Life on Oxygen

Hello, my name is Christine. I use oxygen 24/7 and I am now 53 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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[I update my age every year on this post]

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The Next Step

My life has changed since I returned home from vacation. It has been very challenging. It crept up on me. I don’t think I did anything wrong to make everything change. I knew this was coming but I didn’t think it would be so abrupt.

I went from sleeping and napping with my Bipap, to needing my Bipap to drive down to South Padre where we vacationed. While on vacation, I used my Bipap when I made dinner. When I saw a Neuromuscular doctor during the Summer, the doctor suggested a Trilogy machine. At the time, I didn’t think I was ready for that but when I returned home from vacation, I was thinking differently.

I started out using a spare Bipap machine in our family room when I was sitting to watch tv during awake time. I would take it off to make dinner and clean the kitchen. While in the kitchen, I would have trouble breathing. I got short of breath and had to take breaks with my Bipap on. I was exhausted when I finished cooking and cleaning up dinner dishes. I really started to struggle as the next couple of months went by. It wasn’t until I was in the bathroom and had to call for my husband to come help me out of the shower.

Having to need K to help me out of the shower was scary for both of us. My skin was turning grayish blue and I was desperate to get back to my Bipap machine. I had my oxygen at 10LPM and that still wasn’t enough. I went from 8LPM to 10LPM within 2 months time.

Because of this rapid change in my breathing, I decided to go ahead and get the ball rolling on getting me a Trilogy machine. I have it now. It’s a little awkward having to need to wear the mask all the time. Since the respiratory tech didn’t have the hose and mask that I wanted, I use the same mask & 10ft hose as the ones I used with my Bipap. The ten foot hose is handy when I want to park my Trilogy-on-wheels in a central location of my kitchen. This allows me to walk all over the place in the kitchen, dining room and into the laundry room. It’s weird wearing my Bipap mask all the time and being connected to a machine on a IV-like pole that has wheels. I’m just glad that most of my house has wood and tile flooring. Rolling it on a rug take more effort and tires me.

So, now I get to look glamorous! I pretend I’m acting as if I’m doing a Mars exploration experiment. Earth is Mars! The Trilogy is part of my space suit equipment! haha!

Using this machine is not difficult. It’s just requires me to figure out how to do things differently. Now I’m having to drag around a pole and try hard not to get my canula twisted around it or myself wrapped up in tubing. The pole is pretty darn sturdy but having the oxygen tubing attached to the machine wasn’t working for me. So, I moved it back to my mask’s oxygen bleed-in tube. You can see it in the picture shown below.

My biggest hurdle right now is trying to figure out how to wash my hair. I can’t be in the shower without the trilogy on and the trilogy can’t get moisture inside it. I can’t shower with just oxygen on anymore. The last time I tried it was a disaster. Ugh! I got as far as washing my hair and I had to get out. *cue K running to help me*

I would like to hear from the people who use a Trilogy full time. How do you manage to wash your hair if you can’t take this mask off? If I can’t figure it out, I’m going to have to ask for help from K and I don’t want to add one more thing to his growing list of things to do. I want to be as independent as possible.

I had my first outing with my trilogy machine. We now have a lot of stuff hanging off my wheelchair. Two oxygen portables hang off the handle bars and the trilogy sits in my lap because we haven’t figured out a better way to transport it without K having to carry it. Leaving the house wearing it was awkward. I internally gave myself a pep talk once we exited our vehicle. People stare. I know that and it’s fine with me. I am still in that stage where I’m accepting this new phase of my life. I’m doing ok with it. It makes my life a little easier in the ways that I need it to. So, I’m thankful.

What matters is that I’m still alive and I can still smile. It’s hard to eat with this on and I have to use a straw to drink from a cup. But, hey! I’m still alive!!!! Hooray!


Trilogy Evo Machine

My new life’s adventure.

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. 

I AM HERE!

Doctor appointment day!

Yes, it’s me! I’m still here kicking the can down the road. I’m still alive. Hooray! Go me! This month has been filled with a lot of doctor appointments. K drives me everywhere now. So much has changed for us because of my health. K carries a heavy load of responsibility to care for the both of us and he does A GREAT JOB! 

Years ago we discovered that my ascending aorta was slightly dilated. It’s been a “wait and watch” sort of medical issue. That was back in 2010, give or take a few years. Now, it’s gotten to the point where I had to see a specialist cardiologist who deals with surgical interventions of Aorta Aneurysms. We knew what the doctor was going to say before we even went to the appointment. However, knowing what the doctor will say and actually “hearing” it, puts the fact of knowing that I’m not a surgical candidate and there’s nothing they can do for the aneurysm, has a finality to it. But you know what? I’ve heard that before about a lot of my health issues. No big deal. I can deal with this. Sure, my heart skips a lot and I have an aneurysm… that kinda sound bad, right?… my primary cardiologist feels that my cardiac problems are NOT life-threatening. A big WHEW! I’ll take that answer.

