This is who I am

Living On Oxygen for Life

I was asked to contribute a little something for another blogger. She’s building a blog community for people who have PH or have just been diagnosed with Pulmonary Hypertension. This is what I wrote: (It turned out a little long!) find her blog at PHight or Flight

My life is a little bit different from someone who was just diagnosed with PH. It’s different in the way that I was born already having PH because I have congenital birth defects such as: ASD & VSD, Scoliosis, & Restrictive Lung Disease to name a few. So, I was pretty much told from day one that I’ll never be able to do this or I shouldn’t do that. Basically my time clock started on day one and after spending my first month of living at a hospital, my mother was told to come get me and take me home because there wasn’t anything left the doctors could do for me. That was in 1969. I will be turning 45 in September. Yippee!!!!

You’re probably wondering how I do it. How do I beat the odds? Never, ever give up. No matter how much life sucks or how dismal the outlook seems, you keep marching forward. I am a very realistic person who doesn’t want explanations from doctors sugar-coated. I want facts. Facts are something you can work with… Not the “what if” scenarios that can keep you in fear of a future event that may or may not even happen.

In 2006, I started going to a Pulmonologist who specializes in Pulmonary Hypertension. I went through the whole process of getting correctly diagnosed with PH for insurance purposes because my breathing was getting worse. At this time, I was already using oxygen 24/7 and taking cardiac medication for Ventricular arrhythmias. Although, I was still going out dancing at a dance club… Just no longer drinking any alcoholic beverages which I only did socially anyway years ago. Besides, I don’t need alcohol to have fun! *wink*

Since 2006, I’ve had a slow decline in health (so, no more dancing…boo!). I’m getting shortness of breath a lot more and I’ve had to increase my oxygen flow now. Instead of using 5 liters per minute 24/7, it’s now at 6 LPM. Each step of a decline in health hits me hard emotionally. There’s really no way to prevent the emotion side of things but if you can accept the fact that the human body wasn’t created to live forever in pristine condition, then it becomes easier to move past the emotional part. Once you are past the emotional part of accepting how you are physically today, you can actually learn new ways of getting things done in your daily life. There are going to be things you’ll find that you can no longer do on your own or at all. It will make you mad. It makes ME mad that I have trouble doing things that I once was able to do easier than before. It will help if you have family and friends who are willing to understand your condition and are able to pitch in to help without making you feel as if you’re an invalid which is so important! There is a fine line that helpers need to figure out with the person who has PH where the helper helps up to a certain point. I really believe if a helper does everything for the person with PH, the patient could end up giving up on life’s little joys. Then, depression sets in…which is a huge problem when living with PH. If you notice that you are getting depressed, talk to your doctor. Get help.. Don’t ignore it.

My advice for people living with PH or just diagnosed with PH is give yourself a break. You did not cause this to happen to yourself. It’s not your fault. It is very ok to allow yourself a “ME” day every now and then to give your body and mind a whole day to just rest. Find something that you absolutely love to do and have fun with it. For me, that would be reading, container gardening, or crocheting. Or just flip through a good cookbook to find a new recipe to experiment with. You need things that make you smile on days where you feel bad because, yes, you will have those days. Just don’t let yourself get lazy. Try to stay as active as you can but remember there will be days where you feel like you just can’t do it. Give yourself a break. It’s ok.

However you chose to battle PH, do not let it do more harm than good. Take your medicine as prescribed. If the medicine isn’t making you feel better or is giving you a bad side effect, contact your doctor to see if you can try a different medicine. Don’t just stop taking it and not tell your doctor. That’s dangerous. Also, if you are suppose to use supplemental oxygen, then use it like you’re suppose to. By not, using your oxygen properly, you are only harming your heart by making it work much harder than it needs to to pump more blood out to your body. You will end up starving your heart, brain and other muscles from that much needed oxygen that you refuse to use. So, give your heart and lungs a break and add possibly years to your life by using your oxygen and taking care of your body. Stay away from sick people. I do whatever I have to do to avoid getting sick. I get the flu shot every year. I haven’t had the flu in over 10 years. I also wash my hands a lot with just soap and water. You can use antibacterial soap but regular soap works just as well.. In my opinion! During flu season, my best friend are Lysol wipes….especially if my husband is sick. I tackle doorknob, tv remotes and light switches multiple times daily. Like I said, I do whatever I can to stay healthy.

As for getting use to wearing your oxygen in public, it can be a little scary at first. I write a blog all about Living On O2 for Life. People are going to stare because they are curious. Little kids will ask about my oxygen a lot to their parents first and then to me. I ALWAYS take time to talk to people who stop and ask me. There’s usually a family member or a friend who they know who uses oxygen or about to start using oxygen. If I can help them make life just a little bit easier for them, it’s worth a few minutes of talking with them. Don’t you think? I didn’t have anyone to ask back when I started using oxygen when I was 17 years old and still in high school. Of course, there was no internet either!

Life is worth living. So get out there and live it the way you can not by what you can no longer do.


8 thoughts on “This is who I am

    • Hello Riicardo,

      When were you diagnosed with PH? What have you found to be the most difficult to deal with having pulmonary hypertension? *hugs*to you! Keep up the great work! Wow! 53 years old. That’s awesome!


  1. I recently got a t-shirt from the CBS store that has a Sheldon Cooper (Big Bang Theory) saying on it, “People say you can’t live without love. I think oxygen is more important.” I think it will be an ice breaker for people who see me out & about with my portable oxygen concentrator.

  2. That was a great article Chris. It helped me think about all the problems I have with my health. I don’t know about where you are, but the huge hospitals have taken over all of our Doctor offices here in NC. They now tell the doctors what to do, and it’s not all good. When the Wake Forest Babtist and Forsyth hospitals bought out our local hospitals all he’ll broke loose. And this is going on all over the country. When I use to go to my doctors office everyone knew me and what was wrong with me. Now, no one knows me as all the old staff has quit and I am ask if I want to see a person who is not my doctor. It’s like a clinic instead of a doctors office. As per the news media, this is going on all over the USA. The last trip in to talk about my drivers licence change was met with total confusion on thier part, and they were the ones that told me to do it. As it is now, my drivers licence is wrong and I have never heard back from them how to get it changed .

    • Thomas,

      What’s that about your driver’s license? Why is the hospital or doctor so concerned about your driver’s license of all things? Shouldn’t they be more concentrated on your health? Did you try the DMV? The only doctor’s office that I go to where I am subjected to the “doctor pool” is at my PH office since it’s in the hospital. However, I just schedule my appointments on the days that my preferred doctor works. She sees patients on the Fridays we schedule my appointment for. 🙂 Monday’s she does Heart Caths.

  3. I love your advice. The hardest part for me was getting used to little kid stares. I worked in an elementary school for a year while on oxygen so I tried to serve as an ambassador for those on oxygen. I tried to show the kids that I wasn’t scary – I just needed a little extra to help me breathe. I also get questions all the time from people who have family members who are on oxygen or about to start as well. I think the movie coming out “The Fault in Our Stars” is going to bring knowledge of supplemental oxygen use a little more into the mainstream.

    • Yea!!! You are an Ambassador of Oxygen!! Congratulations! I think anything we can do to dispel the stigmatism that people who use oxygen are unapproachable would be a step in the right direction. And starting with educating the children about the use of oxygen is the right step. They are so curious and I think they welcome learning why we “wear tubes in our nose.” =o)


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

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s