Living On Oxygen
This blog is to help those who live with oxygen needs. It is also for the spouses, children, and others who help the individuals who are on oxygen to lead a quality life.
Each comment is reviewed before it is posting to prevent SPAMMING.
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By christine, on January 27th, 2010
I’m sure ya’ll are wondering WHY I have to use oxygen at such a young age. Well, first let me say, when I was 17 years old, I started using oxygen at night only at 1 liter/minute. This was because I would have blackouts throughout the daytime and fall asleep during my senior year of schooling. I was always tired. I woke up every morning with a severe headache that went away after being up out of bed for about 15 minutes. Though, running to the bathroom having to dry heave every morning sucked!
I’ll start at the beginning of my life and tell you what health problems I was born with to help you better understand why my lungs & heart need the extra help of oxygen. Here’s the majority of my problems:
•Born with 2 holes in my heart (Atrial Septal Defect -ASD, Ventricular Septal Defect – VSD)
•Pulmonary hypertention
•Scoliosis – severe, but have ONE Harrington Rod. Scoliosis deformed my rib cage to the point that leaves less room for my lungs to expand when I breathe. I wore a Milwaukee Back Brace for 11 yrs as a toddler up to my teenage years.
•Born with only one kidney
•Born with no left ovary and no uterus (so, no kids)
•Lung volume is 24% of a person my age, weight, & gender.
With all of this, I also inherited my mother’s migraines which I get every month and started when I was aproximately 17/18 years old. Since I have serious health problems, I can’t take heavy pain medicine or imitrex/maxalt. Now I use oxygen at 5 liters/minute. It’s a large amount, especially for someone who is still able to get out and about. I try to lead as close to normal of a life as I can. I think that’s what helps keep me alive so far.
I know this all may sound dreadful but I survived it. So, ask your questions. I’ve even been stopped by people everywhere to ask about what kind of oxygen I use or even the tacky question: “What’s wrong with you?” I always cringe internally when I’m asked that last one but I always answer. There are so many people who have friends or loved ones who are using or about to start using oxygen and they need help with information on how to get what I have.
By christine, on January 25th, 2010
Hello, my name is Christine and I have a blog at http://livingono2forlife.bravejournal.com that I’m slowing moving to my own website here. Hope you will join me on this blog. I’m hoping to do so much more with this one than with Bravejournal.
I use oxygen 24/7 and I’m now 40 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, among my other health problems, 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, my husband has gone through all those ups and downs with me.
By christine, on January 22nd, 2009
Today, I hurt myself. Don’t worry though. It’s nothing tragic but it still hurts and I have no one to complain to. So I’m letting all of you know. Here’s what happened. I was carrying clean laundry to the bathroom so I could hang it up in my closet. Just when I was about to enter the bathroom, my feet got all tangled up in my 50ft canula (lying on the floor). When I tried to get my foot untangled, I raised my foot and smacked the goodin’s out of my knee on the edge of the bathroom door. Oh yeah, I screamed but miraculously held onto the clean laundry as I went down on the carpet in agony.
This isn’t the first accident while wearing an oxygen canula. It’s just one of those things that I deal with because I have to use oxygen. The canula is on the floor and gets in the way while I do even the simpliest chore. Try vacuuming while holding on to the vacuum cord and keeping the canula out of the vacuum’s way. It’s frustrating and energy consuming. Vacuuming and cleaning with bathroom cleaners are the hardest chores for me.
I start my day with the easiest things first. I wake up, take care of the cats (3 of them actually wake me up), take my medicine and do the dishes. Then I sit at the computer as I drink a glass of soda to wake up. After that, I’ll know if I’m going to have an energetic day or a slow day. Slow days mean taking it easy. I know not to push myself where the chores are concerned. I do a part of a chore, sit down and rest, then get up and do some more of it.
It was hard for my husband to accept that I am getting worse in health over the years and that I would require more and more of his help in things that I use to be able to do by myself such as Grocery Shopping. I no longer do all of it alone. On really energetic days, I’ll go shopping on my own and then come home and have him unload the vehicle for me. If I have to get heavy items at the store such as cat litter and sodas, he will go with me to shop. He’s much more understanding now that he can actually see the difference in what makes me really tired.
By christine, on January 25th, 2006
Tonight we are going out! We’ll be meeting up with some of my husband’s co-workers, none of whom I’ve met before. We’re also going somewhere that I’ve never been before. One thing that we are concerned about when we go somewhere new is whether or not there is smoking allowed indoors. Being around smokers determines how long our outing lasts. Some places have really good ventilation and I can tollerate being in the building. There are places like dance clubs where the cigarette smoke clings to the air and makes it really hard for me to breathe.
