She's relapsing

So this beauty right here, my daughter Allie, who turned 15 on June 4th, has relapsed. Here is her story.

Just before turning 5, she was waking up every morning with swollen eyes. Being it was coming up to spring, we thought it was allergies. We bought new pillows, I cleaned everything top to bottom, but she was still waking up with swollen, puffy eyes. 

I took her to the dr for her check up. I explained to the dr what was going on, but she didn't give it a 2nd thought either. Must be allergies. So she ordered her annual bloodwork. I was shocked at the results. 

She was spilling protein in her blood, blood and protein in her urine and her cholesterol was so high, she was on the verge of stroke. Her condition was dire. I needed to take her to a nephrologist.   This was June. 

We were referred to chop, but they needed a metabolic profile for every member of our family, including the husband, who at the time didn't go to drs. Then the earliest appointment was the end of October.  We couldn't wait that long. We got her an appt the very next week with Dr. Singh, her amazing nephrologist. 

She was diagnosed with nephrotic syndrome that very first visit. The dr knew his stuff. Her blood pressure was sky high so he started her on a strict regimen of steroids and blood pressure meds and immunosuppressants.  We went back weekly and after a month, with little response to the steroids, she went into the hospital for the first time. 

Now we saw the dr at an office about 40 mins away, in which he was only there on Friday's. His regular office is an hour and a half away, in the hospital where she was admitted. 3 days of high doses I've steroids. She ended up having a kidney biopsy which revealed my biggest fear. Fsgs. 

Focal segmental glomulerosclerosis (fsgs for short) is basically massive scar tissue on the filters of her kidneys. Both kidneys. They don't know what causes it, and there is no cure. We can only treat the symptoms and keep her kidneys functioning as normal as possible for as long as possible. The same disease will for sure plague a new kidney. She will eventually, at some point in her life, need a transplant. 

In the meantime, she was in and out of the hospital, on a gazillion different meds, very expensive meds. She was homeschooled in kindergarten as her immune system was suppressed. The common cold could kill her. 

It took years but she finally made it in remission. Her disease is still there, but further damage is not being done. These last few years have been wonderful. She's a normal kid, teen. She works, loves her phone and hanging out with friend. She even went on her first vacation. 

And that's where it all started. 

She's been waking up in the morning with a very swollen face. Not just her eyes this time. When she showed me the pic I nearly fainted. My beautiful girl. Her blood pressure is a little high, but she's been so upset because when I checked her irk everything protein, it was through the roof. 

We ran an hour and 40 mins away to the drs office. She is ok, but protein very high. He sent her home on fluid restriction (she can only have a liter of fluid a day) and we had to find a labcorp. The bloodwork will tell us more and by Friday I'll know what the plan of attack is. It's possible she'll be admitted into the hospital. Hopefully he'll just start her back on prograf and prednisone and she'll respond. 

As for me. My heart breaks. This is out of my hands. There is nothing I can do to make it better, to ease her fears because I have the same fears. This disease is rare, chronic and non curable. I've handed her over to God to take care of. To take my worries away. I love her and the rest of my babies so much, and if anything happened to any one of them I'd just die. 

We've been through this before, but she understands more now that she's older. The trust in me, her doctor and God is different as well.   I just ask God to protect her, guard her and love her as we travel down this road again. 

I pray for strength for me as well. It's so hard being strong all the time but she depends on me to be. We'll get through. We always do.