"Healthnetwork Saved My Life" — Angie Zuber
Let me start by saying, “Thank you.”
My name is Angie Zuber. I’m 23 years old. I work in Los Angeles at a talent management company. If it weren’t for Healthnetwork supporters like you, I doubt very much I’d be living on my own and working in my dream career field. I’m not even sure I’d be alive.
Here's My Story.
About 10 years ago I started having strange health issues. Part of what made it so strange is that I was a super healthy girl. I played on multiple basketball and soccer teams, and I competed in the Junior Olympics for track and field. By the time I got to high school, I pretty much had to give up on sports. I was exhausted all the time. I’d experienced severe rapid weight gain for no apparent reason. I got sick all the time with super high fevers. One year of high school I missed 40 days of school because of illness.
I tried to keep a positive outlook. I’m naturally an optimistic person, but it got pretty depressing, even for me. I developed anxiety about going to doctors. The typical pattern went like this: I’d go to a new specialist. They would listen, order some tests, and assure my parents and me, “We’re going to figure this out.” Some time would go by, no answers were forthcoming, and they’d lose interest. The worst was when a doctor would call my parents after the appointment and tell them to search my bedroom for hidden food. Since they couldn’t find a medical reason for the weight gain, they were convinced I must have had a secret eating disorder. I think the only reason my mental health did not completely tank is because of my parents. They always supported me and always believed in me.
I went to college and things got worse. I was getting sick even more often, and I regularly had fevers of 104–105 degrees. At one visit with my primary doctor he noticed an abnormality in my creatinine levels, which is an indicator of kidney disease. When I went back a week or so later the results had gotten worse. “You need to see a nephrologist,” he told me. At the time I didn’t know how critical that moment was.
I’d seen so many doctors by that point and been let down enough times that I didn’t get my hopes up anymore. My dad drove with me to the nearest major hospital with kidney specialists, and it was on that trip he told me about Healthnetwork and suggested we contact them. I didn’t really care one way or the other. To me this was just more of the same-old stuff I’d been dealing with for years. But I guess my dad had realized by that point that things were quite serious.
I was connected with one of Healthnetwork’s medical coordinators, Kim Dixon—literally the most amazing person ever! She was beyond attentive and after hearing my whole spiel, she immediately said she knew the person I should see. Within a week I had an appointment with a nephrologist at Brigham and Women’s Hospital. I’ve had enough experiences with wait lists to know this is not normal!
Also not normal is the level of care I received at Brigham. I’ve been to 20-plus doctors in the last 10 years, and this was far and away a better experience than anything I’d been through before. The doctor at Brigham and Women’s spoke to me like a person. He seemed to understand how scary this could be for someone so young. He bent his schedule to see me. He called to check on me and was available daily by text and email. I was so used to having to chase down doctors. This was shockingly different! Meanwhile, the amazing Kim Dixon from Healthnetwork was also constantly checking with me and encouraging me.
The results of my kidney biopsy came back and the nephrologist called me to break the news that I have an extremely rare kidney disease. I’ll never forget what he said to me that day: “What I’m about to say is going to change your life.” Always before I’d heard some version of, “It’s nothing scary. Don’t worry, we’ll figure it out.” So now to hear that something scary and life-altering was happening was pretty overwhelming. But at the same time it felt good to finally have answers. And I felt like I was in the best possible hands. I’m very solution driven (I’m like my dad in that way), and I immediately went into what-do-we-do-next mode. It was only months later reflecting back that I realized how close we came to a lot of darkness. If my parents were telling you this story, they’d probably have a lot more to say about how scary those days were because they realized how close I came to end-stage kidney failure.
Today I’m doing as well as can be hoped. I have had to learn to accept that I’ll never fully regain kidney function. I have to get regular treatment by IV—something my doctors have described as chemo for the kidney disease I have and I take medication to supplement that treatment.
Two years ago I thought I was just going to have to get used to never feeling well and spending my whole life in doctors’ offices trying to get answers. Now I know it was worse than that—I was on my way to total kidney failure! Today I have a lot of hope for the rest of my life, even if it’s different from most women my age. I feel so lucky and I truly believe Healthnetwork saved my life. I know that Healthnetwork is a nonprofit organization and only exists because of generous donors like my parents and you. So again, I say, “Thank you.” If you’ve ever wondered whether you are making a difference, let me tell you: You are!