Life on Oxygen

Hello, my name is Christine. I use oxygen 24/7 and I’m 45 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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We bring you a Medical Update…

Living On Oxygen for Life

IMG_3990 Oh the joys of hospital gowns. I never have been given a gown that actually fits. They’re sizes range from Large to Extra Large. Yeah, I asked. A lot of times I can just wrap the gown around my front, back and then to front again to tie it. However, the gown I got today was the kind that had short ties. So no wrap-around action for me and of course the opening had to be in front. What a fashion statement I made today!

Today’s appointment was with my cardiologist who I’ve seen for the past 20+ years. He’s AWESOME! He always asks me how I’m doing, what I’ve been up to, and if I’m still doing whatever it was that I was doing the last time I saw him which was a year ago. After all the pleasantries were out of the way, we started in with my questions. First I asked him what he has diagnosed my cardiac problems to be. His answer was, “Which one?” Haha! We laughed. Nothing with my health problems is ever easy or simple. In fact, my body is very complex. One organ’s problems affects another organ’s problems and etc.. It’s very frustrating because my body doesn’t want to do what doctors seem to think it should do. I think there’s a Murphy’s Law for that somewhere.

My Cardiologist told me that I have Supraventricular Arrythmias as well as Ventricular Arrythmias and when I first went to see him 20+ years ago, I had premature ventricular contractions really badly. Thus, the reason why I’m on Cordarone because it was the only medicine at the time that didn’t cripple my breathing ability. Now that we got that straightened out, I told him what the Cardiac Electrophysiologist (maybe I got that backwards) that my Cardiologist sent me to suggested Tikosyn for my heart problems. You see, I was looking for a replacement for Cordarone. Being on Cordarone is not a very safe thing for my body. It can lead to Thyroid problems as well as scarring of the lungs which is called Pulmonary Fibrosis. Tikosyn is used for both A-fib and my problems. However, after reading about Tikosyn, I felt the risks of taking Tikosyn for my actual cardiac problems were too high to make me comfortable to trying it. Beside, you have to stay in the hospital for 3 days to start Tikosyn. So, my Cardiologist and I are in agreement for me to stay on Cordarone, since I have yet to have any problems relating to Cordarone in 20 years.

Now wait a minute, you say. Don’t the PH doctors think this current thyroid problem that I currently have occurred because of Cordarone? Funny that you asked that because I brought this up with my Cardiologist. I explained what happened when I tried Opsumit for 3 months last year which ended with me being hospitalized for 3 days. I told him how I was diagnosed with Hyperthyroid and that the PH doctors were saying it was only because of me taking Cordarone. They wanted me off of it. I told my Cardiologist the status of my thyroid now that I’m slowly decreasing the thyroid medicine I’m taking. His thoughts are that it could’ve been Opsumit interacting with the Cordarone. It wasn’t technically Cordarone giving me thyroid problems, it could be that Opsumit in conjunction with Cordarone, triggered a thyroid problem in me. It actually makes sense to me!

According to the ECHO I did today, my heart looks good, pressures ok, blood flow is good. Then there is the not-so-good news. My aorta. For some mysterious reason, my aorta measured at 5.1cm. I don’t have high blood pressure. So who knows why this is occurring. Now I have to go get a CT Scan to more accurately measure my ascending aorta. My Cardiologist says that if it gets to 5.5cm, he will want me to go to the hospital where my PH doctors are so that I can get medical intervention. Sounds like some sort of surgery to me. *pout* He said that there are ways to not have to cut me open to put in a stint. I’m not sure if that’s makes me feel more reassured or not. Either way, it’s gonna hurt somehow. haha! I shouldn’t put the cart before the mule, so to speak. Why worry over it too much. I’ll wait to see what the CT Scan says first.

I’m just a little disgusted with not getting a clean bill of health with my heart today. It’s always hard for me when new things pop up unexpectedly with my health. It takes me a couple of days to accept the news and to begin to move forward again. I did show him a copy of my heart cath that I had last December. He thought it looked great! Hooray! Sometimes I feel like my PH doctors are all about doom and gloom. It’s nice to get a little optimism from my cardiologist!

I hope you enjoyed this Medical Update! *wink*

Stay in touch and be well. *HUGS*

Acts of kindness..

Living On Oxygen for Life

Sometimes, K really really goes the extra mile. He’s like his mom in that he listens to whatever you are talking about and somehow catalogs a few key words within a conversation and stores them for later use. This skill comes in handy around Christmas, birthdays, and vacations. Of course, he has selective hearing too.. don’t most men?

