Saturday, September 29, 2007
Here we go again???
My husband has been awfully tired lately. I know his kidney function is elevated. Now on top of that he's sick. Since his PKD has progressed, he usually ends up in the hospital when he gets sick. I'm crossing my fingers it doesn't happen this time. We' ve missed too many holidays that way. Between his being tired and his blood pressure (thanks to the PKD) being up and down, I don't know if I'm coming or going! (Did I mention I broke my foot in March that didn't heal right and in August I had surgery to remove a piece of bone?! I have an infection in the incision that won't totally go away. It's hard to stay off your feet. Gotta love the pain and swelling.) What's the old saying " God doesn't give you what you can't handle"? Time to wake my husband to make sure he drinks his water.
Saturday, September 15, 2007
LIVING WITH SOMEONE WHO HAS PKD
POLYCYSTIC KIDNEY DISEASE, OR PKD FOR SHORT, IS A KIDNEY DISEASE WHERE MULTIPLE FLUID FILLED CYSTS FORM ON YOUR KIDNEYS. EVENTUALLY THESE CYSTS WILL SMOTHER YOUR KIDNEYS AND CAUSE ORGAN FAILURE. MORE THAN 600,000 PEOPLE HAVE PKD, AND YET THERE ARE SO MANY PEOPLE WHO HAVE NEVER HEARD OF IT.
IN 1997 I WAS NEWLY RE-MARRIED AND EXPECTING MY YOUNGEST SON. ONE DAY MY HUSBAND CALLS TO SAY HE'S ON HIS WAY HOME FROM WORK. TEN MINUTES LATER HE CALLS TO SAY HE WAS IN HORRENDOUS PAIN AND NEEDED TO GO TO THE HOSPITAL. AT THE ER WE FOUND OUT HE HAD KIDNEY STONES. MY FIRST THOUGHT WAS "OH MY GOD. HIS DAD SUFFERED FROM STONES BECAUSE OF PKD AND DIED AT A YOUNG AGE FROM IT." TESTS REVEALED HE INDEED HAD PKD. ASIDE FROM OCCASIONAL STONES OVER THE YEARS THE DISEASE HADN'T PROGRESSED. AT LEAST NOT UNTIL TWO YEARS AGO.
VERY QUICKLY MY HUSBANDS' HEALTH DECLINED AND WE WERE HELD PRISONER BY PKD. WE COULDN'T DO ANYTHING OR GO ANYWHERE. MOST DAYS MY HUSBAND COULDN'T EVEN THROW A BALL AROUND WITH OUR YOUNG SON.
DIFFERENT PROCEDURES WERE TRIED BUT TO NO AVAIL. HE EVEN HAD 60-70 CYSTS BURNED OFF HIS ONE KIDNEY, BUT THEY GREW BACK WITHIN TWO MONTHS. HE WAS LITERALLY WITHERING AWAY BEFORE MY EYES. DOCTORS SAID HIS ONLY RELIEF WOULD COME FROM REMOVING THE KIDNEY, BUT THEY WERE AFRAID TO DO SO BECAUSE HIS OTHER KIDNEY WAS JUST AS DISEASED. I CONTACTED A TRANSPLANT TEAM AT A HOSPITAL IN PHILA. WANTING TO BE TESTED TO BE A LIVING DONOR. I HOPED IF I WAS A MATCH THEY WOULD REMOVE THE PAINFUL KIDNEY AND GIVE HIM MINE. UNFORTUNATELY THAT'S NOT HOW A TRANSPLANT WORKS. AFTER BEING TEASTED I FOUND OUT I WAS A PERFECT MATCH. WE SET A SURGERY DATE TO REMOVE HIS KIDNEY.
THE DAY BEFORE THANKSGIVING OF LAST YEAR THE KIDNEY WAS REMOVED. IF THE REMAINING KIDNEY DIDN'T FUNCTION ENOUGH OR IF IT SHUT DOWN WE WOULD DO THE TRANSPLANT IN JANUARY.
IT'S BEEN TEN MONTHS SINCE SURGERY, AND ALTHOUGH HIS KIDNEY FUNCTIONS AT 50%, IT'S ENOUGH TO KEEP A TRANSPLANT AWAY. SOME DAY THAT WILL CHANGE AND WE'LL BE BACK ON THAT ROLLER COASTER AGAIN, BUT FOR NOW WE ARE RECLAIMING OUR LIVES. HE GETS TIRED ALOT, BUT THAT'S OK. WE'VE MADE IT THIS FAR.
