Friday, June 18, 2010

Mixed Emotions

What a great day that ended on a sad note. It started off only having rehab to look forward too, but at 4:45pm this afternoon I got a call to let me know I was actively placed on the transplant list. One of the tx coordinators called to tell me I have been officially listed. The average wait time at Duke is 21 days and I have a friend who waited only 38 days for her official call. She did have a dry run where she was called, but the lungs turned out no good so she was sent home to keep waiting. That isn't uncommon. I'm so ready for this. I was trying my best to walk around the track today with my rolling walker, O2 tank, and a headband with an O2 monitor wire stuffed in it attached to my forehead; I was thinking there has got to be a better way than this. I can do this rehab as a weak post transplant patient rather than a breathless pre-transplant patient much easier any day. I would rather have pain than no air. Of course we can stop to catch our breath, but it totally wipes me out by the end of the day. I get frustrated with myself. The people at the center are great. They are patient and kind. I will make it through the program, but it is one of the hardest things I've ever done.
On another note, tonight I found out through facebook that my Grandmother passed away. I immediately called my mother to confirm that what I was reading was correct and it was. I knew she wasn't doing well, but to hear she had passed already was a bit of a shock. She was my Dad's mom and has been in a nursing home for many years now. She is in a much better place and reunited with my Grandad. It was a great day and a sad day. I am thrilled that I am on the home stretch to getting my new lungs, but I feel like I should be at home with my family. I know that isn't possible at this point. I just have to believe that God has me in the right place at the right time. I Love my family and they know I would be there if I could. Lets just hope now my wait for the call isn't too long.

4 comments:

  1. That's great to hear you're active on the list at Duke. It's just a matter of time before the call comes!

    Sorry to hear about your Grandmother. It must be especially hard to be away from your family right now.

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  2. My condolences for your loss, Pam. Rehab is definetly difficult when you can't breathe! I can't wait for you to be able to go around without O2!

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  3. Glad you are finally "official." Your rehab doesn't sound fun at all, in fact, highly unfun. Just keep chanting: they must know what they're doing, they must know what they're doing, etc. All you can do is all you can do :)
    Sorry you are not by your extended family right now with the death of your grandmother. May you feel her love and closeness in the upcoming days.

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  4. Hi, I'm Erin Knight's mom, and I just read your post on her blog. I'm excited to be talking to someone who is going through the same thing as Erin and who is also living away from home. You can email me at erincas@yahoo.com.

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