I’ve slowed way down and that’s ok! I can still make dinner and clean the kitchen most nights. So, *thumbs UP* I’m up to 8LPM of oxygen 24/7 and still use my Bipap when I sleep or if I need to power up during the daytime. In fact, I’ll be going to my pulmonologist next and then to a “special” pulmonologist after that. K and I are going to see if I would benefit more using a Trilogy machine instead of just the basic Bipap. (NOTE: if you own one of these machines, there has been a recall for certain ones. Find out more here.) A Trilogy machine is basically one step under a ventilator but one step above a Bipap machine.

Our long vacations are over. I just use too much oxygen and my health is too precarious to risk a long vacation. Our vacations were usually about 10 days which also allowed me time to rest when we got where we were going. It is just too much for me now. However!!!! K surprised me the other day and told me he was secretly arranging a trip up to see my family! I’m so excited! It’s a 3 hour drive and I’m pretty sure I can handle that. We’ll be taking my pups with us. 

Unfortunately, I won’t be able to get my 2nd covid booster shot before we go. I’m a little nervous about that but my family have all received their shots. So, I’ll be as safe as I can be while there. 

It’s getting really stinkin’ hot here. I think we totally bypassed Spring and jumped right into Summer. We’ve already hit 99 degrees. So, let’s stay safe out there. Carry water with you if you have to go outside. Be well! =o)

Coming together in a time of need in our house.

Living On Oxygen for Life

You probably are thinking this post is about the horrible Coronavirus that is going around and maybe it is a little bit. However, that’s not my main focus here because I’m sure we are all needing something else to occupy our minds for a little while. So, while this post may seem a little scary, I truly feel it can be uplifting as well.

Let me start at the beginning and tell you what has happened here in our house. It all started on January 14th, 2020. K and I were getting in the car about to drive off to select the vanity top stone to complete our bathroom renovation. Remember that little pipe leak we had last August 2019? Well, it still hadn’t been finished yet by January. We had turned the whole situation into a bathroom remodel and it prolonged the project. What a chore that was. =o) Anyway, as K got into the driver’s seat of our car, he just suddenly leaned his head on the steering wheel and then started looking around. He told me that something wasn’t right and that he was starting to feel dizzy and the world was spinning. At first, I thought it was just low blood sugar. I encouraged him to go back in the house and eat something. K is a man who will power through any illness. He’s a tough cookie and he doesn’t complain unless something really serious is happening. So, yes, this was scaring me.

K ate a donut and drank a little soda (I know, not the food I was hoping he’d pick to eat) and he decided we could still go to the stone place but I would drive. He did NOT tell me how he felt other than he was “fine.” We were in the stone shop and we picked out the stone that we wanted as our vanity top but I was watching him the whole time. It was apparent that he was NOT “fine.” So many things were going through my head. A lot of self-doubt. How am I going to be able to care for him? How was I going to drive him everywhere? What about his job? Are we going to be financially ok? PLEASE, PLEASE God let him be ok. I was in panic mode. I had not prepared myself to be the caretaker of both of us. Maybe it’s just a short bout of something but I was wrong.

I called my sister right away. She’s a PA and she thought it sounded like he was experiencing Positional Vertigo. She recommended doing some Vertigo excerises (Epley Maneuver) that I looked up on YouTube. Meanwhile I got him an appointment with our family doctor asap who diagnosed him with the same thing as what my sister thought it was and recommended the same home therapy. It didn’t help and he was walking as if he was on a ship at high sea, holding the wall to walk. He would lie on the couch holding his head. Every person is different with Vertigo. Some recover quickly. Some have it for a long time. The doctor, at first, thought he would be better in a week or two. He wasn’t. Paperwork had to be filled out to get him a leave from work and for the short term disability that we had luckily purchased (HIGHLY RECOMMEND!).

So after nearly a couple of weeks, he was referred to a Physical Therapist. I was still driving him around. I was exhausted. I had done more things in that time period physically than I had in a long time. However, he was starting to show signs of improvement.

He was home for six months from Vertigo. In a twisted way, it was somewhat of a blessing. With Covid just ramping up, he was home with me. It was the longest time we’ve ever spent together and it taught me a lot of patience and strength. He has been my strength when I needed it but I found that I could rise to the challenge of the occasion when called upon. It was stressful and so not easy but we learned a lot about our strength together as a team.

