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MAINTAINING A TRANSPLANT AND ADVOCATING FOR A CHANGE

MAINTAINING A TRANSPLANT AND ADVOCATING FOR A CHANGE. Wendy Rodgers, M.Ed Educator & Patient Advocate University of Houston Alumni, Biology. Diagnosed 14 Years. JOURNEY TO TRANSPLANTATION.

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MAINTAINING A TRANSPLANT AND ADVOCATING FOR A CHANGE

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  1. MAINTAINING A TRANSPLANT AND ADVOCATING FOR A CHANGE Wendy Rodgers, M.Ed Educator & Patient Advocate University of Houston Alumni, Biology

  2. Diagnosed 14 Years

  3. JOURNEY TO TRANSPLANTATION

  4. Lupus is a chronic autoimmune disease that causes inflammation which can damage ANY part of the body. NOTE:There is a 50 percent risk of kidney failure in lupus patients. LUPUS

  5. FORMS OF LUPUS

  6. The immune system’s role in fighting off viruses, bacteria, and germs has a “glitch”. • The immune system cannot tell the difference between foreign invaders and healthy tissue. • It creates auto-antibodies that attack and destroy healthy tissue. • These auto-antibodies cause inflammation, pain, and damage in various parts of the body. • The cause is unknown. THE “GLITCH”

  7. WHO IS AFFECTED BY LUPUS? • ANYONE can be affected by lupus. • 90% diagnosed are women of childbearing age (15-44); however men and children also develop lupus. • Minority groups: (African Americans, Latinos, Asians and Native Americans) • Women of color are 2-3 times more likely to develop lupus. • At least 1.5 million Americans have lupus. • 5 million people worldwide have a form of lupus.

  8. COMMON SYMPTOMS OF LUPUS Extreme Fatigue Headaches Painful or Swollen joints Fever Anemia Edema in feet, legs, hands, and/or around eyes Pleurisy (causing chest pain with deep-breathing) Butterfly-shaped rash across cheeks and nose Photosensitivity Hair Loss Abnormal blood clotting Blue and/or white fingers (Raynaud’s phenomenon) Mouth or Nose Ulcers Organ Failure

  9. CHALLENGES IN TREATMENT LUPUS

  10. CHALLENGES IN LUPUS TREATMENT • Chronic Disease • Unpredictable pattern • Can imitate other conditions • Flares & Remission • Many symptoms, different affects on people • Ranges from mild to life-threatening • Limited drugs for treatment • Proper diagnosis • DOES NOT HAVE A CURE

  11. DIAGNOSTIC TESTS FOR LUPUS • A variety of laboratory tests are used to detect physical changes or conditions in your body that can occur with lupus. • A lupus diagnosis is made by a careful review of: • Current symptoms • Medical history • Laboratory test results: • -Routine Blood Tests – Complete Blood Count(CBC) • -Urinalysis – Kidney Function • -Antinuclear Antibodies (ANA) – Most Sensitive

  12. DIAGNOSTIC DIFFICULTY • The ANA Blood Test is a sensitive test for lupus, since these antibodies are found in 97 percent of people with the disease. • NEED: Three or more features of lupus - skin, joints, kidneys, lungs, heart, blood, or nervous system -- a positive ANA test will confirm a diagnosis of lupus. • A positive ANA test result does not always mean you have lupus. Lupus patients average 3-4 years before receiving the correct diagnosis.

  13. THE “GREAT IMITATOR” Many of the lupus symptoms occur in other illnesses, so lupus is sometimes called "the great imitator”. • Rheumatoid arthritis • Blood disorders • Fibromyalgia • Diabetes • Thyroid problems • Lyme disease • Various heart, lung, muscle, and bone diseases

  14. NEEDS AND PROGRESS On January 16, 2014… Congress passed the Consolidated Appropriations Act of 2014, H.R. 3547 • The National Lupus Patient Registry  at the Centers for Disease Control and Prevention (CDC) received $5.5 million (a $1.9 million dollar increase) . • The Department of Defense's (DOD) Peer-Reviewed Medical Research Program (PRMRP) will increase from $50 million to $200 million . • The National Institutes of Health (NIH) will be funded at $29.9 billion ($1 billion increase). • The Lupus Initiative, to educate physicians and other health professionals about lupus, in the Office of Minority Health, will be funded at $2 million ($1.2 million increase).

