Our Stories

Jamie’s Story 

Growing up I was a very physically active person, and have always taken care of my body. I played soccer from the time I was four years old and continued with sports through high school and college. 

Having been so active and health conscience, I was initially shocked when I was diagnosed with FSGS in August of 2009 at the age of 26. 

It all started in the beginning of 2005 when I started feeling much more tired than usual. I went to my doctor and was treated for mild anemia. He put me on iron pills for three months with no follow up needed. For the next four years I always felt like something was off, but could not pinpoint what that feeling was.

In May of 2009, I took a turn for the worse. I gradually started to lose weight (already being on the thin side), and was feeling extreme fatigue. I went back to the same doctor, had some more blood work done, and he continued to treat me for anemia. My doctor had crossed out the abnormal levels and wrote "OK" by them. He also ignored the amount of protein I was spilling which was about 1 gram per day. He mentioned that I was young so not to worry. Unfamiliar with the abnormal readings, I looked up the abnormalities online and realized that those results had to do with my kidney function. 

I then took the initiative and made an appointment with a nephrologist. With a quick glance, he knew that something was wrong. From there, an endless amount of tests began. After three long months of constant blood work, a kidney ultrasound and a kidney biopsy, I was diagnosed with Secondary FSGS, meaning that something else has caused my kidneys to fail. To make it worse, my nephrologist reviewed my blood results as far back as I was able to provide, and he determined that I had FSGS for at least five years. 

Every test that could possibly be taken to determine what caused my kidneys to fail turned up negative.  Had I been diagnosed five years earlier, the extent of the damage to my kidneys would not be as bad. I was told by my nephrologist that if this disease was caught in the early stages, things might have been different. It was very upsetting for me to hear that due to the advancement of this disease, my kidneys will eventually fail and I will need dialysis or a transplant to live.   

When I was first diagnosed, I felt massive amounts of anger towards my primary care physician, as well self hatred towards myself, thinking I did something to deserve this. I do not fall under any of the categories that put a person at risk for kidney disease. 

It was hard for me to come around and accept that this was my reality. It took a while for me to reach the stage of acceptance, but once I was to that point I had been feeling better. Unfortunately, feeling good was not long lasting. In the summer of 2010 I had started dealing with sudden stomach problems. Every time I ate I felt sick and was not eating enough which resulted in weight loss. I was suffering from such extreme fatigue that I had a very hard time doing normal everyday activities. I thought these were symptoms of kidney disease which is why I ignored them for so long. These problems continued through the first of the year and it took me missing three days of work to finally realize I needed to go see another doctor.

Since this time around my issues were stomach related, I made an appointment with a gastroenterologist. After another order of blood tests were done, the results showed my celiac panel levels were so high that the numeric level could not even be measured. I also had an upper endoscopy to see how much damage to my intestines was present. In April 2011 I was diagnosed with celiac disease, an illness where gluten acts as a toxin to your body which causes damage to your intestines resulting in malnutrition, malabsorption.

I could not believe that I was being diagnosed with another illness! Atleast, I now had the answers as to why I had been so sick. I was suffering from malabsorption and my body was not getting enough nutrients to function on a normal healthy level. Prior to my diagnoses, I struggled with some nerve problems that celiac disease had caused, but within a few days of eliminating gluten from my diet, my energy level had improved. I felt like a new person! It took a good three months to really start feeling better all around.

It seems as though I may be getting closer to the answer that I have been looking for. What has caused my kidneys to fail? Untreated celiac disease can cause a mess of damage to the human body, including damage to other organ systems. Could this be what caused my kidney disease? I will never get a definite answer, but I do think they are somehow related considering having one autoimmune disease puts a person at risk for others.

I have now been eating gluten free for about four months and am feeling much better! Unfortunately, my kidney function has recently declined and I am now in stage 4. I have been strong and have gotten to a more positive place which has made it easier for me to be accepting of my illnesses. I have been doing well in sticking to a diet that supports kidney disease and celiac disease, as well as staying on top of taking my medications for kidney disease. One thing I recently learned is that life is so much easier when you just accept the not so ideal aspects, instead of fighting it. I am lucky to have such supportive family and friends who help me get through this and live each day to the fullest. The main thing that kidney patients and their families need is support. With great people in your life and a positive attitude, you can overcome many obstacles. 

And remember…“Everyday holds the possibility of a miracle.”