Anyway, now that you know that K possesses this skill, he’s really good at surprising me with things that I really do want but don’t think he’d go for. In example, I told him a month ago that it would be super handy to have some sort of shelf or storage thing to put on our back patio (the OASIS) to hold all my little garden tools, fertilizer, and other odds and ends. K said that I do just fine walking 30 feet to the shed to get my tools from there. Drats! Conversation over. Foiled again!

Or was I? One day, I got this text message, with a picture, from K while he was at work. He asked me if I wanted what he found that day. I didn’t know it was behind 7-eleven. All that was in the picture was the armoire. It was a little gross but I thought it could be salvaged with a lot of effort. He said it was free which totally shocked me. I’m thinking to myself… Really? Free? and then my thoughts turned to… How the heck is he going to get it in my van? Naturally I said yes, I’ll take it! He told me to meet him at 7-eleven.

I drove like I was in a Nascar race to 7-eleven praying that no one else had seen it and took it before I could lay claim to it. K met me there. When I saw it standing next to the dumpster, I started having second thoughts about hauling this thing off to our house. It was gross (it still is) and it had spiderwebs in it, under it and who knows where else. *shiver* eww! It just barely fit in my van. It is much taller than I thought. It’s about six inches shorter than me. Once K and I hauled it to our OASIS of a patio, my mind started whirling with ideas. We still have paint left over from our house redo (that’s not finished yet either). With a little cleaning, sanding, and some fresh paint, the armoire could look awesome. I could use it to hold a lot of garden things.

outdoorchest

After all the excitement settled down, I turned to K and said, “We dumpster dived and didn’t get caught! Score one for us!” Of course we didn’t actually get in the dumpster. I kinda draw the line there, as long as it’s not in the dumpster or touching it.

What I’m trying to say is that it feels really good when someone, during their busy day, was thinking about you. Maybe they did something simple like a phone call to say, “Hi!” Or they stopped by to ask you if you needed anything from the store. Maybe it’s someone who was walking ahead of you, about to enter a store, but stopped to hold the door open and let you pass through first. So, I ask you these two questions:

1. When was the last time that someone did something kind and thoughtful for you?

and

2. When was the last time you did something kind and thoughtful for someone else?

I hope this post made some sort of sense. I wasn’t able to sleep last night for some reason and my brain kept getting lost in the conversation I just typed out for you. *hugs* to all of you. Don’t forget to FOLLOW my BLOG!

Entering DEFCON 4 – when someone is sick..

Living On Oxygen for Life

Hello everyone! I bet you’ve been wondering what I’ve been doing lately. Right? Well, it’s official. I’m placing our house on DEFCON 4 alert. K is sick with a sinus infection and it seems like he’s getting worse instead of better. You should hear his cough. It’s awful. Hence, the reason to move to DEFCON 4.

Wondering what DEFCON 4 means? The list below describes my self-made DEFCON alert system for our household. Enjoy!

  • DEFCON 1: Happy and HEALTHY
  • DEFCON 2: If one of us thinks we are getting sick, no hugs or kisses from each other. Definitely not sharing drinks or utinsels.
  • DEFCON 3: This one is harsher. It includes DEFCON 2 actions. Plus, I grab a tub of Lysol wipes and wipe down all door knobs, remote controls, cellphones and computer keyboards. I monitor K’s condition but I do not hover over him.
  • DEFCON 4: The doctor is called. Not just for him but for both of us. For obvious reasons since K is the one that’s sick, we either get an appointment or see if the doctor will call in antibiotics. Then I tell him the possibility of me getting sick from him. I just let him know that I’ve been exposed to something that K is currently fighting. ALL dishes that K touches goes immediately into the dishwasher. I never let him drink out of the same glass twice. So no refills in the same glass. Call me paranoid but I really think this helps. I keep a supply of Gatorade in the fridge and leave a bottle of it on his bedside table. He’ll usually drink it when I’m not around.
  • DEFCON 5: This is the one I generally have to enlist K’s mom to help me. K doesn’t really like going to the doctor let alone have to go to the hospital. There has only been one time that I’ve had to take him to the hospital. (Thank you Jesus!) but he’s had to go to a 24-hour emergency clinic once before when he was sick. He’s a pretty stubborn guy! Bed sheets are changed immediately unless I can’t get him out of bed. If that’s the case, the pillowcase gets changed everyday.

So this is my basic DEFCON alert system guideline. Obviously DEFCON 1 is Happy and Healthy and that’s where we always want to be! Now, I’m about to go to the grocery store to stock up on more sinus medicine and gatorade for K. We’ve had to put off the grocery shopping for days and days. Now, I’m going to go alone because K just isn’t up to helping me. It’s ok because he knows I’ll just get the stuff that we really, really need and then he will go with me the next time when he’s feeling better to get the heavy stuff like kitty litter.

I hope all is well with you! *hugs* Don’t forget to follow my blog!

