Welcome to the Bridge

The Bridge #2

Summer, 1997

 

I have been fishing off this bridge for almost a year now and have only gotten a few nibbles from other liver transplant recipients. Undaunted, however, I carry on with the second edition, because I am sure that there are those of you out there just a little too shy to be the first ones to share your thoughts with the world.

I'd like to dedicate this The Bridge #2 to the support group who carried me through, from the time I considered transplantation until I was able to walk and talk on my own. They are still in my life, thank heavens, even after very difficult moments.

 

For Families and Waiting Patients

Below is some information compiled from an exchange on the transplant group listserv (email: listserv@sjuvm.stjohns.edu or go to the FAQ website for more information about this group). The discussion was about the support community who is vital in the care, feeding and recovery of transplant patients. Just after transplantation, we recipients are often a very a needy group, no matter how competent we have been in our lives before illness or transplantation. Because of the trauma transplantation can cause, there are trying times for support people. Times when it seems we will not make it through, times when we are not ourselves, and times when our loved ones are exhausted with concern and confusion about how to handle the great challenges. Hopefully, some of the ideas that transplant recipients and support people came up with to help with communication post-transplant will be helpful to others.


I would like to thank David Schafer, M.Ed., Staff Psychologist in the Physical Medicine & Rehabilitation Department at Temple University Hospital in Philadephia, PA, who sent this compilation of suggestions for families and support people after transplantation.

There are a number of predictable psychological problems that occur in the ICU environment with transplant patients on ventilator support. The following suggestions have made this experience somewhat more manageable:

  • Orientation aids, such as calendars, clocks, and personal artifacts (family photos, kids' drawings, etc.) can be placed within view of the patient. Even a large banner stating, "You made it!", with the number of days post surgery might be helpful. As others have written and experienced first hand, transplant patients in the ICU who are temporarily ventilator-dependent are prone to cognitive disorders including impaired orientation and memory.
  • Compensatory strategies for the above problems include repeating information in a simplified manner, delivering information both visually and verbally, using illustrative aids and gestures, and continuing to monitor the patient's recall and understanding of instructions and information provided.
  • Communication- try handwriting, a picture/word communication board to express basic needs (fear, pain, dr., nurse etc.) and ideas to which either the patient can point, or family member point with patient indicating some sort of 'yes/no' response (eyeblinks, headnods, etc.). Discuss with your transplant psychologist or Speech & Language Pathologist in advance of surgery.
  • Dyspnea/Anxiety- cold facial stimulation such as a wet washcloth or air (even at ambient temperature) directed by a fan toward the face can produce a significant reduction in breathlessness. Some well-practiced, effective methods of relaxation learned prior to surgery (cassette tape with headphones) may come in handy during the post-transplant ICU stay.
  • Medications- In addition to behavioral strategies and emotional support, many individuals benefit from the selective use of psychotropic meds (anxiolytics for extreme anxiety, neuroleptic agents to control agitation, antidepressants to treat extreme fatigue and apathy). Discuss in advance with your physician.

    • Other Ideas from the transplant group:

    The Organ Transplant Ring

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