Caring for your Kidney Transplant. Aneesha A Shetty, MD MPH Northwestern Memorial Hospital

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1 Caring for your Kidney Transplant Aneesha A Shetty, MD MPH Northwestern Memorial Hospital

2 Overview Transitions Transplant Medications Health Maintenance Taking control of your care This lecture pertains to the care of the abdominal transplant patient

3 Transitions

4 It s a Whole New World Brand new parts Need maintenance Information overload New medications New words New symptoms good and bad New anxieties Transplant team Addition to your family Use their expertise When in doubt ask!

5 Health Care Team Medical Providers physician/surgeons Mid-Level Providers Advanced Practice Nurses (NP s) Physician Assistants (PA s) Transplant Nurse Coordinators Social Workers Clinical Support Staff

6 Transitions in Care Early Hospital stay 2-4 days Information overload 0-3 months Medication adjustment Weekly follow ups Weekly labs Home monitoring Hardware removal Protocol biopsy (3mo) Intermediate 4-12 months Medication adjustment 3 monthly follow ups 2 weekly labs Protocol biopsy (12 mo) Late > 12 months Medication adjustment Annual follow ups Monthly labs Protocol biopsy (24 mo)

7 Labs Schedule Center Specific Laboratory Test 0-1 months Basic Chem Panel Comprehensive Chem Panel 1-2 months 2-3 months 3-12 months After 1 year 3x /week 2x/week 1x/week 2x/Monthly Monthly Once Annually CBC with diff 3x /week 2x/week 1x/week 2x/Monthly Monthly Drug level (FK, Csa, Rapa, MMF) 3x /week 2x/week 1x/week 2x/Monthly Monthly Lipids Once Annually PTH/Cpeptide/ A1c/UA Once Annually Urine Dip Every clinic visit Every clinic visit Every clinic visit Every clinic visit Every clinic visit

8 Transplant Medications

9 Transplant Medications Immuno - suppression Blood pressure Infection prevention New (temporary) illness Medications Chronic conditions Eg. diabetes, gout Over the counter Eg. vitamins, pain meds

10 Transplant Medications Immunosuppression Tacrolimus/Prograf Cyclosporin/Neoral/Gengraf Prednisone Sirolimus/Rapamune Everolimus/Zortress Mycophenolate mofetil//cellcept Mycophenolic acid/myfortic Belatacept/ Nulojix Infection prevention Bactrim/Cotrimoxazole Prevents a type of pneumonia and UTI Valgancyclovir/Valcyte Prevents CMV infection Mycelex/Clotrimazole Prevents oral thrush (fungal infection)

11 Side Effects Related to Immunosuppression Medications Increased risk of infections Long term increased risk of cancers Skin cancer most common Medication specific Tremors Tacrolimus, Cyclosporine Increased risk of high sugars Tacrolimus, Prednisone Low white blood cell counts Mycophenolate, Everolimus Oral ulcers Sirolimus High lipids/cholesterol Sirolimus, Everolimus Diarrhea Mycophenolate Poor wound healing Prednisone, Sirolimus, Everolimus

12 Know your medications Name of the medication Brand vs Generic Dose How many milligrams? How many times a day? What is the milligram strength of the pill itself? When did you last refill Don t wait until you run out to refill Carry an updated list with you at ALL times Consider taking your medication bottles with you to your doctor visit

13 Medication Adherence Missing medication doses can lead to loss of your transplant! Risk factors for poor adherence Adolescent recipients Mental healthy conditions, dementia Poor social support Medication cost Medicare coverage lasts 36 months after transplantation for kidney transplant recipients A sharp spike in medication nonadherence due to affordability is commonly observed at this point Have a back up plan secondary insurance Social work support Mandatory at every center Can help guide you through financial issues

14 Health Maintenance

15 Infectious Disease Issues Tell your transplant team if you have Fever New GI symptoms diarrhea, vomiting, abdominal pain New respiratory symptoms cough, sore throat, chest pain, breathing issues Any other concerning symptoms The workup for infections may include Blood, urine and stool tests Some form of imaging study Xray, ultrasound, CT scan Referral to an infectious disease specialist Prescription of antibiotics Change in your immunosuppression medications temporary In severe cases, hospital admission Infection prophylaxis (prevention) medications You will be on these medications in the initial post-transplant period Important to prevent common infections like pneumonia, CMV infection, thrush

