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Tuesday, June 9, 2020

Gastroparesis: Tiffany Dunn's Story

Lily Marie C.

Lily was the only one in her middle school to be published with a haiku she wrote about her Aunt and her Aunt's struggle with Gastroparesis. Her Aunt's name is Tiffany and she helps with Gastroparesis Groups and outreach.  She has been struggling with Gastroparesis since she was fifteen.  This is her story.

"When I was seventeen years old I started vomiting nonstop. The doctors told me I had an eating disorder (Note: article on Eating Disorder vs Gastroparesis). I was going through a relationship with Mark and the doctors thought my problems were endometorosis.  When I became pregnant at twenty-one, all of my symptoms stopped.  I was pregnant with Jadon and my symptoms stopped and they thought I was cured of an eating disorder. At twenty-two I had a hysterectomy, after I gave birth to a miracle child.  They thought all of my symptoms would stop after the hysterectomy.  
At twenty-three I was diagnosed with Gastroparesis. 

I have had two bypass surgeries.  The gastric sleeve, was the first surgery, and it did not help so they did an R and Y surgery (Note: article on  Gastric Bypass and Sleeve).  Neither operation bypassed the pyloris nerve (Note: article on Pyloric Stent and Pyloroplasty) and the vagus nerve (Note: article on Vagus Nerve) like it was supposed to. 
In 2016, my mother thought she was going to bury me in my wedding dress. 

In 2017, I found the number one Gastroparesis doctor on the East coast when I moved to Virgina. His name is Dr. Matthew Bregnman (Note: article on Advanced Surgical Partners of Virginia).  He removed my stomach totally in 2018.  I had a one hundred percent gastrectomy (Note: article on Gastrectomy). 

In 2019, he took away my PICC line because it caused blood clots and MRSA.  I have had about nineteen surgeries between 2018 and 2019 when he removed my stomach.  From there, I have had two J tubes to supplement nutrition (Note: article on Feeding Tubes).  
He refuses to put another PICC line in because of the history I have with blood clots. He has repaired seven hernias since I moved to Virginia in 2017. 

He has just repaired three hernias and we are not sure when I am getting a feeding tube back in. He refuses to do it until I am one hundred percent healed.  

My whole family has been one hundred percent supportive whether they believe in Gastroparesis or not (Note: article on Information to Help Family & Friends Understand Gastroparesis). My mother has dropped her entire career to come and be with me. My husband is super supportive and my son has been taking care since he was two years old. 

I cannot say enough about my child. If he thinks I'm going to pass out, he'll sit me down.  The guilt that I feel that I've taken away his childhood surpasses the amount of time I've been sick. This child has done everything for me and he will be fifteen soon. He's done everything for me from laundry, to dishes, to taking care of me. The number one thing I feel is guilt because I feel like he missed out on his childhood.  If I died tomorrow, I would feel so guilty for everything Jadon has done for me. 

My nieces Lily and Jasmine 'squish' my medicine and my forumla. They have been my nurses.  I cannot praise them enough for helping me.

On June 4, 2020, four hernias due to vomiting have been repaired.  They did not keep me and sent me home same day.  Normally, doctors keep you in the hospital for at least twenty-four to fourty-eight hours for pain management and to check for infection.  Talk to a patient advocate at the hospital if they try to send you home early. You can call patient services.  Each hospital has a patient advocate (Note: article on Patient Rights & Advocacy).  

Dianne, my mother, was my advocate. She fought for me in the hospital and is taking care of me at home. 

Never ever do the gastric bypass because it only makes things worse, in my experience."

"My name is Tiffany Lynn. I live in VA with my husband, my 13yr old son, and my 2 pups. I am lucky and blessed enough to have the most fantastic support helping me fight. I was officially diagnosed with GP 15 years ago. I had, had signs & symptom start when I was 17 years old but no one believed me. So I have been fighting in total for 20yrs now. I have had several procedures done, botox, pills am/pm, feedings tubes etc. The last 4 years have been the worst and my health is declining. I love being an admin in Emily's groups, and my own gp page to update my family all at once with myself and whatever info comes out. Since I am medically out of options and treatments, my goal is help other patients thrive, get the knowledge and treatment, that I didn't have way back when. I am here as sounding board, a supporter, an advocate, and most importantly a friend. Pm me, if you need to cry, vent, ask questions, or if you want/need to talk about anything other than gp to just get mind off of it. Take care of you first xoxox"

Here are some more links that might help:

I want to say thank you to Tiffany for sharing her story. I think it was very brave and courageous. I want to give a big shout out to her niece who was the only one selected in her middle school to be published for the haiku she wrote about her aunt's Gastroparesis.  That deserves praise and recognition and she is VERY brave and talented for doing that.  I wanted to share Tiffany's story to give hope to those whose families may not believe that you are sick yet.  There is support here for you if you need it (see links above).  NO ONE is in this fight alone. You have people who support you and who will be here for you.  I just wanted to let you know that there is hope and don't give up
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1 comment:

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