Kid­ney trans­plant pa­tient helps com­rades

Woman has been await­ing a donor for nearly 20 years.

The Palm Beach Post - Neighborhood Post - Northern Palm Beach County - - Front Page - By Faran Fa­gen Spe­cial to The Palm Beach Post

Ever y morn­ing, Sus a n Ca­plan wakes in her Boca Ra­ton home, hop­ing the wait is over. That this will be the day the match­ing kid­ney is found, and her 19-year quest will be at an end.

She waits. And as she has done since her 1999 di­ag­no­sis of kid­ney dis­ease, she passes the time by help­ing oth­ers who suf­fer from the same de­bil­i­tat­ing ail­ment.

“Be­ing di­ag­nosed with poly­cys­tic kid­ney dis­ease (PKD) was dev­as­tat­ing,” said Ca­plan, 64. “I was de­ter­mined to learn as much as pos­si­ble about the dis­ease, and to do all that I could to help raise aware­ness and help oth­ers who were not as healthy as I was at the time — about PKD and or­gan do­na­tion.”

One year after be­ing di­ag­nosed, Ca­plan be­gan her 12-year vol­un­teer ten­ure as vol­un­teer co­or­di­na­tor of the PKD Foun­da­tion’s New York City chap­ter un­til she moved to Boca Ra­ton in 2012. That year, she im­me­di­ately be­came the vol­un­teer co­or­di­na­tor of the foun­da­tion’s South Florida chap­ter, a po­si­tion she still fills with pas­sion. She also or­ga­nized sev­eral walks to raise money for re­search.

“Peo­ple email or call me all the time with ques­tions about doc­tors, med­i­ca­tions, re­search and I try my best to sup­ply them with as much in­for­ma­tion as pos­si­ble,” Ca­plan said. “I know ex­actly how they feel and what they need, and the com­mu­nity of sup­port that we pro­vide to each other is in­valu­able. No one should feel alone with poly­cys­tic kid­ney dis­ease.”

Ca­plan was first di­ag­nosed by ac­ci­dent through a rou­tine colonoscopy. She had pain in her core area, and her gas­troen­terol­o­gist gave her a pre­scrip­tion for an MRI and told her to stop do­ing situps at the gym. Her colonoscopy was fine, but the MRI showed mild symp­toms of PKD. Ac­cord­ing to the PKD Foun­da­tion web­site, PKD is a chronic, ge­netic dis­ease caus­ing un­con­trolled growth of cysts in the kid­ney, of­ten lead­ing to kid­ney fail­ure.

S h e was sh o c ke d . S h e was teach­ing kinder­garten in New York and felt fine. At that time, it was im­pos- sible for doc­tors to pre­dict if and when Su­san’s dis­ease would progress.

“I de­cided to take con­trol and help oth­ers who were not as for­tu­nate and healthy as me,” she said. “I’m a teacher and knew I could help reg­u­lar peo­ple like me be­come aware of how to live as best as they could with PKD.”

C a p l a n was h o p i n g t o re t ur n t o he r s ubs t i t ut e teacher po­si­tion at a lo­cal pri­vate school this school year with a new kid­ney. Un­for­tu­nately, she re­mains on the Hep­ati­tis C Kid­ney Trans­plant List at Cleve­land Clinic in We­ston and the UNOS List at Pen­nMed in Philadel­phia.

S he’s hopi ng t o f i nd a donor match as soon as pos­si­ble with her blood type 0+; 0- is ac­cept­able, too. Type 0 blood is the only op­tion ac­cept­able and is in high de­mand. This adds to the dif­fi­culty of find­ing a donor match. To help spread the word, she has a Face­book page and drives around with a sign on her car ask­ing for a kid­ney donor to draw at­ten­tion to her ur­gent need.

For Ca­plan and her hus­band, Steven, find­ing a cure for PKD is es­sen­tial. One of their two sons has PKD and is so far liv­ing suc­cess­fully with the dis­ease. There are some dis­tant wor­ries for the fu­ture of their three grand­chil­dren. Their hope is that med­i­cal tech­nol­ogy and ad­vanced re­search will guide the next gen­er­a­tion to a level of suc­cess­ful health.

“Good things come to those who wait,” Steven Ca­plan of­ten tells his wife. He ac­com­pa­nies her to ev­ery ap­point­ment and ad­vo­cates for her. He took her to Fes­ti­val Flea Mar­ket to de­sign a “Need Kid­ney” T-shirt. They sit on the beach to­gether and he sets up a “Need Kid­ney” sign so it can get max­i­mum views.

“My great­est wish is that a bet­ter life­style and a cure is on the hori­zon for my son and for all oth­ers who suf­fer from PKD,” Su­san Ca­plan said. “Ev­ery year, the PKD Foun­da­tion co­or­di­nates fund-rais­ing walks around the coun­try to help raise money to sup­port ed­u­ca­tion, ad­vo­cacy, aware­ness, re­search, clin­i­cal and sci­en­tific grants and more.”

This year’s South Florida Walk for PKD will take place on Nov. 4 in Hol­ly­wood. “We hope to in­spire new friends to come out and join us to help put an end to PKD.”

Su­san Ca­plan re­ceived a call many years ago in New York from a woman whose mom had just passed away from the dis­ease. The woman said that she now feared she would also die, and they met for a re­as­sur­ing chat and a hug. She guided her to a trans­plant hos­pi­tal, and her hus­band do­nated his kid­ney on her be­half. She re­ceives a present ev­ery year on her birth­day from the fam­ily.

But now it’s time to fo­cus on her own health. Su­san Ca­plan is de­ter­mined to main­tain a proac­tive and healthy life­style.

“I want to make sure I have the best op­por­tu­ni­ties to live through this dis­ease with­out many com­pli­ca­tions,” she said. “I’m fo­cused on see­ing my three grand­chil­dren go through their won­der­ful mile­stones in life.” 600 U.S. 1 and Park Av­enue 8.5 acres (in­cludes Kelsey West) Dawn to 11 p.m. Play­ground, lighted ten­nis courts, rest room, ten­nis pro of­fice/store, rental pav­il­ion with cov­ered pa­tio, parking lots, benches, pic­nic ta­bles, wa­ter foun­tain. Lake Park 109000 State Road 703 174 acres Dawn to dusk

Two miles of beach front, swim­ming, na­ture trails and hik­ing, pic­nick­ing, fish­ing, vis­i­tors cen­ter, boat­ing, ca­noe­ing, guided tours



Su­san and Steven Ca­plan. Su­san lives with poly­cys­tic kid­ney dis­ease (PKD) and is search­ing for an or­gan donor with her blood type, 0+; 0- is ac­cept­able, too.

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