San Francisco, CA
S U M M A R Y
DIARY: April 25, 2008 03:09 PM Friday;
Millie had a CT test at Kaiser ordered earlier by UCSF to assess IBC.
2...Blood Counts Too Low for Treatment Need Solution
3...Airplane Precautions Guidance Requested Risk Cellulitis Lymphedema
4...CT Test Report Needed from Kaiser in Time Prepare for Meeting at UCSF
5...Hiking Best Time Ever at Lafayette Reservoir Energy Rising
6...Energy Patient Rising Conflicts Declining Blood Counts
7...CT Test Problem Needle 4 Penetrations Required Inject Contrast Medium
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Blood Counts NEUTS 1.05 Low Prevent Crboplatin Chemotherapy Treatme
1403 - ..
1404 - Summary/Objective
140501 - Follow up ref SDS 10 0000. ref SDS 9 0000.
140507 - ..
1408 - Progress
140901 - Blood Counts Too Low for Treatment Need Solution
140903 - Follow up ref SDS 16 XS6K.
140905 - Millie submitted ref DIT 1 0001 to the medical team addressed to
140906 - Doctor Rugo, with copy to primary care physician at Kaiser, and also
140907 - to Brigid, Jackie, and to Arlette...
140909 - 1. Blood counts rose minimally from .95 to 1.05 this past week,
140910 - reported during treatment at UCSF yesterday. Catherine
140911 - indicated the medical team decided not to prescribe Neupogen,
140912 - following up planning this past Wednesday (080423). ref DIT 1
140913 - 0001
140917 - ..
140918 - Airplane Precautions Guidance Requested Risk Cellulitis Lymphedema
140921 - 2. I am traveling to visit friends in Seattle, beginning tomorrow,
140922 - and return on Tuesday. Will take Keflex medication in case
140923 - Cellulitis flares up on the road. I will also wear a surgical
140924 - mask to reduce risk of infection on the plane, as well as a
140925 - full arm bandage to reduce effects of flight on lymphedema in
140926 - the left arm. Please advise of any additional precautions.
140927 - ref DIT 1 K75O
140931 - ..
140932 - CT Test Report Needed from Kaiser in Time Prepare for Meeting at UCSF
140935 - 3. As a result of being out of town, the CT test scheduled for
140936 - tomorrow was moved up to today. This should provide time to
140937 - get results from Kaiser by next Tuesday or Wednesday so there
140938 - is time to prepare for meeting with the medical team on
140939 - Thursday. By copy to Arlette, requesting a reminder to the
140940 - doctor to make distribution to me on Tuesday or Wednesday using
140941 - the usual email procedure. Thanks. ref DIT 1 K76M
140943 - ..
140944 - The test today ordered by UCSF during the meeting on 080403,
140945 - ref SDS 15 669L, was about 11 weeks after the prior test on 080212.
140946 - ref SDS 10 FP5H
140948 - ..
140949 - Millie received a letter from the primary care physician at Kaiser
140950 - reporting the doctor is out of the office and not answering
140951 - correspondence until 080428.
140953 - [...below, Millie reports problems CT test technicians
140954 - required 4 needle punctures to inject contrast medium
140955 - because only procedure is using needle in right arm, which
140956 - has been injured by prior needle injections. ref SDS 0 9W9I
140958 - ..
140959 - [On 080428 Millie received CT test report from Kaiser
140960 - demonstrating effective coordination and timely response to
140961 - the letter today. ref SDS 17 XV9J
140963 - ..
140964 - [On 080428 Millie submits letter thanking the doctor for
140965 - timely submission of CT test. ref SDS 17 659K
140967 - ..
140968 - [On 080430 Millie submits agenda for meeting to evaluate
140969 - progress starting cycle 3 on clinical trial. ref SDS 19
140970 - 1H6Y
140974 - ..
140975 - Hiking Best Time Ever at Lafayette Reservoir Energy Rising
140976 - Energy Patient Rising Conflicts Declining Blood Counts
140979 - 4. Did my best time ever this morning hiking Lafayette. Energy
140980 - seems to be rising while blood counts persistently decline.
