Young Man’s Music is Good for the Body and the Soul
Chase Cofer remembers the day he experienced the first symptom.
It was a day like any other, with Chase and his sister spending time with their cousins. Chase hadn’t noticed anything was wrong – but his sister did. She pointed out that his arm had been in a fixed, bent position for the entire day.
When Chase tried to straighten his arm, he found that it would not move. His sister and cousins thought he was joking around.
When they realized that he really could not straighten his arm, everyone, as Chase puts it, “freaked out.” The problem was initially diagnosed as a pulled muscle. However, his family found out that something was seriously wrong when he finally made it to St. Louis Children’s Hospital.
“I was nine years old at the time,” says Chase. “By the time that I was 11 or12, my legs were locked up, my other arm was locked up, my fingers were locked up.”
Through recent genetic testing, Chase was found to have a mutation in sphingosine-1-phosphate lyase (SGPL1), which can result in nephrotic syndrome, ichthyosis, facultative adrenal insufficiency, immunodeficiency, and neurologic defects.
Overall, there are only 30 people worldwide identified with SGPL1 deficiency. The individuals, from 15 families, are from Pakistan, France, Spain, Canada, Morocco, Saudi Arabia, Turkey, Iran, Austria, Israel, Serbia and the United States.
“I have a gene mutation,” Chase calmly states. “I’m the only person in the United States who has been reported with it.”
It has been a long road for Chase since that day 11 years ago. Occupational therapy helped straighten his arms. Surgery helped straighten his legs. But he was never able to get his fingers straight. Needing better home therapy for his fingers, he started playing guitar.
Chase has been playing guitar now for two years. “I am self-taught. I just love it. It’s great exercise.” But he also plays guitar because he loves music.
“Music just spreads joy. I’ve learned that I can put a lot of emotion into my songs using the guitar and spread any kind of joy. I like just about any kind of music. I play anything from blues to jazz to rock to rap. Anything you can think of, I will try and play it on guitar. I will try my best at it as I do with everything. I always give it my all.”
Chase recently transferred from Children’s Hospital to Chromalloy Dialysis Center for hemodialysis three times a week. “You know, being on dialysis takes up a lot of time, takes up a lot of your day. Still, I manage to play guitar two hours a day.”
Since picking up the guitar and composing his own music, Chase has posted 11 music videos on his YouTube channel, Milk Toof. See here for his first video posted in 2016 and another composition, This is Not a Test.
“I’ve written a few songs, but I can’t sing, so I need other people to sing them for me! Actually, my friend Chris and I’m trying to start my own band right now.”
Chase also wants to use his YouTube videos to tell his story. “I want to reach out and find people who have this disease, because there are still people out there who are trying to figure out what they have. They honestly don’t know. I was there once, and I was lucky to find Dr. Megan Cooper, who through a blood test was able to identify my disease. For almost 10 years, I was just guessing. I want others to find their Megan Cooper.”
Dr. Megan Cooper
“Chase is such a great person,” says Dr. Cooper, Assistant Professor of Pediatrics and Pathology and Immunology. “Through all of his challenging medical problems he has retained a positive spirit. “Whenever I see Chase, his first question is always How are you doing? The cause of Chase’s disease was only recently uncovered by genetic sequencing. We are hopeful that now that we understand the mechanism of his disease, we will one day be able to provide a targeted therapy for him and others with his condition.” Dr. Cooper is co-author of the recent publication titled Mutations in Sphingosine-1-Phosphate Lyase Cause Nephrosis with Ichthyosis and Adrenal Insufficiency in the Journal of Clinical Investigation.
Right now, Chase is learning to learn to walk again. “I’ve learned how to walk a few times in my life, but every time, something would happen. In 2016, I was walking probably 20 minutes in therapy, and then my kidneys started to fail.”
Although Chase admits that dialysis has been hard and that he looks forward to eventually getting a kidney transplant, he says that if he had the choice to be someone else, he wouldn’t. “You know, it’s been an honor for me to actually have this disease because I’ve been able to meet so many people and just spread positivity.”
Chase says not many people would view this disease in a positive light. But he does.
“I am someone who can truly handle this. And handle it well.”
Jennifer Malson, mother of two, was recently surprised by KMOV’s Surprise Squad. She is part of the Forest Park Kidney Center’s home hemo program. Jennifer’s friend, Kim, nominated her for this special visit, not only to help her friend, but to raise awareness for World Kidney Day and transplants. Check out the story here…and have a hankie or two..or three ready.
