CONTACTS 

SUBJECTS
Letter to Primary Care Physician Notify Worsening Lymphedema and PET

0703 -
0703 -    ..
0704 - Summary/Objective
0705 -
070501 - Follow up ref SDS 11 0000. ref SDS 10 0000.
070502 -
070503 - Millie sent a letter today to the doctor, ref SDS 0 Q05H, asking about
070504 - findings of esophagitis in a recent PET scan test, and which was not
070505 - discussed during the last meeting. ref SDS 0 XE3M  The letter reports
070506 - progress on treating lymphedema, and that this condition has worsened
070507 - since the meeting on 060217. ref SDS 0 RE5X  Requests meeting with the
070508 - surgeon to review the record of the operation on 051021 for clues that
070509 - might shed light on the scope fo the problem, leading to treatment
070510 - ideas. ref SDS 0 VR6M
070511 -
070512 -    [On 060428 doctor asks about results of visit with BMS, evidently
070513 -    the letter today was not received. ref SDS 14 619N
070514 -
070515 -
070516 -
070518 -  ..
0706 -
0707 -
0708 - Progress
0709 -
070901 - Letter to Doctor Follow Up Action Items from Meeting on Feb 17
070902 -
070903 - Follow up ref SDS 11 Q05H, ref SDS 10 Q05H.
070904 -
070905 - Millie submitted ref DIT 1 0001 to Arlette, who is the lead nurse for
070906 - the primary care physician, and following up the meeting on 060217.
070907 - ref SDS 7 0001  This letter implements the draft prepared yesterday.
070908 - ref SDS 11 R69M
070910 -  ..
070911 - Millie says...
070912 -
070913 -    1.  I tried to use Kaiser's message system, but it does not yet
070914 -        support full doctor/patient communication.  Please pass this
070915 -        along to the doctor at a convenient time. ref DRT 1 0001
070917 -  ..
070918 - Mil sent this letter to Arlette, because the doctor has been reluctant
070919 - to get communications from the patient, other than through Kaiser's
070920 - new email system.
070922 -  ..
070923 - Millie says the electronic communication system Kaiser has developed,
070924 - and notified by the doctor on 051121, ref SDS 4 DO6F, per background
070925 - in the letter to Millie yesterday on 060319, ref SDS 11 R64P, does not
070926 - support full communication.  As a result, she sent this letter with
070927 - feedback for the meeting on 060217 to Arlette, who is the doctor's
070928 - lead nurse, and asks her to pass it along to the doctor.
070929 -
070930 -     [On 060324 same problem occurred working with VA; electronic
070931 -     message system does not have enough space to send a meaningful
070932 -     message. ref SDS 12 N158
070933 -
070934 -
070935 -
070936 -
070937 -
070938 -
0710 -

SUBJECTS
Esophagitis PET Scan Findings Requires Examination Based on Patient

1003 -
100401 -  ..
100402 - Esophagitis in PET Scan Requires Examination Based on Patient History
100403 -
100404 - Follow up ref SDS 11 XE3M, ref SDS 7 DH4O.
100405 -
100406 - Millie's letter to the doctor continues...
100407 -
100408 -    2.  I met with Doctor Johnson on Feb 17.  He submitted a report on
100409 -        a PET scan test dated 060120. ref SDS 7 DU7K  We didn't have
100410 -        time to review details during the meeting except the good news
100411 -        that no cancer was found. ref DRT 1 0H6F
100413 -         ..
100414 -    3.  After the meeting, reading through the report shows a finding,
100415 -        ref DRT 1 OG6J, of "likely esophagitis"... ref SDS 7 DH4O
100416 -
100417 -            [On 060428 PET scan test report omits report to compare
100418 -            with prior findings. ref SDS 14 PR9J
100420 -         ..
100421 -    4.  This helps explain problems the past 6 months or so coughing up
100422 -        during sleep at night, as shown in the record on 060126.
100423 -        ref SDS 6 D68K  I have forgotten to mention this during
100424 -        meetings with the doctor because, so far, problems have been
100425 -        occasional.  Naturally, the PET test findings increase concern.
100426 -        My sense is that examination can wait until the next meeting OA
100427 -        April 17, but I would like to get this matter on the doctor's
100428 -        list in his computer medical chart, so that we don't overlook
100429 -        it on the next meeting. ref DRT 1 HT7I
100431 -             ..
100432 -            [On 060428 no action pending rise of symptoms for
100433 -            esophagitis. ref SDS 14 PR9J
100435 -             ..
100436 -            [On 060523 CT contrast study for PET scan test on 060414
100437 -            reports findings of less than 1 cm lymph nodes within the
100438 -            "right paratracheal region" may relate to esophagitis,
100439 -            ref SDS 15 PA5G, reported in the PET scan test on 060116,
100440 -            per above. ref SDS 6 DH4O
100442 -             ..
100443 -            [On 060607 Millie admitted to emergency room for
100444 -            temperature of 104.2; xray shows pneumonia, ref SDS 16
100445 -            PT7S, doctor reports Kaiser's computer says Millie has been
100446 -            diagnosed with esophagitis, and asks how esophagitis is
100447 -            being treated. ref SDS 16 LO3H  Research indicates possible
100448 -            correlation between esophagitis and pneumonia. ref SDS 16
100449 -            I24L
100451 -             ..
100452 -            [On 060623 medical chart says esophagitis not symptomatic,
100453 -            ref SDS 17 X75J; there is no record of receiving the letter
100454 -            submitted today, 060320, listing symptoms, per above.
100455 -            ref SDS 0 X94Q
100456 -
100457 -
100458 -
100459 -
100460 -
1005 -

