Ro winter 2005

RENAL OUTREACH
ESRD Network 9/10
Winter 2005/Vol. XV, No.1
only 3 months before I went into End Stage Renal Disease. Just 4 years prior to thatdiagnosis my husband and I had bought our news, I felt very honored. This allowed me teenage and young adult children complete to attend this year’s national conference for Polycystic Kidney Disease (PKD), which isgenetic and more common than people realize. It has also been a part of my life for recognition. However, the company Iworked for had been sold and during the multiply in the kidneys until they take over this newly re-invented “dotcom” was failing.
the healthy tissue, then they continue to doso until the kidneys can reach the size of decline kept me from seeking another job.
As was expected, a week after starting on dialysis, my employer informed the staff we had one day of employment left. It was an extremely difficult time for our whole family.
illness, an uncertain future, loss of income and new medical bills affected each of us purpose for holding the conference in the profoundly. For the first six weeks I was Nation’s capital was to be able to meet with depressed and did little more than focus on our congressional representatives to make my illness and concern for family members.
As I adjusted to my new life, the need for During my free time I was able to see some conference that I found quite exciting. For Cathedral, whose outside architecture isvery impressive but the inside is 1) There is now a genetic test to look for the risk. Before, the test could only search for went on a tour. While seen during the day, you can tell how beautiful and grand they are but when you see them at night, all lit disease. Once identified, then it was possible to look for these identical markers in the at- weekend which I thank The Renal Networkand the Robert Felter Memorial Award for Now, even if there is only one member in the family with the disease, the test can identifythe actual gene that is affected and then test to see if the at-risk member has that sameexact gene.
A Note on the Robert FelterMemorial Award This test can benefit my family because I amthe only member in the family who has PKD.
The only drawback is that the test is quite expensive and most insurance policies aren’t Leadership Committee, Medical ReviewBoard or Board of Trustees), can apply for the Robert Felter Memorial Award which is University Hospital that holds a lot of promise.
accepted at the beginning of each year.
It will help patients who produce too many Robert Felter was a long-term patient who antibodies against foreign tissue to still be advocated for patient education throughout 3) There is a study that will soon begin that will test a medicine that may slow down cyst production in patients who haven’t lost the use of their kidney function yet. This study is Support Network’s National PatientMeeting (Chicago, IL) I felt strongly that I had to help pay my medical costs and wanted to continue to help two trips with other employees as I lugged my peritoneal dialysis machine throughairports and set up my nightly regimen.
I applied for unemployment compensationand began the work of finding a job. The right job for me had to be close to home to allow time of my transplant surgery and healing me time to rest and time for dialysis. One job for which I interviewed, not only fit the criteria get time off for post-transplant clinic visits but was in an area for which I had achieved out-of-town I’ve worked 10 hour days for 4 recognition and had references from some of Our lifestyle has been simplified; no longer I had always done well in interviews and was is it important to have “executive clothing” used to receiving positive feedback.
or a meal in a fancy restaurant. The trade- off is that I have more time at home and am potential employer that I was on dialysis and profession and am enjoying educationtowards certification in my new field.
Immediately after giving that information, Iknew they did not want me. In fact, I felt they could not wait to get me out of the office.
I would like to share that I bounced back afterthat interview, but I was feeling down and didnot take any action for a few weeks. The medical bills kept coming. I felt insecureabout approaching potential employers.
Because I knew of an employment agency in Dear Marci is a service of Medicare Rights the area that took a personal interest in others, I made an appointment with them. In independent source for providing Medicare addition to taking the usual information for a information and questions and answers.
job search, they recommended I speak withone of their temporary personnel people, newsletter for patients. To sign up, e-mailDearMarci@medicarerights.org with the Carole’s good friend was on a transplant list; words “subscribe consumer” in the subject illness. Carole arranged for a temporary jobat a local hospital under the supervision of a There is a new topic each month and there are links to other sites relating to the weeklytopic if more information is desired. If you have a question for Marci, simply click on the appropriate link or e-mail your question.
valuable worker. The hospital hired me after and catheters. I really liked the button-holefor myself personally.
“Big Boys” from Centers for Medicare/Medicaid (CMS) which is the Federal From September 30th to October 3, 2004, I Support Network Inaugural National Patient in quality health care services for patients Meeting that was held in Denver, Colorado.
such as the AV fistula initiatives that are This meeting was the first of its kind.
The Renal Support Network president, Lori Hartwell, outdid herself. This meeting was geared for patients and administration. The meeting consisted of 45-minute sessions.
who used to dialyze on the first machine.
Everything ran smoothly, was straight to the point and was very informal. If you asked questions, you were given very supportive it on dialysis using the first machines.
empower patients for health, happinessand hope.
I attended lots of meetings, each wasunique and interesting. I learned quite a bit from each session. But the thing I enjoyed special. When I checked in at the hotel, I around the world and listening to them talk felt like I was a star. The hotel staff and about dialysis and how they are taking care setting was very unique. At the registration table, Ms. Hartwell seemed as if she knew educated about their bodies, medications, centers and health solutions. There are lots of materials out there and plenty of places and notebooks to aid with notes for every that will help you learn to live successfully I also had an opportunity to see Denver, but it was rainy so I did not go out much. We Wilson presenting the “Seven Secrets to had a lovely dinner that was delicious.
Success” for dialysis patients. The next They also held raffles after each session various organizations. We had lunches with the experts which allowed for personal time such as fistula, grafts, button-holes, ports, and catheter, as well as peritoneal dialysisand transplants.
We also had a casino night that was great,but I lost all of my play money.