He’s doing so much better now for which I’m vastly thankful for. I kept thinking in my mind that it was suppose to only be my body that falls apart. However, everyone gets old and bodies wear down over time. I just wasn’t ready for his to trip me up. It was shocking. Life happens. God was watching out for us.

A New Adventure Awaits!

Yesterday, I spent a good amount of time at the beauty salon. We’re talking about three whole hours. It’s not my stylists fault we spent so much time doing my hair. It’s my HAIR’s fault. Ok we gabbed a lot but I was also born with thick hair which happens to be long and now it’s getting gray. *gasp!* I know… Me? Gray hair?? Inconceivable! It’s ok. Having gray hair means that I made it to 51!!! Soon to be 52!!! Woohoo! Go me! Rock that GRAY hair.

Ok so maybe now you’re thinking that if I’m cool with gray hair, then WHY am I getting it colored?? My answer is: I’m going to a WEDDING!!! Not just to any wedding, it’s my little sister’s wedding and I’m going to be in pictures. Not only in pictures… my sister wants me to be a bridesmaid!!! My last post shows my dress I’m wearing to the wedding. Whether or not I’m going to be a bridesmaid will depend on my energy level. My sis wants me to be one but she is leaving it up to me and how I feel at the time. Right now.. I’m like.. heck yeah.. sign me up! But it’s smart to be cautious.

So, I’m going on another adventure and yes I will be taking my new rubber chicken. My previous chicken passed away. His neck broke. So so sad. *sigh* Klondike was so cool. Remember? He went to Germany, France, and so many more places. Now, though, I have a new one, slightly smaller but still packed with a lovely scream. All I have to is squeeze his tummy and Birdee will scream like nothing you’ve ever heard. haha! I can’t wait for my family to meet Birdee. I know it sounds weird and maybe a bit juvenile but he’s got a passport and a backpack and he’s willing to travel. He’s one cool chick… er.. dude chick.

What was super nice about yesterday was that before K left for work and before I woke up in the morning, he had cleaned and brought in my MacGyver’d portable oxygen cart (the one I made that carries two portables). He also prepped my vehicle with a big pillow that I drive on (I’m short.) and he filled up the tank with gas. He even made sure I had tip money. Ohmygosh! So unexpected. I didn’t ask him to do any of this. He even met me at the salon about an hour before my hair was finished and when he was done working to make sure I was ok. He also refilled one of my liquid oxygen portables while he waited. He didn’t want me to run out of oxygen.

He knows that my breathing has gotten much worse. So he’s trying to make everything easier and more enjoyable for me. He knows how much I want to go to this wedding. He’s a blessing to me. My next item on my wedding prep to-do list is GET MY NAILS done!!! I have to space all these events out because I get tired from them so easily. It takes longer to regain my energy. But by the time I’m ready for the wedding.. I’ll look FABULOUS!! *cheesy smile*

After the wedding, when I come home, I’m scheduled for medical tests. My 6-minute walk, labs & echo didn’t look great which means I get to have a Right Heart Cath and a CT Scan sometime next month. The doctor already suggested getting a shower chair. YAY more shopping! haha!

Life is always interesting here. I hope everyone is well and being safe. Love to you all.

Life Has Changed!

An opportunity has come along and I’m grabbing it with all I’ve got to give myself a chance at some fun and excitement.

Everyone knows how bad Covid has been. I’ve been stuck in my house for over a year and I’m finally starting to get out in the public. Having Pulmonary Hypertension along with other breathing and heart issues, K and I have taken this Covid19 seriously. That means, I didn’t leave my house unless it was for my monthly labs. Even at the height of Covid19 lockdown, my doctors had me only going every other month for labs instead of monthly. Naturally, that’s when my lab results started to look concerning. So back to every month I went. I finally got smart and made appointments for the lab work. Less waiting around.

Now I have an exciting event to go to this year. My little sister is getting married!!! She wanted me to be the Matron-of-Honor but I had to pass the torch of to another one of our sisters. The stress of being involved in the wedding party would be too much for my health. As sad as this makes us, I decided to go all out and dress up and have fun with attending. It will require some traveling which means our dogs will be going with us! Roadtrip!!!

K took me dress shopping. He was great! We had me in my wheelchair looking for the perfect dress. Let me tell you… it took a while. Since I have scoliosis, dresses don’t normally fit very well. After I found the dress that I liked, we decided to take it to a place who specializes in altering formal wear. The picture above is the dress before it has been completely altered. It’s a little long and it needs taken in on my left side at the strap and bodice. Darn that scoliosis!

I’ve never done this with any of my clothes before. However, now that I’ve experienced how easy it is, I’m asking myself why I haven’t done this before???

I hope that everyone is doing well. I pray that everyone is staying active and as healthy as you possibly can be. *hugs*

Adapt and Overcome.

