MY LIFE SO FAR LIVING WITH FSGS!

HELLO, MY NAME IS AMBER. I AM 32 YEARS OLD AND I AM MARRIED FOR 11 YEARS AND HAVE 3 BEAUTIFUL LITTLE GIRLS FROM THE AGES OF 13, 10, 3. I FOUND OUT THAT I HAD A KIDNEY DISEASE WHEN I WAS PREAGNET WITH MY OLDEST DAUGHTER ASHLI. I ENDED UP WITH PRECLAMPSIA AND ON HIGH RISK PREGNANCY BECAUSE THE PROTIEN IN MY URINE WAS SKY HIGH HIGHER THAN ANY LABS HAVE EVER SEEN. I ENDED UP HAVEING MY DAUGHTER 2 WEEKS BEFORE DUE DATE DO TO MY BLOOD PRESSURE AND THE SWELLING I HAD, THEY WERE WORRIED FOR HER SAFETY.
AFTER I HAD ASHLI, THE DOCTORS DID MY LABS AND SAW THAT I STILL HAD A HIGH PROTIEN COUNT.
OK BEFORE I GET AHEAD OF MY SELF LET ME START OFF WITH THIS SO U KNOW WHERE THIS ALL STEMED FROM.
MY MOM FOUND OUT WHEN SHE WAS 28 THAT SHE HAD A KIDNEY DISEASE FSGS AS THEY NOW CALL IT. SHE ENDED UP ON DIALYSIS FOR A TOTAL OF 8 MONTHS. THEN THEY CALLED HER FOR A TRANSPLANT. HER NEW KIDNEY WAS FROM A CADAVER BACK EAST SOMEWHERE. HER KIDNEY SERVIVED 18 YEARS. MY MOM HAD OTHER SERIOUSE HEALTH ISSUES DO TO FEMALE THINGS. SHE ENDED UP IN THE HOSPITAL SEVERAL TIMES DUE TO THAT FACT. SHE ENDED UP PASSING AWAY 3 YRS AGO TODAY (10-27-09) SHE ENDED UP WITH GAIN GREEN DUE TO CYST SHE GOT ALL THE TIME. THEY ARENT SURE IF THAT WAS PART OF THE KIDNEY DISEASE TO BECAUSE SHE GOT THEM ON A REGULAR BASIS. THE DOCTORS TOLD HER THAT WHEN SHE FIRST FOUND OUT THAT THE KIDNEY DISEASE IS NOT HAREDITARY.

WELL THEY WERE WRONG BECAUSE WELL MY SISTER KATHERINE CAME DOWN REALLY SICK AT THE AGE OF 14. SHE WAS SWOLLEN VERY BIG LOOKED LIKE SHE WAS PREGNANT SO I TOOK HER DOWN TO PLANNED PARENTHOOD WHERE THEY TESTED HER FOR PREGNANCY. THEY RAN TWO BLLOD TEST AND URINE AND THEY SAID SHE WASNT PREGNANT AND WE NEEDED TO GET HER TO THE DOCTORS/HOSPITAL ASAP.
MY MOM NEW RIGHT AWAY WHAT WAS WRONG WITH HER.
MY SISTER KATHERINE WAS IN AND OUT OF KIASER ER EVERYDAY IF NOT EVERY OTHER DAY. SHE WAS VERY ILL AND HER HEALTH AT TIMES WERE SO UNSTABLE.
SHE ENDED UP ON DIALYSIS SHE WAS ON IT FOR 5 YEARS AND SHE WAS STABLE ENOUGH FOR A TRANSPLANT.
SO MY DAD DONATED HIS KIDNEY TO HER. KATHERINE LIVED A VERY HEALTHY LIFE AT THE AGE OF 19. SHE HAD A NORMAL LIFE, DATED WENT TO PARTIES. LIVED THE LIFE SHE WASNT ABLE TO DO TO HER HEALTH. KATHERINE ENDED UP REJECTING HER NEW KIDNEY AND ENDED UP ON DIALYSIS AGAIN. BACK IN AND OUT OF THE EMERGENCY ROOM. SHE ENDED UP PASSING AWAY AT HOME 7 MONTHS AFTER SHE REJECTED HER KIDNEY.
