In the spring of 2011, my husband Bobby started to experience extreme swelling in his feet and legs. At the same time, his cholesterol rose dramatically. The PrimaryCare doctor at that time simply gave him increasing doses of statin drugs, which proved to be harmful, and his condition worsened.
Because he had been an EMT and drove an ambulance, and a volunteer firefighter/medic in Ponderosa Basin and drove a fire engine, he had a Class C Driver’s License. Even though he had retired from 33 years of teaching high school, he still wanted to be available to volunteer for his community should the need arise. So – he went to a walk-in clinic for his DOT medical clearance to renew this license.
He was stunned when the routine urinalysis showed excessive levels of protein in his urine. The normal amount is ZERO. The next day he saw the Primary Care, who finally ordered a urinalysis, and immediately referred him to the Nephrologist (Kidney Specialist) at Kaiser. She ran a gazillion tests, and had him undergo a kidney biopsy. He was formally diagnosed with a rare kidney disease called Focal Segmental Glomerular Sclerosis, or FSGS.
For nine months, the prior doctor had misdiagnosed him, and the disease progressed. We changed Primary Care doctors immediately. A little “Kidney 101”… ALL of our blood flows through the kidneys. They act as filters, separating out waste products and valuable blood products such as protein. Think of a screen – the smaller it is, the less the important things can leak out. In Bobby’s case, the disease had caused scarring in these filters, causing them to let protein leak out of his body through the urine. The more protein that leaks out, the more the kidneys themselves are damaged.
The initial treatment was brutal. He was put on huge doses of Prednisone (a steroid) and a list of drugs that included immune suppressants, diuretics, blood pressure meds, antibiotics, cholesterol meds, and many more. He had horrible side effects, including insomnia, tremors, fatigue, muscle cramping, thin skin, excessive bleeding, and pain.
The good news was that he showed almost immediate improvement (reduction in protein leakage) after a few weeks on these drugs. The bad news was that this disease – FSGS – is incurable.
The Nephrologist said he would be on dialysis within two years, and would most certainly need a kidney transplant in the near future.
Life as he knew it changed overnight. He was no longer able to go fishing, go out metal detecting, or go hiking in the mountains. He could not putter in the garage. The immunosuppressants turned him into a virtual hermit, as he lost the ability to fight off any infection or virus. We missed our family gatherings, seeing our friends, and attending church. Everywhere he went, he had to wear a surgical mask to avoid germs.
But we never lost sight of the fact that God was in control. We depended on Him to guide and protect us as we navigated this new path.
Because Bobby is a fighter and a true Believer, we made the decision together to do whatever it would take to NOT progress to dialysis or transplant. We became a team to fight this. We changed our diet completely: everything we ate was gluten-free and kidney-disease friendly. He made chart after chart and kept records, the likes of which his doctor had never seen.
She called him her model patient, and wished ALL her patients would be like him. He never complained, never asked "Why me?"
After the first awful round of drugs, the disease went into partial remission, and he started to feel better. He was able to start back with some of the activities he had enjoyed prior to his illness. He served on the Board at the California Teachers Retirement Association, and most importantly, returned to Celebrate Recovery, playing drums in the Worship Band.
Six months after his diagnosis, he was well enough to be MY rock when I was diagnosed with Breast Cancer. Again, God’s hand, and the prayers of family and friends got us through those tough times.
Over the past five years, he had relapsed only once, and once again, the toxic drugs were prescribed in massive doses, stopping the progression of the disease. But they had taken their toll: in 2015, he became an insulin-dependent diabetic, caused solely by the long-term use of Prednisone. The Prednisone also caused glaucoma and cataracts.
(Luckily, he had his cataract surgery last month and is doing well. He no longer needs the thick glasses he had worn since childhood. His vision was restored to 20/20 in one eye and 20/30 in the other. We were blessed that this simple technique made such a huge difference in his life – he had become almost blind due to the cataracts.)
In May 2016 we went to Stanford, to meet with the “FSGS Guru” – the doctor who has done most of the research on this disease, not only in the U.S., but all over the world. His advice? Get off the Prednisone and NEVER go back on it. He suggested that Bobby manage his disease through diet and exercise. He also suggested a huge increase in the amount of blood pressure medication (he takes two different ones) as high blood pressure in the kidneys can be deadly. He also gave us some suggestions as to alternate medications, but did not hold out much hope for any of them, saying that the disease had progressed quite a bit in the past five years.
Slowly, Bobby began to taper off the drug. It was a painful, exhausting experience. It also caused his disease to go from partial remission, to a rapid relapse.
In October 2016, we learned that Bobby’s kidney function had dropped to just 25%. The doctor told us that we needed to start looking for a kidney donor.