Why I Need Oxygen

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 the classes of 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! No one, at this time, knew why this was happening.

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. The 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 and declining…

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’ve 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. So, post your questions! Just please be patient because I review every post before they appear on my blog to help prevent spam.

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6 thoughts on “Why I Need Oxygen

  1. i have just been told that I will have to wear this milwaukee brace for the rest of my life ,so far ive been in it for the past 8 or so years,so I can sorta sypmathize with your early childhood ,although I am now about to turn 60,I do not mind the milwaukee as when I am in it I have no pain what so ever ,although when I take it off I can only last less than an hour and a half ,I currently use an oxygen concentrator at the rate of 4.7 ltr/hr attached to my cpap mask .

  2. Hi James,
    I’m curious on whether you can use your oxygen without the cpap or do you have to use the cpap 24/7? I’m glad that the Milwaukee brace helps relieve your pain. Happy Early Birthday to you for turning 60 years young! Do you feel like you are getting enough oxygen with the oxygen concentrator? What do you use when you leave the house? I use liquid oxygen. I love it. =o) I’m sure I would benefit from wearing a brace again but I just can’t bring myself to go to an Orthopedic doctor yet to find out what they can do for me if anything. I guess I need to suck it up and just go. Right? =o) I hope to hear from you again. Thank you for posting a great comment.

  3. Christine, my name is kryste Robertson and I was reading your story about oxygen use and me too have too be on oxygen also. I was diagosised in Dec of2011 with pulmonary hypertension caused by schloderma. It’s been a rough time dealing with everything.but I go on about my business.

    • Hi Kryste… I’m so glad you found my blog. How are you doing? I hope you have found a Pulmonary Hypertension medicine that has helped you. I know life can be a challenge having to deal with everyday life and then throw health problems on top of that. Try to take it one day at a time and enjoy every moment when you are feeling like you’re having a good day. *hugs*

  4. Wow, you are such an inspirational young woman, I’m a 30 something black female from the UK. I started using oxygen 24/7 in 2013 after both my lungs collapsed. I have since been diagnosed with emphysema and bronchiectasis and have lost a considerable amount of weight over the years. Today I use a bibab at night and it helps me tremendously, I have more good days than bad days and I consider myself lucky to be alive, independent, and loved by my family. I wish you all the best with your health & life.

    • Thank you so much! It sounds like you had experienced some scary things with your health. I’m glad you pulled through and I hope you continue to do well on oxygen and your Bipap. Life is good even with oxygen. *hug*

Thank you for posting a comment. All comments will be reviewed for spam before being posted on this blog. It's only to prevent a spam overload. Thank you! .... Christine

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