Rachel Nielsen: Admitted For Serious Infection and Prepping for Surgery

March 11, 2017 10:17 pm 2 Comments 4

Kate Nielsen received a call this morning at 1:00a that her daughter, Rachel, does in fact have a bacteria infection in her central line. She will have it surgically removed and a new one put in once the infection has been cleared, which could take up to four weeks. She will potentially have to have all tubes and stimulators taken out due to the seriousness of this infection. She cannot go home without being infection free for 48-72 hours. They are also now worried about the stress on her heart. They will be giving her an ecogram before she goes into surgery.

We would love to have you share and ask for prayers for Rachel. She is one incredible fighter and this just might be one of the biggest fight for her life as of yet!  We all love you, Rachel. We are praying hard for you and we are sending you strength, love, hugs and more prayers. We are all so blessed to have you in our lives. You have truly changed my life forever and you continue to inspire me to work as hard as I can for the entire rare and undiagnosed community. I love you like a daughter.

PS:  Kate – Stay calm and strong. You got this. You are a rockstar. Love you!

Much love,

Gina

We have shared her journey below along with an article that came out this week in their local newspaper.

Local teen fighting a rare disease Makes-A-Wish Jessica Tanner, Leader Editor

Jessica Tanner, Leader Editor

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS

All photos by Season Atwater of Aware of Angels

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS

Rachel, born in 1999. The youngest of four children.  She has two brothers, a sister, and a sister-in-law. Her diagnoses are: EOE, EC, Gastroparesis, Delayed Motility, Orthostatic Intolerance, Neurogenic Bladder, Dysautonomia.

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS

Symptoms: left sided abdominal pain wrapping around her back, nausea, vomiting, fainting, heat intolerance, cold intolerance, abdominal migraine, head migraine, bladder emptying delay, constipation, unable to eat, stopping of menstruation cycle, eyes dilate differently.

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS

Tests completed: 1 hour gastric emptying, EGD, colonoscopy, tilt table, CMG – bladder, MRI enteroscopy, abdominal CT

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS

Tests to complete: genetics, 4 hour gastric emptying, motility manometry, autonomic testing

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS

She needs IVIG therapy, a j tube placed.

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS
Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS

Worried if she will need to go back on IV feeds.  Worried if she can get enough nutrition and hydration from a J tube.  Worried about finishing high school and going to college.  She was a straight A student until this all started happening the summer of 2014. Hope she can give birth to her own children. Biggest struggle is watching her in pain, endless doctor/hospital visits, not able to do the things she loves- musicals, plays, tumbling, running, basketball, piano, violin.

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS

Issues with medical field: doctors stopping all testing and giving the diagnosis of somatic system disorder.  She doesn’t fit into their neat little box of symptoms for diseases they know (chron’s, mast cells, mitochondrial, autonomic neuropathy) so no testing gets completed for these diseases even though she has 9 out of 10 symptoms.  Not listening to parents and the patient about what has worked and what hasn’t worked in the past so far as her treatment has gone.  Having their minds set on what they want to do and not take/seek help from other doctors.

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS

Insurance issues: not approving testing to be done out of state.

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS

Rachel is a positive upbeat young lady.  She is concerned about others and their feelings.  She puts others needs before her own.  She loves to sing and perform on the stage. She did competitive gymnastics for 4 years and then competitive tumbling for 2 years.  Loves to play the piano and violin, basketball and running.  She was training for a 10k when she started getting sick.

People can reach Kate (mom) at knielsen1178@gmail.com

Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS
Rachel-EOSINOPHILIC ESAPHAGITUS/COLITIS