Tuesday, May 6, 2014

Rejection, Oxygen & Re-transplant looming

They have been battening this rejection since June of 2013. Last hospital stay was January 2014. Since then they have been monitoring her antibodie levels and trying to get them to zero in the hopes her lung functions would come back up to normal levels. That included doctor visits and IVIG every month. Last month the docs said if her antibodies get down to zero there is a chance she would regain some ling function. Today she came in for a check up and IVIG and they said her antibodies are zero but her lung functions were down again, from about 35% last month to 25% today. Doc said that means she will need to be re-transplanted.

The plan right now is to get her back on oxygen, so she can be a little more mobile. She took the walk test and definitely needed O2! Then had to wait and do the test again to see how much she needed to bring her sats to normal levels so they could write the script. That all done we are off to get her IVIG treatment today.

They said there was no reason to entertain the idea of getting another transplant until they got her antibodies to zero because you can't get on the list of you have active antibodies. She has two more IVIG treatments before this course is finished. Then they will work on getting her on the list. So the process begins again! She is going to start getting all the preliminary appointments with all the other doctors out of the way, i.e. dentist, vision, gyno and the such. So at least we can get that out of the way early!

So my guess at the moment, and it's just a guess, is they should get her back on the list by July or August. Hopefully the process will be a little less crazy and faster this time around. Last time it took more than a year! This time around she is not having bunches of bad coughing fits so she should be able to drive and do more stuff while we wait. The last few months have been pretty hard because she can't breathe, now that she is back on O2 she should feel a little better on a daily basis. Hopefully with the antibodies gone her lung functions well stop going down and level off.

That's all I have right now. We will be at IVIG all day because it took so long to get her over here from the clinic. The home health company should be coming by the infusion clinic to get her first O2 tank to her. She has a hospital tank right now. Then we will set up a delivery schedule to the house. I will update again when we know more but don't expect much until next month or later.