Day 69 Saturday, June 18th

Friday was a long day but not as long as Thursday and we got good news so that made it better.  We had a meeting with transplant in the morning and everything was good.  When they do a cardiac biopsy they take 5 pieces of tissue (five easy pieces, a movie right?).  One of the pieces showed a very little amount of rejection, such a small amount of rejection they don't care.  In fact there could have been 3 areas with this amount of rejection (1R is what they call the level of rejection) and they still wouldn't care.  We found out there are two main categories of rejection, cellular and antibody rejection.  She has the cellular type which is no big deal, if they were to do something about it, if it were a higher level they would just up her steroid for a few weeks and then bring it back down.  The antibody type is more serious, it is when the body is bringing more troops to fight the heart and the body remembers that there is this foreign thing that has to be gotten rid of so it would mean raising her anitrejection meds permanently.  She has the cellular type and not the antibody, yippee!  She will have at least one more biopsy before we go and we will see if this one area of tissue they took was just a fluke, either way it is easy to deal with.

She also had an ultrasound of her neck where she had the blood clot because at biopsy time they thought it might have gone away and they wanted to officially check.  If it has gone away (dissolved) they she may be able to stop giving herself shots everyday.  We will find out next week so in the mean time she keeps shooting up.

In the afternoon we saw hematology (amyloid doc).  Her numbers went down!!  Apparently it is not that unusual after a transplant since her antirejection meds are lowering her white blood cells, one type of white blood cell is what is causing the amyloid so an across the board lowering of them will also reduce the bad ones also.  He also is in no hurry to perform a stem cell transplant since her amyloid numbers were low and now even lower, he still thinks she will eventually have one but unless her numbers change it will not be this year. For you experts in the disease her FLC (free light chains) was 4.4 and her ratio Kappa/Lambda ratio is .05.  Her M spike was 0.9.  Her IgG went from 1500 to 1010!!  We are pleased by all this.

There was one thing that transplant was going to look into, her donor heart had Epstein-Barr (mono).  According to the CDC, In the United States, as many as 95% of adults between 35 and 40 years of age have been infected. Well I will be nice and say she is over 40 and she has never had it  Even though two weeks before our wedding she was diagnosed with mono - fun time, great timing.  Well apparently she never really had mono and is in the 5% who have never been exposed to it.  There concern is she might get it from the heart which has had it.  The virus is showing up in her blood work at a VERY low level but she doesn't have the disease yet.  Transplant was going to talk to infectious disease and see what their recommendation will be, worse case is she gets mono and then we deal with it.  She had been on anti-viral meds as normal procedure after a transplant, they may want to start her up on those again for a while which they think should get rid of the virus from her and the heart.

Oh by they was we asked about why people who have had a stem cell transplant smell like creamed corn they day they get their cells back, it is the material that the cells are packed in and that comes out of you smelling like creamed corn.  You can always tell when someone in the transplant house got their cells, you can smell the corn!

All in all a good day!

TTFN!

PS. Don't know what TTFN means, ask Tigger!