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*

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.

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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.

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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.

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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.

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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

The Hair Dryer’s other danger…

Living On Oxygen for Life

I had a thought the other day about hair dryers. You know the ones that are handheld. Not the one’s that my mom use to sit under with curlers in her hair. I can still see her in my head sitting there with her rollers in waiting for her hair to dry. Wow.. She was a patient woman for beauty. She would while her time away painting her nails. She was skilled at that. Me? Not so much. *shrug*

My thought that I had was about a danger that I hadn’t thought of before. Mostly people know about the danger of not using or leaving a plugged in hair dryer near or in a bathtub of water. Yikes! Electric shock would ruin anyone’s day (or should I say life?). No, I was thinking about people who use oxygen while trying to dry their hair with that handheld hair dryer. It has a danger to it. Did you know?

Have you ever seen a hair dryer spark when you turn it on? I have. That in itself is dangerous because most people don’t clean the lint out of the vent of the hair dryer until it’s coated in the stuff. Now, we also need to remember about the heating element of the hair dryer. It glows red when you have the dryer on warm or hot, right?

Imagine yourself and how you use your hair dryer. Is it close to your face as you dry the underneath parts of your hair? Are you wearing your oxygen while drying your hair? I have to use my oxygen all the time. The thing is… I don’t dry my hair using a hair dryer but once in a blue moon (mostly in the Winter when I don’t want wet hair if I have to go outside). So, naturally, I didn’t really think of the danger that could happen if you mix a spark from a hair dryer and the oxygen that I or you use. In fact, at the website: Consumer Product Safety Commission, near the bottom of the page, it says not to operate a hair dryer where oxygen is being administered.

As for me, I air dry my hair. Using a hair dryer to dry my thick, long hair takes forever and makes me tired. Plus, I don’t like how it treats my hair. I end up looking like a fluff ball most of the time. Now that I have had this thought about the danger of using hair dryers with oxygen in use, I’m very cautious. I’ll admit that I still use one on RARE occasion but I know I shouldn’t. I hold the dryer as far from my hair as possible just to add an element of a buffer zone. I clean out the lint too. I make sure it’s in good working condition. I certainly don’t want a fire on my head!

Now, I’m not saying that you should use a hair dryer but if you still want to, I can’t stop you. Do it with extreme caution. Keep your hair dryer in peak condition and away from your oxygen. If it sparks, you’re gonna have problems.

Little emergencies can be big problems.

Living On Oxygen for Life

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This was a bad moment at the doctor’s office today. The doctor recently started having an oxygen tank at her office because I told her it would be a good idea. You know, just in case. Well, today was that just in case moment when my tubing snapped off as K was switching my tanks.  We were all panicking until K remembered the recently acquired office oxygen tank (with cannula!) kept tucked away for emergencies. I had to hold my broken tubing onto my second full tank to try and get enough oxygen until they found another cannula. Thankfully, K moves fast and keeps a level head in a crisis. All I was in charge of was concentrating on breathing calmly until rescued. We have spare tubing in my van but that was in the parking lot 7 floors below. It would’ve taken too long to get it.

Life has a funky way of reminding me how fragile my body is but I can’t live in fear and never go anywhere. Lately, I’ve become a homebody because my breathing has gotten worse. I have to get myself out of the house more and I’m going I’m going to accept this challenge head on. Well, as soon as K fills my gas tank. I’ve decided that’s a “man’s job.” Honestly, I can’t handle the gas fumes. So, I have K fill my van for me.

What about you? Have you had some oxygen emergencies? Share your story in the comment section. Love y’all!

Planning a road trip…

Living On Oxygen for Life

One of the most important things people do not tend to think about when planning for a road trip while having lung issues, is the how the path you decide to drive will affect your breathing. When I turned 40 years old (nearly 6 years ago!), I begged my husband to take me to Las Vegas. Nearly everyone I knew has been there and had fun. I just haven’t been there and I wanted to go so badly. So, I made it my Birthday wish. Over the years leading up to my 40th birthday, K would always tell me we couldn’t go because it’s a LONG drive and there would be just us driving. He also didn’t think I would do that well on the road driving through the mountains.

Eventually, I wore K down and he started thinking about going since it would be my big 4-0 birthday and he wanted to make it special. We needed someone to go with us. Not just anyone. We ended up taking my MacGyver-like brother-in-law and my older sister, who just happens to be a Physician’s Associate. I asked all my doctors how they felt about me going to Las Vegas (and then on to California) and they all said the same thing. Stay out of the mountains.

Mountains and any altitude that you are not acclimated to can create a big problem for those of us who have breathing problems. Things like increased shortness of breath, sleepiness, chest pain, head aches, and nauseation are just a few of the things that I experience in altitude that is within the range of 3000 feet or higher. It doesn’t take long for the effects of altitude to effect me. It’s a distinct and highly recognizable feeling and it can not only make you feel miserable, it will make you sick.