Living On Oxygen for Life

Adapt and Overcome!

How creative do you get when you are faced with a new challenge in your life? A year ago, my husband (K), bought us a new clothes washer and dryer. We wanted the largest load capacity we could afford. We didn’t realize how large the washing machine would actually be. Or should I say… how deep the machine would be.

I’m actually 5’1” and to reach inside the machine to unload or to rebalance a load for the spin cycle is virtually impossible. So I had to come up with a new way of doing laundry. I found what I needed in my kitchen. In fact, I already use them to get things down from the upper cabinet. I just love Club Crackers but K always stores the on the top shelf.

Kitchen tongs are incredibly versatile. It’s a perfect tool to use for extending your reach inside both the clothes washer and dryer. Just think of me as a little MacGyver! lol! Stay well and stay home to be safe. *hugs*

When unexpected things happen…

Living On Oxygen for Life

I know… I know… It’s been since January of this year since I added a post to my blog. SOoooo much has happened since then. K had surgery on his eyes…. AGAIN, and his momma passed away which had hit us HARD to name a few. I even started a new heart medicine. It’s been a year full of challenges so far but we are taking each challenge head on. Battling them like you would expect us to do. Go team!

Yesterday, (Tuesday) brought us a new challenge or should I say frustration. K and I had a doctor appointment in Dallas that had us getting up at 5:45 IN THE MORNiNG.. Yeah, I know.. Me getting up that early is unheard of. I kid you not. I tend to get insomnia a lot, especially when I have somewhere important to go the next day. So, I don’t get much sleep the night before I have to wake up. K is always telling me, “Go to sleep Chris.” Ugh! I wish I could.

Well, I got up on time. I know, I’m very impressed with myself. I’m even ready to leave on time. WHAT???? Yeah… I’m shocked too. K filled both of my liquid portables for me AND took care of our dogs and cat for me. Awww. I know, right? He’s soooo sweet.

In my van, I have a 75lb liquid oxygen reservoir which was filled on the day before at 1:30pm (Monday) and K went out to the garage to strap the tank in. He also took one of my liquid portables out to my van so I’m only having to carry one portable when I’m ready to leave. He’s thoughtful like that. Well, he came back inside and told me my van reservoir was bone dry. He even led me out to the garage and pulled it out of my van with one hand. I was SO mad. Even though I have 2 portable that would last me 4 1/2 hours on 6LPM which is 2LPM less than my normal 8LPM I usually need, we can not risk driving all the way to Dallas with no backup, my reservoir, which I totally depend on. That means K & I had to cancel my appointment and I just hate doing that.

The inconvenient part of this story is that I called my oxygen provider and told them what happened. They were extremely nice about everything. They agreed with me that the reservoir should not have bled dry within 18 hours of being filled, even if the thing was turned on, which it was (on 6LPM) by no fault of ours. They told me they would bring me a replacement today (Tuesday) because I told them that I missed a doctor appointment this morning in Dallas. They even apologized but they didn’t show up today and I ended up waiting ALL day for them and I was exhausted even with getting a short nap while K waited for the phone call that they were support to make to let us know they were on their way.

So that was my Tuesday. They better show up tomorrow (Wednesday). Grrr…. =o) I just hope I don’t have to wait around all day again. You can count on me calling them first thing in the morning. Being on oxygen 24/7 and not able to function without it makes it a really scary to have things break on me. Thankfully, K is usually with me when we leave the house.

My next post will be good news! YAY! I hope everyone is having a great Summer. It’s scorching hot here (99 – 100 degrees this week) and I’ll be indoors a lot! Have a great day!!!! OH! And Willow, my puppy is just ADORABLE and I love her!! (and Rocco too!)

I need advice… and an update.

Living On Oxygen for Life

I’m alive!!! I know… It’s been since November 2018 that I’ve written on my blog. There’s huge reason for that. We all know that the holidays are difficult being that it’s stressful and cold, not to mention, it’s also flu season. So, I stayed indoors a lot. K got me a PUPPY! I love her but she is super energetic and wore me out for the first month. Who am I kidding… she still wears me out but it’s not as bad as it was when we brought her home. FYI: She gets car sick. UGH! For those of you who follow me on Facebook or Instagram know most of this. In fact, if you don’t follow (which is totally ok!), I have a section down on the bottom of the right column of my blog that shows my Facebook and Instagram feed! Yay how convenient, right? No need to have the app!