Before we go out, we make sure the oxygen resourvir in the back of my vehicle has oxygen in it. This is really important because I use this tank to get us to wherever we are going and then on the ride home. Plus, any refills if necessary. The portable is used when outside my vehicle because it will only last me 2 hours. Timing is everything! We always have a watch and a cellphone with us. We both carry car keys in case the others’ gets locked in the vehicle. Believe me, I’ve done it!
The minute I step out of the vehicle and put on my oxygen from the portable tank, I ask what time it is. From that point, I know to get back to the vehicle within two hours. If I’m sitting down, such as at a movie theater, I can turn down my oxygen for a while to 4 liters/min and that will make my oxygen last about 3 hours. This gives me time to see a movie. Though, seeing King Kong was tough because the movie was very long.
My husband does a lot. He drops me off at the door, goes to get the car so I don’t have to walk far if he couldn’t find a handicap parking spot, he carries my portable, and he walks the speed that I walk. Sometimes I have to pull him back to me because he walks like he’s in a marathon and he forgets that I’m not quite that fast. He’s 6ft tall where I’m only 5′2″.
The handicap placard is the best thing since sliced bread for those who need it. I chose the placard (the thing hanging off the rearview mirror designating for the handicap) because I wanted to be able to take it from vehicle to vehicle. I don’t always drive and with a placard, I can take it from my vehicle and use it in someone elses whenever I’m in their car. There are also handcap license plates but I prefer the placards.
By christine, on January 24th, 2006
I was scared. I was a nervous wreck and I thought my life of carefree fun was over.
I knew all the right things to tell myself. Who cares what other people think? You don’t know these people and they don’t know you. So why do you care what they think about you wearing oxygen? So, what. Right? But I did care. I’m human.
So, what did I do? I jumped right out there with both feet. My best friend and I went out. She told me that if she caught anyone staring at me that she would beat them up. She was so serious that it made me laugh. She decided that she was going to be my defender. (no actual beatings ocurred!!)
People do stare. It’s human nature to be curious. When I catch them staring, I just smile at them and it throws them off. I guess people don’t expect me to be so… I don’t know.. Friendly? Outgoing? or Willing to talk about “What’s wrong with me.” However, a smile works every time.
By christine, on January 21st, 2006
Medications
•Congestive Heart Failure
•Respiratory Insufficiency
•Scoliosis
•Migraine Headaches
These are my most pressing health concerns. There is no medication for scoliosis except for corrective surgery. I’ve had 2 of those. The first surgery was when I was 3 and ended up in HALO traction for 6 months. The second surgery was when I was 13 and I ended up with a Harrington Rod in my back.
Maintenance Medication is medication that I take everyday without failure. Things like a diuretic, supplement potassium & heart medication taken everyday gives me a chance to lead a good life. People don’t usually think of Oxygen as a medication but it has to be prescribed by a doctor and medically necessary for insurance to pay for any part of it.
My congestive heart failure can not be stopped but it can be slowed down with medication and good sense of taking care of myself properly. Though, I did see if I qualified for a heart/lungs transplant but with the deformation of my rib cage due to my scoliosis, I don’t qualify.
I know this may seem really sad but really I was kinda relieved that I didn’t qualify for a transplant. Too bad they don’t have brain transplants to cure Migraine headaches. I think I might stand in line for that one!!
I have another long day today. The family is getting together for a birthday party and I’m in charge of making taco fixings. Plus, we’ll be taking the boardgames (Loaded Questions: Expose Your Self & Trivial Pursuit 90s Edition) with us.
By christine, on January 21st, 2006
Sleeping with Breathing Problems
To be able to sleep, I have to be really tired. There were times when I would have a panic attack when I was trying to fall asleep. The fear that I would stop breathing when I slept was causing me to fight falling asleep even though I used my BiPap machine. I didn’t know how to control my fears. I had to start taking Xanax for a while when I had a panic attack and couldn’t sleep.
Usually I would start having a nighttime panic attack when I had a bad breathing day. After a while I learned how to relax by, basically, having faith that I would wake up in the morning and a lot of slow breathing. Having the air conditioner on really helped as well. It’s easier to sleep when it’s cold than when it’s hot. Now that I have the panic attacks under control, I don’t need Xanax.
