September 15, 2022
Maria Madak grew up having regular checkups and bloodwork to keep track of her kidney function because of her chances of inheriting IgA Nephropathy (IgAN), a type of kidney disease. When Maria left home, she stopped the frequent appointments since she had never had any kidney function issues up until that point. She did have several bouts of illnesses over the next few years, but they went away with treatment, so she wasn't too worried.
However, as Maria's 26th birthday grew closer, she began experiencing more frequent and painful illnesses from which she never seemed to heal completely. Since Maria didn't have a regular doctor, she visited various clinics and hospitals that she felt didn't take her concerns, symptoms, or lab results seriously. In 2018, Maria advocated for herself and found a doctor who listened to her fears of kidney disease.
Maria's diagnosis
Maria had assumed that IgAN wouldn't affect her until she got older, like her father, but a kidney biopsy proved otherwise.
"One week after the biopsy, I had this strange feeling in my gut that something wasn't right. I got to the doctor's office for a follow-up, did more tests, and the doctor came in and broke the news that I had IgAN," said Maria, "I was 26 but had the kidney function of an 80-year-old person and felt overwhelmed and scared. I knew kidney disease runs in both sides of my parents, so I knew there was a chance I may have it too, but I didn't think I'd have it this early."
Maria began a series of treatments and medications to try and slow the kidney damage down.
"I was put on steroids, immunosuppressants, and high blood pressure medications. The side effects were horrible. It made me tired, dizzy, nauseous, bloated, and gave me heartburn and headaches," said Maria. "I got used to it and lived with it. Then in October 2020, I got sick and had difficulty getting out of bed. My blood pressure was high, I had really bad headaches, and I was vomiting."
Unfortunately, a cycle of feeling well and then being very sick continued for six months before she decided to go back in for more blood work.
"I thought it was due to stress, but my gut told me it was something else. So I went to my primary care physician and had labs done," Maria said. "The next day, I was told I was in kidney failure."
Maria's kidney transplant
While Maria waited for a kidney, she did peritoneal dialysis for 9 hours every night and ate a low sodium, low phosphate, and low potassium diet. She wanted to do everything possible to keep healthy for the 3 to 5 years it would likely take to find a kidney.
However, less than a year later she received a surprise call from a transplant clinic: They had a kidney and she was the first on the waitlist!
"It was an exciting moment, and everything was happening so fast! That night, my husband and I flew from Seattle, WA, to Washington, DC. In less than 24 hours, I was in the hospital. On March 21, 2022, at 2:20 am, I was on my way to the operating room. 6 hours later, I officially had 3 kidneys at age 29," Maria said. "My new kidney is from a deceased 20-year-old man in the military, who was, unfortunately, in a collision. I am forever grateful for his generosity in becoming a donor. He saved me and gave me another chance to live. I may not know who he is, but he will always be part of me."
The first week after surgery was challenging for Maria, but she was able to move into a hotel room in the second week to recover in a more comfortable setting. Since the transplant center was so far from home, Maria spent an additional four weeks in the area meeting her pharmacist, nutritionist, and nephrologist before heading home.
"I have a very good support system. My husband has been there for my appointments, home peritoneal dialysis training, and after the surgery," Maria said, "I'm so grateful for that, especially since he is in the military. I know it wasn't easy, but he did it. My family and friends were also supportive."
Now, Maria is thriving: "Everything got better after getting my kidney transplant. I feel way better than I did last year; more energized, happy, and alive!"
Maria's advice
Now that Maria is on the other side of her kidney transplant, she wants to share the following advice.
If you have kidney disease: "For anyone who has kidney disease, especially the young ones, I know it is scary to have kidney disease, be on dialysis, and have a transplant but have hope. Be alert, eat right, take your medications, and be persistent with your lab and doctor visits."
If you are a supporter or parent of someone with kidney disease: "Always support them because it is tough. They need all the support and love you can give to get through this. It can be as simple as talking with them or taking them to appointments. It is an adjustment for all, but as long as everyone involved supports one another, you’ll be okay."
Get the support you need
Are you coping with kidney disease? Do you have questions, need support, or simply want to talk with someone who understands what you're going through? We can help! NKF Peers connects you with a trained mentor who has been there themselves.
Learn how mentee Heather and mentor Christine helped each other on their kidney health journeys.