I also ended up in the hospital in January due to severe shortness of breath and inflammation of my lungs and the doctors couldn’t figure out what caused it. That is so frustrating, am I right? I’m sure you can see me rolling my eyes. haha! When I got home from the hospital, I felt good but a week later, I started feeling worse than when I went into the hospital. You can imagine how nervous and scared I became. Don’t worry though. I put my thinking cap on as well as had a CT Scan with Contrast and a Echocardiogram that showed NO PULMONARY EMBOLISM (Yay!) but it did show that my Left Ventricle Ejection Fraction (LVEF) was 35%. Normal is 55% – 70%. That means my left ventricle (bottom left chamber of my heart) is have a hard time pumping out oxygenated blood to my body. YIKES!

I noticed with my SOB, since my doctor increased my Thyroid medicine, Syntroid, back in November, my breathing became much worse over the course of 2 months time. So, without telling my doctor after I started getting worse again in February, I split the pill in half. I do NOT recommend doing medicine adjustments without discussing it with your doctor. I plan on telling him. Within a weeks time, I started breathing better. K and I started becoming optimistic about my future again. My cardiologist started my on Entresto. He sent my home with samples and asked me to ask my Pulmonary Hypertension doctor to check into any possible interactions it might have with Tracleer/bosentan because he’s not super familiar with Tracleer. It took my PH doctor nearly a week but she gave me the green light to start taking it. I’ve been on it for a week and a half and I think it is causing a moderately annoying side affect of itching on my head, face, shoulders and the back of my neck. So, now I need to call my cardiologist about that. *sigh*

But all of this is NOT what I need advice on. Sorry! I’m getting to it. *grin*

Last Tuesday, I received a phone call from my DME company, Lincare, who services my LIQUID OXYGEN. They told me, as of April 1, 2019, they are stopping all liquid oxygen service. I freaked, even though I was warned by one of my wonderful blog readers, Cindy. Thank you so much Cindy! Lincare gave me the names of 4 companies in my area who still service Liquid Oxygen. One of which I’ve used before years ago and one of them is a Nationwide company called Apria.

What I need help with is: Can any of my readers, who have had experience with Apria, tell me your thoughts of this company. If you have an opinion, please don’t just say that you like them or don’t like them… Please tell me why in the comment section. This could potentially help so many people who use Lincare for their liquid oxygen and have high flow oxygen use that won’t typically benefit well from switching to e-tanks for portability purposes.

To go on vacations, we loved Lincare because they also are a Nationwide company who arranged refilling my liquid oxygen reservoirs at our vacation destinations as long as they had a shop there. Selecting a local company for my future liquid service would definitely make it difficult for any future road trips which is crushing to K. Ok, me too but K REALLY loves the beach!

So, if you can help me with your opinion of Apria, I’d really appreciate it. Thank you so much! *HUGS*

Make, contain and freeze meals… our new adventure!

Living On Oxygen for Life

Hello everyone! Breathing easy, I hope! On this blog, I have written so much about so many things that it’s actually hard for me to remember not to repeat myself! I’m assuming you are like me and want to read about new things from your favorite author. Am I right? Did I just call myself your favorite author? Hmm.. do I even qualify as being an “author?” Well, I do write this blog but I’ll let you decide on if I’m your favorite. HAHA!

On Monday, K and I dove into a new adventure. Before I start anything new, I research the heck out of it. Pinterest is one of my favorite places to go for information. Then, I move on to Google search! Though, SIRI (on my phone) could find me the information I need faster, I’m the type to do the work myself. I think I learn more that way.

K and I decided, after months of me suggesting we should try this, to prepare a bunch of meals to throw in the freezers for the days where neither one of us are up to cooking. I do most of the cooking in our house and sometimes.. ok, a lot of times, I just don’t have the energy to make a great meal. Since I switched from using an inhaler to using a nebulizer recently, I’ve rediscovered some lost energy. I’m slowly starting to get more done around the house.

Word of warning: Don’t try this until you have one full day of time to cook and make sure you have everything you need before you start. I made a simple list of the order of cooking I wanted to accomplish and stuck it where it would always be right in front of me (on the face of the microwave!) We started with a half empty freezer out in our garage. Yes, we have a separate upright freezer. K bought me an upright freezer because he knew it would be difficult for me to bend over and search through a horizontal freezer. I also did an inventory of what can goods we had for the recipes that I chose to make to fill the freezer. By doing this, I could make a grocery list to make sure that we had all the food we needed. We only wanted to use fresh ground beef and fresh chicken because you shouldn’t thaw meat to cook and then refreeze it. You only want to freeze it once for quality sake.

I knew I had to save K some running around because he spent the day before at his mom’s house helping her with her yard work and her pond. I ordered all the food through Walmart’s Grocery pickup service. All K had to do was pick it up on Monday morning before we started cooking. I had already ordered and received from Amazon.com the foil pans that come with foiled cardboard lids (5 lb containers) and the Reditainer Extreme Freeze Deli Food Containers (with Lids, 16-Ounce, 36-Pack) to store our prepared food. We were ready to rock!