Christine
[April 2015]

Better, faster, lasting longer… your portable oxygen system. Don’t we deserve it?

Living On Oxygen for Life

I recently received this comment below about an issue that many… I mean many oxygen users feeling strongly about. Only an oxygen user who uses portable oxygen knows exactly how difficult it is to be active while lugging any form of portable oxygen.

What if there was a way to make these portables lighter and longer lasting? Why isn’t there already any available? Sure, there are the battery powered oxygen concentrators but those batteries don’t last very long and they take a while to recharge. Do we really want to carry around multiple bulky batteries when a battery can be made lighter, smaller and last longer?

What can we, as an oxygen using community, do to further the battery technology and portable systems to become more beneficial for us so that we can lead a more active lifestyle?

Bill wrote this in hopes that we could raise awareness for this much-needed help from the tech world.

“I’m suffering from health issues and I feel like there is some uniquely innovative person who could help. I don’t want money and I really do not want sympathy. I want help solving a special problem….oxygen.

Three years ago I had a health event and since then have required a modest flow of oxygen. Before this I was largely unaware of what it meant to carry a portable oxygen system around. Suddenly, through necessity, I personally became aware of the challenges I faced using these systems. I, like many others, need to carry some form of oxygen with me every moment of every day.

What baffles me the most is that at a time when you’re feeling weaker because of your oxygen deficiency, you’re now saddled with carrying a significant extra weight. There is an array of systems available, but they are all heavy and clumsy. It makes getting around for everyday tasks even harder. I was also surprised at the large number of people using these systems as well as the many that cannot afford help and just suffer silently.

Excessively heavy, and inconsistently reliable power supplies are only a few of the major problems. When combined with clumsy delivery systems it makes for a real challenge.

I have admired the way some have attack problems and find new solutions. I would like someone to take the ball and find a solution to this problem. I know that it would be a great benefit to many people and you’d be giving life and freedom to those of us that are suffering. We need innovation in attacking this problem.

I believe with today’s technology there is no reason the needs for this fast growth health care cannot be improved. As one who will require oxygen for the rest of my life, I ask a small favor. Please take a look at this issue and help us if you can.”

Many people are still using the archaic e-cylinder metal tanks for their portable oxygen system. We, as the oxygen users who are already challenged with our illness, want our independence. Struggling with bulky, heavy portable equipment that may only give us only hours of oxygen does not promote a quality life. It’s frustrating to have to rely on oxygen equipment that could be so much better.

If you know of someone who you can pass this message on to and help solve this problem, you would be helping many people obtain a quality of life they deserve. This is achievable.

Pin this, Facebook this, and Twitter this post. Let’s get this out there.

I am opening this post up for your comments, suggestions, ideas, and ways that we can raise awareness for the need of better portable oxygen delivery systems and lightweight, longer-lasting batteries for portable oxygen. If people can create a computer in a garage, why can’t someone create a better battery for a better oxygen delivery system? Let’s do this for ourselves and better our lives.

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]

Keeping busy and Team work… makes life easier… (with pictures!)

Living On Oxygen for Life

The other day I approached K and said, “KK, I’ve been thinking..” KK is what I sometimes call him when, of course have been “thinking” and, naturally, when I want something. It never hurts to butter him up in preparation to offer an idea to get what I want. This has to do with our kitchen renovation. Now, K has all these plans in his head on how he wants the kitchen to look and sometimes he even includes my input but not very often. He’s just so, so good at putting colors and ideas together. I’ve learned to just go with the flow. Yet, I’ve had to reign him in at times when his ideas become too expensive. But here I am… thinking away with what I think is an AWESOME idea. Not only is it neat but it something that would greatly help me.

You see, it’s become difficult to bend over or squat down to reach pans or containers in our lower cabinets. It makes me tired and/or short of breath to reach into the lower cabinets while bending over. So, I wondered if K could fix this problem with my idea. I was standing in the computer room/craft room of our house when I asked him, “What do you think about the idea of installing slide-outs in the bottom cabinets so that when I need a pot or pan (whatever I need), it will be easier for me?” To my surprise, K turned towards the computer that he was already sitting at and tapped a few keys on the keyboard to bring up a website. It was the Home Depot site and he was showing exactly what I just asked him for. He said, “I thought the same thing and I was about to order them.” I told him that he’s so awesome!

The full slide out cabinet drawers that we ordered.

The full slide out cabinet drawers that we ordered.

K tries so hard to make life easier for me. If some task is harder for me now, either he or I will figure a new way to do it so that it won’t cause me as much trouble breathing. We are a team with a common goal. And that goal is to keep me around for a long time. That means, to make life a little more accommodating isn’t such a high price to pay.