I ADMIRE MY HUSBAND FOR BEING COURAGEOUS ENOUGH TO FIGHT PKD. HE EVEN DONATED THE KIDNEY THAT WAS REMOVED TO RESEARCH TO HELP FIND A CURE.
I WANT TO GET THE WORD OUT ABOUT THIS DISEASE SO OTHERS KNOW THAT THEY ARE NOT ALONE. CAREGIVERS ARE NOT ALONE. WITH HELP A CURE CAN BE FOUND.
FOR MORE INFO ON PKD VISIT THEIR WEBSITE AT:PKDCURE.ORG
IN 1997 I WAS NEWLY RE-MARRIED AND EXPECTING MY YOUNGEST SON. ONE DAY MY HUSBAND CALLS TO SAY HE'S ON HIS WAY HOME FROM WORK. TEN MINUTES LATER HE CALLS TO SAY HE WAS IN HORRENDOUS PAIN AND NEEDED TO GO TO THE HOSPITAL. AT THE ER WE FOUND OUT HE HAD KIDNEY STONES. MY FIRST THOUGHT WAS "OH MY GOD. HIS DAD SUFFERED FROM STONES BECAUSE OF PKD AND DIED AT A YOUNG AGE FROM IT." TESTS REVEALED HE INDEED HAD PKD. ASIDE FROM OCCASIONAL STONES OVER THE YEARS THE DISEASE HADN'T PROGRESSED. AT LEAST NOT UNTIL TWO YEARS AGO.
VERY QUICKLY MY HUSBANDS' HEALTH DECLINED AND WE WERE HELD PRISONER BY PKD. WE COULDN'T DO ANYTHING OR GO ANYWHERE. MOST DAYS MY HUSBAND COULDN'T EVEN THROW A BALL AROUND WITH OUR YOUNG SON.
DIFFERENT PROCEDURES WERE TRIED BUT TO NO AVAIL. HE EVEN HAD 60-70 CYSTS BURNED OFF HIS ONE KIDNEY, BUT THEY GREW BACK WITHIN TWO MONTHS. HE WAS LITERALLY WITHERING AWAY BEFORE MY EYES. DOCTORS SAID HIS ONLY RELIEF WOULD COME FROM REMOVING THE KIDNEY, BUT THEY WERE AFRAID TO DO SO BECAUSE HIS OTHER KIDNEY WAS JUST AS DISEASED. I CONTACTED A TRANSPLANT TEAM AT A HOSPITAL IN PHILA. WANTING TO BE TESTED TO BE A LIVING DONOR. I HOPED IF I WAS A MATCH THEY WOULD REMOVE THE PAINFUL KIDNEY AND GIVE HIM MINE. UNFORTUNATELY THAT'S NOT HOW A TRANSPLANT WORKS. AFTER BEING TEASTED I FOUND OUT I WAS A PERFECT MATCH. WE SET A SURGERY DATE TO REMOVE HIS KIDNEY.
THE DAY BEFORE THANKSGIVING OF LAST YEAR THE KIDNEY WAS REMOVED. IF THE REMAINING KIDNEY DIDN'T FUNCTION ENOUGH OR IF IT SHUT DOWN WE WOULD DO THE TRANSPLANT IN JANUARY.
IT'S BEEN TEN MONTHS SINCE SURGERY, AND ALTHOUGH HIS KIDNEY FUNCTIONS AT 50%, IT'S ENOUGH TO KEEP A TRANSPLANT AWAY. SOME DAY THAT WILL CHANGE AND WE'LL BE BACK ON THAT ROLLER COASTER AGAIN, BUT FOR NOW WE ARE RECLAIMING OUR LIVES. HE GETS TIRED ALOT, BUT THAT'S OK. WE'VE MADE IT THIS FAR.
I ADMIRE MY HUSBAND FOR BEING COURAGEOUS ENOUGH TO FIGHT PKD. HE EVEN DONATED THE KIDNEY THAT WAS REMOVED TO RESEARCH TO HELP FIND A CURE.
I WANT TO GET THE WORD OUT ABOUT THIS DISEASE SO OTHERS KNOW THAT THEY ARE NOT ALONE. CAREGIVERS ARE NOT ALONE. WITH HELP A CURE CAN BE FOUND.
FOR MORE INFO ON PKD VISIT THEIR WEBSITE AT:PKDCURE.ORG
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