Pre-transplant considerations

1. Pre-transplant considerations Annette Humberson, LISW-S, CCTSW Cleveland Clinic, Liver Transplant Team June 23, 2017

2. Beginning of the transplant journey… • Maybe you were told years ago you would likely need a transplant… • Or maybe your health has deteriorated suddenly, and this is a transplant emergency… • Hope for a healthy future & normal lifestyle - living with someone else’s organ? • Worried if you’ll be approved, or receive an organ in time? • Coping with the anxiety and the “unknown” • Will it work? • Survival & quality of life

3. Why do I have to see a Social Worker? • Social Work roles • Components of our evaluation: • Evaluation information + Education throughout • Daily functioning • Financial Coverage – fundraising needed?, medical coverage, medications • Drug & Alcohol Use history, need for treatment? • Mental Health, Personal history • Identifying CAREGIVER(S), education about roles, support

4. The Caregiver Role • Demanding - Very important - Very rewarding • Required to be listed for transplant • It changes throughout the journey • Before their transplant – Help keep them as healthy and active as you possibly can. Educate yourself about their condition and needs. Go to appointments with them, be knowledgeable and aware. • Immediately after their transplant –Keep them motivated, following the rules, learning the new routine of medications, lab work, etc. • During recovery – help them get back to living a “new normal” life

5. Symptoms to Know About and Watch For • JaundiceThe yellow color of skin and/or eyes, cause by the build up of Bilirubin. • AscitesAbdominal swelling due to fluid retention. May need to have fluid withdrawn (paracentesis). Often told to follow a LOW sodium diet – typically 2000mg or less. • Pleural effusionFluid retention in the chest. May need to have fluid withdrawn (Thoracentesis). Can make breathing very difficult. • EdemaLower body swelling in general due to fluid retention. Often treated with Lasix. Can impact their mobility, balance, etc. • ItchinessCan be extreme and cause sores on the skin. • Restless legNot experienced by everyone, but can impact sleeping. • Muscle crampingOften happens at night and can be extreme. • Muscle wastingCan make them feel weaker, mobility impacted, and can affect balance. • Extreme TirednessThey may never feel rested. They are under extreme stress and many of the symptoms can impact their ability to sleep.

6. Some Symptoms to Know and Watch For ENCEPHALOPATHY • Hepatic EncephalopathyWill appear as confusion, forgetfulness, being “foggy”, trouble forming a sentence, difficult to communicate, slurred speech, disorientation, sleepy, could get lost driving or much worse. It can happen at any time and can be VERY,VERYdangerous. Caused by high Ammonia levels in the blood from the damaged liver. Immediately call the Transplant Coordinator, see your Doctor or go the ER if you are worried. It is Treated with Lactulose – it is VERY IMPORTANT that doses are not skipped always follow your medical team’s instruction. Affects many patients before a transplant. After a transplant, it may take days or a few weeks to completely go away.

7. The Caregiver Role • Demanding - Very important - Very rewarding • Required to be listed for transplant • It changes throughout the journey • Before their transplant – Help keep them as healthy and active as you possibly can. Educate yourself about their condition and needs. Go to appointments with them, be knowledgeable and aware. • Immediately after their transplant –Keep them motivated, following the rules, learning the new routine of medications, lab work, etc. • During recovery – help them get back to living a “new normal” life

8. Critical Caregiver “Jobs”Before, During and After Transplant • Medical Aide • Personal Trainer • Hall Monitor • Driver • Chief Financial Officer • Travel Agent

9. Some Critical Caregiver “Jobs”Before, During and After Transplant • Cheerleader • Head Coach/Warden • Advocate – You are the expert on your loved one. You see them all the time. Don’t be afraid to ask questions or point out if something seems wrong or different. If you don’t ask…, there could be dangerous mistakes made.

10. Patient & Caregiver Checklist – Be Prepared • Find out who the Coordinator is – know how to reach them. • Find out who the Social Worker is – know how to reach them. • Learn the names of their medical team. • Establish a Secondary Caregiver – line of relief support. Get them involved. • Create a chain of communication to keep people updated. • Inform work (caregiver’s and patient’s) as to what is going on and what may happen. • Learn your insurance benefits & resources, including medication coverage: private insurance, Medicare, Medicaid, VA options, etc. • Ask questions and learn the details of their condition and symptoms • Create and update a medication list and take with you everywhere

11. Patient & Caregiver Checklist – Be Prepared • Develop a food ingredient plan (low sodium!!!) for them • Develop a list of their current overall appearance and demeanor and monitor them • Understand their driving rules – develop a transportation plan • Consider putting a monitoring App on their phone if they have confusion • Develop a “go time plan”. There will be times pre-transplant and when the transplant happens when you need to be able to leave the house, pets, plans, etc. and simply be there for the patient. Prepare contingencies. • Understand you could have a “dry run” and the patient not receive a transplant even if you’re called in. Prepare yourself and the patient. • Allow others to help you! You can be the “coach” but you need team members to support the patient and you as the caregiver! • TAKE BREAKS! • Reach out for help – Help is available.

12. Coping & your mental health • This is a marathon process… not a sprint • Normal coping mechanisms may or may not be enough • Seeking help, sign of strength • People are “living with” chronic medical conditions they never did before • Learning to “live” while you wait, will help you “live” & create a “new normal life” after transplant • Transplant is a treatment – not a cure

13. Written by Susan Fayne, wife of a Liver Transplant Patient at the Cleveland Clinic • “Together we persevered and lived through those horrendous ordeals; he as a patient and I as a caregiver”. • Available on Amazon • All proceeds benefit The Transplant House of Cleveland

14. Online resources • American Liver Foundation/liverfoundation.org • UNOS Transplant living/transplantliving.org/transplantpro.org • American Transplant Foundation/americantransplantfoundation.org • AASLD/aasld.org • National Foundation for Transplants/transplants.org • American Organ Transplant Assosiation/aotaonline.org • Transplant Buddies/transplantbuddies.com • Donate life/donatelife.net • Facebook/encephalopathy-support-group • chrisklugfoundation.org/chrisklug.com/transplant.html(maverickgreyhounds@yahoo.com) • Genetic and Rare Diseased (GARD) Information Center - rarediseases.info.nih.gov/GARD/ • Alpha-1 Association/Alpha1.org • American Lung Association/lungusa.org • Children's Liver Disease/childrenliverdisease.org • Alpha-1 Foundation/alphaone.org • Alpha-1 Research Registry/aplhaoneresgistry.org • Madison's Foundation/madisonsfoundation.org • Childhood Liver Disease Research and Education Network/childrennetwork.org • National Foundation for Transplants/Transplants.org • PSCPartners.org

15. It is a journey for the patient and the caregiver………… ………….A journey worth taking together Post transplant