Wednesday, April 8, 2009


Day + 26 Health Score 83

It looks like NPR co-opted Barbie's phrase, 'a new normal'. Of course, they were describing the new economy, not our family life. Yesterday was a busy day. Since Santa Clara and Stanford are so far away, we try to pack in as much as we can. We left at 4:00 AM to be at Kaiser, Santa Clara at 6:15 AM for the heart biopsy. Then a visit in the cardiac transplant clinic. 20 miles north brings us to Stanford for a chest x-ray and one last visit to the ITA to make sure I was improving from the pneumonia. Everything looked well and I was discharged from the ITA to clinic. We then had an appointment with Dr Schrier at 3:00 PM to address the amyloidosis. At this point we watch the light chain levels and my symptoms. As a urologist, my older male patients can become obsessed with their PSA level (marker for prostate cancer). The same can happen with light chain levels, however, they can be vary spurious in their values, even in the same lab. So you can't put too much weight on one number. I asked them when I should get my first lab test and they at least a month, but that it can take a few months to drop. Anticipating the clinic visit, I had a Kappa light chain level done on Sunday, (probably a little too soon) To call the transplant a success, the value should drop by 50%. But which value do I use? The Stanford pre-BMT value of 32 mg/dl or the Kaiser pre-BMT value of 16.5 mg/dl? The kappa light chains level was 9.3 mg/dl, which is certainly trending in the right direction. My heart biopsy was NER, No Evidence of Rejection. I haven't had that result in over 4 months. (Then again, with no bone marrow for 2 weeks, there was nothing to cause rejection).

All in all, things are moving in the right direction. We bought an exercise bike today so that I can begin reconditioning and training. The bike may be stationary, but I am moving forward.



Anonymous said...

way to go!!!!
Our new chant is

Dissappear--kappa light chains--disappear!!

Unknown said...

Heading in the right direction, yeah! Wishing you and your family a very blessed, glorious Easter.