ANONYMOUS LIVE LIVER DONATION MY DONOR EXPERIENCE

Transcription

1 ANONYMOUS LIVE LIVER DONATION MY DONOR EXPERIENCE

2 OVERVIEW TRIGGER EVENT COMING TO MY DECISION ALBERTA LIVE LIVER DONATION PROGRAM OVERVIEW PRE-SURGICAL EVALUATION SURGERY DAY POST-SURGICAL PROCESS MY CURRENT STATE AND FUTURE UPDATE ON RECIPIENT

3 GLOBAL NEWS STORY FEBRUARY 2016 FATHER OF FOUR DYING FROM AN AUTO-IMMUNE LIVER DISORDER MOVED FROM BC TO ALBERTA IN HOPES OF GETTING AN ANONYMOUS DONOR (ANONYMOUS DONATIONS ONLY AVAILABLE IN ONTARIO AND ALBERTA) NEITHER HIS CHILDREN NOR WIFE ARE SUITABLE DONORS NEVER QUITE SICK ENOUGH TO GET TO THE TOP OF THE CADAVERIC LIST, BUT SICK ENOUGH THAT HE REQUIRES MULTIPLE HOSPITALIZATIONS AND HE IS NOT EXPECTED TO MAKE IT MORE THAN A FEW MONTHS WITHOUT A TRANSPLANT SO MUCH MORE LIFE TO LIVE.

4 MY RESPONSE? Now that is just so sad what if that was my dad??? I wonder if I know anyone suitable to donate to him??? I didn t know they started doing anonymous donations here?!? I should go check out their page

5 DONOR REQUIREMENTS FOR THIS PATIENT O+ OR O- BLOOD TYPE FREE FROM ANY TYPE OF LIVER IN THE AGE RANGE OF 18 TO 55 DISEASE FREE FROM HARD DRUG USE SIMILAR IN SIZE (5 10 ) FREE FROM ANY CHRONIC DISEASE NOT A HEAVY DRINKER NORMAL BODY MASS INDEX NOT A DIABETIC (<30 BMI)

6 MY RESPONSE? Oh my gosh! That s me! I was meant to see that news story! I can save someone s life!

7 IS THIS A NORMAL RESPONSE? MY MOM S RESPONSE: THAT DOES SOUND LIKE SOMETHING YOU WOULD DO WHAT IN MY LIFE LEADING UP TO THIS WOULD MAKE ME WILLING TO HAVE MAJOR SURGERY TO SAVE SOMEONE I DON T EVEN KNOW AND MIGHT NEVER KNOW?? That s a thing??? Ummm..are you feeling ok? You are doing what now??? WHY???

8 WHAT LEAD ME TO THIS DECISION? Family & Friends Work Experiences Others Life Experiences Science and Risk Analysis Moments of Impact

9 FAMILY & FRIENDS

10 WORK EXPERIENCES WORKED IN A VARIETY OF HOSPITALS FOR THE LAST 13 YEARS SEE FAMILIES FACING EXTREME LOSS PYRUVATE COLLECTIONS/ ECMO PATIENTS

11 OTHERS LIFE EXPERIENCES FAMILIES FACING LOSS OF A LOVED ONE TRANSPLANT RECIPIENT SUCCESS STORIES

12 SCIENCE AND RISK ANALYSIS RESEARCH ABOUT PROCEDURE STATISTICS SHORT TERM EFFECTS LONG TERM EFFECTS SURGEON INFORMATION RISK ASSESSMENT

13 MOMENTS OF IMPACT

14 PHONE CALL TO DONOR SERVICES TOLD THEM I SAW THE NEWS STORY AND WAS INTERESTED IN POTENTIALLY BECOMING A DONOR CLARIFIED ANONYMOUS DONATION PROTOCOL WOULD I LIKE TO SAVE SOMEONE? HAVE I VOLUNTEERED/ DONE OTHER ALTRUISTIC THINGS? SEND ME INFORMATION PACKAGE AND QUESTIONNAIRE

