Duke Lung Transplant Friends
Lung Transplantation
A Guide for Caregivers
by
Wayne Bulla

                                             Disclaimer
This guide is in no way directly associated with DUMC, or its affiliates. It was written by a caregiver for caregivers for the sole purpose to better prepare them for this overwhelming experience.

v  Consider the number of medical professionals it takes to care for your loved on in the hospital: a doctor, a nurse, a nurses aid, a physical therapist, a pharmacist, a social worker, respiratory therapist, a diabetes team, a renal team, a dietitian, transporter, medical secreatry.  Upon hospital discharge, YOU will take the place of all these professionals.  You alone will perform the tasks of more than 10 people. 

v  An 18 hour day for you is possible with insulin given every 6 hours from 6:00 AM thru Midnight, along with IV medications given every four hours around the clock. 

v  On top of vital medical tasks you will perform as a caregiver, let’s not forget you still need to sleep, eat, shower and run errands.  Given the enormity of these tasks, being informed, organized, and having back-up help at the ready is crucial to the patient’s full recovery, not to mention your own mental health.

v  The days and hours prior to discharge are filled with anxiety and excitement.  The first few days at home can be overwhelming as you try to make sense of all the medications, discharge instructions, and medical appointments.  Some of this can be alleviated by making discharge preparations ahead of time.

v  Important preparations include: purchasing necessary supplies, equipment, groceries and medications, and putting together a Control Book reference binder. 

v  The Control Book is akin to your Transplant Bible or Daytimer.  It should include divider tabs for schedules, vitals log, medication lists, phone numbers, calendar and miscellaneous notes. 

v  Develop a Master Schedule for quick overview of the day’s tasks: meds, insulin, vital stats, PFT (Pulmonary Function Test / Spirometer), any med changes and miscellaneous notes.  Timing with last minute discharge instructions will require revisions, but it will be important to have the basic format organized and ready.

v  Many patients rely on only one caregiver which limits time for errands. The first day home may include one or several home health care visits to deliver products and train you on tube feeding and IV management.  It will be a very busy few hours and days! Try to run errands prior to discharge.

v  Your time for visitors and phone conversations will be extremely limited.  Prior to discharge, develop a simple and concise way to update family and friends. Consider Mass Email distribution lists, blog sites or phone chains to decrease the time spent personally updating people.

v  It’s okay not to answer the phone (if you have caller ID) or to tell friends you can’t talk.

v  The patient may require assistance getting dressed, going to the bathroom, walking, getting in and out of recliner or bed. These all take time and patience.

v  Almost all patients return to the hospital at least once if not more so.  You must be mentally and physically prepared

Introduction

Helpful Hospital hints