4/18 - Baylor College of Medicine - Report

Jane, Rae and I met with Dr. Stribling today.  I brought her up to date on changes to condition since I had seen the BCM last.  First they BCM were to review the MD Anderson scan from March.  They reported that they could not read the disks that I had MD Anderson send over.  We will have to try again.

Here's the key points.
1) My blood pressure that they measured at the office was 76/53 which is much to low and thus I should lay off the Nadalol.  My home kit measured 98/57 which is much more normal.   The BCM measurement may be in error but low blood pressure can explain the loss of temp control and partially the fatigue I have been experiencing. .
2) The weight I gained recently is due mostly to water build-up in my legs and waist.  Water retention is not a good and thus Dr Stribling recommended stepping up the Lasik. As the water is driven from the body, the electrolyte balance can get off and cramps (like the ones I had before) can occur.  I will need to do what I can to mitigate this as we increase the Lasik.
3) Sadly, BCM still does not feel I am a candidate for a transplant for the same reason(s) as before.  Dr. Stribling said I could get a second opinion but what I would really like is to have them looking at the most current scans.
4) I asked about a direct attack on the new lesions with a TACE.  I told Dr. Stribling that Dr. Kaseb at MD Anderson was not a fan of TACE to which she replied that they could do it there at St. Lukes.
5) Then the most exciting news. Dr Stribling said that the bilirubin level can be raised by fever and natural fluctuations.  I missed the clinical trial that Kaseb wanted  to try by 0.1 or 2.1 where the upper limit for the study is 2.0.   BCM was going to take their own bloodwork to see what the level is today.

I'm going to leave this post as matter of fact until I have fully digested the data.  Hopefully I will see Dr. Kaseb soon to discuss the plan forward.