15 ALBERTA S ANONYMOUS LIVE LIVER DONATION PROGRAM UAH HAS DONE MANY YEARS OF DIRECTED LIVE DONATIONS (BLOOD RELATIVE, SPOUSE, IN-LAWS, CLOSE FRIENDS) MANY PATIENTS REQUIRING TRANSPLANT DON T HAVE A SUITABLE FAMILY DONOR MANY PATIENTS DIE WHILE WAITING ON THE TRANSPLANT LIST QUIETLY STARTED ANONYMOUS DONATIONS IN 2015 CRITERIA AS LISTED PREVIOUSLY ESSENTIAL TO CONFIRM PEOPLE ARE DONATING FOR THE RIGHT REASONS MEETING DONORS/RECIPIENTS

16 PATH TO DONATION BASIC HEALTH/PSYCH/BACKGROUND QUESTIONNAIRE MEET WITH LIVE LIVER DONOR NURSE (3 HOUR INTERVIEW) 1. AM I HAPPY WITH MY LIFE INSURANCE? 2. DESCRIPTION OF PROCESS 3. STEPS WHICH WOULD EXCLUDE ONE AS A DONOR 4. OPTION TO BACK OUT 5. DESCRIPTION OF SURGERY AND SCAR 6. PSYCH/SOCIAL QUESTIONS 7. MEDICAL/FAMILY HISTORY QUESTIONS ECG/CHEST X-RAY/ BASIC BLOODWORK & BLOOD TYPING EXTENSIVE BLOODWORK PLUS CT AND MRI

17 NEXT STEPS MEET WITH PHYSICIAN OUTSIDE OF PROGRAM FIND OUT MY SUITABILITY AS A DONOR MEET WITH TWO POTENTIAL SURGEONS PLUS THEIR RESIDENTS DR. SHAPIRO AND DR. KNETEMAN PSYCHOLOGIST APPOINTMENT (2 HOURS) SOCIAL WORKER APPOINTMENT PSYCHOLOGIST PLUS SOCIAL WORKER APPOINTMENT WITH FAMILY SUPPORT A FEW EXTRA MEDICAL TESTS

18 THEN FINALLY THE ENTIRE TEAM MEETS IN PRIVATE TO DISCUSS MY DONATION AND ANY CONCERNS THEY MIGHT HAVE MY CASE IS PRESENTED AT ROUNDS WHERE PHYSICIANS AND SURGEONS MATCH ME WITH THE MOST APPROPRIATE RECIPIENT MY SURGERY IS BOOKED (ONE MONTH NOTICE) FINAL MEDICAL QUESTIONNAIRE PRE ADMISSION CLINIC APPOINTMENT (3 HOURS) FINAL BLOOD WORK PLUS BB ID

19 SURGERY DAY ARRIVE UAH 515AM WITH FAMILY SUPPORT MEMBERS FIND OUT MY SURGEON (DR. SHAPIRO) CHANGE INTO GOWN AND BOOTIES GET ID D AND GET A PAINFUL SHOT OF HEPARIN INTO TUMMY AWAY WE GO! SAY GOODBYE TO FAMILY AT DOORS OF 3B QUICK ECG/CHEST X-RAY GET PARKED IN MY STALL AND MEET NURSE/SURGEON/ANESTHESIOLOGIST

20 OPERATING ROOM WHEELED INTO LARGE ROOM TRAYS OF INSTRUMENTS EVERYWHERE HAVE TO CRAWL ONTO OPERATING TABLE DR. SHAPIRO ASKS WHAT I M HAVING PERFORMED TODAY AND RE-CONFIRMS MY CONSENT MEET TWO NURSES, TWO ANESTHESIOLOGISTS, AND THE SURGICAL RESIDENTS IV STARTED AND WITHIN A MINUTE I M GETTING GOOD DRINKS GAS MASK AND I M OUT

