Well it's official I am in Chronic Rejection.
So what does that mean... well.... the blunt answer, my donor lungs are failing. But there are still a lot of things up in the air.
I just had another appointment in Cleveland. My lung function was stable at 28%. While that's not really where I would like it to be, it's better than hearing it went down again. While out there I had an oximetry test done. It's a test where they see what your oxygen levels do while you are being active. This test showed that I need to be on oxygen when I'm out and about doing things. I'm also going to need oxygen when I sleep at night. I'm not excited about having my old friend back. However - I'm hoping the oxygen at night will help me sleep better and ultimately give me more energy.
There really isn't a whole lot left to try, the rejection has made itself at home and it's not going anywhere. So we are now in Maintenance Mode. EVENTUALLY I will be listed for another transplant, but we are not there yet. My Drs exact words were "lets milk these lungs for as long as we can." A 2nd lung transplant is complicated and not done that often. There is no telling how long it'll be before they list me or how long it'll be before I need oxygen all the time. Life just doesn't give you those answers.
I'm not sure what was worse, hearing that my body is failing, and well we know what that leads to, at 22 years old or 30 years old. I think this time around it's mentally tougher to deal with. I had already knew where my life was headed at 18, I accepted that. I accepted that I would probably never marry or live on my own or even see 30. It just didn't seem in the cards for me. Now, I have an amazing husband, a house of my own, I got my life back. Just this past Summer I was hiking up a mountain - now stairs are my worst enemy. So dealing with this drastic change has been a lot harder this time around. I got a taste of the good life and I'm not ready to give that up.
That being said, if you know me, you know I'm just going to keep doing me. I learned a long time ago that if I want to do it, I can - even if I'm slower at it or it takes me longer or I have to ask for help. I'm not going to live in a bubble. I'm still going to go out and enjoy life. I'm so grateful for the past 4 1/2 years of awesome health - I would of been gone a long time ago if it wasn't for my donor. These bonus years have been amazing and I'm not done living yet. I may have bad days or feel depressed sometimes but at the end of the day when I close my eyes, its a way to reenergize and start over.
And to the questions I get asked most often...
- "What's next." I have no answer for this. I don't know. I'm just going to take it a day or week at a time. That's all I can do. I can't dwell on the negative- that's physically and emotionally draining.
-"How are you doing/feeling" - I'm fine. I'm feeling good. I'll let you know when and if I'm not feeling good.
- "What can I/we do?" Nothing. There is nothing anyone can do - this is just my life.
I appreciate the worry and love everyone has for me. But I'm not made of glass, I'm not on the verge of breaking. Please, don't worry so much. My Dad told me a long time ago - Until they invent time machines, if you can't change it, don't stress about it. And I live by those words. I try not to let too many things bother me. I'm still going to laugh everyday. I'm still going to go to work. I'm still going to do things that make people say "should you be doing that?" I'm still going to be me - I don't know how to be anything else. I'm always willing to answer or at least try to answer any questions you might have about CF or Transplant. I'm an open book, 95% of the time.