KASF Newsletter Jan, Feb, March 2014
Transcription
KASF Newsletter Jan, Feb, March 2014
K A S F NEWS KIDNEY ASSOCIATION OF SOUTH FLORIDA KASF is a non-profit, all volunteer group formed by people who are kidney patients and their families or kidney professionals. The mission of KASF is to provide education and support for kidney patients, their families and friends. Vol. V, No 1 Jan, Feb, March, 2014 A BUSY WINTER ! In January we started off the year with our annual Transplant program with Florida Hospital Transplant Institute (Orlando) More pic’s inside ! In February it was time for our 5th annual Walk in the Park ! Always a great time and the weather was perfect!! More info and pics inside Jan, Feb, March 2014 KASF Newsletter One of our own, Karen Simmons who is our Vice President, is also a “lifealysis” (dialysis) patient. She enjoys encouraging and helping patients. She informs patients about the rewarding benefits of patient involvementand educational support available through KASF. Mrs. Simmons started the Patient Advocate Committee (PAC) in her clinic and has since advised other patients/staff to start their own patient group. The dialysis medical staff who work in the units have a tough and unique job. They are a team which has to work together to perform successfully. Every patient is different so the workers have to keep track of everything. They are special people indeed and deserve attention for their efforts! Dialysis workers are our link to the process as we plan different educational programs for the patients and their families. It is important that we all work together for the patient’s well being. At our Walk in the Park 5 this year we were honored to have Patty Feeley, a dialysis nurse of 30 yrs, share her long time experience and put to rest a lot of myths about Dialysis treatment. Thanks Patty! President’s message As a transplant patient myself I have had my share of bumps along the road and am sure there will be more but we persevere and move on. I often say “there is always someone who has it worse than me.” I was very close to going on dialysis when I got the call for a transplant back in 2006, since then, people have called me a warrior from time to time. Dialysis patients, They are the true warriors, whether they are at a clinic 3 times a week, conducting peritoneal dialysis at home or while they sleep. These patients deal with many issues everyday with restrictions that are not easy to live with. Many still work everyday, some volunteer their services to organizations like ours. I have even met a guy who has been on dialysis since a child and he is a Triathalete Iron Man competitor. KASF BOARD: Officers President: Ron Swords, 601-3438 [email protected] Vice President: Karen Simmons, 541-7464 [email protected] Secretary: Jill Morris, 844-7910 [email protected] Treasurer: Julie Glennon, 832-8196 [email protected] Board members at Large: Ron and Leona London, 738-0005, Carolyn Marquis, 348-0845 Carole Mayer, 626-7060 Jean Miller, 622-0876 Jan Symonette, 622-3745 Have a safe Summer! Ron “Our Rose” We are sad to say we have lost a good friend of KASF, a personal friend to me and many others. Rose Schmidt was an inspiration to many as she faced dialysis and then was blessed with a kidney transplant. Her positive and exuberant personality never failed to bring a smile to your face. She was one of my mentors as I went through some of the same issues. She showed me that through a positive attitude you can accomplish anything which is why I am still here today. Ron Office phone: 561-471-2588 1764 Congress Ave. N. #205 West Palm Beach, Fl 33409 Call and leave a message, someone will get back to you soon. Or call us at the numbers listed. above. Thank you for your support Our Rose will always be in our hearts. 2 Jan, Feb, March 2014 KASF Newsletter SOUTH SUPPORT NORTH SUPPORT THIRD THURSDAY 3 P.M. at Delray Grande 2300 High Ridge Road, Boynton Beach (just east of I-95 at Gateway) SECOND TUESDAY EVERY MONTH 6:00 P.M. NORTHLAKE SENIOR CENTER 1 Mile west of Military Trail on the right We have an active core of participants who enjoy and benefit from each others' company. We learn from each other how to cope with kidney disease. Our meetings offer support and education to persons who anticipate needing treatment for their chronic kidney disease as well those who have already started. Call Jan at 561-622-3745 or Carole at 561-6267060 for more information. Call Jan at 561-622-3745 or Carole at 561-626-7060 We meet together for sharing and learning, and sometimes divide into patient