Patient Family Information (top)

Members of patient household relationship age empl. or School mother 38   sister 11 school brother 18 school & working brother 9 school brother 19 college

Other Members of patient family relationship notes father remarried - 1 child

Comments (top)

• will need nephrectomy; parathyroidectomy
• (3 hospitals); Does not want to go to [city hospital]

Referral Text (top)

Betty was referred to social services for evaluation and assessment of the appropriateness of the hemodialysis and transplant programs for her needs

Background Information
Betty lives with her mother *** 38, sister *** 11, brother *** 18, and brother *** 9. Her older brother *** 19 is living with his grandmother. Mr. and Mrs. Stevens have been separated approximately seven years with their divorce being finalized last April. He is remarried, has a child 1 year old and lives near ***. Betty sees him only on Sundays. Mrs. Stevens is presently on ADC and also has a part-time job at *** in ***. Betty is now in the 8th grade but has missed a good deal of this school year. Her sister *** is seeing a psychiatrist mainly to help with her reactions and acceptance of Betty's illness and special attention. She seems to be overly jealous and hostile toward Betty at times. She was hospitalized recently for an asthma attack. Betty gets along with her three brothers quite well and they do not appear to have had problems accepting Betty's situations which *** has. Mrs. Stevens has been hospitalized three times for psychiatric care during the past seven years, beginning at the time that she and Mr. Stevens were separated. (Betty states that her mother is finding it difficult to cope with the problems she is faced with and that she usually drinks every night at home.) Betty states that she gets along well with her peers but is generally quiet and shy. She has enjoyed school up to this past year, when she transferred toa public school where discipline and disruption have been a problem and the experience has been somewhat upsetting to Betty.

Betty has chosen a transplant as her treatment of choice because it will allow her greater freedom and involves fewer visible signs of her illness (shunts, dialysis schedules)

Reaction to Illness
Because Betty has had kidney problems since age 3, she has been restricted by fatigue, recurrent hospitalization, etc. most of her life. She has been unable and/or afraid to tell her peers anything about her illness for fear or rejection or ridicule. She feels her illness has already made her different from others. She is anxious that there be no furthre signs of her illness. Having chosen transplantation, she feels also that she would rather have a cadaver donor instead of her mother, because she's afraid something could happen to her mother post-transplant when she still have family responsibilities.

Mrs. Stevens initially wanted the machine because it involved less risk. However, she now feels that transplant is the most appropriate treatment in view of Betty's feelings and needs. She felt she would like to be the donor because of the greater chances of success, but is now feeling that she cannot make up her own mind and that"the doctors will have to decide this on the basis of their own information." She has requested placement at *** for outpatient dialysis should this arrangement become necessary for Betty prior to transplant. Mrs. Stevens is familiar with this hospital and it is near their home.

Impression
Betty is a very perceptive, understanding and articulate young girl. She has expressed no hostility toward her mother or sister in relation to their undesirable behavior, but rather has explained quite rationally potential causes of this behavior. She appears to have assumed a socio-economic role within the family. She feels that her family is very close and although they often argue, they do understand one another. I cannot be sure at this time that other family members have the level of acceptance and understanding which Betty is expressing.

Peer relationships are quite important to Betty at this point and her fears of rejection are very evident. She feels she cannot accept any visible signs of her illness which wold obviate the differentness she is feeling, and necessitate an explanation for her friends. She has consquently become rather shy and self conscious and withdraws from much peer interaction. A transplant, to Betty, offers the best chance to be 'normal.' Her empathetic perception of her mother's situation and general stability has no doubt caused her to request a cadaver donor, although there may be additional underlying reasons which Betty has not yet expressed. Her major concerns at this time, having definitely decided on a transplant, are,

• whether she will grow more so that she will look her own age, especially with steroids,
• whether her bladder will still work so she can possibly void normally,
• and what will be involved if she goes on a machine prior to transplant.

Recommendations
I recommend Betty for a cadaver transplant at this time. The possibility of her 18 or 19 year old brothers donating has not yet been considered or investigated. I do not feel her mother is an appropriate donor. In view of her own needs it would probably be most appropriate for a physician to tell her initially that she will not be considered, in order to avoid any guilt or further breakdown.

Closing Summary
Betty received her transplant 1/9/74. Her brother *** was the donor. Both brothers, *** and *** were eligible and willing donors and it was decided that because *** was older and most mature, that he would be the most appropriate donor. Betty did well medically and is now living with her father and step-mother in ***. She has been reintegrated into the family and hopes to go back to school this month.

Betty has dealt with her transplant experience on a fairly intellectual and insightful level in view of her age. She was able to accept her brother as a related, donor, with reassurance from him as to his willingness to undergo the procedure. Should the kidney reject at some point in the future, Betty will need additional help in dealing with her guilt feelings.

At Mrs. Steven's request, Betty's younger sister *** was referred to [hospital] for continued treatment relating to her acting out behavior precipitated, at least partially, by Betty's illness and special attention

Mrs. Stevens has continued under psychiatric care. However, her psychiatrist will be leaving shortly and this may influence her ability to deal with her family responsibilities.

Betty plans to live with her father for an indefinite length of time as he is better able to meet her needs at this time (clinic visits, special diet).