Listed!

Hi and happy Friday! 

Somehow I thought it would feel different to actually be on the transplant list.  Nope!  It's probably because I know how long it's going to take to find a set of lungs that will work in my body.  Yesterday, just before the lecture part of rehab, several people were saying they were listed and got a call within a day or hours...mine's going to be months so I'm not too worried.  FYI...their calls ended up being "dry runs".

It was interesting to listen to the other transplant candidates asking each other what their LAS (Lung Allocation Score) was...sort of like asking someone what grade they got on a test.  Since I don't even know my LAS I can't participate in those discussions.  Lee and I noticed that Duke has added at least ten people to the group since I started the first of October.  They keep on going!

I didn't have any tests this week (after my non-tests on Monday) so I've actually been able to go to rehab for the remainder of the week.  In an earlier blog I had mentioned that I'd have to go to 23 days of rehab both before and after transplant.  When I said that I was thinking to myself how easy that would be.  Nope!  It's not easy at all to get 23 full days in.  Since I started on October 5 I have completed only 10 days!

Lee and I went to two "Transplant School" classes this week.  Those are lectures for the patient and caregiver that are geared specifically to transplant.  The first one was about diabetes.  It's very likely that I will have diabetes, at least for a while, after the transplant.  Apparently they start testing your blood sugar levels during surgery and start insulin as needed right then!  The medications that I'll be given have a real tendency to drive sugar levels way up.  Then, as they taper down those meds, my sugar levels might drop back down.  But...not necessarily.  That's why they have a lecture specific to diabetes.  Finger pricks and shots may become a new way of life but I will be able to breathe and that's a good trade-off for me :-)

The second lecture was about Duke Home Care.  Alice, the head of Home Care came to talk to us about how we won't be alone - even if we might feel like it.  They are going to teach us (patient and caregiver) how to do all sorts of stuff like giving insulin shots or cleaning feeding tubes or hanging food for the feeding tube, etc.  She did stress that wound cleaning was not required of the caretaker.  I was glad to hear that for my caretaker team ;-)  All in all it was interesting and Lee was good with what he heard.

It seems to have been a long week for both of us.  We're both tired and ready for a rest with no appointments for the next two days.  I have a massage appointment at 9:00 tomorrow morning but that's different!!!!

The waiting continues...

Have a great weekend.

Love,
Lee, Wendy and Missy