Our first update

     

March 25, 2017

Friends and Family –

Some of you have lots of details, others sketchy details, and some we have not had a chance to talk to you yet. Just wanted to update everyone on Anna and her latest turn of events.    

A bit of the backstory…. When Anna was 12 years old and in 6^th grade she came down with what we thought was a typical but bad flu bug. Unfortunately this became a recurrent condition, with flu-like symptoms occurring every few weeks. Routine lab work in early spring revealed abnormal kidney functioning.

A kidney biopsy in May pointed towards a diagnosis of C3 glomerulonephritis.

You can Google it but there is not much out there – it is considered a relatively newly discovered and rare condition. Unfortunately, during the biopsy 2 arteries were inadvertently “nicked’ and Anna required subsequent hospitalizations, procedures, and a blood transfusion. Thus began her journey as a patient who did not follow the typical road. Around this time, doctors simultaneously diagnosed the recurrent flu like symptoms as Periodic Fever Syndrome (PFAPA).

Things remained somewhat stable throughout 7^th grade until January when Anna once again began having recurrent “flu like” symptoms and worsening of kidney function. Multiple hospitalizations and medication changes occurred and Anna’s diagnosis of PFAPA was removed. Doctors at that point began to consider her as having inflammatory and autoimmune components but no exact diagnosis could be made.

For the last three years the search for a diagnosis has taken us from Mayo Clinic in Minnesota- who sent us to The National Institute for Health in Bethesda -who sent us to the National Jewish Health in Denver and her genetic findings to Baylor University in Texas. At this point it would appear that Anna’s inflammatory/autoimmune disease is still a mystery—unfortunately the doctors have not found a known or previously diagnosed condition similar to hers. The importance of searching for a diagnosis and proper treatment has ultimately been due to the theory that as her body continues to have inflammation and attack itself; the kidneys could continue to worsen.

Although Anna has been living a “normal” teenage life, her health has become more challenging over the last few years.

On Friday, February 24^th we ran some routine labs to assess further medication adjustments. On the morning of February 25^th we received a call to be admitted immediately to Lurie’s Children’s Hospital as her kidney function had become significantly more dangerous. Despite aggressive treatment as an inpatient for nearly 3 weeks, Anna’s kidneys continued to worsen and she ultimately was considered to be in kidney failure.

Last Friday Anna began on dialysis. At this point her “systemic” disease is too active to begin the transplant process thus putting those discussions on hold for the time being.

Anna was discharged Thursday from inpatient hospitalization after a total of 4 weeks. Yesterday she began outpatient dialysis. That is all we know right now and at this point are not really planning further then a day and/or week at a time.

Anna is an incredibly strong and amazing patient who continues to deal with most things with a maturity, sense of humor, and lack of drama that is truly admirable.

Thank you to EVERYONE who has reached out, sent something to brighten Anna’s room, offered to help, and sent their love. And a huge shout out to Uncle Dave who flew in from Portland to help keep Sloane’s life on a regular routine while there was so much unknown in ours these last few weeks. Please feel free to share Anna’s story with people we may have inadvertently missed on this email chain.

Many thanks and love– Beth, Doug, Anna & Sloane