Speech for Care DX

SPEECH FOR CARE DX IN SAN FRANCISCO

A.   INTRODUCTION

HELLO SAN FRANSICO!

MY NAME IS JAMES MYERS.  I’M FROM HAMMOND, INDIANA.  I’M A 64 YR OLD KIDNEY TRANSPLANT PATIENT.  I’D LIKE TO THANK CARE DX FOR INVITING ME TO SPEAK TODAY.  I’D ALSO LIKE TO THANK THE AAKP FOR RECCOMENDING ME TO SPEAK.  THE AAKP IS THE OLDEST AND LARGEST PATIENT RUN, AND PATIENT CENTERED KIDNEY ORGANIZATION IN THE UNITED STATES. 

B.   PRE-TRANSPLANT

I HAVE BEEN A KIDNEY ESRD PATIENT FOR OVER 35 YEARS.  PKD RUNS IN MY FAMILY.  BESIDES MYSELF, I HAVE LOST 5 MEMBERS OF MY FAMILY TO PKD, INCLUDING MY FATHER. 

MY DAD WAS INSTRUMENTAL IN MY BECOMING AN ADVOCATE BECAUSE HE WAS STILL SPEAKING TO KIDNEY PATIENTS DURING THE LAST MONTH OF LIFE WHEN HE PASSED IN 1983 AT ST. MARGARETE’S HOSPITAL IN HAMMOND INDIANA AT THE AGE OF 68.

THE YEAR HE DIED, I WAS DX’D WITH PKD FROM A COMMON X-RAY, AT THE AGE OF 25.  I HAD 2 DRS, ONE IN MERRILLVILLE, INDIANA, AND ANOTHER IN INDIANAPOLIS INDIANA AT IU HEALTH.  DR HELLMAN AT IU SAVED MY LIFE.  HE CHECKED ME EVERY 6/MS, HE PUT ME ON HBP MEDS.  HE CHECKED MY BLOOD AND URINE.  HE PUT ME ON A KIDNEY DIET.  THIS ENABLED ME TO STAY OFF OF DIALYSIS FOR ALMOST 33 YEARS.  BECAUSE OF THIS MY DIALYSIS WAS EASIER, I BECAME ELIGIBLE FOR TRANSPLANT AND ULTIMATELY ACHIEVED A TRANSPLANT.

MY KIDNEYS FINALLY FAILED ME AT THE AGE OF 58.  I WAS ON IN-CENTER HEMO DIALYSIS FOR 4 YEARS.  I WAS A LAWYER AND A COLLEGE PROFESSOR, BUT DUE TO KIDNEY FAILURE, I HAD TO GIVE THAT UP.

IT WAS DURING THIS TIME I BECAME A KIDNEY ADVOCATE.   IT WAS DURING THIS TIME THAT THE CMS MADE A PRONOUNCEMENT THAT THEY WERE CUTTING FUNDING TO DIALYSIS CENTERS. I FELT THAT THE PATIENTS COULD POSSIBLY LOSE SERVICES, DIETITCIANS, SOCIAL WORKERS, TECHS AND NURSES.  I THOUGHT WHO IS GOING TO FIGHT THIS?  WHO WILL TAKE THIS ON? I TOOK A LOOK AROUND THE ROOM AT THE OTHER PATIENTS.  PEOPLE THAT CAME IN BY AMBULANCE, ON GURNEYS, IN WHEELCHAIRS, ON WALKERS AND CRUTCHES.  MOST OF THE 50 OR SO OTHER PATIENTS WERE VIRTUALLY HELPLESS.  OLD LAWYER/FIREHORSE SMELLED SMOKE, SO I WENT TO THE FIRE AND TOOK THIS ISSUE ON.

I WROTE A PETITION ON CHANGE.ORG, I GAVE TALKS, I POSTED EXTENSIVELY ONLINE, I WROTE LETTER TO ALL THE MAJOR NEWSPAPERS IN THE US.  I JOINED KIDNEY ADVOCACY GROUPS WITH THE AAKP, THE NKF, THE AMERICAN KIDNEY FUND, AND THE DIALYSIS PATIENT CITIZENS.  I ASKED AND CONVINCED MY CONGRESSMAN AND A REPRESENTATIVE FROM ONE OF MY SENATORS’ OFFICES TO VISIT MY DIALYSIS LAB AND SPEAK TO MY DIRECTOR, REGIONAL DIRECTOR, SOCIAL WORKER AND DIETICIAN.

I ALSO SPOKE AT THE NKF SUMMITS, MY LOCAL KIDNEY WALK IN MERRILLVILLE, INDIANA, AT THE AAKP CONVENTION.  I WENT TO WDC AND SPOKE DIRECTLY WITH BOTH MY CONGRESSMAN AND BOTH SENATORS.  THE LEGISLATION WAS SLOWED GREATLY, AND THE DIALYSIS WERE NOT HIT QUITE SO HARD.

I HAVE BEEN A VERY ACTIVE KIDNEY ADVOCATE, SPEAKER AND ONLINE ADVOCATE EVER SINCE.  I HAVE BEEN LUCKY ENOUGH TO WIN AWARDS FOR MY EFFORTS.

C.   TRANSPLANT

MY TRANSPLANT STORY IS UNUSUAL. LISTED IN 3 PLACES, IU HEALTH, RUSH MEDICAL IN CHICAGO AND UW IN MADISON. AT THE BEGINNING OF APRIL 2016, I HAD MY ANNUAL MEETING WITH THE HEAD TRANSPLANT DOCTOR FROM IU ABOUT THE RESULTS OF MY RESTESTS TO STAY ON THE TRANSPLANT LIST.  THE TEST RESULTS WERE GOOD.  THE DOCTOR TOLD ME THAT I COULD BE ON THEIR WAITLIST ANOTHER 1-2 YEARS.  I WENT HOME PREPARED TO DO EXACTLY THAT.

ON THE 26^TH OF APRIL I RECEIVED A CALL FROM THE TRANSPLANT COORDINATOR AT IU.  I EXPECTED THAT THEY WISHED TO DISCUSS LAB RESULT WITH ME.  INSTEAD SHE SAID THEY HAD A KIDNEY FOR ME AND TO COME TO INDIANAPOLIS TOMORROW.  MY BAGS WERE PACKED, I LEFT, RIGHT AFTER THE CALL.   I WAS TRANSPLANTED WITH A CADAVER KIDNEY ON THE 27^TH OF APRIL.   I WAS LUCKY, MY KIDNEY WOODY STARTED WORKING RIGHT AWAY!  MY NUMBERS WERE THE BEST I HAD SINCE HIGH SCHOOL.             I HAVE BEEN DOING VERY WELL.  I TAKE MY MEDS EVERY DAY AND I FOLLOW THE RULES AS BEST AS I CAN.  I’M SEEING THE DR NOW ONCE EVERY 3 MONTHS.

D.   CONCLUSION

I AM STILL A VERY ACTIVE ADVOCATE.  I AM VERY GRATEFUL FOR THIS 2D CHANCE.  I OWE THAT TO PEOPLE LIKE YOU WHO WORK EVERYDAY TO HELP KIDNEY PATIENTS.  THANK YOU FOR YOUR HARD WORK AND THANK YOU FOR GIVING ME THIS OPPORTUNITY TO SPEAK!