The beginning of our meal prep adventure!

Once K unloaded the food, he proceeded to tell me that he was going to take a shower, which he did, and then he took a 30 minute nap. I was like, what? Wait a minute! I kinda panicked but he reassured me that when I truly needed help, he’d be there. I knew he was tired. It’s the beginning of the holiday season and he really needed the sleep. So, I got started with cooking the meat. I bought 15 lbs of ground beef and 2 packages of 6 large chicken breasts. I think my brain didn’t register how much ground beef could actually fit in my largest frying pan because I had to cook it in 3 separate batches. I had to cook the chicken in two batches. For the chicken, I just boiled them with 2 chicken bouillon cubes, salt & pepper. I used the broth from the first batch of chicken (added a little more water) to cook the second batch of chicken. I also reserved the broth for use in a few of the recipes we were making. Don’t let it go to waste. We ended up freezing the remaining 2 cups of broth! You could use it in chicken enchiladas!

Cooking the meat!

Half of the cooked beef!

By the time I was done cooking the first wave of chicken and beef, I woke K up from his nap in the family room recliner. He’s my heavy lifter and chopping guru. He use to be a Sous Chef in his former career. So, he’s fast with a knife. Really fast. So fast that I’m kinda jealous. I’m too accident prone with sharp things to even attempt to compete with his skills. He was in charge of chopping the onion and all the chicken. Thankfully, I kept the empty milk jug gallon I just finished and used that to funnel all the ground beef grease into. NEVER pour that stuff down the drain.

Beef grease!

By the time the second batch of ground hamburger was finish, I was started to get tired. Unfortunately, as I dumped the cooked beef in my jumbo mixing bowl, I dumped some of it on the kitchen floor. Guess who got to clean up that mess? Yep, my dog.. Rocco to the rescue. Ugh! It’s ok, I had plenty of beef to share. K decided to make the leftover cooked hamburger (about 2 pounds) into taco meat to freeze into 2 separate quart sized ziplock bags. Once we had all the meat cooked and the onions diced and sautéed in a little of the beef grease (K’s idea!), it was time to start preparing the marinara (in my largest fry pan that I used to cook the beef in) and the chili (in the crockpot). It was 2 hours later when K went to stir and taste test the chili, that he told me what I forgot to add… yep, the chili powder. Oops! Where was my brain at THAT moment? I’m not sure how good the chili will taste but I’m hoping by the time we thaw and eat it, I can tweak it to taste better. haha! I may just stick tater tots & a ton of cheese on the top of it and bake it in the oven on the days we thaw some out. Chili is so versatile, isn’t it? *wink*

Marinara for the Lasagna!

Packaging up the lasagna in 4 foil pans! SIDE NOTE: Yes I crocheted those pot pads!

BONUS NOTE: Make sure you pre-cook enough lasagna noodles for the pans you’re preparing! I cook mine to where they are just pliable because I’m freezing the pans of lasagna. I don’t want the noodles to be mushy when they thaw. I don’t prebake the lasagna before freezing either. I definitely misjudged how many noodles I needed. So, it took two batches. Overall, I think we did pretty good. We worked well as a team without killing each other. K let me be leader in this adventure which was nice. I really wanted this to work. By the time we were done, I was super exhausted. My legs & lower back hurt. We started at 10:30am and finished around 3:30pm. I think I shocked K. I don’t think he thought I would be able to pull this off. I showed him, huh? *wink* And then, I realized I had to get up at 8:30am the next morning for a doctor appointment. UGH! haha!

I was in charge of making space in our freezer. I was able to free up 2 shelves because the freezer was already half empty (or half full!). K was in charge of carrying all the prepared food to the garage and loading the freezer. He only sent me out there because we had to squeeze in one more larger pan of Impossible broccoli pie. I love that stuff. So, I made sure to fit it in the freezer without blocking the vents in the freezer. You have to have enough room the freezer for the cold air to circulate to maintain proper freezer temperature. Overall, we spent $135 on food for this project. We already had about half of the canned goods we needed. The meat alone was about $65. Then the containers cost about $33. The plastic containers are reusuable. Here’s our freezer now:

Lots of meals in our freezer!

The list of meals we made on Monday is as followed:

Impossible Broccoli Pie – 1 big pan made
Broccoli, Chicken & Rice Casseroles – 4 9×5 pans made
Lasagna – 4 9×5 pans made
Taco Soup – saved in 16oz bowls (didn’t count)
Chili – saved in 16oz bowls (didn’t count)
Burrito Pie – 3 9×5 pans
Taco meat – 2 1-quart ziplock bags
The remaining diced cooked chicken breasts in several quart-sized ziplock bags to make chimichangas or chicken quesadillas.