A Nephrologist is The Cooking Doc – #ChangeYourBuds
The Cooking Doc is an online cooking series that features Dr. Blake Shusterman, a nephrologist. He whips up a delicious combo of his knowledge of the kidney and his passion for cooking. Healthy never tasted so good!
Poached fish in olive oil and citrus, yum!
Check out a chicken, squash and kale casserole.
5,000 Kidney Transplants – A Bittersweet Celebration
Left to right are Jason Wellen, MD and Director of Kidney and Pancreatic Transplantation; Dr. Benjamin Humphreys, Chief, Division of Nephrology, Dr. Andrew Malone, Division of Nephrology, Transplant, and Dr. Tarek Alhamad, Division of Nephrology, Interim Medical Director of the Kidney Transplant Program.
The Washington University and Barnes-Jewish Hospital kidney transplant program, one of the largest and oldest in the United States, celebrated a milestone in 2017: The 5,000th patient to receive an adult kidney.
The program began in 1963, with the first living kidney donor transplant performed in 1965. The team generally averages more than 230 kidney transplant surgeries each year: More than half of all the kidney transplants performed in Missouri. In 2017, a record 254 kidney transplant surgeries were performed. Washington University/Barnes-Jewish Hospital is consistently ranked among the nation’s best by U.S. News & World Report for the treatment of kidney disease and was ranked 9th best hospital for nephrology in the U.S. for 2017-2018.
Members of the Barnes Jewish Hospital kidney transplant team and WU Division of Nephrology, Transplant.
“Each of those transplants has a great story attached to it,” says Tarek Alhamad, MD, Interim Medical Director of the Kidney Transplant Program. “We are thrilled to see patients able to go back to work, continue education, do their favorite sport, run a marathon or travel around the world. Basically, patients get their lives back.”
(left) to Office Coordinator Laura Kipper (right) work to make the kidney transplant program a success.
Dr. Alhamad emphasizes that all the members of the kidney transplant team work together for one purpose – to provide the best patient care to kidney disease patients so that they will enjoy a longer and better life. “This is the philosophy of kidney transplant care at our center.”
The center offers innovative and life-saving treatment options that may not be available elsewhere. This includes the use of long-acting immunosuppression medications that have fewer side effects, which results in better patient adherence. Alhamad points out that the center is one of the few centers to monitor donor-derived cell-free DNA (dd-cfDNA), a sensitive biomarker used to assess graft health in kidney transplant recipients.
Drs. Wellen, Malone, Alhamad and Rowena Delos Santos.
More than 100,000 patients with kidney disease are waiting for a kidney transplant. A living donor kidney transplant provides better survival and avoids what could be a long wait for a decreased organ. In the St. Louis area, the waiting time for a deceased organ is approximately three to four years, whereas it can be up to ten years in other parts of the country.
After an intensive post-transplant follow-up in the transplant clinic, patients are seen once a year for the rest of their lives. Alhamad says it is rewarding when patients come in for their follow-ups and talk about how well their transplants are working, how they enjoy not being tied to dialysis, and how satisfied and grateful they are to be living their new lives. “That is the most exciting thing about our work.”
Nurse Practitioner Helen Wijeweera (left) and Brittany Heady, Physician Assistant.
Mary Myers, Barnes Jewish Hospital, and Dr. Venkatachalam.
Devin Wall and Rachel Cody of WU Nephrology work on kidney transplant clinical trials and studies.
Holiday Bingo at Chromalloy Kidney Center
The holiday Bingo games, an annual event for over 30 years, was held in the Chromalloy dialysis center during the three dialysis shifts (7:45 am, 10:45 am, and 2 pm) on December 20 and 21, 2017.
Organizer Brenda Bingel, Nurse Administrator, put out a call for prizes for the event, which is always a fun time for both patients and staff in the dialysis center.
Patients received a small prize for each winning Bingo card. Donations included patient favorites: large-print crossword puzzle books, “seek and find” books, and useable items such soaps, lotions, and candles and food items such as jams and jellies. Ever mindful of the kidney, no chocolate, nuts, or nut butters were given as they are high in potassium and not recommended for the patients.
Retired staff members came to help, call Bingo numbers and handed out prizes.
