will touch my heart and lift me up.

On the second day of my hospital stay, the labs came back with an even higher than MY normal of CO2 (or bicarbonate) level. The doctor was concerned, thinking that he should adjust my diuretics but I told him that I have normally high bicarb and my kidney does a good job at balancing my pH level. I told him that I would prefer that he would consult with my PH doctor before changing any diuretic she prescribed. Personally, I don’t like one doctor messing with another doctor’s orders. He did say that he was ok with that and he agreed with not changing her orders but he was going to watch it. That doctor is my Pulmonary Hypertension doctor and there are good reasons why I’m on the medication that I am on. I brought a 15 page history of my major health history (with test results) just in case something went wrong and they’d need more information. I even gave it to my nurse, which she copied, but I don’t think the doctor even looked at. I don’t know for sure but I did it because I’ve never been to that hospital before. I do what I can not to only protect myself but also to protect K in the event that if something happened during this stay in the hospital, he’ll know what to do to get information he needs about me to make the right decisions.

Apparently, at the starting dose of Tikosyn, which is the higher dose, my QT Interval was too long on the second day. The doctor had to make an adjustment to my dose that evening. I was now taking the lowest dose.. 125mcg twice a day. He told me that by the last (5th dose) and after the EKG, he would know if they could send me home with or without the medicine. Remember, anything under 500 is good.

Day One… It begins… Tikosyn!

Living On Oxygen for Life

Lemmon chicken with red potatoes from my garden.

Lemmon chicken with red potatoes from my garden.

On April 26, 2016. I woke up at about 4:30 am and I couldn’t fall back asleep. That’s pretty typical for me when I have something major happening that day. I grabbed my phone while in bed and I flipped through Pinterest to try to get myself sleepy again. Hey, it works sometimes! This time, though, I came across a recipe that I found myself mentally checking off all the ingredients it called for in comparison to what I have on hand. Well, what do you know… I had everything I needed to make this Lemon chicken with red potatoes from my garden.

I hopped out of bed, threw myself in and out of the shower and then got to cooking. When I was done, I went ahead and ate some. I know it was morning but who said you can’t have dinner for breakfast? If you can have breakfast for dinner, why not the other way around, right? *goofy grin* It was pretty good! At least now I had something ready for K to eat when he came home from the hospital. By cooking, it took my mind off of having to be in the hospital for the next 3 days.

The hospital finally called. You see, first the doctor’s staff said that the hospital will call when a bed is ready for me to come up to the hospital to be admitted. Then, the staff said that the hospital will only if there isn’t a bed available and if they didn’t call, for me to go up to the hospital to wait for a bed which worried me because I can’t just sit around at the hospital with my limited supply of oxygen. I’d have to get the hospital to supply me with their oxygen. I decided to call the hospital the day before to find out which method of calling was true. It turns out that the hospital calls me when they are ready for me and they did. However, when they called, they told me a room was held for me but there was an emergency and it was given to someone else. After shuffling patients around, they called me back with a bed ready. I got up to the hospital and into my room at about 1pm lugging my bipap, my 50ft tubing (theirs isn’t as long), clothes, all my medicine (you’ll hear much more about this later!), snacks, and yes, even my yarn! And that’s when the chaos began.

Selfie in the hospital to try Tikosyn.

Selfie in the hospital to try Tikosyn.

Once in the room, I was told to change into this high fashion gown made of pure, authenticated, designer cotton (tied in the back to obviously supply my back with the most opportunity of cold drafty air). K had to help me tie the back. I mean, who can tie those things?? Really!

Day One: blood draw & IV.

Day One: blood draw & IV.

Then, I was told I had to have an IV. Oh man.. I was so not happy but what could I do about it. I begged though. I’m not below begging when it comes to an IV, you see… I’m sensitive to adhesive and let me tell you… it itched and was painful the whole time (2 1/2 days!). And then there were the sticky electrodes that stay on. Ugh! Thankfully, I actually already had a lunch tray of food waiting for me. I couldn’t believe my luck! The food I made earlier in the morning for K, I ate as breakfast. So, I was pretty hungry by 1pm. Before I could eat, I had my blood pressure checked while sitting, lying down and standing up to get a baseline. It was all normal. Everything was going along swimmingly until I hear this pulsing dinging sound which kept going off loudly. Seriously, it was loud and sometimes it was continuously. It got to one point on the first day that I was fed up with hearing it and I asked my nurse, “What the heck is that noise??” She told me it was the nurse’s call button and my room was situated next to one of the two speakers of this bell. LUCKY, LUCKY ME! *rolling eyes*

At 4pm, I took my first dose of Tikosyn. I mentally braced for impact. I just didn’t know what to expect and neither did K. The doctor did come to see me later that evening. He kind of breezed through. I was unprepared to ask any questions.. so my mind went blank. Argh! I hate it when that happens. When I took my first dose of Tikosyn, they wait 2 hours and then they do an EKG. They do this for every dose of Tikosyn you take to see if you are at the right dose of Tikosyn. They want to know that your QT Intervals are under 500. Don’t ask me what that means because I just really don’t know. All I know is if it’s under 500, we’re doing good!

