We went on vacation!!! FINALLY!

Prepare yourself for a LONG read with pictures. 😉

It all began the day before we left for South Padre. You see, we have a cute waterfall pond that’s filled about 8 goldfish. On that day, the pond pump decided to quit working. So, off to Lowe’s K went. It was a good thing that the pump died because K decided to check out the Inverters that Lowe’s had available. When he found them, he FaceTimed me to check the voltage & amps/watts my Bipap runs on. He bought one so that I could use my bipap while in the van!   

Our vacation was pretty adventurous from the very beginning. It first started with my oxygen reservoir we keep in our van for car rides. It decided to start leaking oxygen when we got there. We called Life Support-Dallas, who services my oxygen needs, and K and Eddie (Life Support) walked through through on FaceTime trying to fix it. Well, K did everything right but when he poured hot water on the chunk of ice that was around the leak, the hose snapped off. All the liquid oxygen bled out. See what happened! (Large video 30mb) https://livingono2forlife.files.wordpress.com/2022/10/img_2536.mp4

Naturally we scrambled to calculate how much oxygen I had left and how many refills my portables can use from one of my 2 100lb reservoirs in the condo before we had to go home. Yikes. That was interesting. One of my tall reservoirs can fill both portables 12 times. Then we worried about the hurricane and which direction it was going to go. We made the decision to leave early if it came our way. Plus, we decided, when both reservoirs got down to 1/4 full, we would start for home since we no longer had my van reservoir to drive home on. 

The next day, I asked K if he wanted me to tie a string around his glasses with a little duct tape (I never leave home without duct tape!). He said no because he didn’t want to look like a hill billy. Lol! 30 minutes later, he came back all upset because he lost his glasses in the Gulf. Men and their stubbornness… Am I right ? Lol! Ok so we scrambled to find an optometrist in the area who would see him the next day (Sunday). The doctor turned out to be super nice. We got a prescription and emailed it to K’s eye doctor where we get our glasses made. His glasses are super complex. All the bells and whistles on it. *rolling my eyes* So, his glasses are in the works while we wereon vacation. YAY!

Next, K get stung by a Blue Button jelly fish. My Go-Bag to the rescue again with Medical supplies this time. He’s fine. No real damage to report on that other than slight swelling. Wheww! I was like, Dude… don’t even say… “What could happen next.” Seriously, with his vacation track record.. I was fearing the worst! Well, the drama calmed down and we had a good time. He went to the beach every day and walked the dogs a bunch. Willow became our beach dog who chased the little hermit crabs and seagulls. Neither dog wanted anything to do with the water which was ok with me.

The water heater in the condo was not functioning properly. We had lukewarm showers and I had to heat water to hand wash the dishes (no diswasher). The night K lost his glasses in the Gulf, he went down with a flashlight to look for them along the water and found a $500 boombox bluetooth speaker system floating in the water! Wow! He was all excited. I posted information on Facebook in the SouthPadre Concierge and no one claimed it. K brought it home with us.

We went to the Fire Station to check out the Mobi-chairs (wheelchair for the beach that has large fat tires!) that we could’ve checked out for free to help me get down to the beach. However, we tried my wheelchair down the boardwalk to the sand, parked it at the end, and I could walk the rest of the way slowly. So, we didn’t need the Mobi-chair. It’s nice to have one available for free if I needed one though. The fire fighters were super nice and said they had oxygen if I needed it. I don’t think they realize just how much oxygen I use even though we told them 8lpm 24/7. *shrug* =o)

We went down to the Jetties where the shipping channel is. We watched the surfers catch a few of the higher waves that the hurricane had caused. We had a few red flag days there at the end for the water danger. That is where K went for a walk down the rocks of the jetty and found a turtle stuck head down between two massive rocks. Poor thing. We tried to let people know who where there but they all said not to touch it.. talk of big fines.. blah blah blah. So, he came and told me and we looked up the Sea Turtle Rescue place that we visited the day before and got them to come out to get the turtle out.

K got to name him Jagger (after Mick Jagger, of course!). They wouldn’t let him name him after Mike Modano (Dallas Stars!). We went back a few days later and checked on Jagger. He was doing well. Hope to watch his release on Facebook when the time comes. Every Friday and Saturday night we would go out on our patio when it got dark and a restaurant would set off fireworks that lasted about 5 mins. It was great! 

