Read about Jackson, Warner, Tessa, Alyssa and Christopher and their courageous fights against FSGS and Nephrotic Syndrome!
Our son, Jackson was diagnosed with FSGS last week – January 2013 – following a kidney biopsy. He received this terrible news two weeks before his sixth birthday. We discovered this when we asked the pediatrician if he should be getting sick as often as he was – pneumonia, followed by two ear infections, a number of colds, strep etc. We also noticed he was tired a lot, did not have much of an appetite and generally did not feel “right” most of the time. The pediatrician said it would be a good idea to check his blood to see if we saw anything. The blood results came back with several red flags. They found low albumin and total protein in the blood and an elevated sed rate as well as low immunoglobulin. We followed up the blood work with urinalysis and discovered that he has Nephrotic Syndrome – spilling huge amounts of protein into his urine.
Our next step was to see the pediatric nephrologist the day after Christmas, who put Jackson on high-dose prednisone. We tested his urine daily for protein hoping that the steroids would work. When that did not stop his protein from spilling into his urine, the doctor suggested performing a kidney biopsy. It was following the biopsy that we learned that he has FSGS.
We know that we have a rough road ahead and are hoping desperately that a cure can be discovered very soon. Jackson is the light of our lives, is loved by many and has always been one of the sweetest boys I have ever known.
We were then sent to a pediatric nephrologist. Warner stayed on steroids but in July, doctors found casts (tube-shaped particles) in his urine. They then ordered a kidney biopsy that came back as Minimal Change Disease.
We then started him on CellCept and blood pressure medications in addition to the steroids he was already taking. Once again, he did not respond to the steroids or the CellCept.
In November, his doctor discontinued his CellCept and steroids and started him on Prograf. Warner has been in remission ever since with just Prograf!
I know that this is just the beginning of our long road, but God has answered our prayers and has given us hope that children with this disease can be normal. My son is happy, and doesn’t have side effects from his medications or his disease.
In 1996, my life started changing. I was four-years-old when my mother noticed that I was sleeping in unusual amounts and that something was wrong. My doctor ran some tests and found large quantities of protein in my urine. I was then referred to a kidney specialist in Kalamazoo, MI, but after a kidney biopsy, the results were inconclusive. My mom pushed the problem behind her for a while, until two years later when she was sure something was wrong. I had another kidney biopsy at age six and this time, the results showed that I had FSGS and Nephrotic Syndrome. I was put on regular medication that was supposed to help me go into remission. I endured all of the nasty side effects and also went on many different forms of medicines from age 6-13, but none of them worked.
My mom was told to accept the reality of the disease because the doctors said by age 11, I would be facing kidney failure leaving me bed-ridden and unable to do anything. Even though the side effects from the medicines continued, like when my gums were growing over my teeth, I still lived out my life as normal as I could. I joined the cheerleading squad and track team in high school. I even ran a mile in six minutes and 22 seconds, winning first place!
I am now almost 20 years old and living with my fiancée. I am doing great health-wise, but I will eventually have to receive a kidney transplant (hopefully not anytime soon!). The doctors always told me, “You can’t, you can’t, you can’t,” but I made a promise to myself to always prove them wrong. I went from a girl who was doomed to a girl who can do anything she puts her mind to! I have to thank my family for their years of praying and also to thank God who has had me in His hands ever since I was born.
The first time I was alerted about any medical problems was when I became pregnant with my first child at the age of 18. It was discovered that I was spilling a large amount of protein in my urine. The OB doctor was concerned about preeclampsia and sent me to an urologist.
The urologist did some tests but wasn’t overly concerned. He did refer me to a nephrologist to be on the safe side. The nephrologist did test after test and it was discovered that my cholesterol was off the charts. I had lots of edema throughout, and my blood pressure was dangerously high.
Since I was pregnant, a kidney biopsy was out of the question. I was sent to a high-risk pregnancy doctor to continue seeing throughout the rest of my pregnancy.
The pregnancy was rough as it was difficult to keep my blood pressure down. Most of the drugs I needed to use would be toxic to the baby. I ended up being hospitalized twice for the blood pressure problem and on complete bed rest for the last couple of weeks of the pregnancy.
My kidneys were in poor shape as the amount of protein spilling kept increasing and the edema increasing as well. There was concern that the baby would be small, so there were visits made weekly to the OB doctor and multiple ultrasounds. At this time, the nephrologist thought that I had lupus, but couldn’t confirm so until a biopsy was done.
I ended up having a healthy baby boy at 7lb 9 oz. The doctors immediately started me on the more toxic/potent blood pressure medications, so I could not breastfeed. They let my body recover six months before doing a kidney biopsy.
It was then discovered that I had FSGS. I was started on high doses of prednisone (60mg a day) to try to put the disease in remission.
My body responded initially with a decreasing protein amount, but it rebounded and didn’t stay that way.
I ended up staying on those high doses for nine months with the moon face and all of those nasty side effects while trying to care for a newborn. Needless to say, the medication didn’t work, but over time, and with multiple medication changes to control blood pressure and cholesterol, my condition stabilized.
My son is now 12 years old and my kidneys are stable. I am down to taking only one ACE inhibitor and two cholesterol pills. The amount of protein I spill has stabilized and my kidneys are still working perfectly.
I cannot have any more children but I am so grateful that I could at least have one of my own and the pregnancy is what alerted physicians to the problem. Had I not, I fear what shape I would be in at this time with no chance of having children.
Growing up I would relapse constantly, especially around the holidays. Immense weight gains, pain in my legs, serious edema and a host of other symptoms have been apparent in my life.
I have now dealt with the condition for over 20 years. I’ve had all the mediations from Imuran, Cyclosporine, and the most popular of them all Prednisone off and on my whole life.
So far in my life, I’ve accomplished a lot by graduating from college and doing a lot of community service, but the Nephrotic Syndrome relapses still invade in my life at times. It knocks me down but I seem to get up from it every time.
I used to think there weren’t others with the same issue, but I see I’m mistaken. I currently live in Los Angeles and I’m looking forward to meeting people with experiences like mine and attending events that help in the fight against nephrotic disorders.