140981 - Tried today not swinging the left arm to keep pace with the
140982 - hike, hoping to reduce trauma that may contribute to Cellulitis
140983 - relapse. Just guessing on this??? ref DIT 1 K77L
CT Test 080425 Evaluate Diagnosis IBC Progression Disease 4th Relaps
330401 - ..
330402 - CT Test Problem Needle 4 Penetrations Required Inject Contrast Medium
330404 - Follow up ref SDS 15 669L, ref SDS 10 FP5H.
330406 - Millie had the CT test at Kaiser this afternoon, which was ordered by
330407 - the doctor during the meeting at UCSF on 080403, ref SDS 15 669L, and
330408 - scheduled by UCSF at that time for tomorrow on 080426. The previous
330409 - CT test was at Kaiser 12 weeks ago on 080212. ref SDS 10 FP5H The
330410 - doctor changed from 8 weeks to a 12-week test schedule in order to
330411 - advance cost containment, and reduce injury to Millie's arm, and was
330412 - justified by patient history showing no evidence of distant metastasis
330413 - nor adenopathy, reported on 071009 ref SDS 6 985H
330415 - ..
330416 - Since Millie is leaving on a trip tomorrow, a few days ago, she called
330417 - Kaiser and changed the test to today.
330419 - ..
330420 - Millie took Gastrografin contrast medium an hour or so prior to
330421 - leaving for Kaiser to get the test, as prescribed for preparation.
330422 - She also drank generous amounts of water through the day to help the
330423 - medical team find a good access point for setting the catheter in a
330424 - vein or artery, as planned in the meeting at Kaiser 5 years ago on
330425 - 031205 1645. ref SDS 1 CF3F
330427 - [On 080428 CT test results show stable and minor conditions
330428 - of lymphadenopathy, no evident progression of IBC disease,
330429 - and no findings of distant metastasis. ref SDS 17 EO8F
330431 - ..
330432 - [On 080502 Kaiser lists Gastrografin as current medication
330433 - prescribed for Millie's care. ref SDS 21 T38N
330436 - ..
330437 - Millie was crying and very upset today, when she returned from Kaiser
330438 - much later than expected. CT tests normally take about 30 minutes in
330439 - the testing room. Today it took over 3 hours. She was actually gone
330440 - for 4 hours today.
330442 - [On 080718 CT test with Power Port failed, because the medical
330443 - team failed to review and implement product liturature on
330444 - correct usage, and which had been submitted to Kaiser 10 days
330445 - prior to the procedure; wound up using an IV, and work took
330446 - almost 2 hours. ref SDS 27 YG4K
330448 - ..
330449 - Despite Millie's careful and thorough preparation this morning,
330450 - including drinking a lot of water, per above, ref SDS 0 XM30,
330451 - technicians had a lot of difficulty again making a needle penetration
330452 - to inject contrast medium for the test. Today was worse than the last
330453 - CT test on 080212 when the technician made only 2 mistakes.
330454 - ref SDS 10 FP5H Today, they made 3 mistakes, similar to experience on
330455 - 070930. ref SDS 5 5G5J At that time, UCSF made adjustments to reduce
330456 - suffering by extending time between tests from 8 to 12 weeks in order
330457 - for Millie's arm to recover enough for CT test needle penetration to
330458 - inject contrast medium, reported on 071009. ref SDS 6 I48R However,
330459 - on 080207 the doctor had to revert back to an 8 week schedule to test
330460 - for IBC relapse. ref SDS 9 GH5M
330462 - ..
330463 - Only on the 4th needle penetration was the CT test injection of
330464 - contrast medium successful. This was very painful and traumatic
330465 - experience. Each attempt takes 20 to 30 minutes, because the
330466 - technician tries with various means to make blood flow, including
330467 - using saline flush.
330469 - [On 110429 1230 case study on similar problems at VA in
330470 - Martinez, getting adequate blood flow through IV catheter,
330471 - related to dehydration from heavy exercise and low water
330472 - intake hours before medical care; solved by getting another
330473 - nurse to complete work. ref SDS 31 SR8M
330475 - ..