BiPap machines are a wonderful invention. To qualify for a bipap, I had to have numerous sleep studies. I had electrodes glued to my head while I slept in the hospital over night. They are NOT fun. I didn’t ever like them because they’d try to start me sleeping with no oxygen (when I didn’t have to wear oxygen 24/7), then they put me on the bipap, then after they got the test readings, they added oxygen with the bipap. They would change the settings of the bipap at various times. All this was done in the space of 8 hours. Basically, I didn’t get much sleeping done.
God forbid if I had to change insurance companies or doctors group. Because that would mean that I would have to REQUALIFY for my medical equipment and oxygen. Requalifying for a bipap was the worst. It usually meant another sleep study. Now that I’m using oxygen 24/7, I pretty much have the insurance company’s confidence in knowing that I really DO need a BiPap to live and sleep.
Anyway, the lasanga turned out great! A little soupy because I added a can of tomatoes & cottage cheese. The movie was GREAT!!! I just hope I make it through tomorrow without a headache. I feel one coming on.
By christine, on January 20th, 2006
Good morning! Today I’m going to share with you what type of oxygen I use and what equipment I have. For me, since I use a high liter flow (5 liters/min), I need to use liquid oxygen. If you will notice the picture to the right, you will see the two metal tank reservoirs. Each of these tanks holds 100lbs of liquid oxygen. I get these tanks refilled every week. That’s how much oxygen I use.. 200lbs a week.
 2 100lb liquid oxygen tanks. I also have a 75lb tank of liquid oxygen that stays in my vehicle for when I go out to run my errands or go to friends. I just use that to drive with or when I’m with my husband, he can lift the big tank out so I can refill my small refillable portable tank. The portable tank when full, weighs only 8lbs. I have a little cart I can carry it around in but I try never to use it unless I go to the mall by myself. (I hate going to the mall! Lots of walking!) My portable has a strap on the top so that whoever is carrying it can just sling it over their shoulder.
The hardest part when someone else is carrying my portable while with me is getting ourselves thinking, where one goes the other HAS to follow! If we don’t think that way then one of us is going to lose the oxygen and it’s usually me! I sometimes feel like a dog on a leash.
Before I started using liquid oxygen full time, I had an oxygen concentrator. It’s an electrical machine that plugs into an electrical outlet in the wall of your home. It intakes the room air, divides out the oxygen from that air, and gives that oxygen to the person wearing the oxygen canula which is connected to the machine.
My oxygen canula within my home is 50 feet long. It’s said that it should not be any longer than 50 ft. This way I can walk from one end of my house to the other. I can even walk out into the backyard a way; as long as I don’t crimp the canula in the door when I shut it partially.
I have a pretty long day today. I need to make lasanga, clean around here and then we’re going to see the movie UNDERWORLD: Evolution. Tomorrow we have a birthday party to go to.
By christine, on January 19th, 2006
Well it’s barely past noon and I’m already tired. My energy level is sitting there just above the E for empty. Doesn’t take long or much either to drain it. I knew I stayed up too late last night. I’m normally a night person but I woke up early today. So, I’m not doing myself any good by not getting enough sleep. I require at least 8 full hours of sleep per night.
Tomorrow, I will tell you about my oxygen setup in my house, in my vehicle and the machine I have to use to breathe at night. Most people who use them use a version of the machine I use for Sleep Apnea or if they have a snoring problem when they sleep. They probably have a CPap. I have a BiPap. The BiPap forces air into my lungs when I inhale and then only allows me to exhale to the preset amount on the machine. It helps to continually keep air inside my lungs while still having the ability to breathe. I have a problem with too much CO2 building up when I sleep and I stop breathing. With the BiPap, I don’t have this problem. Really, without it… well I don’t want to imagine life without it. Grizzly!!!
So, until tomorrow… It’s naptime.
***UPDATE***
It’s now 2:16pm. I skipped the nap because my husband called and said he was off work early! I went ahead and made an early dinner for when he gets home. I’m terribly disorganized. My memory now is terrible but not abnormally bad. Just really annoying to me and sometimes my husband. I have lists everywhere it seems. However, I seem to forget where I leave my lists!!! Anyway, until tomorrow!
By christine, on January 8th, 2006
Hello, my name is Christine. I use oxygen 24/7 and I’m 36 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 hurtle, 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.
Any comments submitted to this blog may be posted unless otherwise asked not to be. Each comment is reviewed prior to possible posting.
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