G_Wiley's picture

Jenn’s Story

photoMy story started in the summer of 2005. I had a physical for work and the nurse noticed that my protein was high on the random urine sample. I had an appointment with my doctor a couple of weeks later and I mentioned it to him, so he had me do a 24-hour urine sample. That was the beginning of this tenuous journey.

I was 5+ at that time, and immediately referred to a nephrologist. We tried blood pressure medicines to see if my proteinuria would subside, but it didn't work. In December of 2005, I had my first kidney biopsy and was subsequently diagnosed with Minimal Change Disease. 

We have no idea what caused me to get this. I was 31 years old at the time, training for a mini-marathon and anxious to start a family, but needed to get this under control first. Luckily, I went into remission quite quickly with high-doses of prednisone. However, I was completely unprepared for the side effects of that horrible drug. Weight gain, mood swings, hair loss, extreme cravings, diabetes...you name it, I had it. But I stuck with it, and was cleared to start trying for a baby in the summer of 2007. We conceived quite quickly and found out we were pregnant in October 2007. I had a blissful pregnancy, and my protein spillage continued to decline throughout my pregnancy, getting to less than 300 mg/24 hrs. In June 2008, I gave birth to a healthy, beautiful baby girl. For the pain, I was given high doses of ibuprofen, which likely caused my latest relapse. 

In July 2009 I went back on prednisone, but by November we realized it wasn't working. So I had another kidney biopsy in December 2009, and this time the diagnosis was FSGS. Since then I've tried both Cyclosporine and Tacrolimus, but neither worked. I am currently only taking blood pressure and cholesterol meds to try to assist my kidneys in any way possible. I want to have more children, but my nephrologist AND my OB/GYN are both against it at this point due to my high-protein spillage (+16). This was a devastating blow to me, but I'm still holding out hope that I'll be able to get my protein level low-enough for doctor's to agree to another pregnancy.

Anyone that I would pass on the street would have no idea that I'm sick. Most of my co-workers have no idea what's going on, except when I'm on Prednisone and swell up like a balloon. This disease has made me feel very isolated at times. Family and friends, while doing their best to be sympathetic, have no idea what it's like.

I feel very fortunate to have found NephCure this time. I've used it frequently as a place to get information, or just to vent.

I've also started a blog (http://fsgssucks.blogspot.com) that I use as a personal place to vent. Sometimes I don't feel good...sometimes I'm very angry, and I need a place to get it out so I can let it go. I'm hoping that other people will contact me through this blog and want to post their stories, or their rants as well. It's OK to be down about this disease, but it's important to get back up.

Knowing that I'm most likely headed for renal failure is a difficult thing to wrap my head around, but I cannot change the course I'm on. I will, however, do whatever I can for those that still have a chance. I was fortunate enough to find and qualify for a clinical trial. It may not help me personally, but it may help others, and that's important to me too. I cannot imagine what it's like to be a child with this, or the parent of a child with Nephrotic Syndrome. There is so little information out there for us...so few studies, so few treatment options. Please help me and others like me find a cure.

 

 

 

Share your Story
Your story could provide support and information to many patients and their families. If you would like to share your story, email NephCure at info@NephCure.org.

 

By submitting your story you agree to allow NephCure to share your information and photo for marketing and promotional purposes.


 

Customize This