So, what did we do? First, let me tell you, you must have a back up emergency plan if you truly decide to go… which I don’t recommend doing without a backup plan and talking with your doctor first. Your life and health are too important to not be overly cautious. I then started charting the route that we took. K and I only drive 10-hour days while on a road trip (and yes we took our road trip mascot.. my rubber chicken!).. so we needed to make sure we stopped in locations that, not only have a lower altitude level, but also a place to refill my oxygen if it is time to refill my liquid oxygen reservoir. Wouldn’t want to run out of oxygen while on the road, right? That would be bad as I started using a tad bit more of oxygen while in the car.

Since I live in Fort Worth, Texas, I had to pick a route that skirted most of the mountains and stayed within the lower altitude range. I live in an area that is at around 700 feet above sea level. So, I was guessing that my maximum tolerable altitude would be 3000 feet. Yes I would still have trouble but I would be able to go since my sister was going with us to keep an eye on me. Yes, she’s an awesome sister. I only wished that my little sister could’ve gone too.

I bet you are wondering how I planned the route. First, there’s an app for that but most importantly, there is a really great altitude website that lets you click on any given area and it will tell you the altitude. You can use this map for locations anywhere around the world. Using this, I was able to figure out which highways to use to make my roaodtrip the safest route possible. It wasn’t fool-proof. I still had serious headaches and I was really tired. However, I had the foresight to have purchase a wheel chair through Amazon.com and I took my pulse oximeter to monitor my oxygen saturation.

I hope this helps you plan your road trips. I posted this information in hopes that you remain healthy while on vacation and have all the fun you deserve.

Learn about your oxygen concentrator filter

Living On Oxygen for Life

Good morning everyone! Whoops it already noon but it feels like morning to me because I woke up for the day about 30 minutes ago. I was so absorbed in a good book that I didn’t realize that it was already 3:30am when I looked at the time. I even had to struggle to put the book down. It was so good!

This blog entry will be short… Sorry.. Sorry! I know you love my long.. really long blog posts but at least this one has a video! YAY! In this video, on Youtube.com, I talk and show you an oxygen concentrator filter. Bare in mind that my filter may not be exactly like the one that is inside of your concentrator. But that’s ok.. they work the same way. You can watch it and then tell me what you think. Ok?

 

I hope everyone is doing well today. Don’t forget to stay active by finding something exciting and new to try. Like a hobby! I’m about to go outside to look at my elevated raised garden to see how much my veggies have grown already. I have pictures and I can’t wait to show you in my next post.

[April 2015]

What do you mean 24/7?

Living On Oxygen for Life

I’m trying to think back to how long I’ve used oxygen 24/7. That’s 24 hours a day, 7 days a week. It’s been many, many years. Let me think…It was definitely after I got married. Though I was still on oxygen. I started when I was 17 years old. But, I started using oxygen 24/7 in probably 1993. Ok Wow! That’s 21 years. Yep, I just did the math. It’s amazing, right? This shows us that we really can live a long time even though we need supplemental oxygen. I keep looking at that 21 years and it’s making me smile. All the fun, goofy things I’ve done and all the adventures I’ve been on over these past 21 years have been so crazy fun.

When I say that I use oxygen 24/7, I mean that I’m always using oxygen whether it’s to water my plants outside or taking a shower. I get in a swimming pool, put make up on, clean the house, and basically everything else a person has to do to live and have fun. I don’t worry about being in water with my oxygen on. Water won’t get into the tube. If I’m using my portable and I’m at the beach, I put my portable oxygen tank in a plastic bag. My husband digs a hole in the sand and drops the portable that’s in the bag into the hole and then covers it with a towel. I use a 25 to 50 foot tubing attached to my portable tank and then I wade out into the water! It’s so fun but I have to be really careful to make sure no one else who’s on the beach trips over my tubing. We usually pick a spot on the beach where no one else is around or go to the beach early in the morning or late in the evening. If there are a lot of people on the beach, K will hold my portable, take my hand and walk me out into the ocean so that I can get in the water. I do NOT swim. I’m totally scared of water. I drowned once when I was about 2 years old and I think that has A LOT to do with why I have a massive phobia about water. It’s really inconvenient because I think swimming looks really relaxing. Though, I will float in a blown up tube!

I do take my oxygen off when people are taking my picture but not always. I’m not able to stay off my oxygen for more than a few minutes without really suffering from my oxygen desaturating.

I’ve been so busy lately. K and I are having a few things done on our house and it’s taken up so much of my time that I’ve not been able to blog lately. Hopefully with most of the house projects finished, I will be back in action again on my blog. I do apologize. I have been on Facebook, email, and Instagram because I can write from my phone and iPad. So, I’m still here!

My newest “Need a Hug” giveaway is posted! The deadline to enter for the afghan is June 30th, 2014 at midnight. I hope you will enter! Lots of love to you all!

I want to share this song with you… my friends!