Overall, this adventure was a success and it proved to me that I can do something this major as long as I have some help. Yes I was very drained and I had to sit down a couple of times while I spooning food into containers or writing labels. Would I do this again with help? Yes I think so. I may try a few different recipes though. I don’t think I would try to make so many recipes at once again but K thinks we could do just as much next time. There are somethings I would PRE-MAKE ahead of time the next time we do this. Like, precook and then refrigerate the beef and chicken the day or night before. That would save a lot of time if I could get at least half of the meat cooked ahead of time. I’ll try to get some recipes that I used on my blog later this week.

I hope you enjoyed this episode of This is Christine’s Life! lol! Stay warm everyone. It’s getting cold down here in Texas.

When I have a surprise burst of energy…

Living On Oxygen for Life

Happy November everyone! I’ve been busy the past week. For the last 3 days I’ve had a burst of energy. I took advantage of it and did some cooking everyday. I started the first day with my trusty crockpot and cooked 2 whole chickens at once! The peeling & chopping of carrots, garlic cloves, & celery took a while but it was the chicken pickin time that took the longest and wore me out. I saved the broth and cut up the rest of my carrots and celery and put those in the fridge for later.

The next day, I decided to make a Canadian Bacon and Swiss quiche that my older sister had made for us when K had his eye surgery and she came down to help me. She told me she used the Betty Crocker recipe for Quiche Lorraine but used Canadian Bacon instead. I tweaked that recipe by using 5 eggs and only 1 1/2 cups of heavy whipping cream. Plus I used dehydrated onion flakes. My stomach handles the dehydrated onions better than the fresh onions sautéed. Don’t use pre-shredded Swiss cheese. Get an 8 oz block of Swiss and shred nearly half of it. Prepackaged shredded cheese has an additive in it to keep the cheese from sticking together. The quiche was awesome. I believe the secret ingredient is the 1/8 tsp of cayenne pepper.

The next day I made homemade chicken noodle soup with the chicken stock from my crockpot. I skimmed off the solid fat from the top of the jellied stock and used about 2 T of it to sauté the carrots and celery that I had already chopped up. I then heated back up the stock to a liquid state in the microwave to strain through a fine mesh strainer. I used the stock plus a 32 oz carton of Swanson’s chicken stock and one can of Swanson’s chicken broth. No water added! It really turned out excellent with egg noodles (thrown in during the last 10 minutes of boiling), salt, pepper, cumin, & thyme.

Today I was hoping to make something easy I have a recipe from a friend that uses a carrot cake mix and one can of pure pumpkin to make muffins. Sounds yummy! But I feel extra tired today. Boo… I’ve been on such a roll!

I’m freezing half the chicken noodle soup in 2 separate serving sized containers and I already froze the crockpot chicken in 2- 10.3 ounce packages for later when I feel the urge to cook.

I’m starting to think of cooking as what can I make for tonight’s dinner that I can make extra to freeze for the days I’m not up to cooking. Meatloaf is handy, chicken enchiladas or just the meat mixture prepared and froze that can be used for tacos or burritos. Beef tips and gravy freezes well too (see below) and K loves it with rice that we make the night we eat it. On the days that I know we have leftovers to eat for dinner, I’ll sometimes prep a meatloaf to freeze before baking and that way it saves me time and energy when I just don’t have a lot of on bad breathing days.

So, maybe later I’ll get up from my nap and make those muffins which will be baked in my mini muffin pan OR I’ll make Rice Krispie treats. Either way… yum!

Remember… November is PULMONARY HYPERTENSION AWARENESS MONTH. So, Be Aware for those of us who have PH that we are RARE! For more information about Pulmonary Hypertension go to Pulmonary Hypertension Association Organization

When you least expect it…

Living On Oxygen for Life

Sometimes life throws us a curve ball and how we react to that can really show us how much of a team we are. We’re not just married and love each other; we are all-in through thick and thin with all the rollercoasters and good times that make up our life.

Throughout this year, K has been telling me that he really, really needs a vacation on a beach. He’s experienced an emergency visit to an ER clinic for himself at which time I had to bail on him because I developed a MASSIVE migraine while waiting in the patient room with him. Thank goodness his sister came to our rescue so that I could go home leaving him there alone until she got there. (I felt so guilty!) He’s had to deal with working in 100+ degrees heat over the summer. There’s also been my up and down health with the fact that I could no longer do the chores around the house that I used to do, which meant that K had to do them. That’s not all of it but you get the gist, right? So, yeah, he really needed a beach vacation.