It was great to see other people who livewith other types of access besides fistulas I wish that more patients would pay attention to articles, newsletters, and everythingavailable to them at their dialysis centers andin particular take advantage of the educational materials that are out there for us.
longer working and that you have chronicrenal failure, a number of decisions have I’d also like to thank Diane Wish and the CDC Staff for making it possible for me to attendthis great meeting and letting me represent treatment that is best for you. This choiceis not necessarily forever. You may later Listed below are some excellent educational choose the choice of transplant or if you are receiving incenter dialysis you maylater choose to do home dialysis or vice It is important to talk to your doctor about ! Dialysis Patient’s Health Guidewww.nephron.com/dialysishg.html Although most people go to a dialysiscenter for treatment for kidney failure, ! American Association of Kidney Patients home dialysis include living longer, having a better quality of life, more convenience be a good fit for your lifestyle andneeds—either right now, or in the future.
! Life Options Rehabilitation Program(800-468-7777) www.lifeoptions.org breakthroughs, it’s easier than ever to get I now have a problem and since George issuch a special friend, I really don’t knowhow to break the news to him. I must tell George our relationship, may have to endsoon.
I would like to tell you a story about my friend,11712. He is someone very special to me and If things keep going the way they are, then has been my best friend and live in partner.
A few years ago, I was introduced to 11712 and he is really a big part of my life now.
would make him happy and that he couldmake happy too.
To some people they would think of him as alittle strange in his looks and dress. I would George was born with a silver shield on his really like to explain why. But before I go any further, I would like to tell you 11712 now has you haven’t figured out who George is, he a name, it is George. I just couldn’t go well and the tests are good, I will soonhave a kidney transplant and I won’t need Anyway, George’s body is odd shaped, and he wears the same shirt of gray and cream companion. That’s George’s job at night, day and night. On the front of his shirt are three round buttons, one of green, one of red creaking, squeaking and purring softly.
and one of blue. There are also two trianglesof blue with white triangles in the middle.
These triangles point, one up and one down.
I suppose George is trying to start a new trendin men’s clothing.
Anyway, we have about an hour at nightbefore George goes to work and about thesame in the mornings before George goes to Resources for children with kidney disease bed. You see, George works nights and that is about all the time we can see each other.
The Inside Story, A Kid’s Guide to
One evening I asked George what he did at Kidney and Liver Transplants by Karen
work. He explained he made soft sounds on his job. So, I asked George to show me, he Healthcare, Inc., it is available free from began to puff softly, creak and squeak. He www.fujisawa.com or by calling (800) 727- also has a pocket, which holds a cassette, this plays without music, I really was amazed.
George has this amazing way to keep time.
Kids Kare, an internet site developed by
George told me his face glows green while transplantation. It includes a coloring book,scrap book, recipes, net pals, and other George has really been very helpful to me “cool” links at www.kidskare.org.
these past few years, and has given me much the Renagel REACH Program toll-free at(800) 847-0069 for more information.
New Dialysis Patients(News Release Dated: October 29, 2004) Genzyme also supports the Renagel Patient
Assistance Program (RPAP) which helps
qualified dialysis patients obtain a free, six- month supply of Renagel product each year.
hydrochloride) in patients who are new to hemodialysis. The data, drawn from therecently completed Renagel in New Dialysis For application materials or more information Fund’s RPAP Department at (800) 638-8299, ext. 1773 or visit www.kidneyfund.org. To learn more about Renagel ask yourhealthcare staff or visit www.renagel.com.
Investigators reported during a symposium at the American Society of Nephrologymeeting in St. Louis that the RIND study data show a significant difference in the Different binders bind different amounts of amount of coronary artery calcification over 18 months -between patients using calcium- calcification scores were significantly greater in the calcium-based phosphate bindergroup than in the Renagel group.
If you are taking a calcium-based binder youcan substitute over the counter Tums until you get your prescription filled. This is not using both types of phosphate binders were able to achieve target levels for phosphorus Renagel because of the risk of developing and calcium-phosphorus product as outlined high calcium levels. Always check with your in the National Kidney Foundation’s Kidney making any substitutions on your binders.
Aside from taking binders, phosphorus can Genzyme, through the Renagel REACH
be controlled by watching what you eat.
Program, is partnering with many of the
AAKP’s “Na-K-Phos Counter” is a 14-page offer Renagel at a reduced rate. Patients amounts of sodium (Na), potassium (K) and must sign up for a participating Medicare- phosphorus (Phos) in the standard sizes of approved Drug Discount Card to be eligible.
various types of food. Available in bothEnglish and Spanish, this brochure provides To find out which cards offer the Renagel discount, talk to your Social worker or call You also may want to review the Network’s ! Conventional home hemodialysis –Three times a week hemodialysis, 3-4 If you are considering home dialysis, keep ! It isn’t the answer for everyone.
suitable place in the home for setting up (www.kidneypatientnews.org) has linked to Lynchburg Nephrology Web site whichcreated a series of video clips featuring There’s a lot to consider and prepare for Medicare and/or your personal insurance.
page at www.medicare.gov) and comparethe different treatment options and services found at local dialysis facilities.
RENAL OUTREACH
Address Service Requested
The Renal Network, Inc
911 E. 86th Street, Suite 202Indianapolis, IN 46240Phone: 317-257-8265Patient line: 800-456-6919 Jay Wish, M.D., President
Susan A. Stark, Executive Director
Kathi Niccum, Ed.D., Editor
Patient Services Director
Patient Web site: www.kidneypatientnews.org
Email: info@nw10.esrd.net
This newsletter is published under CMS Contracts 500-03-NW09 & 500-03-NW10

Source: http://www.kidneypatientnews.org/resources/resources/RO15_1.pdf