The next chapter: Life with Oxygen

Today was a day that I have not looked forward to happening in my journey in life with CF.  The day that oxygen was delivered to my house for 24/7 use or even only night time use.  I have always thought that when this day happened it meant “I was getting sicker” and that my life was on a downward spiral of CF progression.  In my life there have always been milestones that have signified different steps of CF progression to me.  Not everyone thinks the same as I do, this is just me.

The first really big thing for me was the first time I had to go into the hospital for IV antibiotics, lots of breathing treatments and airway clearance with clapping (aka “beating”) and the percussor (aka “the vibrator”) followed up with IVs at home for a few weeks.  This to me was the first sign I was sick and couldn’t get away with just doing breathing treatments, “beatings” and oral meds at home anymore.  I managed to embrace the new way of life when I was sick and what do ya know I survived!

Next up was needing a port for regular IV antibiotics.  Ahhh!!!  It was going to be a constant reminder that I was sick because you would always see the scar and feel the port.  I fought the port for a long time but finally gave in.  It was the best decision I ever made when it came to my health care.  A port made life so much easier when it came to managing IV antibiotics and being able to do them at home easily.  My veins got to a point where there was no other choice because they weren’t accepting PICC lines anymore.  They would collapse and were very scared therefore it made getting a PICC line in was very difficult.

The next big milestone in life with CF that I dreaded happening was oxygen use at home.  To me the thought of oxygen was so limiting and final and was yet another constant visual reminder that I was sick.  Now that I am here and needing oxygen it’s not as scary as I thought.  Maybe I’m more accepting because I am having such a hard time breathing and maintaining my oxygen saturation that I know I need it.  It is defiantly a mental trip though.  It’s not like I have had the best month when it comes to the emotional side of things.  It doesn’t seem to take much to make me emotional right now.  I did shed a few tears today about gaining this new friend called oxygen.  It also brought up thoughts and memories of my mom being on oxygen which made me miss her even more (don’t know how that’s possible) and want nothing more than to call her up and tell her they delivered oxygen today.

Someone made a good point yesterday when I was talking with them.  They said that I haven’t even really had a chance to grieve because I went right from moms passing into the hospital.  She was right.  I have had to focus on me getting better.  Then, BAM, tears come, the memories come and the broken heart of missing my mom comes.  I want more time with her.  The last “in person” time I had with her was when I dropped her off at the airport from her visit.  She was at the ticket counter and started to cry.  I told her that August would be here before we knew it because I was planning on going to KC then.  Well August will be here in 6 months but mom won’t be there.  I also was going to surprise her for her 60th birthday (April 7th) by flying in town.  This is hard.  I never imagined going through this now.  I want more time with her.  I miss her so much.

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Life with oxygen begins as does the wrangling of the lovely green tubing.  There will be many times of getting hooked on just about anything in the house and my head being yanked back.  Let the fun begin!!!

Until next time…

4 thoughts on “The next chapter: Life with Oxygen

  1. I’m really sorry about your mom, Shannon. I can’t imagine how hard that must be. Moms make our worlds go round. Much love to you today as you continue on your CF journey. Change is scary, yet necessary. You are so strong and you always have such a positive attitude. I really admire you.

  2. Let’s try this again! I posted a comment before, but it appears it didn’t go thru. I am really sorry about your mom, Shannon. That is unimaginably hard. Moms embody unconditional love here on earth. I know you will see her again, as cliche as that sounds. You are so strong and I really admire you and respect how you’ve handled yourself on this CF journey. I don’t know you that well, but can imagine you inspire lots of others who have CF. Keep it up. We are rooting for you.

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