  15. MEDICATION FOR TREATMENT LUPUS

  16. MEDICATIONS COMMONLY USED • Nonsteroidal Anti-Inflammatory Drugs (NSAIDs) - Ibuprofen (Motrin, Advil) - Naproxen (Naprosyn, Aleve) NSAIDs can cause serious side effects like stomach bleeding or kidney damage. • Antimalarial Drugs -Hydroxychloroquine(Plaquenil) Used to relieve symptoms, such as fatigue, rashes, joint pain or mouth sores. • Corticosteroids and Immune Suppressants -Prednisone (Deltasone and others) -Azathioprine (Imuran) -Cyclophosphamide (Cytoxan) -Cyclosporine(Neoral, Sandimmune) -Mycophenolate (CellCept)  - recently added Used for patients with serious or life-threatening problems such as kidney inflammation, lung or heart involvement, and central nervous system symptoms. They are more "aggressive“ treatment.

  17. MEDICATIONS COMMONLY USED (Continued) • Biologics Used for rheumatic diseases -Rituximab (Rituxan) • Abatacept (Orencia) In 2011, the FDA approved a new biologic for treatment of mild to moderate (medium severe) SLE. -Belimumab (Benlysta) It Is the first new drug approved for lupus since 1955!

  18. MANIFESTATIONSOF • LUPUS

  19. BUTTERFLY RASH Military Fighter Pilot forced to retire due to health. Wife & Mother of Two Girls

  20. EDEMA In Stage 4 Kidney Failure Accountant & Sports Fan

  21. SWOLLEN, PAINFUL JOINTS Age 11 years-old Also suffers with seizures due to lupus.

  22. HAIR LOSS & CUTANEOUS LUPUS Diagnosed 7 Years Corporate Sales & Music Lover

  23. VASCULITIS 30 Year Lupus Survivor Former Corporate Executive

  24. FREQUENT SETBACKS Limit the quality of life of those afflicted.

  25. KIDNEY DISEASE Chronic Kidney Disease (CKD) is the progressive loss of kidney function over time, which may lead to end-stage renal disease (ESRD). End-Stage Renal Disease (ESRD) is the total and irreversible loss of kidney function and requires treatment with either a kidney transplant or dialysis for the rest of the person’s life. 

  26. STAGES OF KIDNEY DISEASE Glomerular Filtration rate (GFR)is the best measure of kidney function. The GFR is the number used to figure out a person’s stage of kidney disease. A formula using the person’s age, race, gender and their serum creatinine is used to calculate a GFR. Creatinine is a waste product that comes from muscle activity. When kidneys are working well they remove creatinine from the blood. As kidney function slows, blood levels of creatinine rise. Creatinine level should be near one (1). The five stages of CKD and GFR for each stage: Stage 1 with normal or high GFR (GFR > 90 ml/min) Stage 2 Mild CKD (GFR = 60-89 ml/min) Stage 3 Moderate CKD (GFR = 30-59 ml/min) Stage 4 Severe CKD (GFR = 15-29 ml/min) Stage 5 End Stage CKD (GFR <15 ml/min) Dialysis or a kidney transplant is needed to maintain health.

  27. CAUSES FOR KIDNEY DISEASE The leading causes are: • High Blood Pressure • Diabetes • Obesity Other causes can be: • Immune system conditions (lupus) • Urinary tract infections • Inflammation • Polycystic kidney disease • Congenital defects • Drugs and toxins

  28. RISK SIGNS FOR KIDNEY DISEASE • Swelling or numbness in feet, ankles, or hands • Loss of appetite • Changes in urination (frequency, color, foam in urine) • Metallic taste in the mouth • Fatigue and lack of energy • Nausea and/or vomiting • Difficulty concentrating, mental confusion • Insomnia • Headaches • Changes in skin color (yellowish tint) • Itchy skin • Fragile bones • Muscle twitching, especially in legs

  29. WHO KIDNEY DISEASE AFFECTS • 1 in 6 Individuals in the U.S. has kidney disease. • 26 MILLION Americans are in early stages of kidney failure. • 20 MILLION More are at risk of developing it and don't know it. • Chances increase after age 50 years and is most common among adults older than 70 years.