330476 - As before, today the technician ignored Millie's suggestion to make
330477 - the injection on the inner arm and below the elbow. After 2 failed
330478 - attempts, the technician left the room to get help. It took 20 or so
330479 - minutes for another technician to arrive. Initially the second
330480 - technician also ignored Millie's suggestion. She tried to make the
330481 - injection in a vein on the top of the hand. After this failed, the
330482 - 4th needle penetraion was eventually successful getting blood to flow
330483 - at the location Millie originally suggested 90 minutes earlier. The
330484 - technician was then able to inject contrast medium for the CT test
330486 - [On 080708 doctor accessed vein on top of right hand for IV to
330487 - draw blood for test to verify INR sufficient to enable surgery;
330488 - used local anesthetic that prevented pain, and used hand pump
330489 - process to force blood draw from the vein. ref SDS 26 ME85
330491 - ..
330492 - This was very painful because each needle puncture took about 20
330493 - minutes for the technician to push the needle around probing for a
330494 - place that would flow. When there seemed to be some blood flow, the
330495 - technician had to determine it was sufficient for the injecting
330496 - contrast medium. This was done by pressing the arm, pushing the
330497 - needle further into the arm. Millie was asked to raise her arm, then
330498 - to raise the other arm, and to pump her hand in an effort to increase
330499 - blood flow. When the technician finally determined the flow was
330500 - inadequate, the needle was removed, and another location was tried.
330501 - Over a two hour period, constant probing and pushing the needle into
330502 - multiple locations on the arm was painful and emotionally draining,
330503 - precisely the conditions which were intended to be avoided by
330504 - implanting the port catheter, explained at Kaiser on 040402.
330505 - ref SDS 3 V750
330507 - ..
330508 - This was frustrating and stressful for the technicians, who are very
330509 - professional, but are not trained to use the port catheter that makes
330510 - injections fast and easy, which was the rationale for implanting the
330511 - port catheter explained by Rosalie at Kaiesr on 040402. ref SDS 3 V750
330513 - ..
330514 - Continuing difficulty making needle punctures for CT test injections
330515 - causing serious injury to the patient reflects prior problems reported
330516 - at Kaiser on 040318. ref SDS 2 CO3G At that time, the doctor
330517 - explained using a Port Catheter for IV injections and blood draws to
330518 - avoid trauma from difficulty making needle punctures for IV
330519 - injections, essential for patient care. ref SDS 2 RX9O On 040402
330520 - Rosalie discussed advantages of implanting a port catheter.
330521 - ref SDS 3 V750 On 040419 a port catheter was implanted. ref SDS 4
330522 - PPSW This solved the problems for nurses in the Infusion Clinic,
330523 - however, the port could not be used for CT test injections. During
330524 - that time in 2004, Millie received CT tests only 2 - 3 CT tests per
330525 - year. Her arm had time to recover from needle penetrations. As noted
330526 - above, when Millie entered the clinical trial for care at UCSF, more
330527 - frequent CT testing on an 8 week schedule caused new problems, so the
330528 - doctor changed this to 12 weeks, per above. ref SDS 0 N074 Now even
330529 - the 12 week schedule has damaged Millie's arm to the point that
330530 - finding a vein for an IV injection is very difficult,
330532 - ..
330533 - Millie said the technician today was afraid to use the port catheter
330534 - to avoid injuring Millie's arm with excessive needle penetrations.
330535 - Kaiser procedure does not allow using a port catheter for injecting CT
330536 - test contrast medium, because high pressure from the injection process
330537 - might damage the port catheter, causing serious damage to the patient.
330538 - Millie reported feeling no evident increased pressure during the
330539 - injection of CT contrast medium than is experienced when nurses in the
330540 - Infusion clinic inject chemotherapy medication.
330542 - [On 080428 Millie reported problems to primary care physician
330543 - at Kaiser, and requested investigation to upgrade the port
330544 - catheter to handle CT test contrast medium injections.
330545 - ref SDS 17 1H6Y
330547 - ..
330548 - [On 080429 Kaiser checking on switching to a "Huber" needle
330549 - to avoid problems making injections of contrast medium for
330550 - CT tests. ref SDS 18 1H6Y
330552 - ..