I told K that, with the way our budget looked, we were going to have to get creative about being able to afford going on vacation. I knew he really needed it but I was concerned, not only for the financial aspect, but also I wasn’t sure if I could make the 10-hour drive this year. I didn’t want to say no. He works so hard and does so much for me. Thus, came his idea. Out of the blue he said that he wants my help in selling all his McFarlane action figures on eBay and that’s what we did.

We got incredible lucky with a German buyer who bought 5 really large boxes filled with K’s action figures, earning enough money to pay for the hotel in South Padre Island. We actually earned quite a bit of money! So, everything was looking good for our vacation plans. That is until K mentioned a little problem a week and a half before we were to leave.

K had noticed some floaters in his GOOD eye and he knew that he was suppose to call the Optometrist right away. They got him in the next morning. A few hours later, I got a phone call from K while he was in the doctor’s office, asking me if I had already taken my diuretic. *cue the drama music* Luckily, I was still in bed because it was only 10am. (Hey… I sleep in! Don’t hate me because I can! *wink*) He wanted me to get up *UGH*, get dressed and he was on the way home to pick me up because he needed eye surgery within a few hours. *Wait..what????*

I was freaking out. I was worried about K having to go through surgery again, having enough energy to be in the waiting room, having to run all the prescription pickups, taking care of K after surgery and then of course paying the copay bill of the surgery, the doctor and the anesthesiologist. What worried us the most was the amount of time K was going to have to take off work. Sick leave and vacation pay only covered most of it but it’s the few days that was unpaid that worried us.

We are NOT rich but we just sold a huge amount of K’s action figures and we had that money but that means we had to cancel our anniversary/my birthday vacation that I just reserved. That hurt… In fact, I cried.

But looking back at this whole situation, this whole thing felt like everything aligned just for this moment. Somebody up there was looking out for us. We’re not out of the woods yet but this shows us how well and how much of a team we are.

Not only K and I are a team but also K’s sister and my sisters too. My older sister came down and cooked 2 quiches and a huge pan of lasagna so that I didn’t have to cook. My sisters and mother kept texting me encouraging support to me, which helped a lot. I’ll try to blog more often. You can catch me on my Living on O2 for Life Facebook page or ChristineLovesDaisies Instagram if you have those apps.

So, this is why I’ve been mostly quiet. I don’t like posting things that seem negative or stressful but I wanted to let you know that we’re ok and alive. =o) Lots of love to you all! *hugs* FYI: if you start seeing a lot of floaters in your eyes, that could be from tears in or a detached retina. Get it checked out ASAP (within a few days!)

It’s blazin’ hot here…

Living On O2 for Life

For the past two weeks or so it’s in the upper 90s and in a few days the forecast is 105 degrees. What that means for me is: Stay indoors with the a/c cranked. Well, that’s what I would usually do but life has a way of creating drama. You know, the kind of drama like your “Check Engine Soon” light coming on when I least expected it. Then there’s the strawberry plants that stopped producing! What? I know… I was nearly devastated. haha! There’s more drama that happened but I don’t want to bore you. I want to tell you about the fun stuff!

K and I were fortunate enough to be able to visit with one of my cousins and her family while they were here with their church. There was a choir event that we went to and wow were the kid who sang good! We had a great time catching up. I hadn’t seen them in over 18 years.

You know from the last post that I’m slowly increasing my experience in yeast bread. Well… I experimented with making Honey Oatmeal Wheat rolls. Unfortunately, K doesn’t like wheat or oatmeal in his bread. Lesson learned! So, I shared them with his mother. See picture in the right column under Instagram. If you scroll down you’ll see them. It was a lot of fun! We also ate our first two ears of corn that K grew. Our experiment with growing corn has been successful thus far. We have 7 more ears left growing from a separate, later planted seeds. Whew.. they were delicious and I hope we plant more next year. I’m making quite the farmer out of my man. I’m SO proud!

Unfortunately, one of our pond goldfish kicked the bucket. He was floating belly up one day and we still don’t know why or what caused it. Rest in peace little man… But, we still have 7 left… so… HOORAY Goldfish! haha! My newest Need a Hug afghan is coming along nicely. I already have the recipient in mind to ship it to. I’m hoping to get it finished within a month. *fingers crossed*

This past week has been terribly hot and humid. It’s been trying to rain but in our area it’s only coming down in the lightest sprinkle occasionally which is making it HARD for me to breathe and tired a lot. I want to try to get that yummy Cinnamon Swirl Bread made today. K said, “Double to the cinnamon swirl!” So, if I’m not too tired, I’ll make it today and increase the swirl! haha! I’m going to share half of it with K’s mom. She really liked my first loaf. YAY!

Be well and be careful with this heat. *hugs*

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!