WHEN KATHERINE WAS ALIVE THATS WHEN THE GENETICS CAME IN DR.POLLACK AND HE DID HIS TESTING ON OUR FAMILY. FOUND OUT WE HAD F.S.G.S AND WHEN KATHERINE PASSED AWAY THEY NAMED THE STUDY AFTER HER AND WAS ABLE TO GET FUNDS TO KEEP GOING ON TESTING. SO IN OTHER WORDS KATHERINE DID HER GOOD DEED IN LIFE.

WELL I WENT INTO THE SAME KIDNEY DOCTOR MY MOM HAD AND SHE DID SOME TESTING AND SURE ENOUGH I HAD THE SAME KIDNEY DISEASE. SO THEY SENT ME IN FOR TESTING AND DID BIOPSY. THEY SAID EVENTUALLY I WOULD END UP ON DIALYSIS TO IT WAS UP TO MY BODY WHEN I WOULD START.
WELL 2 1/2 YEARS LATER I ENDED UP PREGNANT AGAIN WITH MY 2 ND CHILD KATELYNN. I ENDED UP BACK IN THE HOSPITAL ON HIGH RISK WATCH. AT ONE POINT I WAS IN THERE FOR 3 MONTHS RIGHT BEFORE I ENDED UP HAVEING HER, DUE TO GETTING PNEUMONIA. SHE WAS A MONTH EARLY WEIGHING IN AT 5 PNDS. SHE CAME OUT FINE JUST A LIL JUANDICE.
WELL I WAS WARNED TO NOT HAVE ANYMORE KIDS CAUSE PROBABLY THEY WILL END UP HAVEING IT. MY 3RD DAUGHTER CHRISTINE I ADOPTED FROM MY COUSIN SO I KNOW FOR A FACT SHE DOESNT HAVE THE DISEASE.
I ENDED UP 8 MONTHS AFTER MY 2ND DAUGHTER ON DIALYSIS. I WAS ON IT FOR 4 1/2 YEARS. I WAS ON THE TRANSPLANT LIST AND THEY SAID IT WAS GONNA BE VERY HARD TO FIND A MATCH FOR ME BECAUSE MY ANTIBODIES WHERE SO HIGH. I WAS STARTING TO GET SICK AND I HAD LOST OVER 100 PNDS. I STARTED TO THINK I WAS GONNA DIE BEFORE THEY EVER FOUND A MATCH, DONT EVER LET THE DOCTORS TELL U THAT DIALYSIS WILL MAKE YOU FEEL BETTER. BECAUSE THEY ARE VERY WRONG. YES, IT WILL MAKE YOU FEEL BETTER FOR A SHORT TIME BUT YOU ARE SO DRAINED AND TIRED AND JUST WHEN YOU START TO FEEL BETTER ITS TIME TO GO IN FOR ANOTHER TREATMENT. YOU LOSE ALL YOUR COLOR. YOU LOOK LIKE A ZOMBIE WALKING AROUND. YOU START LOSEING YOUR MEMORY AND YOU DONT FUNCTION PROPERLY.
SO I FOUND OUT ABOUT THIS STUDY IN WASHINGTON THAT THEY TEST U ON CERTIAN MEDS TO TRY AND LOWER THE ANTIBODIES. SO I GOT IN TOUCH WITH THEM AND GOT A PLANE TICKET AND WAS A WEEK FROM HEADING OUT AND THEN I GOT THE CALL.