330553 - [On 080430 letter to UCSF requests report on experience
330554 - using this method to relieve problems from excessive needle
330555 - penetrations for injecting contrast medium to perform CT
330556 - tests. ref SDS 19 W65Q
330558 - ..
330559 - [On 080501 Brigid explained that CT test injections of contrast
330560 - medium causes higher pressures on the port catheter, and so
330561 - UCSF began installing only Power Ports designed for higher
330562 - pressures. ref SDS 20 766K
330564 - ..
330565 - [On 080502 primary care physician sent a letter to surgeon
330566 - at Kaiser investigating follow up surgery to upgrade
330567 - Millie's port catheter implanted on 040419 to a "Power
330568 - Port" for injecting CT test contrast medium in order to
330569 - avoid further injury, pain, and suffering, ref SDS 21 VG5J;
330570 - there is also consideration of using the existing port
330571 - catheter by slowing the rate of injecting contrast medium
330572 - for CT tests (point 2), if that is possible, which reduces
330573 - risk of damaging the port from high pressure that occurs
330574 - from CT test injections. ref SDS 21 847I
330576 - ..
330577 - [On 080508 Millie asks primary care physician about
330578 - progress scheduling surgery to upgrade the port catheter
330579 - to a Power Port for injecting contrast medium in time
330580 - for the next CT test. ref SDS 22 GO8G
330582 - ..
330583 - [On 080520 Kaiser did not respond; Millie sent followed up
330584 - letter asking Kaiser to coordinate with the Surgery
330585 - department on expediting Power Port surgery, ref SDS 23
330586 - GS8K, in time for next CT test expected in 4 weeks.
330587 - ref SDS 23 TV4S
330589 - ..
330590 - [On 080523 Millie received a letter from Kaiser advising
330591 - that the surgeon reports Kaiser can upgrade Millie's port
330592 - catheter to a Power Port, and he made a referral for this
330593 - work to be performed, ref SDS 24 MG6F; this will solve the
330594 - problems reported on 080425 injecting contrast medium for
330595 - CT tests.
330597 - ..
330598 - [On 080528 Millie notified the medical team at UCSF that Kaiser
330599 - was making progress upgrading to a Power Port for solving
330600 - problems injecting contrast medium for CT tests. ref SDS 25
330601 - IJ6W
330603 - ..
330604 - After the technicians finally completed the work, Millie left the
330605 - treatment room. There were a lot of angry patients who were waiting
330606 - to get tested and were delayed because of difficulty with Millie's
330607 - test that took about 3 hours today for reasons presented above.
330608 - ref SDS 0 I76K
330610 - ..
330611 - When Millie arrived home, there were 3 black and blue spots already
330612 - forming on her arm. Mil wants to investigate how to improve CT test
330613 - injection process. She recalls hearing about a new type of port
330614 - catheter that accomodates CT test injections better than the one
330615 - implanted by Doctor Riley-Paul on 040419. ref SDS 4 0001
330617 - [On 080428 Millie reported problems to primary care physician
330618 - at Kaiser, and requested investigation to upgrade the port
330619 - catheter to handle CT test contrast medium injections.
330620 - ref SDS 17 1H6Y
330622 - ..
330623 - [On 080429 Kaiser checking on switching to a "Huber" needle
330624 - to avoid problems making injections of contrast medium for
330625 - CT tests. ref SDS 18 1H6Y
330627 - ..
330628 - [On 080430 letter to UCSF requests report on experience
330629 - using this method to relieve problems from excessive needle
330630 - penetrations for injecting contrast medium to perform CT
330631 - tests. ref SDS 19 W65Q
330633 - ..
330634 - [On 080718 CT test with Power Port failed; wound up using an
330635 - IV, and work took almost 2 hours. ref SDS 27 YG4K
330637 - ..
330638 - [On 080811 Kaiser in Walnut Creek discovers the CT Department
330639 - at Kaiser in Oakland has experience using Power Port
330640 - technology. ref SDS 28 L45M
330642 - ..
330643 - [On 080903 Kaiser schedules next test at Oakland CT Department
330644 - to use the Power Port. ref SDS 29 IO4U
330646 - ..
330647 - [On 080911 test successfully performed using Power Port at
330648 - Kaiser CT Department in Oakland. ref SDS 30 LK3R