Thursday, October 23, 2008


I haven't written in a long time.  I had planned to write this morning with the title, "I miss my husband."  For the past 1 1/2 weeks he has not felt well.  Because of that he has been moody, fatigued and over all not himself.  It has made life at home unpredictable.  We had an amazing few weeks when we got home from Santa Clara where he felt great and was ready to go back to work, wanted to travel, and write.  And then he started Revlimid and Decadron for the amyloid.  Whether it is related or not we don't know for sure, but heart rejection began.  That may be why he has felt so incredibly crummy.  

My post this morning would have been before more news today from the transplant team.  Sue Murray, our transplant coordinator called with results from Kevin's heart biopsy this week indicating that it showed the same rejection as last week.  I was sad that the increases and changes in his medication had not helped, although his labs showed high levels of his cyclosporine.  There is reason to believe that possibly Revlimid is causing rejection based on T-cells.  Kevin will explain this much better than I ever could.  What it means to me and us is that he may need to be off Revlimid until they know more or can figure out the cause of rejection and stop it.  For how long, we don't know.  A good thing is that the heart biopsy also showed no sign of Amyloid on his new heart.  So far this heart is undamaged by the disease. That is great news!! 

This afternoon, while I was busy with Rebecca and Caitlin doing girly things for the wedding, Kevin needed to go to Kaiser Roseville to receive an unexpected infusion of Solumedrol.  Based on his rejection this week, he will need another infusion tomorrow and the day of the wedding, following the reception.  Just when we thought we were moving along smoothly, this happens.  It's another reminder that not everything in life goes as planned.  

We are well.  He will be at Rebecca's wedding.  Our boys and their spouses will be here.  And that is all we can ask for at this point. 

As far as having my husband back, I think next week he should start feeling better.  At this point in time, it is hard to know exactly how his body will react to drugs, when he will feel good and how much energy he will have at any given time.  I'm grateful that somewhere in my life I learned to be flexible.



Anonymous said...

i am sorry to hear about your hard week.  I am also sad i wont be there for rebecca s wedding. Finn has fever on 103.5 and we plan to hunker down for the weekend.  I think about you guys everyday and will call after all the festivities with the wedding leslie

Unknown said...

Dear Barbie,
I, too, am sorry to hear about the difficulties of the last couple of weeks. I think we learn to be flexible as mothers... it starts with our firstborn, doesn't it? God teaches us that in no uncertain terms and it really does serve us well. Hang in there... we'll pray for a unexpectedly good day for Kevin tomorrow.
Jennifer RN