Tuesday, March 26, 2013

Being the odd one out

   I got my test results back from my sleep study a few days ago. When I sleep my oxygen levels drop a few times but not for a long enough amount of time to qualify me for oxygen at night...of course.. why would anything come easy for me? But the study did show that there's a possibility that when I sleep I'm doing something to block my airways occasionally. So next time I go to the doctors I have to talk to them about it to see if they want to do anything. As for now, I plan on using oxygen when I sleep because I personally think it helps me. 

   On a completely different subject, I went to my friends house the other night for a girls night. I was really excited to be invited over for a girls night, especially because I hadn't gotten to have a girls night in a long time. When I got there I was really excited to see my friends. I absolutely LOVE spending time with my friends and seeing my friends. But lately I've realized that being around my friends is really hard for me emotionally. And I always feel left out, even though I'm not. I've never really been a "party girl" by any means but I do drink on occasion. And having a girls night would've been one of those occasions. Obviously, since I've started getting really sick and since I started this whole transplant process I have stopped drinking altogether. Just because I don't want anything to jeopardize me getting my new lungs. I would hate to get my call and to have to say "Sorry Stanford I'm drunk right now so I can't take these lungs, maybe next time". How good would that look? So when I got to my friends house and saw the three bottles of alcohol on the counter I automatically felt/knew I was gonna be the odd one out..as if showing up with oxygen on didn't make me feel that way already. Don't get me wrong, I'm not ashamed of my disease or anything like that. I'm just not use to having to wear oxygen quite yet. Sitting there listening to them talk about college life, work, the classes they have to take that's gonna 'kill' them, who's dating who, and whatever else. I just think, I would give ANYTHING to have those petty things be my biggest problems in life right now. I would give anything to be able to act my age for once in my life. But instead I have to worry about if I took my medication today, did I do my breathing treatments before I left the house, and am I gonna get my call in time. And if I do get my call, what if something goes wrong afterwards. I understand that to some people those things I consider petty are/can be life changing events to others. I just wish people would be more thankful for that they have. And more cautious of what they say or do when others are around. 

My friends!
Jen, Me, Juli, Bree, Alexa, and Jenna :)
(left to right)

   Prayers and good thoughts are always welcome and appreciated. Also, please continue to pray for my cyster Mikayla, she has hit a few bumps in her road to recovery with her new lungs. I am also still selling my 'Just Breathe' 'Amanda' bracelets. They are $3 each and all of the money goes to help with the expenses that my family and I have throughout my transplant process. Thank you <3

-Amanda :) 

1 comment:

  1. I have CF too and my PFT is 30%. about 5 months ago I asked the doctor for oxygen because i too feel better with it. I did a sleep study and I was not eligible for it. About 2 months ago I went into the hospital my stats dropped the 85% and they put my on oxygen. But later in the week when they tested me again to report it so i could get oxygen, but they were 94% and above. So i talked to the doctors and i told them how much i want it and said how good it makes me feel when i wake up and they said they are going to get it for me and just write a letter to the insurance. It took 3 weeks to get but i got it. I am suppose to be on .5-1.0 liters but i do 2.0 because the others don't seem to help me. I do it whenever i want because it makes me feel good.
    I am going to be evaluated next friday for a lung transplant. I hope they accept me!
    Good luck with everything :)