21 MY SURGERY ESTABLISHED THAT I WAS AN IDEAL LEFT LATERAL LOBE DONOR (APPROXIMATELY % OF MY LIVER) THIS MEANT IT WOULD BE A PEDIATRIC RECIPIENT

22 MY SURGERY LARGE ABDOMINAL INCISION TO EXPOSE FULL LIVER FULL LEFT SIDE OF LIVER REMOVED GALL BLADDER REMOVED AT SAME TIME ABDOMINAL MUSCLES SEWN BACK TOGETHER OUTER INCISION GLUED SHUT REMAINING RIGHT SIDE GROWS IN SIZE TO REPLACE REMOVED PORTION (WITHIN 4-6 WEEKS) LEFT PORTION TRANSPLANTED INTO RECIPIENT GROWS TO CAPACITY REQUIRED BY THAT PATIENT

23 NEXT THOUGHTS I M GETTING WASHED DOWN BY TWO PEOPLE I MAKE A JOKE ABOUT BEING AT THE SPA THEY LAUGH AND OUT DR. SHAPIRO COMES BY AND SAYS I HAVE A BEAUTIFUL LIVER I M FLATTERED AND SMILE LIKE A BIG GOOF AND OUT I M IN MY HOSPITAL ROOM AND MY FAMILY/FRIENDS ARE THERE I GAB ABOUT SOMETHING AND OUT MY HEART RATE IS TOO FAST SO THEY ARE DOING ANOTHER ECG AND OUT MY FRIEND HAS ARRIVED WITH A WHOLE BANANA CRÈME PIE AND IT S SUDDENLY EVENING

24 POST SURGERY DAY 1 AWAKE ENOUGH TO ASSESS MY SURROUNDINGS AND WHAT I M ATTACHED TO: 2 IV LINES (1 WITH FUN DRUG BUTTON), 1 CENTRAL LINE IN NECK, 1 ARTERIAL LINE, 1 NERVE BLOCK LINE IN TUMMY, CATHETER, FINGER MONITOR, & BLOOD PRESSURE CUFF SEE MY INCISION AND IT S GLUED SHUT MY EYES WON T FOCUS I M WORRIED THIS IS PERMANENT UP AND OUT OF BED, WALK A FEW FEET FREQUENT NURSE CHECKS (TEMP, HR, BP, BOWEL SOUND, WOUND CHECK) DR. SHAPIRO AND RESIDENTS CHECK IN AND LET ME KNOW RECIPIENT SURGERY WENT REALLY WELL

25 POST SURGERY DAYS 2-4 JUST WANT TO SLEEP NURSE CHECKS REDUCED BUT START HEPARIN INJECTIONS INTO ABDOMEN STILL CANNOT SEE PROPERLY LOW PHOSPHORUS SO I GET LOVELY FIZZY BEVERAGES NO APPETITE SO I GET ENSURE BEVERAGES PLUS LAXATIVES HURRAH! GET UP AND SIT IN CHAIR THREE TIMES A DAY AND WALK AROUND THE UNIT 4-6 TIMES A DAY ALWAYS ASKING YOU ABOUT YOUR BOWELS PAIN SQUAD AND SURGEON VISITS WORST BIT.NIGHTTIME DRUG CONTROL AND NIGHTMARES OF..

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27 POST SURGERY DAYS 2-4 BEST PARTS OF MY DAYS VISITS FROM FRIENDS, FAMILY AND CO-WORKERS SPONGE BATHS! FRESH ICE WATER TALKING TO MY ROOMMATE HEARING THE RECIPIENT IS DOING WELL SNEAKING BACK INTO BED WHEN THE NURSES AREN T LOOKING GETTING MY DRUGS CHANGED ON DAY 4