and caregiver groups for support and exploration of different issues. Call coordinator Rhonnie Leder at 561-241-2060 or Ron London at 561-7380005 for more information. Support groups give hope and understanding, information and verification, a place to talk and a place to listen, find encouragement and share common experiences in our little known but now all too common predicament, kidney failure. Patients with Patience Our bodies are sometimes in and out. But our inner strength won’t let us doubt. About God’s wonderful power; Even in our weakest hour. CREOLE SUPPORT ON CALL For Haitian patients, we can offer special meetings with Creole speaking social workers, Beatrice Renelus and Carline Charles: call 561-860-2588 to arrange to meet with Beatrice or Carline for one on one support and learning. We see the sun at the end of each rainbow. Getting brighter; but no one Really knows when our lives will end. SOUTH FLORIDA TRANSPLANT GROUP Third Thursday of the month 7:00 to 8:30 P.M. at Transplant Care Center 2201 W Sample Road, Bldg 9-38 Pompano Beach, Fl Meet with transplant recipients, pre transplant patients, donor families, and medical staff. Free, everyone welcome. So our faith stands firm from day to day. And we continue to believe and pray. That God’s mercy will fill our lives, Each and every day. Karen Simmons We are looking for talented people that could help us spread the word. Are you tech savvy? Do you have connections with the media? Are you a creative fundraiser? Any help would be appreciated as we try and help kidney patients in the local area. Call 561-601-3438 This KASF News is Volume V, No 1 the Jan. Feb. March 2014 newsletter of the Kidney Association of South Florida, a not-for-profit corporation. 1764 N Congress Ave, Suite 205 West Palm Beach, Fl 33409 We welcome your comments and questions, and appreciate letters and news. Please contact our office at 561-471-2588, We want to hear from you. 3 Jan, Feb, March 2014 KASF Newsletter WALK IN THE PARK Another successful event to raise funds for our local kidney patients. We had terrific weather this year and even though attendance was a little off we had a great time walking, socializing, giving out prizes, and learning from each other. Speaking of learning, Patty Feeley shared her vast experience in Dialysis care and broke down a lot of myths about dialysis treatment. Her knowledge inspires many others by giving the real truth about the miracle of dialysis treatment! We had some great help from Medical Magnet School students who came out to volunteer their helping hands in setting up / breaking down and taking some load off all of us! We’re not in our twenties anymore!!! Many thanks to Bob Swanson “Give a Life Foundation” who donated the cost of the t-shirts and to Ron Lurie of Baron Marketing for providing them at a nice discount. Thanks to Park Ave. BBQ for providing a great lunch at a fair price. There are many who donate funds for this event but some people can’t help but stand out like board member Ron London who goes door to door in his development to collect donations. They never turn him down cause he has the charm! Two others that have the gift also are Victor Kislak and Nina Mitzelfeld. Between the three of them they raised almost half of what was donated. Many others are involved in different ways, Board Member Carolyn Marquis creatively puts together several baskets to give away as well as the silent auction/raffle table and the lunch process! The “Mahvelous Marthas” jumped in and helped wherever needed. It was a wonderful day of raising funds for the rest of the year’s events and programs!!! 4 Jan, Feb, March 2014 KASF Newsletter Jane Eckler & Snickers! “The Mahvelous Marthas” This fine looking group of gals will jump in and help wherever needed, including creating some great giveaway baskets! The crowd is all ears while Pat Feely shares her many years as a dialysis nurse. The famous basket raffle is lined up and ready!! This is Sylvia, a pre-dialysis patient who called us for help just weeks before the walk. We invited her to the walk where we thought she could learn more by socializing with other patients. She was so grateful she made a speech in front of everybody which in itself made the WALK worth it! New friends, Metabolic Research Institute reps, Martha and Jenny with Pres. KASF Ron Swords. Thanks for the support! 