56 - Clinic

Lindsey and Sierra both had clinic today.  It is nice to have them at the same time.  You wait the length of one patient, but get two done.  So, starting with Lindsey.  There really is nothing to change on her.  Her levels all look good. She will have a Cytogam infusion tomorrow (she will get this monthly for the first year after transplant).  This is a quicker infusion than IVIG.  It is only 4 hours instead of 12.  They turned her lasix down in the evening. So, she won't have to get up so frequently at night to use the restroom.  Her two VAD wounds where the tubes were, are scabbed over and almost ready to fall off.  As soon as they are off, she can go swimming and take a shower.  I am not sure which one she is looking forward to more.  Nothing really negative to report, all positive. 

Sierra, is acting and feeling great.  She will have her biopsy repeated on May 1st.  Dr. Rosenthal had said that he did not expect to see some of the effect of the IV medication that she was given for 3 months or so.  They added Cellcept in hopes that the combination of everything will start making a difference.  Being the devils advocate and wanting to know "what if."  I asked if this doesn't work then where to we go.  He said they would repeat plasmapheresis and try a couple other really strong meds they have.  The feeling I got was that we are not talking anther transplant YET.  There are more options they are willing to consider, as long as Sierra stays asymptomatic and allows the time to try them.  The "T" word (transplant) was never brought up in clinic today.  I get the feeling that the decline may happen over months, if none of the treatments work.  We have some time.  I am not saying or guessing how much, but some time.  To get the basis of the story,  Sierra's antibody levels have slowly been increasing.  When we were here in August, they decided to start IVIG therapy to start bringing them down.  This had worked for her in the past.  Every month she has received the IVIG, 12- hour infusion.  The antibody levels, kept going up anyway.  In February when they did her biopsy,  they found the antibodies are actually sticking to her heart.  This makes the heart muscle tighter or more rigid.  Thus, causing stress on the heart making her pressures go up.  They usually like to see heart pressures around 7.  In January Sierra's were 13, then a month later they had shot up to 18-19.  This month they were the same.  At least they weren't worse.  Maybe the treatments helped them from getting worse.  The summary being, we will go from month to month, and see what happens.  For now, we still have options.