“Patients are happy to see retirees come back and visit with them while they help out with the bingo party,” says Brenda. “I really appreciate all of the staff, former and present, in making these parties a success. It really reflects their dedication to the patients and the unit.”
Brenda Bingel, RN, MSN, can be contacted at 314-362-0238; firstname.lastname@example.org.
Mangia! Ravioli Dinner Fundraiser
RoseMarie Bianchi, a dialysis patient at Chromalloy Dialysis Center and co-founder of The Sick and Elderly Program of the Hill, is getting ready for the foundation’s annual fundraiser – a big, Italian, ravioli dinner.
The Sick and Elderly Program of The Hill is a volunteer home health care foundation that provides free medical equipment and supplies to the residents of The Hill neighborhood in St. Louis, which proudly celebrates its Italian heritage.
RoseMarie and her husband, John, founded the program over 40 years ago. Today, RoseMarie is Chairwoman of the Board, John is President, daughter Debbie Hilderbrand is Vice-President, and sons Bob, John, and James are on the foundation’s board.
The Bianchi’s generosity extends well beyond the boundaries of The Hill. It is not uncommon for the foundation to provide patients in the Chromalloy Dialysis Center with much needed medical equipment. See here for a previous Division of Nephrology news article featuring RoseMarie and her son Bob.
All proceeds of the Ravioli Dinner fundraiser benefit the foundation. Click here for the flyer.
You can follow The Sick and Elderly Program of The Hill on Facebook.
Community Organizations Team Up to Offer Free Health Care Screenings
The NKF will offer free kidney screenings as part of its KEEP Healthy Program. This community-based initiative helps educate the public about the kidneys, risk factors for kidney disease, and steps to take to keep kidneys healthy and reduce risk.
Participants will have access to screenings for hearing, blood pressure, blood glucose and cholesterol, as well as albumin-to-creatinine ratio urine tests for individuals at risk of kidney disease. Hepatitis C and HIV testing will be available. Flu shots will be offered to the uninsured.
Nurses, physicians and advanced practitioners will be on hand to review health screening results with participants. Information concerning health insurance options, free/reduced cost medical services and prescription medicine will also be provided.
This event is open to the public and all services are free of charge. Interpreters will be available on site, provided by LAMP (Language, Access, Multicultural People). Participants can enter a free raffle to win a $50 grocery gift card.
Anyone interested in volunteering for the event should contact Sal Valadez at 319-383-6200 email@example.com. General volunteers and interpreters are always needed!
WU Nephrology Awarded Grant to Reduce ESRD Patient Readmissions
“One of our core values in the Division of Nephrology is to improve the health of our patients,” says Benjamin Humphreys, MD, PhD, Joseph P. Friedman Associate Professor and Chief of the Division of Nephrology.
The Division of Nephrology has been awarded a two-year grant from the Barnes Jewish Hospital (BJH) Foundation for a proposal to reduce 30-day hospital readmissions for ESRD patients.
On average, a dialysis patient is admitted to the hospital twice a year and over 30% of those admissions will have an unplanned recurrent hospitalization within 30 days. This is double the readmission rate of non-dialysis Medicare beneficiaries.
Frequent hospital readmissions contribute to high mortality rates and poor health-related quality of life of ESRD patients, and are costly, as well, to the dialysis unit and hospital involved. Improving readmission rates is beneficial to all involved.
The two in-center dialysis centers operated by Washington University – Chromalloy American Kidney Center and Forest Park Kidney Center – manage approximately 400 patients, as well as another 200 patients in the community. In 2016, of the 771 hospital admissions for these patients there was a 28% rate of readmission within 30 days.
Humphreys states that improving the readmission rates “will require direct monitoring, enhanced communications between providers and patients, specific and focused patient education, and interactive provider interventions”. The plan is to establish a robust transitional care program to target dialysis patients admitted to Barnes Jewish Hospital for intensive follow-up to prevent readmission.
Humphreys notes, “I am excited that this grant from the BJH Foundation will allow us to test new ways of keeping our dialysis patients out of the hospital, and in so doing, reduce costs, improve outcomes and enhance patient quality of life.”
Specific aims of the program are:
Create a 30-day readmission risk-assessment tool that will allow optimal communication between the provider and the patients. Patients will be categorized as a low, medium, or high readmission risk based on criteria such as the patient’s social support system, laboratory parameters, adherence record, discharge destination, and dialysis modality.