5 Jan, Feb, March 2014 KASF Newsletter Board Member Jan Symonette, Supporter Nina Mitzelfeld, Board Member Jill Morris Vice President Karen Simmons and Hubby Board Members Ron & Leona London Board Member Julie Glennon and Husband Steve VP Worth Builders, Tom Keller checking out the silent auction. Victor Kislak and President Ron Swords 6 Jan, Feb, March 2014 KASF Newsletter Happy Walkers Pat Feeley & Pres. Ron Overtown Youth Center in Miami donated Alonzo Mourning’s signed autobiography and Heat tickets. Selina Hodge, Karen Simmons, Art Mongo “Uncle Doug Swords” admiring a beautiful orchid donated from the “Orchid Doctor” at the Gardens Green Mkt. Thanks to Board Member Carolyn Marquis (Right), the silent auction / raffle , BBQ lunch went without a hitch! 7 Jan, Feb, March 2014 KASF Newsletter Here are some inspiring letters from the Medical Magnet School Students after experiencing Walk in the Park! They volunteered at our 5th annual event. Thanks to Karen Simmons for recruiting the students!! Walking with people who are glad of being in this world and are grateful for life was very fulfilling. Just being there and feeling the energy and excitement of the patients and coordinators was exciting. Our guidance was very good and the patients were very friendly. It was also nice to have my friends there so we could all enjoy their spirits. The raffle was very entertaining, since they were all so excited, and I think we can all agree the food was amazing. I got the chance to speak with one of the patients, Arthur James Mongo. He was a very philosophical man but at the same time interested and supportive of our carreers. The walk was the most enjoyable part. We all got to talk while we walked and we had some nice conversations that brought us closer together. It was also very nice to see that the patients enjoyed themselves. It was a very invigorating experience and I would love to help again. Unknown It was an honor to volunteer at the kidney association of South Florida’s 5th annual “WALK 5” event on Saturday, February 22, 2014. It was through this event that I had the pleasure of meeting patients and caregivers. The walk was very enjoyable and reinforced the goal of health and well being. It was also very enlightening to hear patients speak about how long they have been part of the Kidney Association of South Florida and how much they’ve enjoyed it. As someone who aspires to one day work in the health field I learn about the diseases of the kidney. However, seeing it in the textbook and meeting people who are actually living with the diseases were two different things. It made it a reality and allowed me to view it with faces. As said by one of the speakers, movies and television gives the public a bad view of dialysis. I now know thatpatients can and have lived for many years on dialysis. If I noticed nothing else from that day it would have been enough to see the relationships within the Kidney Association. They are not only an association with patients helping patients, but they are also a family. Thank you for allowing my involvement in the “WALK 5” event. Daphney 8 Jan, Feb, March 2014 KASF Newsletter Before this past Sunday, I had never attended a walk for anything. I had always seen the Announcements but I was never motivated. This time my friends decided to go so I thought it would be a good idea. After having attended this event I saw how great it was and I was motivated to go to similar events. I think that it is an outstanding idea and that you are helping a lot of people. It was a good way to promote awareness and to show kidney patients that they have people to count on. During the event I was able to help out setting up encouraging signs along the trail. Afterwards when the walk began I was able to speak with Mr. Mongo. I was inspired by his positive personality and his friendliness. It was really nice to speak with someone who had gone through the experience of kidney transplant and was still fighting. It relly showed that you can never give up. After the walk and lunch I was able to assist in the raffle. I was really happy to see how everyone had pitched in for it and how excited everyone looked. A couple of my friends won and we had a good laugh when Lico won an envelope with a dollar bill! In the end, I had a wonderful day with my friends from school and I made a couple of new friends at the event. It was a really positive experience and I learned some new things. I am looking forward to attending the event next year and seeing you all there. Diane I have never thought I could be moved so profoundly in such a short time. The individuals that I met were positive, friendly and informative. One man, Arthur Mongo, talked to Diana and I during the walk. He is a great man