We had a great time. I felt a little weird driving with my Bipap on. I’m just glad that K had to go to Lowe’s before we left for vacation because he found the inverter I could use to plug in my Bipap and use in the van. I don’t think I would have made it there and back without the use of my Bipap during the drive. My breathing has become very challenging now. I use a Bipap almost all day and night now. 

[Health Update] I am going to contact my Sleep Lab doctor to get the ball rolling on getting me the more advanced machine called Trilogy. It can run on batteries or be plugged in and it’s mobile. I could use it anywhere in the house or in the car. It’s time to take that next step. K is slowly adjusting to my new health limitations. I’m proud of him because I know this isn’t easy for him at all. I just had my Telehealth visit with my Pulmonary Hypertension doctor. Everything we are doing is right. It’s just with age and progression of my limited ability to breathe, I’m happy that my heart is holding up as well as it has been. My lung volume has dropped. So, using the Bipap as much as I do now will keep the CO2 at a lower level. My next step will be getting an Echocardiogram (for internal blood pressures & chamber sizes) and a CT Scan on my ascending aorta aneurysm. I’m not a surgical candidate for fixing the aneurysm. There’s nothing they can do for it … just monitor it. It’s definitely past their criteria for surgical intervention. I am worried about it but I can’t spend my life worried about it. Just keep living life as much as possible and fill it with fun things to do.

I hope you all are doing well. Here’s a few pictures we took. We went on a painted turtle scavenger hunt!

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Whew! Have I got a lot to unload!

It has been an amazing month off doctor appointment after doctor appointment after… well you get it. We were busy. After the cardiologist appointments in May, I went back to my PCP (primary care physician) to update him.  We decided against the Prevnar shot again. YAY! However, I did tell him that I have a few more appointments lined up. 

Before we went to another doctor appointment, we went to see my FAMILY!!! K & my older sister pulled off a great surprise for me. Awwww…. I know, right? Since I use 8LPM 24/7 and I can only take one of my large liquid reservoirs & my 75lb liquid reservoirs in my van, my sister found me a loaner 10L oxygen concentrator. That way I can use the 10L concentrator set on 6L and my liquid oxygen on 3L. When I’m traveling on vacation, I tend to need more oxygen. I get tired more easily. Bummer, I know. 

While at my sister’s house, I visited with family, my high school best friend-for-life, our family friend (who I consider a sister– she’s just so awesome!), and there was a niece birthday party (her little friends included!). Not only that… K cooked an awesome dinner for everyone. Uh… YUM! There were homemade crab cakes involved. Delicious! 

I finally got to see my niece’s horse. Our little barrel racer has her own horse now. I’m so proud of her. After all of this and keeping up with our 2 dogs we travel with, we headed home which gave me 2 days to rest before I had another doctor appointment. I was wiped out!

This next doctor is the one who monitors my Bipap use. I explained that it just doesn’t feel like it’s enough for me anymore. We decided to up the pressures because everything on the Bipap memory card looked great. So, that’s what I did and I gotta tell you.. it’s like night and day difference for me. Instead of feeling claustrophobic or not getting enough air, now I feel as if my lungs truly have it much easier to breathe and rest while using my Bipap. 

I also had a PFT. My Pulmonary Function Test result wasn’t great but that was to be expect. I could only do 2 parts of the test because the 3rd part required me to remove my oxygen too long. In fact, the tech had to take my oxygen saturation after I did the first part. It was rough but I powered through it. My lung volume is 16% of a person my age, size and weigh. Thanks Scoliosis! Grrr… 😉

The most exciting doctor we went to see for the first time is a Neuromuscular doctor who see patients who have MS or paralyzed and need ventilation. This doctor was SO amazing that my husband really likes her. Seriously, that’s a huge deal! We went to see this doctor for a consult on either my current or future use of a Trilogy. We had a ton of questions but we came up with an idea. I have a spare Bipap machine that I can setup in my family room to use during the day when I feel like I’m struggling to breathe or need a rest. My hope is to stay out of bed more often because that’s where I use my main Bipap when I sleep, power nap or just rest reading. This is what I’m going to try first. If this isn’t enough, we got back to the drawing board and consider a Trilogy.

This is my older Bipap that I have set up for use in my family room. K has really taken to this idea. In fact, he is encouraging me to set it up and use it. He got me a larger side table for it and an extension cord to use so that I can use a 10ft hose with my mask. That way I can sit at my chair to watch TV or play on my computer!