Once the readmission risk is assigned, an intervention plan will be developed to meet the challenges of each patient’s individual needs when discharged. The plan will focus on matters such as reviewing medication and discharge instructions with both the patient and caregiver, providing dietary support and counseling, scheduling visits by nurse coordinator/physician during first week post discharge, following-up with phone calls to the patient/caretakers, and ensuring appointments are kept with non-renal outpatient providers.
Develop patient education tools to target clinical problems that affect readmission rates. This will include development of patient-friendly tool to manage medication, diet, and fluid restriction at home and one-on-one education with patients and families.
Monitor and track patient outcomes.
Dialysis Patient’s Kidney Walk Entourage: Five Years and Growing
Garland Patton, a dialysis patient in the Chromalloy Kidney Center at Washington University, and a group of more than 50 family and friends, turned out for the annual St. Louis National Kidney Foundation (NKF)-sponsored Kidney Walk held last April. This was the fifth year in a row that the Patton group took part in the fundraiser.
Garland’s oldest daughter, Erica, says the family was originally encouraged to join the NKF walk by her niece Michaiah, who wanted to do something for her grandfather. So, a group of ten including Garland, Erica, her siblings Trineice, Garland Jr., Ebony and Terrence, and mother Sheila gathered for their first walk in 2012. “We got so much knowledge from it – about how to take care of our bodies and how to help with our dad. We loved the event so much,” says Erica.
Kidney Walk 2015 with Garland Patton (center) and family members.
Since that first walk, the group has made t-shirts and participated in various fundraisers and outreach programs to “get the word out” about the kidneys and the important role they play in your body. “This year was the best year ever,” says Erica. “Not only did we get to donate a nice amount but we had over 50 people to join and help out with the movement. Family and friends from all over got a chance to enjoy the NKF walk.” The family event is so popular that a nephew from Atlanta, Georgia, has travelled to St. Louis to join in the last few walks.
Garland, who just turned 56 and who has been on dialysis for 18 years, is very enthusiastic about the event, “We enjoy it. It gets bigger and bigger, you know, more and more people want to come. It‘s not the biggest group, but we’re in there!” Garland says the NKF walks are a place to get to know others in your situation – and more. “You get to meet people. You get to meet different doctors, nurses, and staff. There are a lot of other people there.”
Garland Patton with cousin at the 2013 Kidney Walk.
The Kidney Walk is usually held on the St. Louis University campus at Laclede Park. This year, due to weather that forced cancellation of most outdoor events in St. Louis that day, the event was held in the Chaifetz Arena. “We made the quick decision to change venues to an inside facility in order to still be able to hold the walk,” says Cherie Gilderbloom, Development Manager for the National Kidney Foundation serving Eastern Missouri and Metro East. “We were able to work with Chaifetz Arena, who was fantastic in helping us figure everything out in a short amount of time to pull off an incredible event.” The walk featured The King of St. Louis as emcee and live music from Blackdog and the Rainmakers.
Over 1,000 participants walked in the 2017 event and raised over $135,000 (and counting) to raise awareness of kidney disease and to fund programs that educate and support patients, their families and those at risk. “We were so grateful for the turnout. It’s so awesome how dedicated our walkers are and show up year after year,” says Cherie.
The Patton family wants to continue to spread the word about kidney disease. “The awareness starts with us letting people know that knowledge is out there for them,” says Erica Patton. I just really want people to look at my dad and know that he is more to us than a dad. He is our hero every day. He fights to be here with his family. If you know someone going through something similar, support them! Get out there and gain as much knowledge that you can about it. Be their hero!”
As for Garland, he’s enthusiastic about the annual event and proud to be part of raising the awareness of kidney disease. “It’s pretty nice, it really is. You’ve got people involved. It was all new to me, but I got a chance to tell somebody.” Known in the dialysis center as someone who is “always being so upbeat and positive”, Garland is more than happy to have his story posted on social media. “Maybe we can find more people!”
As Garland sits hooked up to a hemodialysis machine in Chromalloy, patiently waiting for his session to finish, he points to a woman whose family had taken part in the walk. “They want to join my team next year.”
For more information on the annual St. Louis NKF Kidney Walk, contact Cherie Gilderbloom: firstname.lastname@example.org or 314-961-2828 ext. 486.
Follow links to see the sponsors and in-kind donors who helped make the event possible.