I have been researching my health condition on the internet. The doctors here in Salt Lake do not understand very much about gastro paresis, they say it is very rare in kids and usually is quite short in duration. NOT mine.....I have been researching Dr. Carlo DiLorenzo in Ohio and he is world renowned for his work in this area. People travel from all over the world and yes, even from Draper, Utah to seek his expertise. He performs a procedure called a GI Pacemaker. It is apparently similar to the heart pacemaker but is placed on the side of my stomach. At Primary Children's Hospital, the doctors are unfamiliar with this procedure and it is still not FDA approved for use on children but we are hopeful to get a pacemaker anyway!
Two teenage girls have YouTube videos of their adventure with Gastro Paresis and their excitement of finally getting help with a GI Pacemaker. This gives me hope and makes me smile......which I don't do enough of lately. They have experiences that are like mine and so I have followed their stories and today, I contacted a girl named Megan by facebook.
She called my phone today and we had a great talk!!! I hope that I can help other people when I am better. Because we are both girls and teenagers, we were both often thought to possibly be anorexic or bulimic or just in need of attention.......NOT even close!!!!! I cry for food all of the time and when my friends and family are eating, I am always sad and VERY frustrated. It is so helpful to talk to someone who understands all of the pains and struggles that are associated with this little known condition. She also has had a great amount of pain in her stomach, which very few believe because they haven't experienced it and think that if your stomach doesn't work you shouldn't be feeling anything......not so!
My mom is going to talk with her mom today and see what they had to do to get the pacemaker. We will begin our journey to Ohio on Tuesday........just 2 days and we can get some of our questions answered!!!
I'll let you know how things are going........keep me in your prayers!!! XOXOX
G Bug!! I love you soooo sooo much!! You are my hero. I could never do what you do! You are amazing! I'm coming to see you today!! Love you bunches!! Mace :)
ReplyDeleteGentrie! It's Ann Marie. We miss you so much and are thrilled that you get to go to Ohio! You're in our prayers and we can't wait until you are feeling better! Sawyer says, " I love you"! Love the blog too! Good Luck with the trip!
ReplyDeleteGentrie,
ReplyDeleteI am so excited for you to go to Ohio in a few days! YES!
You are such an example to our family! You have been a very strong person through this trial! Keep up the good work! You are going to get better!!!
Love Ya!
Aunt Tara
Hi Gentrie,
ReplyDeleteMy name is Rebecca and I also have gastroparesis. I am so sorry to hear that you are going through this. I'm not as young as you, I was 22 when I got the news that I have this nasty PAINFULL disease and I'm now 31. I also have a GJ Tube. N deal with the pain all day long. I also had people say the same thing to me, your stomach doesn't work how can you have pain?! I also had people say and they still do that I'm too young to be dealing with all this( I have a couple of other health problems). And I tell them that there is many other people who are much younger then me and they just can't beleive it. It's a disease that is common but just isn't as common as others. My hope and prayer for you is that you get the pace maker. I was also turned down by my insurance company. Because of my diabetes. My docs and I have been fighting to get it for many years. I hope that your battle is not as long. You sound like a girl that is strong, funny and a fighter! Keep up the laughter it really is the best medicine. I use it all the time. If you ever need someone to talk to or have any questions please email me or you can find me on facebook. You and your family will remain in my thoughts and prayers. Stay strong! Rebecca Martin
Hello how are you? I am not sure how old a lot of you are but Iam 29 years old and have no quality of life anymore!!! I cant eat anymore , I cant drink anymore! All I ever do is spend my time throwing up and feeling nausiated!!! They have ran test after test on me and things are coming back normal. The only test that came back positive was the Gastric emptying test ( that test was so hard cause they made me eat) !!! Lots of drs say its in my head but i promise u its NOT!!!! I got a referal to the mayo clinic ! They are sure its
ReplyDeletegastroparesis. We are going to be talking to drs about getting the pacemaker put in...but then they also discussed the jtube ( if i get the jtube will that allow me to never eat again)??? Does anyone no??? I have never written a blong like this but I must say i am very very desperate!!!!
Thank You
Tara