Though it is another decline in my health but we are taking this one amazingly well. K better than I am. I did have a brief cry over it. Then I mentally slapped myself and powered through it. I hope everyone is surviving the heat. It’s been extremely hot out here. So take care and if you HAVE to get out, take water with you. 

My adventure today…

Living On Oxygen for Life

This was my adventure today. I made cinnamon swirl bread because K asked me to try to make it. It came out a little muffin-topped but when it cooled down a bit I cut a slice off and ate it warm with butter. It’s delicious even though I forgot to add salt. Oops! I read that it makes great French toast. Uh, who doesn’t like French toast???

From start to finish, this bread took me 3 hours to make. While I waited for the rise time to finish, I rinsed the dishes I used and ran a load of laundry through the washing machine. I’m still getting use to our new high-efficiency washing machine that looks like it barely uses enough water to dampen the clothes and has no real clothes agitator. Is it just me or do you wonder how or if the clothing even gets clean? It boggles my mind.

It’s definitely quiet time now at 5:30 pm and I’m ready for a power nap. So, I’m going to strap on my bipap machine with my oxygen and lie down to recharge enough to make dinner in about an hour or so. It feels like it’s been a long day.

I hope everyone has had a good day so far!

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!

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.

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?

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.

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.

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.

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.

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.

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 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.

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.

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!!!

Parts and Pieces of a Bipap…

Living On Oxygen for Life

Over the last couple of years that I have been blogging about living on oxygen, I’ve noticed many people are asking questions about the Bipap. Many topics come up about the bipap machine, such as:

How to adjust to using them.

How to breathe when you have stuffy nose.

How to qualify to have a bipap.

These are just a few of the questions I’ve tried to cover in my blog. Today I put together another video for your viewing pleasure! This one covers the bits and pieces of a bipap machine and the parts to order from your Durable Medical Equipment company who prescribed the bipap machine for you. You can request these replacement parts every 6 months but be sure you check with your insurance company just to make sure that this is their policy too. Ask if there is a co-pay for ordering these parts.

This video is twice as long as the first video I did a few days ago only because I wanted to explain various parts of the bipap machine itself. But this video, I didn’t film in HD quality. It still looks good though! Yea me! I hope you like it. I’m kinda getting the hang of it and I’m starting to enjoy them.. hehe!

Here’s the video for you. I’m pretty goofy in it but enjoy it anyway!!! http://youtu.be/poPtM5GnXzA It’s about 18 minutes long. Enjoy!!

A quick fix… MacGyver style..

Living On Oxygen for Life

Wouldn’t you know it. Just one day after I call to order replacement parts for my bipap, something happens where I need a spare part. Unfortunately, I had no spare part. So, I had to MacGyver up and find a fix. Now, I know you are wondering if I’m up to the task of becoming a MacGyver. You know the TV show where he fixes things in the knick of time to save the world from odds and ends that just happen to be lying around near him. A gum wrapper, a toothpick, or a spring from a ballpoint pen would do nicely, right? Well, none of those things would help in this situation. But never fear! MacGyver girl is here!

I was getting ready for a nap, just like the one seen here in this picture:

Notice that Rocco always makes sure he is comfortable next to his mommy. Don’t look too closely. It’s so NOT a glamorous picture of me. So, where was I? Oh yes, getting ready to put on my bipap mask to lie down.

When I put on my bipap mask, I usually turn on my bipap machine first. Then I slip the head gear over my head and strap it on around the back of my neck to connect to the front of my mask. I connect my oxygen next but when I did that, I noticed some air blowing on me that wasn’t coming from the part of the mask that is suppose to blow out some of the exhaled air. I was like, “H-E- double cheese sticks! This can’t be happening!” I was tired and didn’t want to have to do anything but sleep. You know how that is. When you are tired, you’re tired!

I looked the full length of the hose of my bipap. Didn’t see anything. Then I ran my hand down the length of the hose and that’s when I felt the air coming out and saw a good sized hole. Here I am pulling my mask off, putting my oxygen back on to go in search for a spare hose which I could not find. Nerts! About twenty minutes later, I give up the search and go for my handy dandy, fix everything duct tape. Yep, that’s right. My house is NEVER without duct tape for this very reason. It generally will fix everything I need it to fix. It’s so vital to me that I even pack a role of duct tape in my suitcase for vacations. Really? Yes, really. K just rolls his eyes when he sees me packing the duct tape for vacations. I just tell him that someday he’ll thank me! You just never know, right?