IT WAS 8:30 AM ON AUGUST 14, 2004. WE GOT A POSSIBLE MATCH FOR YOU. I SAID WHAT WHO IS THIS CAUSE I WAS STILL SLEEPING. I THOUGHT SOMEONE WAS PLAYING A VERY BAD JOKE ON ME. THEY SAID THIS IS THE TRANSPLANT CENTER AND WE HAVE A POSSIBLE KIDNEY DONOR FOR YOU. WE ARE TESTING THE KIDNEY ONE LAST TIME. THEY SAID FOR ME TO STAY BY THE PHONE AND THEY WILL CALL ME TO COME INTO THE HOSPITAL. I WAS IN TOTAL SHOCK STILL NOT KNOWING WHAT TO DO OR THINK. SO I GOT OFF THE PHONE AND MY HUSBAND SAID WHO WAS THAT. I SAID THAT WAS THE TRANSPLANT CENTER THEY FOUND A MATCH. HE SAID NO WAY I TOLD HIM SURE ENOUGH THEY SAID STAY BY THE PHONE AND THEY WILL CALL ME BACK TO GO TO THE HOSPITAL. I HAVE NEVER SEEN A 28 YEAR OLD FULL GROWN MAN JUMP AND SCREAM LIKE A GIRL ON OUR BED IN ALL MY LIFE. LOL
SO I CALLED ALL MY FAMILY AND TOLD THEM ABOUT THE NEWS AND SO I GOT OFF THE PHONE TO WAIT FOR THE HOSPITAL TO CALL.
EVERY TIME THE PHONE RANG MY HEART FELT LIKE IT FELL TO THE FLOOR, IT WAS MY FAMILY CALLING ME ASKING IF I HAD HEARD ANYTHING YET. SO IT WAS ABOUT 4:30 PM AND I HAD TO TAKE A SHOWER AND WAS GETTING A LIL TIRED OF WAITING FOR THEM TO CALL. JUST AS I GET IN AND GET ALL SOAPED UP THEY CALLED. I HAD TO BE AT THE HOSPITAL BY 6PM THAT NIGHT AND THEY TOLD ME TO EAT DINNER FIRST.
SO WE WENT OUT AND ATE. I GET THERE AND GET IN THE HOSPITAL AND ALMOST ALL MY FAMILY WAS THERE. THEY SAID THAT IN THE MORNING ABOUT 7 AM I WOULD HAVE MY SURGERY. SO THEY DID ALL SORTS OF TESTING.
WELL THE NEXT MORNING CAME AND IT WAS THE DAY OF AUGUST 15,2004 AND AT 7 AM I WAS GOING IN TO GET A TRANSPLANT. MY FAMILY CAME BACK IN AND EVERYONE'S CRYING AND I TOLD THEM ALL TO STOP BEFORE THEY MAKE ME CRY AND THAT I WOULD BE RIGHT BACK OUT. THEY WOULDNT EVEN MISS ME. WELL I GUESS I WAS IN THERE A LIL LONG AND MY MOM WAS FREAKING OUT. WHEN WE WENT IN THIER I SAW MY NEW KIDNEY THE DOCTORS WAS DOING SOME LAST MINUTE PREPS TO IT AND THEY GOT ME SITUATED AND SAID SEE YA IN A FEW. THEY SAID COUNT DOWN FROM 100 AND I SAID OK I STARTED AND SAID GOOD NIGHT LOVE YOU ALL. LOL
WHEN THE SURGERY WAS OVER I REMEMBER THEM ROLLING ME DOWN THE HALL AND EVERYONE SMILEING AND SAID THAT I HAD COLOR.
THE DOCTORS CAME IN AND SAID RIGHT AS WE HOOKED UP YOUR KIDNEY YOU PEE'D A LOT. MAN IT FELT GOOD TO PEE CAUSE I HAD STOPPED WHEN I WAS ON DIALYSIS. AS LONG AS I HAD THE CATHADER I WAS HAPPY.
SO THE DOTORS WAS EXPLAINING EVERYTHING TO ME AND ASKED ME IF I HAD ANY QUESTIONS. I SAID YES, WHEN CAN I EAT IM HUNGRY. THEY SAID I HAD TO HAVE CLEAR FLUIDS FOR RIGHT NOW. BUT BY THE NEXT MORNING I WAS EATING SOLIDS.