who is genuinely interested in us and what we had to say. We shared useful advice and experiences. The walk was a great experience that I definitely will be participating in. My friends and I thoroughly enjoyed it and it’s for a great cause. I hope there will be an even bigger turnout next year. Lico 9 Jan, Feb, March 2014 KASF Newsletter SHARE YOUR SPARE, KIDNEY TRANSPLANT FAIR Resources and Links January 19, 2014 Support www.kasf.info Kidney Association of South Florida www.aakp.org American Association of Kidney Patients www.rsnhope Renal Support Network www.patientslikeme.com Patients Like Me www.nkf.com National Kidney Foundation www.pkdcure.org Polycystic Kidney Disease A day of learning and sharing! It was truly an extraordinary day of inspiration and education as Bob Swanson of “Give a Life Foundation” started off with telling his story of getting a new heart several years ago then recently meeting his donor family! Florida Hospital Transplant institute (Orlando) brought their professional team to West Palm Beach. They started by explaining the process of getting evaluated for acceptance, testing, getting on a list, live donors, and the surgery. Followed by the post care, medications and financial planning. They had some great suggestions for raising funds should you need to. KASF had a patient panel comprised of new patients as well as veteran patients. Jan Symonette shared her journey of 17 yrs. as a transplant patient as well as a dialysis patient. Victor Kislak told of his appreciation of the gift of life which he received a little over a year before. Karen Simmons is a “lifealysis” patient that has gone through many trials over the years with her faith being a guiding light through it all. Tiffany Pierce is relatively new to the dialysis world at 7 months but has a great attitude which will carry her through. Arthur Mongo spoke of his history as a 2 time transplant patient which was very inspiring. Transplant www.ustransplantethics.com www.unos.org United Network for Organ Sharing www.kidneyfund.org American Kidney Fund www.kidneyregistry.com Donor / swap network Dialysis www.nxstage.com Nxstage Home Hemodialysis www.davita.com Davita Dialysis www.needymeds.org Prescription Help www.medicinenet.com Prescription Help www.kidney.niddk.nih.gov National Institute of Diabetes and Digestive and Kidney Disorders www.clinicscanhelp.org Home Medical Supplies Medicare / Social Sec. www.medicare.gov Medicare www.healthcare.gov Health Insurance www.ssa.gov Social Security Diet / Nutrition www.culinarykidneycooks.com www.dialysisdiet.net www.beatkidneydisease.com Donations, In honor of, In memory of. General: Ralph Bassi Metabolic Research Institute Bob Winston Transplant Program Victor Kislak Pat Feely Village Tavern Fundraiser Carole Mayer Jan Symonette In Memory of Rose Schmidt Ron Swords Special thanks to fellow board members and friends who helped get the word out and make this a memorable event Art Mongo tells all about his special journey as new patient, Tiffany-Wiggan Pierce looks on. 10 Jan, Feb, March 2014 KASF Newsletter President Ron Swords welcomes the attendees and professionals from Florida Hospital. Students from local Medical Magnet schools From left: Rood Emmanuel (Inlet Grove), Yamilith Santana (John I Leonard), Samantha Saint-Fluer (John I Leonard), Karen Simmons (VP KASF), Adrian Thompson (Inlet Grove), Cy-Anne Small (Inlet Grove), Alisia Gibbs (Inlet Grove) The audience was always ready with questions they hoped to get answered. They were not let down by Florida Hospital Professionals. Bob Swanson of “Give a Life Foundation” shares an inspiring story of his Heart Transplant and meeting his donor family recently after many years. Florida Hospital Transplant Institute, Orlando From left: Margaret Thomas, BSN, RN, CCTC, Michele Branham, Financial Coordinator, Amy Crum, MSW, LCSW, CCTSW Girihar Vedula, M.D. Our patient panel consisted of people with very different circumstances and inspiring journeys. From left: Jan Symonette, Victor Kislak, Karen Simmons, Tiffany-Wiggan Pierce, and Arthur Mongo. 11 Jan, Feb, March 2014 KASF Newsletter Kidney Association of South Florida 1764 N Congress Ave, Suite 205 West Palm Beach, Fl 33409 561-471-2588 NON PROFIT ORGANIZATION US POSTAGE PAID WEST PALM BEACH, FLORIDA Permit No 1247 RETURN S ERVICE REQUESTED Jackie M. Tripp, M.D. Dermatology and Cutaneous Oncology Board Certified Melanoma Fellowship, NYU (561) 819-6888 5130 Linton Blvd. Suite C1 Delray Bch. 12 Fax (561) 819-5448 www.trippdermatology.com Jan, Feb, March 2014 KASF Newsletter