I missed my dog Rocco while in the hospital. So I drew him from the picture I have on my cellphone.

I missed my dog Rocco while in the hospital. So I drew him from the picture I have on my cellphone.

I was SO cranky the first day. I knew K had decided to not stay all night at the hospital with me and I was ok with that. I was riddled with anxiety because everything was chaotic while, at home, everything is controlled. I know what to expect when I’m home. I take my medicine at MY usual time, I sleep in my own bed, my tv has more channels (hehe!) and people are not coming and going in and out of my house as they are at the hospital. Plus, I missed my dog, Rocco. I got out my notebook and drew him from a picture I have on my cellphone. I didn’t realize how much I would like the way it turned out. Drawing isn’t really my talent and drawing it in pen…well, I got lucky that it doesn’t look like a bunch of scribbly lines.

So much more to tell you but I leave that for Day Two! I don’t know how many of you like long blog posts. Therefore, I am breaking the whole even into separate day posts. I hope that’s ok. For those of you who don’t know what Tikosyn is… it’s an anti-arrhytmic medication for my heart. You can read more about it by clicking on the link. I don’t have Atrial Fibrillation. I have PSVT (paroxysmal supraventricular tachycardia), Ventricular tachycardia, Cardiomegaly, & Secondary Pulmonary Hypertension (Functional Class III)

New video!!!

Living On Oxygen for Life

For those of you who do not use Facebook, you probably do not know that I just completed and uploaded a video. I’ve been receiving a lot of searches concerning the use of a Bipap machine. I’d like to do a series of videos to answer the questions that I can about the Bipap. If you’ve seen any of my videos, you know it’s hard for me to remember everything I want to say. So with that in mind, have fun watching my video which is almost 8 minutes long. I know! Nearly eight WHOLE minutes of fun-filled excitement! What are you waiting for??? *wink*

Want to know more? Let me know in a comment.

[2015] ** I’ve noticed that my blog doesn’t show the YEAR of each post. That’s why I’m placing the year now at the bottom of the posts. You know… in case you were wondering. haha! I hope you are having sunshine where you are! *love and hugs* to you all. Be well!

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. 🙂

    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*

    Flying… Is it becoming an option again?

    Living On Oxygen for Life

    Just because airlines are now becoming more equipped to meet our modern technological needs, it may still be a while before power outlets on airlines can be used to power our medical devices. All I can say is ASK, ASK, ASK! The worst an airline can say is No. I’ve researched online to see which airlines are stating they are equipping their planes with power outlets. You can find the 3 most major airlines below. If you click on these links, you will be taken to a page that will tell you which planes in their fleet have outlets. All airlines have different rules and regulations.

    Inflight Connectivity and Power

      United Airlines
      Delta Airlines
      American Airlines

    Airlines have to follow the FAA Regulations and they also have their own set of rules regarding medical device usage inflight. Most provide a list of Portable Oxygen Concentrators (POC) they allow for inflight use. You must be able to fit it in an appropriate storage location for safety or purchase a seat for it. Once again all airlines have different rules and regulations. The five airlines listed below, are the ones that I could find a list for you to look at.

      Delta – Click on SPECIAL CONCERNS for oxygen information.
      American Airlines POC Approval List & Requirements
      United Airlines Special Needs – Click on Customer-provided Ventilators, respirators, & CPAPs OR Portable Oxygen Concentrator links for information.
      Virgin America Airlines – They have a downloadable POC medical form in PDF form. Remember this must be on your doctor’s letterhead. Virgin America will not allow usage of electrical outlets to power or charge medical devices. You must provide amble batteries. Please check their guidelines.
      Southwest Airlines POC list – Click on Portable Oxygen Concentrators – link provided for Physician’s Consent Template.

    TSA

    Before you even get to board a plane, you have to go through security. Getting through security with a piece of medical equipment means you need to read up on the proper way it’s done. I’m really serious here. You mess up here, you aren’t getting on that plane whether you have a ticket or not. So, please read these pages closely.

      TSA’s rules for Portable Oxygen Concentrators & other medical equipment.
      TSA – Travelers’ with Disabilities and Medical Assistance Needs – I highly recommend giving them a call for assistance. You need a 72 hour in advance notification for their assistance.

    And finally, this link goes to an article written by a person who traveled using his Bipap inflight. He tells how he did this. It’s a good read and very informative. Just don’t expect his level of success. Every trip should be considered a learning experience. I would LOVE to hear from anyone who has successfully traveled using their Bipap / Cpap/ or just oxygen in flight. Please feel free to leave a comment to share your experience. We could all benefit from your experience!

    Wow! This post made my brain hurt! lol! I hope it helps someone. Please don’t forget to follow my blog. You may enter the April 1st giveaway for the HOPE necklace. Just email! Love to you all. Stay healthy… by the way.. the dwarf trees are planted!!!