SUBJECTS
Emotional Support Unit at Kaiser Not Very Supportive Letter to Prima

1703 -
170401 -  ..
170402 - Emotional Support Unit at Kaiser Not Very Supportive
170403 -
170404 - Follow up ref SDS 11 RE4Y, ref SDS 7 Y64H.
170406 -  ..
170407 - Millie's letter to the doctor continues...
170408 -
170409 -    5.  Please mention that referral to BMS was not helpful; however,
170410 -        continued exercise and engagement in family and work are
170411 -        getting me back in the swim of things. ref DRT 1 WT8H
170412 -
170413 -     [On 060428 doctor asks about results of visit with BMS, evidently
170414 -     the letter today was not received. ref SDS 14 619N
170416 -      ..
170417 -     [On 080118 doctor recommends again Millie consult with Mental
170418 -     Health therapyst. ref SDS 18 X14J
170420 -      ..
170421 -     [On 080201 mental health therapyst advised that prior consultation
170422 -     dismissing Millie's need for assistance was improper. ref SDS 19
170423 -     SG7K
170424 -
170425 -
170426 -
1705 -

SUBJECTS
Lymphedema Worsens Excessive Exercise without Bandage May Have Cause

2503 -
250401 -  ..
250402 - Lymphedema Worsens Physical Therapy Effective Request Meeting Surgeon
250403 -
250404 - Follow up ref SDS 11 RE5X, ref SDS 10 Q05H.
250405 -
250406 - Millie's letter to the doctor continues...
250407 -
250408 -    6.  Mary Andre in the physical therapy department did a great job
250409 -        on referral for treatment of lymphedema. ref DRT 1 CO8M
250411 -  ..
250412 - On 060217 the primary care physician made referral to physical
250413 - therapy. ref SDS 7 VY3F
250415 -  ..
250416 - Millie met with Mary on 060414 and obtained guidance on treating
250417 - lymphedema. ref SDS 10 GE89
250419 -  ..
250420 - Millie's letter to the doctor continues...
250421 -
250422 -    7.  During the meeting on Feb 17, the doctor noticed that swelling
250423 -        in the left axilla had significantly receded. ref SDS 7 T56K
250424 -        Following the meeting, however, swelling of the left arm,
250425 -        wrist, and hand have increased.  In the past week, using Mary's
250426 -        instructions has brought this down a bit, so we now seem headed
250427 -        in the right direction. ref DRT 1 PY9G
250429 -         ..
250430 -    8.  I may be the culprit causing this new problem.  Working out at
250431 -        the gym on heavy weights seems to be the wrong activity for
250432 -        lymphedema.  As my strength improved in December and January
250433 -        from being off chemo (at last), I was lifting weights.  Thanks
250434 -        to Mary, I have reduced the amount of weight.  Don't know if
250435 -        this is the cause, but wanted to let the doctor know.
250436 -        ref DRT 1 309N
250438 -  ..
250439 - On 060306 Millie reported lifting weights in her exercise workouts.
250440 - ref SDS 8 Q04F
250442 -  ..
250443 - Research on 060306 showed Kaiser guidance calling from reduced
250444 - exercise with heavy weight. ref SDS 8 Q174
250446 -  ..
250447 - Research further showed that the left arm should be bandaged during
250448 - exercise. ref SDS 8 VV5T  Lack of notice from Kaiser of requirements
250449 - for exercise when afflicted with lymphedema may have contributed to
250450 - acceleration of disease.  Millie met with the surgeon on 051027 and
250451 - discussed lymphedema; there was no mention of procedures and
250452 - precautions to reduce advance of lymphedema. ref SDS 3 LI3K  There was
250453 - a meeting with the primary care physician on 051121. ref SDS 4 0001
250454 -
250455 -
250456 -
250457 -
2505 -

SUBJECTS
Surgeon Review Schedule for Guidance on Treatment Lymphedema Letter

3103 -
310401 -  ..
310402 - Surgeon Review Schedule for Guidance on Treatment Lymphedema
310403 -
310404 - Follow up ref SDS 11 VR6M.
310405 -
310406 - Millie's letter to the doctor continues...
310407 -
310408 -    9.  Would like to meet with the surgeon, Doctor Riley-Paull to
310409 -        review the record of surgery on 051021 for clues about what
310410 -        might have caused lymphedema to suddenly increase.  The surgeon
310411 -        indicated on 051127 that she wanted to be kept in the loop on
310412 -        complications.  Maybe she can be helpful.  Please see what
310413 -        Doctor Johnson thinks, and if he is okay with it, can you
310414 -        schedule a meeting.  Here is background on 060217 which you can
310415 -        forward, so the surgeon can prepare for a meeting. ref SDS 7
310416 -        SG3O
310417 -
310418 -           [On 060417 therapyst finds decreased swelling, marked
310419 -           improvement compared to examination on 060314; explains that
310420 -           removal of lymph nodes during surgery on 051021 may have
310421 -           triggered increased symptoms of lymphedema. ref SDS 13 2Z9M
310422 -
310423 -
310424 -
310425 -
310426 -
310427 -
310428 -
310429 -
310430 -
310431 -
310432 -
310433 -
3105 -