By Deborah Pelaez, AAKP Marketing and Communications Manager
Gabriella Nelson is a healthy 3-year-old, happy and full of life. If you met her, you would never know by looking at her all that she has been through. You would never guess this beautiful young girl has a kidney transplant!
Gabriella was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) at 17 months old. On December 1, 2017, when Gabriella was 16 months old, her mother, Angela Clayton, took Gabriella to the doctor because she was concerned that she may have allergies. Angela had allergies as a child and was concerned about Gabriella’s swollen eyes.
At the doctor’s visit, Angela said her primary care doctor was very concerned, “the doctor told us go right now to Children’s Hospital ER, he said to drive safely, but don’t make any stops on the way.” Angela learned later that Gabriella’s primary care doctor had studied under a nephrologist and recognized the signs of kidney failure. The Children’s Hospital’s nephrologist was waiting on them at the door. At first, Gabriella was treated for minimal change disease, exhibiting symptoms of nephrotic syndrome and was started on steroids. Angela says that the doctors kept changing the dose of steroids but eventually released them from the hospital in time for Christmas.
Angela was nervous having Gabriella in the house, she did not feel knowledgeable about the disease and Gabriella seemed to be getting worse and worse. On Christmas day, all Gabriella wanted to do was lay all over people and that is not her normal spunky personality. A few days after Christmas, Angela brought Gabriella back to the hospital due to swelling. Additionally, the PH strips she had been given to test the amount of protein in her urine were not changing; the doctor said if it changes, then the steroids were working.
On January 5, 2018 a renal biopsy was scheduled for Gabriella. Angela said she was very nervous, and the doctor told her he had to take five samples. The samples were sent to Georgetown University Hospital to get results – it was determined that she had FSGS. Angela read about the disease, and she said that nothing she read was good, and nothing prepared her for the on-start of dialysis to come.
Mid-January, the doctor said he was going to send her home, but Angela rejected that plan. Gabriella was carrying a lot of fluid, and Angela had serious concerns. Gabriella was not walking; her feet were swollen. Angela told the doctor, “I can’t hold this weight. I might fall and drop her.” Angela says she went from having a 20 lb. baby to a 30 lb. baby – “it was a drastic change.” The social worker allowed to them to stay.
Angela says that the next doctor that came on shift was the transplant doctor. She said, “I heard you didn’t want to go home, and I fully understand why. Your daughter needs dialysis. That is the only way to get the fluid off her.” Angela says she did not know anything about dialysis – she started asking a million questions. Soon after, Gabriella went to surgery to get a catheter inserted. Her fluid had become obsessive – it was an emergency now. Gabriella had been on dialysis for a few days before Angela had a meeting at the hospital where she learned about dialysis and how to safely wash and care for Gabriella. Dialysis made Gabriella even more clingy and scared. Angela started breastfeeding Gabriella again to soothe her – but some of the nurses were questioning her about doing this. Angela says that she felt like they were questioning her mothering skills. They asked her to pump instead of nurse, so they could measure the fluid. Once they were convinced that she was not feeding too much, they allowed her to breastfeed even though they were also concerned about her reverting back to breastfeeding.
Gabriella was on dialysis from January – October 2018, when she finally got a transplant! Angela says that Gabriella never qualified to be on transplant list – children need to be 2 years old and weigh at least 22 pounds to be on the list. However, Gabriella was on a pretransplant list. She was given an information card to pass out to friends and family interested in being a kidney donor to Gabriella, so that they could start getting tested. That way, by the time she was 2 years old and weighed enough there would be less waiting. At first, no one Angela knew matched, or else they did not qualify. Angela was a good match but she did not want to be separated from Gabriella (the donor would have surgery at Georgetown University Hospital, while Gabriella would have surgery at Children’s Hospital). Additionally, Angela was the only caregiver for Gabriella.
She needed to work and support Gabriella. Then in June, Angela’s cousin called and said his wife wanted to get tested. Angela gave information to them, but then did not hear anything else. In July – for Gabriella’s birthday – they had a prayer balloon send off – the prayer was that by this time next year they would have a kidney for Gabriella. She did not know that her cousin’s wife was still going through the process. In September, she learned that everything had been approved and they were just waiting on Gabriella to get up to weight. The surgeon measured Gabriella – she is small in stature and slender. The surgeon talked to the other surgeons and they agreed to go ahead and do that transplant even though her weight was lower.
Gabriella had a successful transplant surgery on October 9, 2018. Angela said that the surgery was long with no updates. Angela said she kept asking, “what is going on my child?” The kidney was being transported from Georgetown University Hospital to Children’s Hospital via an ambulance. Everything went smoothly with both the donor and Gabriella. Gabriella had her energy back almost immediately. It was an amazing transformation. She continues to take high blood pressure medication and immunosuppressants to maintain her transplant.
Gabriella, Angela, and Gabriella’s godmother, Leslie Jones, attended Capitol Hill Day in June 2019 with the Renal Physicians Association and AAKP Ambassadors and Board Members. This was their first time on Capitol Hill advocating. They were asked to attend to share Gabriella’s story with lawmakers. Angela says now that she knows what is involved in advocating and how impactful they were she would definitely do it again. She says that when people find out that Gabriella went through dialysis and had a kidney transplant you can see the compassion that they have. She wants lawmakers to know that the bills affect children and parents too, not just adults with kidney disease. She hopes sharing Gabriella’s story and her concerns as a caregiver makes an impact.
For those joining us live, we will treat you to Lunch with the Experts where you can spend an hour talking with a variety of experts on one of over twenty different topics. In the afternoon, we offer a selection of nine different breakout sessions. We cap the evening off with a reception among our Exhibitors. The National Meeting Exhibit Hall is a must for all attendees. Vendors seeking to interact with attendees offer you an exciting collection of displays from new technologies to services catering to kidney patients. All of this takes place on Friday. Saturday provides a similar venue, except that we host our Annual Awards Banquet where we recognize individuals, public servants and organizations that have excelled in supporting the kidney community. On Sunday, we host two General Sessions. The first Session titled Patient-Centered Research: Shaping the Future of Your Care is a featured PCOR Track. The PCOR Track is designed to specifically address the ongoing problem that there is in an overall lack of patient awareness and involvement in the design of clinical interventions and research in the kidney space and how the Patient Center Research Institute (PCORI) is doing research differently. The final session of the National Patient Meeting is entitled – AAKP Action Alert 2020. In this session, we provide patients and care partners with a glimpse into the future of AAKP and will provide you with the tools to get engaged and share your views with elected leaders, and hence provide AAKP leadership with the leverage to have a more impactful presence on Capitol Hill and across the kidney community. Both of these sessions will be live streamed on Sept. 8th as well as recorded.
I, along with our Board Members and Ambassadors, bring you a message of hope. However, let’s remember that hope is not a strategy. We often refer to AAKP’s National Strategy. We continue to build on our mission of educating and advocating for patients and caretakers by using our knowledge of the legislative process; our familiarity with the Executive Branch; collaborating with industry partners, government agencies, and other allies; and embracing technology to amplify our message. We are clear that the source of our strength lies in our patient members. My friends, I want to encourage all of you to support our mission and get more engaged in helping us help you. I leave you with a quote from Winston Churchill, “It is not enough that we do our best; sometimes we must do what is required.”
This article was originally published in aakpRENALIFE, September 2019.