BMT Day +118 Four firsts … GVHD responding … turning it all around

Day of four firsts

Today was a day of firsts, small but significant events that happened for the first time in 5 months. 

Teri wore ear rings.

Teri ate out [but Qdoba did not agree with her tumnmy.]

Teri walked without a walker with assistance.

Teri went shopping for summer pants with her sister Terri.

Teri:  "It was a great day!"

GVHD is responding

The biopsy results came back and confirmed ‘mild’ tissue GVHD.  Three forms of corticosteroids are working to halt the injury and incessant diarrhea including IV methylprednisolone (systemic = total body), oral prednisone (systemic) and oral budesonide (local to the intestinal wall).  Her stools have firmed up in the space of 48 hours.  However, her gastrointestinal tract still seems delicate, sensitive and easily perturbed ala the severe Qdoba belly ache that is keeping her up tonight and not succumbing to a narcotic.

Clinic visit with Dr. H.

Teri was animated, humorous, upbeat, and most of all, thankful, 

“You look much better than four days ago!”

“I have never worked as hard on one patient as I have with Teri.”  B:  “Yeah”

How did Teri turn it around, regain her spark? 

Dr. W. her psychologist came to see her in clinic today with Dr. H.  Teri said she feels much better and had her spark back for the first time.  Teri spoke freely about how her mood and attitude have recently improved since discharge on 5/28.  She described putting her foot down.  First, she negotiated with the doctors (while I was in clinic) to discontinue the nasojejunal tube (feeding proboscis) that had become totally plugged (probably by coagulated protein).  That is, if they couldn’t open it up tube with guide wires or cleansing solutions, they would remove it and she would do her best to eat.  She won that battle.  She refused to undergo a bronchoscopy to sample a new lung lesion just prior to her discharge.  I asked Dr. H. to instead try antibiotic therapy and delay the test to a later date if and when she became sicker.  She won that battle.  She also reiterated that she was not going to return to the hospital as an in-patient.  She is winning that battle – all the doctors now present the alternate ways they can manage her myriad problems in Day Hospital.  Teri won three battles!  Superwoman kicks butt.

What seemed to transform Teri then was regaining her moxie, getting reempowered, recovering her autonomy that had been lost amidst all her hospitalizations and left her with clinically reinforced helplessness and powerlessness.  What she rediscovered was what clinicians call ‘self-efficacy’, perhaps one of the most important and ignored patient resources.  That is developing one’s ability and responsibility to take care for one’s chronically illness evolving from being the victim of the disease and to becoming master of ones self.  As a clinician I also find it to be critical in managing chronically ill adolescents but often don’t know how to help the patient achieve that state of mind.

Jack is coming!