I do not know how soon we can expect to see this scan in widespread use in the US, but there is a clinical trial for this peptide on the clinical trials.gov web site that recently changed its status from "Recruiting" to "Closed." The title of the trial is "Radioimmunoimaging of AL Amyloidosis" and the responsible party is Dr. Alan Solomon of the University of Tennessee, another well-known doctor in the amyloidosis community. I assume the study is essentially complete and the results will be published in the near future. It is hard to predict what impact this new tool will have on the diagnosis and treatment of amyloidosis in the US, but I think any additional tools available to doctors can only be a good thing.
Ok, now to Mom. After a difficult trip home from Chicago on Sunday and a trip to the emergency room on Monday, she was feeling better for her appointment with her internist, Dr. M, on Tuesday, October 29. We decided my sister Amy would take Mom to this appointment so we would have two sets of ears there, and also so Amy could give Dr. M more details than Mom could about what happened the day before with the emergency room visit. The three main things discussed with Dr. M were:
- The events since returning from Chicago. Dr. M said what happened can definitely be explained by the high blood pressure, the need for dialysis, and Mom not sleeping with her CPAP machine for three nights. Mom must sleep with her CPAP machine going forward, and we may have to be more cautious about letting her go three days without dialysis, such as from a Thursday to a Monday.
- Blood pressure. We have been concerned about Mom's blood pressure creeping up and getting harder to control with medication. Dr. M said Mom's nephrologist should really be on top of that, since the kidneys play such a large part in regulating blood pressure. Mom already had a prescription for hydralazine which she was to take only as needed, when her systolic blood pressure (top number) was over 180. Since she is having to take that so frequently now anyway, Dr. M gave her a prescription to take it three times per day.
- High calcium. Mom's nephrologist (Dr. N) is still trying to determine the cause of Mom's high calcium, but her internist (Dr. M) said Mom's September 16 blood tests did not show her calcium levels to be high. Well, that is confusing. Hopefully Mom can talk to Dr. N at the dialysis clinic on Friday.
The major concern now is the blood pressure, since after this latest addition Mom is now on three medications for her blood pressure. Earlier this year she was only taking one daily medicine for her blood pressure, with another one (clonidine) to take when her systolic pressure was over 160. Hopefully her nephrologist will get more involved and help bring her blood pressure down. She did feel well enough to drive down to Austin the following weekend and spend three nights. Yes, she did use her CPAP machine.
Mom usually sees the nephrologist at the dialysis clinic on Friday, but he was not there the first Friday after Mom's appointment with her internist so she did not see him until Friday, November 8 to discuss her blood pressure. In the meantime she had been keeping a close watch on it with the new medication prescribed by her internist, and it was better but still high at times. Dr. N agreed that they have to get her blood pressure down, so he made another change to her prescriptions. He took her off one medicine she was taking for heart palpitations, and he added two more for blood pressure. So now she is on five different blood pressure medications. (Geez, it was only three in the last paragraph.)
Dr. N did lower her dry weight, so that is some good news. Regarding the high calcium, he said he still wants to determine the cause although it was not very high. He did not know what the latest blood test results from the clinic showed, and Mom didn't either because the new dietitian has not been as consistent in providing those reports to the patients. (I do know it was 11.0 at her latest emergency room visit, which was after three days without dialysis.) The next test he wanted to have done is a CT scan (with contrast) of her chest, abdomen and pelvic region. She had that on Tuesday, November 12, but we will have to wait until the next blog post for those results.