Taping a hole closed is a little tricky on this hose. I used my finger nails to wedge the tape in-between the ridges around the hose to ensure a tight seal. I now have a patched up bipap hose! Yes! I could resume nap time! I’m still awaiting my supplies. It’s been about 3 days now and there’s no telling when they will come. I just wanted to order them before the new year because the insurance deductible restarts on the first of January.

Don’t forget to email me for the next “Need a Hug” afghan giveaway! Check this post for the rules. The first afghan has been sent out to Gerard. Congratulations sir! Follow my blog to keep updated with email notification of my new posts. HAPPY NEW YEAR!!!

What do you do when your power goes out when you use a bipap?

Living On O2 for Life

Thanks to one of my readers, I’ve become more aware of how to vulnerable we are when our power goes out. Blackouts, brown outs and even weather related storms and heavens to betsy even weather disasters where the power can be out for days or longer. If you live in an area where your power goes out often (we have rolling brown outs during the summer), you should have a back up plan because power outages can happen any time of the day or night.

Having the power outage at night is a pain. Imagine yourself all snug in your bed when all of a sudden, your bipap cuts out in the middle of inhaling a breath. I’ve been there and experienced that. Now, I can NOT sleep without this machine. So, I get up and find my handy flashlight and cellphone. First order of business is to call the electric company to report the outage. I just know that you have already notified them that you use oxygen and require electricity which should put you on the “Priority Service List.” Then, use my cellphone to read an ebook and pray it won’t take too long.

But what if it is more than a simple storm that zapped a transformer? What do you do? I can think of a few options. The first one is to call someone you know who has  power and lives close by to stay there. Make sure you pack your medicine and whatever you need to feel comfortable and to keep your stress level down. Stress has a way of wearing down your immune system and we don’t want that.

The other option, thanks to Cindy for bringing this to my attention, is a deep cycle marine battery back up for your bipap/cpap. I found a really good instructional website that can help you understand how this works and get you started on preparing for the need for a back up system. You can read about this at: http://www.phcentral.org/features/contingency.html

Please follow my blog! You can email me at goredrider@gmail.com about oxygen or if you have questions about anything. I really do read my emails. People who read my blog are important to me.

How I clean my bipap mask…

Living On O2 for Life

So you use a bipap and you want to clean your bipap or you just want to see how someone else cleans their mask. You’re in luck! I finally took some pictures for you. First, let me introduce you to my bipap mask.

Here you can see my bipap mask with the head gear attached at the top by slot openings and at the base of the mask by little pegs-n-grooves (my name for this closure type!).

Cleaning the Bipap Mask: I first take apart the connected tubes and head gear. I inspect each part for wear and tear which is very important. You don’t want to end up having the mask break in the middle of the night. Trust me.. this has happened to me several times. Some of the weakest parts on a Bipap mask, that I’ve noticed over the years, are the top forehead bridge section – where it’s adjustable and the places where you connect the bottom portion of the mask to the head gear.

Here is a swivel tube that I connect to the end of the Bipap tubes. It allows the mask and the big hose, coming off the Bipap machine, to swivel. Allowing more freedom to move your head without having to adjust the hose at night.

This is the tube used as the oxygen port for my Bipap mask. The arm on it is where I attach my oxygen tubing and it also swivels around for convenience of movement.

I clean all these pieces of my Bipap in mild liquid dishwashing soap. I don’t use antibacterial soap. I fear that the chemicals used in these soaps could harden the silicone in the mask making it weaker and fall apart. Remember, most insurance will pay for replacement masks & tubing every SIX months. but you have to call to request them from the DME company that services your Bipap.

When I wash my Bipap mask, I use just my hands in warm sudsy water in a small basin (NOT MY SINK!). I gently bend down the inner soft blue silicon cushion and rub my finger tip down the inside between the thin outer membrane of the mask and the gel cushion. Don’t push or use fingernails to scratch anything. You don’t want to tear any part of the silicone gel cushion. When I’m done cleaning the mask and tubes, I rinse each piece in cold water. Make sure all soap is rinsed off. Use a paper towel to dry off each part. The mask is the hardest to dry. I have to bend the blue gel cushion down gently and slide the paper towel in the space to absorb most of the moisture. You won’t be able to get it all. Today, I used my hair dryer on COLD air and on the LOWEST setting to dry the inside of the mask. Make sure, if you try this, that the air from the hair dryer remains cold. You can also let it air dry. For me, I tend to need my mask for naps. So, air drying is ok but it is time consuming. Thus, the reason for the hair dryer. It’s really important to get the Bipap mask dry. You don’t want to have mold or mildew growing somewhere where you breathe from.