  30. TREATMENTS KIDNEY DISEASE

  31. MEDICATIONS COMMONLY USED • ACE Inhibitors • Angiotensin II Receptor Blockers (ARBs) • Beta-Blockers • Calcium Channel Blockers • Direct Renin Inhibitors • Diuretics • Vasodilators Often used for high blood pressure

  32. MEDICATIONS COMMONLY USED(CONTINUED) • Erythropoietin (rhEPO) Therapy (Epogen) • Iron Replacement Therapy • Electrolyte Imbalances • Vitamin D • Phosphorus Binders

  33. DIALYSIS TREATMENT OPTIONS There are two major areas to consider: • DIALYSIS ACCESS -Cather -Graft -Fistula • DIALYSIS MODALITY -Hemodialysis -Peritoneal Dialysis -Kidney transplant

  34. A PERSPECTIVE FROM THE CHAIR

  35. CHALLENGES IN TREATMENT CHRONIC KIDNEY DISEASE

  36. CHALLENGES FOR PATIENTS • Last year, the Center for Medicare and Medicaid Services proposed a 9.4% budget cut in dialysis care. • This cut would reduce care for ESRD patients. • Approximately $24 out of the current reimbursement rate of $240 per dialysis session would be seen.

  37. ORGAN TRANSPLANTATION ONEorgan donor can save up to EIGHT (8)lives.  ONE tissue donor can be help up to FIFTY (50) people. For the transplant recipient, it is a second chance at life. For the family of the deceased donor, they feel a sense of goodness from a tragedy .

  38. THE PROCESS OF ORGAN PROCUREMENT • Organ Procurement Organizations (OPOs) become involved when a patient is identified as a potential donor. • The OPO coordinates the logistics between the organ donor's family, the donor organs, the transplant center(s), and the potential transplant candidate. • For each organ that becomes available, the computer program generates a list of potential recipients • Recipients are ranked according to objective criteria (i.e. blood type, tissue type, size of the organ, medical urgency of the patient, time on the waiting list, and distance between donor and recipient). • Each organ has its own specific criteria. 

  39. CHALLENGES IN TREATMENT ORGAN TRANSPLANTATION

  40. ORGAN TRANSPLANTATION • There are currently more than 100,000 people on the UNOS National Organ Transplant Waiting List. • Of those waiting, 1 in 3 will die due to shortage of organs. • Minorities represent 54% of organ transplant candidates. 60% of those are waiting on a kidney. • Nationwide, about 18 people die each day awaiting life-saving transplants. • Every 13 minutes…A new name is added to the list.

  41. MYTHS • If I'm in an accident and the hospital knows that I am designated as a donor, the doctors won't try to save my life. • I am too old to be a donor. • I have a history of medical illness. No one could benefit from my donation. • Organ and tissue donation means my body will be disfigured. My family will not be able to have an open casket funeral if I become a donor. • Rich and famous people get moved to the top of the waiting list while "regular" people have to wait longer for a transplant.

  42. MY NAME WAS ADDED TO THE TRANSPLANT LIST • Systemic Lupus Erythematosus • Hospitalized • Severe Complications • Temporary Paralysis • Long Recovery

  43. WHILE I WAITED… • Non-profit organizations • Connected with others • Life-changing experiences • Emotional war • Self-advocacy

  44. ADVOCATING FOR A CHANGE Begins with a simple tool—WILLINGNESS.

  45. ADVOCATING FOR A CHANGE

  46. ADVOCATING FOR A CHANGE

  47. TESTIFYING BEFORE THE FDA

  48. AFTER 6 CALLS…..

  49. THE MATCH

  50. WALKING INTO A NEW FUTURE

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