The Salt River Pima-Maricopa Indian Community’s Dialysis Support Group presented a Dialysis 101 two-day seminar on May 12 and 13 at the Courtyard Marriott Scottsdale Salt River for patients who suffer from chronic kidney disease. Members from the Community, Gila River and Tohono O’odham Nation were in the audience to learn about the basics of dialysis.
Coleen Stone and Leland Johnson, president and vice-president, respectively, of the Dialysis Support Group, shared background information on the support group, which was originally founded by late Community member Ethleen Osif. Guest speaker Monica Taylor-Desir, M.D., then gave the keynote address. She spoke about how important it is for patients undergoing dialysis to have a support system, such as a spouse or family and friends. She covered the disruptions that dialysis can cause to daily life, such as the treatment time, travel time to get the treatment center, treatment difficulties and fatigue. These can lead to depression, feeling helpless, decrease in strength and energy, and loss of independence.
According to the National Kidney Foundation, diabetes is the leading cause of kidney disease and kidney failure in the United States, and unfortunately the rate of diabetes among Pima Indians is high.
Dr. Taylor-Desir asked the audience if anyone has been on dialysis for over five years, and many raised their hands. She conducted an assessment on emotional wellness with all the participants in the room, asking them to rate on a scale from 1 to 5 how they feel about themselves. Many had very low numbers. A few other assessments were then done on the topic of family/friend support.
On the topic of helping others, Dr. Taylor-Desir suggested that helping others deal with diabetes and dialysis helps yourself. She suggested helping new dialysis patients deal with it, which will boost energy and health. “This will give you confidence in your acceptance, give you purpose and also gain knowledge,” said Taylor-Desir.
Coping With Dialysis
Next, members of the Dialysis Support Group shared their stories of living with diabetes and going through dialysis.
“I have been on dialysis for nine years,” shared Aggie Manuel. “I’ve been going through outside doctors and knew I would be on dialysis a year before I started.”
Manuel related that she got very sick and was approved for a kidney transplant, but she didn’t want it and felt it should go to someone younger or who needed it more than her. She said how her husband is her support system; he has kept them active and made sure that being on dialysis doesn’t get in the way of activities. She and her husband have remained optimistic throughout the years. She also said she is thankful for Senior Services and how it has many programs for them to attend, especially the exercise program.
“It keeps you in shape; any one of us seniors or disabled can be a part of it. I want to thank Dion Begay and the Salt River Fitness Center for helping us and teaching us,” said Manuel.
Other topics for the panel members were how they schedule their lives around dialysis treatments. They said they must always plan ahead; for instance, if they leave the state, they must find a dialysis center in that area where they can go for treatment.
Someone asked if you have to pay for out-of-state dialysis treatment, to which one panel member said no, she had insurance that covered out-of-state medical care.
Transplants: The Good, the Bad and the Wonderful
Two transplant patients, Delores McGertt and Teresa Leonard, discussed their journey to kidney transplant. McGertt gave a history of her life and family and the trials she has experienced; she explained how she got her transplant, how the kidney belonged to a 35-year-old and how it felt good to be able to receive it.
Because organ-transplant recipients must take anti-rejection medication for the rest of their lives, which suppresses the immune system, they are more susceptible to infections. Leonard shared how she had to be careful of what she drank, such as tap water vs purified water, how she checks her temperature right when she wakes up, and how she had to invest in good products. She explained what you would need after your transplant.
When asked if they would have rather gone on with dialysis or had the kidney transplant, Leonard said she could have made it on dialysis because she didn’t mind going anyway. McGertt said she preferred the transplant because it relieved a lot of her symptoms. Both ladies explained how life was different with a kidney transplant as opposed to being on dialysis.
The seminar addressed a variety of other medical topics, such as food as medicine, preventing infections and what the lab results mean. Breakout sessions included enhanced fitness and chair yoga. Lunch and prize raffles took place after the panel discussion, and comedian Drew Lacapa provided entertainment.