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Thursday, January 19th 2006

5:45 AM

Why I need Oxygen

Good morning! I couldn't sleep any longer. So, I got up, still in my jammies and sat down to my computer. Imagine my surprise to see a couple of people leaving me a message over night! Thanks ya'll!

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.

12 Comment(s).

Posted by Harriet Teglas:

You are one of the bravest person I know!!;);)
Thursday, March 2nd 2006 @ 10:42 AM

Posted by Darren:

I think you are one of the neatest people on the net. Hold that chin up and walk proud! I think you are gorgeous! ;)
Friday, December 1st 2006 @ 1:15 PM

Posted by maryann dougherty:

i have cope lung problems, i have to take oxygen at night, have had tests, but when i go to sleep at night my oxygen level goes to low.

REPLY by Christine(owner): I've had problems like yours. When I slept, my carbon dioxide level would get to high & oxygen level would get too low. Doctors ordered a SLEEP STUDY for me and found that a BIPAP S/T machine would solve my problem. I still have to use oxygen with this machine when I sleep but I no longer wake up with headaches or feel like I'm going to stop breathing when I sleep.
Thursday, April 3rd 2008 @ 3:11 PM

Posted by julia ham:

My daughter was born three months premature. She was born at 1lb 1 oz, also have vsd and pda. We just found out that she has primary pulmanary hypertention. Your story has really helped me because I thought that she wouldnt be able to lead any kind of normal life. I thought she wouldn't live long enough to have a life. But thanks for showing me it.
Wednesday, October 8th 2008 @ 4:42 PM

Posted by Miss Oxygen:

Wow I take my hat off to you, your are really brave, I don't think I would have been as brave.

Thank you Miss Oxygen. =o)
Tuesday, October 28th 2008 @ 2:42 AM

Posted by aubrey cohen:

helloi have cpod,,but i have it under control.and do not need oxygen(from the doctor) my question is..IS IT USEFULL TO HAVE AN OXYGEN CONCENTRATOR--TO USE NOW AND AGAIN..WHEN I GASP FOR BREATH SOMETIMES???WITCH I SOMETIMES DO.GREETINGS MR A COHEN ZURICH

Hello Mr. Cohen,

Well, I'm not a doctor and I don't know what your Oxygen Saturation level is when you exert yourself. I am hoping that your doctor is keeping an eye on that. Are you seeing a Pulmonologist? Have you told your doctor that you have shortness of breath while doing certain things? You can always ask the doctor if having a oxygen concentrator would be beneficial at home for these times if needed. I've actually had an at-home pulse oximetry test when I had to wear a little pulse oximetry monitor on my finger that's attached to a recording device while I walked around and while I sat down without my oxygen on. It proved that I truly needed oxygen. Maybe you can ask your doctor about it. Perhaps it's an insurance issue? Keep in touch! Your question is a very valid one.

Monday, February 1st 2010 @ 11:55 PM

Posted by Eva Renee (mother):

My daughter weight 1.5 lbs.when born premature 3 months early.she was having problems but we didn't know the problem we found out it was her oxygen it goes so low.she is so depressed doctor told her she has to stay on oxygen all her life.she is still living with me and her dad.she said she would never get married now,her desired is to have kids and get married.I saw your testimony and what a blessing you were to me I'm going to let her read your profile and i hope she can get encouraged that her life is not over.thank you Geneva her mom;)


Hello Geneva! I'm so glad you posted this comment. I was very depressed when I first learned that I would have to stay on oxygen for the rest of my life. We're talking VERY DEPRESSED. I would love for her to read this blog. Even though I use oxygen 24/7 now, life is still good. Your daughter will find a man who will love her for all her qualities.
Sunday, February 21st 2010 @ 9:30 PM

Posted by Joee:

Hi I am so thankful for finding your site. I have heart and lung disease apparently. I too am on O2>>5LITRES>>24/7. I was given a sleep test and even before it was done the tech said I had sleep apnea.{that experience was an experience from hell}Any way was given a Bi-pap and told to use it. I honeastly have tried and tried but I feel like I am unable to breathe normal and feel like I am choking. I might add I have an adverse reaction to my mouth being covered. I tried the smaller one but was told that it would be no good for me as I breathe through my mouth at times.

I know it's hard to get yourself use to a bipap but it really is worth it. I am not comfortable with the full face mask either. In fact, I had to insist for the nose mask. I tuck my hand under my chin while I sleep and since I'm a stomache sleeper, that works for me. However they have a chin strap available for people like you who tend to have problems with opening their mouth while sleeping. Maybe you can approach your pulmonologist with this information because it's better for you to use your bipap than not use it at all because a minor problem. Keep trying to become adjusted to the machine. It took me months to get use to mine when I first started. I've used a bipap since 1995. Good luck and hope to hear from you again!

Wednesday, May 5th 2010 @ 9:15 AM

Posted by Rebecca:

I know what living on oxygen feels like , not to many ppl understand what we have to go through & yes it takes a very strong person to live with it ' i admire your courage ..i just happen to run into this & could not believe how similiar we feel about this.:P


Thanks for leaving your post. I am glad you found my blog. I haven't posted in while. Just had a heart catherization on Valentine's Day which was the most romantic experience! lol! Stay strong. *hugs*

Thursday, February 17th 2011 @ 8:20 AM

Posted by ellan wiegger:

I was told I would have to stay on oxygen all my life is that true?:(:(

Hello Ellan,

I'm not sure what your condition is that requires you to use oxygen. But since you do need to use it, try not to let it control your life. What's important is the "quality" of your life on oxygen. I know from experience that my life without oxygen (which isn't possible) would be awful. However, having to wear oxygen, even though it can sometimes be such a pain in the butt, has it's great benefits. It allows you to feel better and do more than you could without it. Don't be afraid to get out of the house and go out with your friends. Live your life. Oxygen helps you do that. =o)

Thursday, March 17th 2011 @ 7:05 PM

Posted by Joney:

You are definitely brave and it looks like you won't let anything stop you. I think it's great that you are so open and willing to answer questions to strangers wondering why you need oxygen. I think by talking about it and telling others, people will become more receptive of others with disabilities.

Thank you so much! =o) I'm happy that you stopped by my blog!

Thursday, March 24th 2011 @ 12:53 PM

Posted by LC:

I feel we have a very similar background. I was dx with neuroblastomba at age 18 months. Had chemo, surgery, radiation. All was fine until I was 15 I had kyphoscoliosis which was corrected by inserting Harrington Rods. I started to use bi-pap shortly after to help with breathing at night and the high co2. Unfournately, the surgery did not fix my lungs function too much and they remained at fev1 at 15%. At age 25 I was dx with pulmonary hypertension and this is when I had to go on oxygen 24/7. I contined working full time until this year 2012 Jan I had to stop working because I had massive hemoptysis. Still recovering but doing ok I suppose. Nice to know there's someone out there similar to me. :)

This comment has been moderated by the blog owner

Sunday, August 12th 2012 @ 3:31 AM