28 POST SURGERY DAYS 5-7 LINES ARE COMING OUT! EARLY MORNING BLOOD COLLECTIONS BY OUR LOVELY LAB STAFF MORE WALKING AND SITTING BOWELS WON T WAKE UP NEW ROOMMATE PLUS 20 DOTING RELATIVES ORAL PAINKILLERS

29 POST SURGERY DAYS 5-7 BEST PARTS OF MY DAYS: REAL SHOWERS (KIND OF)! FRUIT CUPS RN ELIZABETH VISITS AND FINALLY GETTING TO GO HOME TO MY OWN BED

30 POST SURGERY (WEEK 2-4) SLEEP ALMOST 20 HOURS A DAY FOR THE FIRST WEEK HEAVY PAINKILLERS FOLLOW UP BLOODWORK AND TALK WITH NURSES PHYSIO APPROVED EXERCISES TO START GETTING STRENGTH BACK WALKS AROUND THE BLOCK ENEMAS AND FINALLY EATING DOWN 15 POUNDS FROM PRE-SURGERY WEIGHT FOLLOW UP APPT WITH DR. SHAPIRO AT 4 WEEKS

31 POST SURGERY (WEEK 5-8) PAINKILLERS REDUCED TO TYLENOL AND ADVIL (STRONGER FOR NIGHTTIME) START TO DRIVE RETURN TO GYM FOR PHYSIO/STRENGTHENING SESSIONS (10 POUND WEIGHT RESTRICTION) INCISION KEEPS POPPING OPEN (STERI-STRIPS TO THE RESCUE!) STILL NAPPING TWICE A DAY EATING MUCH MORE AND GAINING WEIGHT BACK RETURN TO WORK 8 WEEKS POST SURGERY

32 ABDOMEN BEFORE AND AFTER Night Before Surgery 7 Days Post Surgery Four Months Post Surgery

33 CURRENT/FUTURE STATE 5 MONTHS POST SURGERY ESSENTIALLY BACK TO NORMAL STICHES ARE 95% DISSOLVED LIFTING WEIGHTS/EXERCISING FEW ABDOMINAL MUSCLE RESTRICTIONS NORMAL BLOOD WORK 4 WEEKS AND 3 MONTHS POST SURGERY HAVE 6 MONTH FOLLOW UP BLOODWORK LOWER ABDOMINAL NUMBNESS HERNIA REPAIR IF REQUIRED IN FUTURE CAN T EAT TOO MUCH FAT (POST CHOLECYSTECTOMY) ANY REGRETS?? ALREADY BACK TO DONATING BLOOD

34 UPDATES UAH PERFORMED 87 LIVER TRANSPLANTS IN OF THOSE WERE PEDIATRIC 18 OF THE 87 WERE LIVE DONORS (9 ADULT, 9 PEDS) AND 5 OF THOSE WERE ANONYMOUS THE ADULT MALE FROM THE NEWS STORY HAD HIS SON S FRIEND STEP FORWARD TO DONATE (GOOGLE) MY RECIPIENT CONTINUES TO DO WELL

35 TAKE HOME MESSAGE SIGN YOUR DONOR CARD AND DISCUSS YOUR WISHES WITH YOUR FAMILY LIVES CAN BE CHANGED BY ORGAN DONATION IF LIVE DONATION IS SOMETHING YOU ARE GENUINELY INTERESTED IN, INFORMATION IS AVAILABLE ONLINE INCLUDING ALBERTA HEALTH SERVICES CONTACT INFORMATION Dr. Michiko Maruyama

36 BIG THANKS TO: MY FAMILY AND FRIENDS FOR THEIR INCREDIBLE SUPPORT, ADULT BABYSITTING SKILLS, AND FOR WATCHING MY BIG HAM OF A DOG DR. SHAPIRO, RN CORLEE AND THE ENTIRE LIVE LIVER DONATION TEAM UNIT 3G2 STAFF FOR PUTTING UP WITH ME MY CO-WORKERS, MANAGERS, & HR FOR THEIR SUPPORT OF MY DONATION

37 QUESTIONS?