16 Immunizations No vaccines for first 3 months Immune system unable to build the resistance Live vaccines are contraindicated MMR, Typhoid (pill), Varicella, Yellow Fever, Rotavirus, Influenza (nasal), BCG, shingles Recommend Vaccines Influenza Yearly Pneumococcal polysaccharide every 5 years Tetanus and diphtheria Booster every 10 years Hepatitis A and B usually only once HPV Once for males and females age AST 2009 Guidelines

17 Travel and Infections Different parts of the world have different prevalent infections Inform your transplant team of any travel plans Possible travel related interventions Special vaccinations Antibiotics for prevention of certain infections Referral to travel infections disease clinic Be aware of your food sources Uncooked food and unhygienic places are a No-No

18 Weight management Obesity (BMI > 30) affects up to 40% of kidney transplant recipients within 5 years after transplantation Not on renal diet anymore! Associated with Shorter life of the kidney transplant Increased risk of diabetes after transplant Weight management must focus on both Caloric intake nutritionist assistance often helpful Increased physical activity

19 Common Cancers Rarely due to donor derived disease Greatly increased Non-melanoma skin cancers Squamous cell Basal cell Kaposi s sarcoma Lymphoma Renal cell cancer Gynecological cancers Modestly increased Testicular Bladder Colon Lung Prostate Stomach Esophagus Pancreas Ovarian Breast Liver - Hepatitis B, C Anus

20 Cancer Screening Skin Yearly dermatology visit Colon Colonoscopy every 5-10 years Breast Mammogram every 1-2 years Prostate Yearly PSA test (blood), Rectal exam Cervical Pap smear every 1-3 years

21 Other Medical Issues High blood pressure High lipids/cholesterol Diabetes Obesity Heart disease Gout Anemia

22 Dental care Dental procedures can increase risk of a blood stream infection that affects the valves of the heart Bacterial endocarditis Inform your transplant team about any planned dental procedure Pre-procedure antibiotic regimen to prevent infection Transplant center specific protocol

23 Pregnancy Happy outcome of a successful transplant Higher risk, especially when Transplant kidney function is poor Uncontrolled diabetes or high blood pressure Older maternal age Important to adjust immunosuppressive medication BEFORE TRYING TO GET PREGNANT (before stopping birth control) Some medications can be harmful to fetus in the first trimester Always follow with a specialized High Risk Obstetrician Keep your transplant team updated of developments during your pregnancy

24 Smoking cessation Lung cancer risk is even greater in transplant recipients Increases risk for heart disease, stroke Relapse incredibly common Don t Give UP!! Combination of behavioral and pharmacologic approaches for best effect Counseling Nicotine replacement Patch, gum, lozenge, inhaler, nasal spray Buproprion Varenicline Smoking cessation clinics

25 Mental Health Issues Depression, Anxiety Common after transplant ~ 30% Higher risk if have previous history Some triggers Going through life changing event Complications after transplant cause dejection Anxiety about life of transplant don t want to return to dialysis Medication side effects Seek help early these are treatable conditions

26 Miscellaneous Care Pain and Numbness around your transplant Weight lifting restrictions after surgery Hernia risk Water intake 2-3 L/day Takes practice Food hygiene Bladder issues Small bladder not used to large volumes of urine Can train your bladder

27 Take control of your care Your transplant team is a there for you. When in doubt. Ask questions

28 Information is power Have all your doctors names and contact numbers Have an updated medication list on your person always! Take notes (doctor visit, phone call, mail communication) Medication adjustments New diagnoses Test results Appointments/ follow ups Have a system of tracking information Notebook, phone.. wife Sign up for electronic medical record access MyChart

29 What to bring to your doctor visit Medications Updated list Bottles/ tubes Any recent (since your last visit) paperwork Discharge paperwork from recent hospitalization Test results from another facility Any home monitoring data Blood pressure Urine output Blood glucose Contact information of any new doctors in your team List of Questions

30 Coordinating with your doctors Some transplant teams follow patients forever Frequency of follow up decreases with time You will also be referred back to your own general nephrologist (kidney doctor) once stable Over time, your general nephrologist will take over many aspects of your care Always maintain relationships with your other doctors Primary care Provider Cardiologist Gynecologist etc.

31 Thank you!

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