A LITTLE TIP FOR THOSE OF YOU WHO ARE GETTING A TRANSPLANT BEWARE OF EATING MASS AMOUNTS OF FOOD WHILE ON PREDISONE. I WEIGHED 125 PNDS WHEN I GOT MY TRANSPLANT I GAINED 20 IN A WEEK BEFORE LEAVING THE HOSPITAL. THE DOCTORS NEVER WARNED ME ABOUT THAT AND THEY SHOULDVE. PREDISONE WILL MAKE YOU EAT. MAKE YOU GROW HAIR IN PLACES YOU NEVER THOUGHT AND ILL TELL YOU ABOUT ACNE OH MAN GOOD LUCK WITH THAT.
WHEN THEY PILLED THE CATHADER OUT OH MY GOD I HAD TO GO SO BAD AND ALMOST FORGOT HOW TO. I HAD TO LEARN TO RUN WHEN I HAD TO GO. I ALMOST WISHED I DIDNT HAVE TO GO.LOL
I WAS THE FIRST PERSON TO EAT SOLID FOODS RIGHT AFTER KIDNEY TRANSPLANT AND THE FIRST TO LEAVE THE HOSPITAL EARLY. NORMALLY UR THERE FOR ALMOST 2 WEEKS I WAS ABLE TO LEAVE THERE IN A WEEK.
WELL I HAD ONE EPISODE WITH MY KIDNEY A YEAR AGO THATS BECAUSE I HAD MOVED TO MINNESOTA AND I HAD TO BE PUT ON A WAITING LIST FOR A DOCTOR. I ENDED UP RUNNING OUT OF MEDS AND GOT REALLY SICK. FINALLY THEY SAW ME. FOUND OUT THAT MY CREATINE LEVEL WAS UP TO 11 AND FOUND OUT MY BLADDER AND KIDNEY WERE BLOCKED DUE TO SCAR TISSUE. I ENDED UP ON DIALYSIS FOR A MONTH AND I KNEW AND THE DIALYSIS NEW THAT I DIDNT NEED IT. FINALLY I WAS ABLE TO GET OFF IT AND I AM DOING WELL NOW. I HAVE A LOT OF URINARY TRACT INFECTIONS EVER SINCE I GOT THE TRANSPLANT THEY SAID ITS CAUSE FROM THE MEDS I TAKE. SO I AM CONSTANTLY TAKEING ANTIBIOTICS FOR IT.
I TELL YA THIS IT HAS BEEN ONE LONG JOURNEY AND I HOPE I NEVER HAVE TO GO BACK DOWN THAT ROAD.
WHAT HAS BEEN KEEPING ME GO THRU ALL OF THIS IS MY HUSBAND AND CHILDREN. WITH OUT THEM I WOULD'VE GAVE UP ON LIFE.
THIS IS PROBABLY ALL JUMBLED UP CAUSE I KEPT GOING BACK AND ADDING THINGS IN PLACES.
SO LONG STORY SHORT MY MOM, ME, MY SISTER, MY BROTHER AND MY GIRLS ALL HAVE FSGS AND WE HAVE DONE LABS WORK ON ALL OF MY MOMS SIBLINGS AND HER DAD AND THEY SHOW NOTHING. HER MOM PASSED BEFORE WE COULD GET ANY TESTING FROM HER. SO WE DONT KNOW HOW, WHERE OR WHO SHE GOT IT FROM. THERE IS EVEN TALK THAT HER DAD WASNT HER REAL DAD SO WHO KNOWS.
BUT IF ANY OF YOU HAVE ANY QUESTIONS THAT YOU WOULD LIKE TO ASK, PLEASE FEEL FREE TO EMAIL ME AND I WILL TRY TO DO MY BEST TO ANSWER THEM ALL FOR YOU.


AMBER
JOURSEY@GMAIL.COM