I’m so excited to show you what I finished yesterday on my own. Ok..ok.. it actually took me nearly three days to finish both priming with a special bonding primer and then paint the cabinets. Please disregard the mess. It was so hard to find space for everything that was originally in the cabinets. That’s why we are doing a section at a time. Plus, I have to go slow to not wear myself out. And, yes, K had to empty all the cabinets out for me. He painted the insides of the cabinets. He didn’t want me surrounded by paint fumes… even though we used LOW odor Valspar paint.

Before (Primed Cabinets)

Before (Primed Cabinets)

Cabinets after paint

Cabinets after paint

This is an example of something K and I do as a project. Some projects that we do are too hard for me physically. So, my job is to be the budgeter or researcher. It’s just like the trip we took to the Arboretum. We took a lot of pictures together and later, I may make another Shutterfly photo book from those pictures. I mean, what better way to capture a lifetime of memories than in a Shutterfly book? We build memories and keep the relationship between K and me happy. It’s also helps to keep me active and my health stable.

Even though I use oxygen and my lung volume is in the teens, I still find things to do that I enjoy. Oxygen doesn’t take away the joy of life for me. I use it to my advantage so that I can find a lot of hobbies that are super fun to do!

I was scared…seriously…

Living On Oxygen for Life

On the day that I had my endocrine appointment something happened that I didn’t tell you, my readers, about. In fact, I only told one person… Thanks for listening Michelle. Of course, K knows because he was there when it happened. I’m telling you now because maybe it’s something important that someone out there on the Interweb can relate to or has experienced. Maybe YOU can help me.

If you’ve already read my last post about my last doctor appointment and the following adventure to the Dallas Arboretum, what I’m about to tell you is what happened on the way home from the Arboretum. I know… I didn’t go in great detail about the adventure. Sorry. I love sharing my passion about photography. I’ll make it up to you, my readers. I promise you.

When I got to the Arboretum, my neck was starting to hurt which is a sure sign of a possible migraine coming on. I only had with me a half of a Phenergan pill which is for nausea. Yeah, I know… double crudbuckets! I still felt well enough to go to the arboretum. It was just a strain and I thought I could be ok. I mean, my portable liquid oxygen tank only lasts me 2-ish hours and I figured we’d leave at that time.

It was pretty hot that day which I didn’t really count on so much… but I had a bottle of water and we took shade breaks often. Took a LOT of pictures too! YAY! We decided that we both were pretty tired when the 2 hours were up. So K wheeled me back to the van in my groovy wheelchair which I have yet to bling up.. I know! What wrong with me!?!?!? haha!

That’s when I felt the nauseation kick in. What do you tell your husband after having a great day at the Arboretum taking lots of pictures? “Uh, honey, I’m really, really sorry but I am tanking and I think I might throw up.” That kind of puts a damper on the whole day. Poor guy. He just sighs and tells me to hold on because we both know it’s over an hour drive home. I’m searching all over for a cup to, you know, just in case.

As we get closer to our house, I’m getting new symptoms that I haven’t quite experienced to this magnitude but one other time. Except this time is worse. I was starting to feel weak. Really weak. My arms muscles felt heavy and weak and my breathing was shallow. I had to concentrate on breathing as much as concentrating on not throwing up. I just shut my eyes and started to purse breathe.

By some miracle, we made it home without any vomiting despite all those stupid pothole all over the roads. K had to help me out of the van and into the house. I went straight to bed after taking more Phenergan and some Extra strength Excedrin.

K crawled in bed when I asked him to stay with me. I don’t think I was more scared for my health than in that moment. I told K that I felt so weak that I didn’t even feel like breathing. Thank God for my Bipap. My head hurt badly and my whole body was weak now.

I didn’t cry. I wanted to but I didn’t want to do that in front of K because I knew he was starting to get scared too. He held my hand until I let go to roll over to my left side, which is the best side for my breathing capability. I don’t know how I did it, but I feel asleep with my bipap & oxygen on for about an hour and a half.

When I woke up, by some miracle, I felt my headache and nausea was gone which totally shocked me. I thought this was TOO good to be true. So, I just laid there for the next 30 minutes. I still felt a little weak but for the rest of the night, I took it easy. Today, I feel just fine.

I plan to tell my Primary doctor what happened at my next appointment. I don’t know if he can give me answers as to why it happened or what he can do about helping me. It just seems to me that as years go by, with the migraines I have, they are starting to wreak havoc with my body and leaving me very vulnerable and very scared. I mean, I really enjoy breathing, you know? haha!

My question to you is: Has anyone had a migraine, and also breathing problems, resulting in this kind of weakness with their breathing? Let me know ok? I hope I didn’t just scare y’all but I’m reaching out for information from anyone with similar experiences & health.