one day at a time . . .

How things have changed.

It’s been over a month now that I’m on oxygen 24/7. I started my 6th round of IVs for 2011 on 12/24 and will be completing them later this week. After all this, how do I feel???

  • Just walking down the hall in my house makes me run out of breath
  • I need to raise the o2 when I go wash up in the morning because I run out of breath
  • Basically, everything makes me run out of breath
  • Looks like I will be on o2 continuously going forward
  • Bottom line: my CF took a drastic turn south in November/December

What now?

  • finish up my transplant evaluation testing
  • probably get listed for double lung transplant
  • may require IVs often
  • pulmonary rehab at a local hospital

Boy how things have changed.

I was always so fearful of the transplant option. I always felt like it meant that I would only have 1-3 years post transplant to live. But, now I understand that when you are ready for transplant, you are in fact extending your life as my life as it is now is numbered and is no way to live. I am so thankful for all my CF Transplanted friends! They are doing so well and are living into 5 and 10 years post! I even met someone that was 20 years post! I am definitely scared. I don’t know if I’ll be part of the good statistics. But I WILL DO WHAT I HAVE TO DO TO STAY ON THIS EARTH WITH MY FAMILY. Part of me hopes that I will start to improve and will be able to postpone the whole transplant thing. Oh how I wish this to happen. Only time will tell.

OH, How Things Have Changed. . .

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