May 10th, 2014 - Our recent visit up north

Well we got back late yesterday from a yearly checkup and have news, some good, some not so good.

First the good news, we met with an endocrinologist and Margaret gets to take a holiday from her anti-osteoporosis medicine!  She actually grew bone.  Now in all fairness, she did not grow a lot of bone but since she was losing it the fact that she now has a little more than before is great news.  The bone loss was mainly caused by the steroids, more on that topic later.

We also met with a dermatologist who found absolutely nothing to worry about.  This is also good news since her anti-rejection meds have a tendency to cause skin cancer.  She has already had a few dug out of her so we consider this good news.

We also met with hematology and most of her blood work was good.  Her FLC (Free Light Chain) numbers went up.  FLC is one of the markers for amyloidosis and this was cause for concern so they are taking her from ¼ dose of Velcade to a ½ dose of Velcade.  She was on a ½ dose before and then they reduced it to ¼ when her numbers were looking good.  He did say he would be ok if transplant says come back in 6 months, a good sign.  Every once in a while we mail Mayo blood so she would not be ignored.

Also had a meeting with transplant and most of her blood work was good from their perspective, they were saying that depending on the results of her cardiac biopsy we would probably be back in 6 months.  Well, that will not be the case, she had a grade 2R rejection level.  Huh, what the heck does that mean you ask, good question.  It gets a little complicated, basically there are 4 levels of rejection 0 (none) – 3R (not good) and then to complicate it a little there are two type of rejection.  We will call one type ‘normal’ rejection and the other is antibody rejection (bad kind, nobody wants this), she has a 'normal' 2R rejection.  She has had this before and they just upped her meds and that took care of it.  The second time you get a 2R it gets more fun, what is considered fun, try 1000 mg (that would be a one followed by three zeroes, sadly no typo here) of prednisone IV for three days in a row, oh boy!  Well we got a little lucky (just making lemon aid here), on Wednesday she got the 1000 mg and then transplant consulted with her PTLD hematologist and they agreed to just 500mg for Thursday and Friday because her EBV (Epstein–Barr virus) numbers were up and there is always a concern that the PTLD may come back, but for now her numbers are too low for that to happen.  So she had 2000 mg of prednisone in three days, no matter how you look at it that is a boat load of prednisone.  The rest of the cardiac numbers were just fine, her ejection fraction (EF) was good, angiogram was good, right atrial pressure was good and her echo was good.

Also her QRS duration was a little longer (...each P wave is followed by a QRS, blah blah blah) but that may be because of the rejection, if you want to know about QRS durations, Google it and you   have way to much time on your hands.  The increased QRS durations may be caused by a bundle branch block which she has, as do most heart transplant patients. She will be going back in two weeks and have another biopsy, echo and ECG (previously called EKG).

Overall this is not totally horrible,  it can be managed with medication, the tricky part is finding the right level of the right meds.  That appears to be a little tricky.

It just occurred to me that we are way to comfortable with all the medical acronyms, PTLD, EBV, CMV, M-Spike, SOB (hey, it means shortness of breath), FLC, AFIB, SCT, VGPR, BNP, etc...

We did run into Kendon and his family, they are doing well.  We did not get a chance to see Sister Pat, she was working.

That is all I got.  Thanks!