To disinfect the bipap mask: Soak the mask in a solution of one part white distilled vinegar to four parts water for 20 to 30 minutes. Rinse in cold water and then dry with paper towel and then air dry. I do this every so often.

I know this is bad of me to admit this but I don’t clean my mask as often as the guidelines suggest (once daily). I’m not neurotic about cleaning my mask. If I see that it not clean, then I wash it. My best advice is to keep your mask and Bipap machine clean and in good working order. Keep everything dust-free and off the floor. Check your filters often so you know when to replace the paper filter and wash the sponge filter. Keep yourself healthy!

My experience with the Bipap machine…

Living On O2 for Life

If you use a bipap machine, like I do, this post is for you. I’ve been using a bipap machine since 1993 which is a pretty long time. All sorts of sleep studies had to be done to get qualified for a bipap machine from my medical insurance. Then came the difficulty of getting use to wearing it and breathing with it on. My poor sinuses went through a tough time for a while. Then the whole issue of getting over the thoughts of “Oh my gosh! My health is getting worse!” along with the whole anxiety from the fear of sleep apnea. But once you get use to sleeping with the machine on, you’ll realize when you wake up and go about your day, you’ll find that you will have more energy and feel better.

Some of the issues I’ve had with my bipap machine are written below along with the things that I do to help me resolve the problems.

• Feeling claustrophobic while breathing through the mask. I use the mask shown in the above picture. It covers my entire nose. Just above the white tube that has the oxygen port (where you attach the oxygen tubing), there is a vent that allows CO2 to blow out of the mask. Make sure this is not covered while you are sleeping. Also, I have a small 12″x12″ box fan on my dresser pointed directly at my face. This helps with claustrophobia and it seems to help with keeping the air within the bipap hose cool. I personally do not use the humidifier with my bipap. The only time that I have used it was when I was sick with bronchitis. It helped keep me from coughing so much.
• Too warm or too cold air flowing through the mask. If you have warm air flowing through the mask, check to see if the HEAT button is not pushed. On my machine, it will show HEAT on the screen if it is turned on. Sometimes my cat will walk across the machine and will turn it on without me knowing it. Darn that cat!!! You can also try my fan idea too. However, I keep it pretty cool in my house by running the a/c at 72 degrees. It really helps me breathe easier with cooler air. My husband hates it but he tolerates it because he knows it helps me.  If it is wintertime and the air is too cold, turn on the HEAT on the machine. If you don’t have a heat capability on your bipap (older model machines don’t have this), what I use to do is tuck most of the 6 foot tube under the covers of my bed with me. The covers act as insulation! It helps but it’s not perfect.
• Stuffy nose problems. This is the worst! The only thing that I’ve found that truly works for me are the Breathe Right Nasal Strips. (no I don’t get paid to suggest these…) If you want to try them, here is a link to request a free sample of them and a coupon: Try Breathe Right Nasal Strips!
• Anxiety. It was difficult for me to get use to the bipap machine. I have a Synchronized/Timed unit… meaning that it breathes basically at my rate but it has a backup Breaths per Minute setting that if I, for some reason, stop breathing or start to slow down my breathing below my setting of 22 bpm, then my bipap will kick in almost like a respirator. Getting use to the pressures of the air flowing in and out of my lungs was a challenge. For a while I had to use Xanex but now I’m a pro at using my bipap and couldn’t be without it when I sleep or need to do some serious resting while awake to give my lungs a break. The secret to a successful night of sleep with a bipap is relaxation.

I’d really like to hear from you. What are the experiences you are having with using a bipap machine?  There are different types of masks such as a full mask that covers both nose and mouth for those who like sleeping while breathing through their mouth, nasal pillows (my least favorite… too much direct air pressure into the nose), and the nose mask. I’ve even used my bipap in my car during a roadtrip! Who doesn’t like roadtrips???

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