MARION — At first, Nicole Sigafoose thought she was dealing with high blood pressure, but she found out it was something entirely different.
The recent new Marion resident via Illinois was diagnosed with IgA nephropathy. If you don’t know what that is don’t feel bad, Nicole didn’t either. Since her 2016 diagnosis, it has been all-consuming.
According to the Mayo Clinic, IgA nephropathy, also known as Berger’s disease, is a kidney disease that occurs when an antibody called immunoglobulin A (IgA) builds up in your kidneys. This results in local inflammation that, over time, can hamper the kidneys’ ability to filter waste from your blood, according to the Mayo Clinic.
IgA nephropathy usually progresses slowly over several years, but the course of the disease varies from person to person. Some people leak blood in their urine without developing problems, some eventually achieve complete remission and others develop end-stage kidney failure.
No cure exists for IgA nephropathy, but the Mayo Clinic says certain medications can slow its course. Keeping your blood pressure under control and reducing your cholesterol levels also slow the disease.
IgA nephropathy usually doesn’t cause symptoms in the early stages, so the disease can go unnoticed for years or decades, according to the Mayo Clinic. It’s sometimes suspected when routine tests reveal protein and red blood cells in your urine that can’t be seen without a microscope.
“They (doctors) checked my kidneys and said my kidney levels were at 28%. There are five stages of kidney failure and when I was diagnosed I was in stage 3 headed for stage 4,” she said.
Currently, Nicole said she is in stage 5 and renal failure. No one else in her family has any problems with kidney disease. She was never a smoker or a drinker. There is no known reason why this is happening to her.
Although she has five children in her blended family with her husband Bryan, Nicole said she doesn’t have concerns about them getting IgA. She may not know what was the exact cause, but Nicole said he has some ideas about what might have contributed to it.
“I did not have the healthiest of diets. I didn’t drink enough fluids. Now we don’t put salt in foods and there are things we stay away from for the kids’ health and well-being,” she said. “There are times when we don’t have a choice like when we are traveling for doctor’s appointments but most of our meals are home-cooked. No boxed or canned foods and everything is fresh.”
Nicole was 29 when she was first diagnosed with IgA. She now is 35. At first, Nicole said she did well with it. Since moving up to Marion from Illinois in February 2020, her condition has worsened.
She said she struggles a lot more than she did in the beginning. She is easily tired and has to have 7 hours and 42 minutes of dialysis every night. After she had a peritoneal dialysis port surgically put in with a systemic catheter. Before that, Nicole said she went three times a week to a dialysis center for three hours each time.
There are two kinds of dialysis. In hemodialysis, blood is pumped out of your body to an artificial kidney machine and returned to your body by tubes that connect you to the machine. In peritoneal dialysis, the inside lining of the stomach acts as a natural filter. Wastes are taken out utilizing a cleansing fluid called dialysate, which is washed in and out of your belly in cycles.
“Doing dialysis three days a week was hard on me and my family. It made me extremely sick. We had the port put in and I have been doing it at home,” she said. “Now I’m not as sick as I was and I have more energy. I’m still not where I would like to be. I get tired quite easily.”
She also said when she is getting her dialysis at home she has enough cord length to allow her to use the bathroom and that is it. So if her children need something, they have to come to her. As a mother, Nicole said that bothers her because she should be able to care for her children, whether they are sick or have a bad dream.
It has been hard on her husband Bryan as well. She said he has stood by her since they started dating and has been her rock. He tells her she is the strongest person she knows, but Nicole said at times she doesn’t feel that way.
“We met after I was diagnosed. On our first date, we went to a concert and I passed out. I threw up on him,” she said. “It was from my kidneys. He never left my side, but I scared him. He thought I was going to die.”
Call it fate or whatever you want, but Nicole said from that time on they have been inseparable. He has seen her best and her worst and she said he kept coming back for more. They eventually married and she said she believes he is her soul mate.
IgA is not to be as progressive as it is with Nicole and it’s somewhat unexplainable why her kidneys failed so quickly. When she was first diagnosed, doctors told her they believed she could last 15 to 20 years before she needed a transplant.
She made it five years.
Youth, however, is on her side and that is why they chose to utilize Mercy Health Kidney Transplant Center in Grand Rapids. She also said due to her age and her health issues they have opted to not utilize the deceased organ donor list. If they would have, Nicole said she likely would have had a transplant already.
She has started a website, kidneyfornicole.com, in hopes of getting her story out. Anyone who will listen, she will tell her story. While she is seeking out a kidney, Nicole said she is hopeful that this also will shed light on organ donation. If a person can’t help her, maybe they can help someone else.
“The whole journey has been an up and down rollercoaster. One moment I’m excited, the next I’m absolutely beside myself,” she said.
In addition to the website, Nicole is documenting her journey via a Facebook page. To find it on Facebook search, Live Strong, B+ Nicole’s Kidney Journey. If you are interested in possibly donating a kidney to Nicole you also may call her at (517) 605-7677 to see if you are a match.
If someone asked Jenny Hoaglund who Nicole Sigafoose was a month ago, she wouldn’t have likely answered she didn’t know.
It’s funny how things work out sometimes.
As the owner of the Cadillac printing business Above and Beyond Screenprinting and More, LLC, Jenny said she received a phone call from Nicole. Jenny said Nicole wanted some t-shirts made before the Marion Old Fashioned Days 5K in last month.
She said she could and when she found out what they were putting on the shirts and her need for a kidney donor, Jenny was moved.
“My dad received a heart transplant on July 4, 2016. I understand (the donor process) and it hits me right in the feels,” Jenny said. “I said I will do what I can to help.”
What that meant is she helped her with the website that has Nicole’s story and ways people can help to support her. They are selling shirts, stickers, cups, mugs and more. With each purchase, Jenny said Nicole and her family get $5.
Ultimately, Jenny said she wants to help Nicole but also others in need of live organ donations. Like Nicole, Jenny said if someone can’t help her, maybe they can help someone else. With the website started, Jenny said she plans to keep it going and eventually, she believes it will be a way to help others.
For now, however, it is helping Nicole on her kidney donation journey.