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We were in class one day and we read your story. We really whated to tell u to hang in their. We admire your strength! Love, Jenna and Sophie
Your situation that you went through is almost exactly like what is happening to my girlfriend right now. She is 16 and for almost 6 months now she has been struggling with the same exact illness(Gastroparesis) and went through the similar process of doctors constantly testing her and coming up with nothing till they were finally able to diagnose her after months of testing. Unfortunately none of the treatments the doctors gave her have been helping and soon surgery may be her only option. like you the disease has taken over her life and made it impossible for her to eat and live a normal life, going to school and doing theater which is what she loves to do. I know she can make it through this struggle and start living a normal life again but she seems to be without hope. I told her of your story and i hope your fight with this awful ordeal will inspire her to realize that she can make it through this and live a normal life again too.
My 10 year old daughter had a gastric stimulator placed in November 2010 after a bout qith H pylori made her GP unbearable. She had such bad reactions from the drugs that were used to treat the parasite (bacteria) that she was even having halucinations!
Although she could not eat and when she did it just spoiled and came back up she still put on weight. Each afternoon she had pain that was like an apendicitis attack for 5-6 hours. Several visits to the ER every week left us just filled with aggravation and endless refills of medications.
She was diagnosed with insulin resistance and hypothyroid and it seemed that all of the drugs and eatting patterns were making that crazy! She continued to gain weight as all she seemed to be able to keep down was a coke or sugar.
The Pacer immediately helped! The pain immediately went away and her nausea subsided!
Why is the isurance making so many people suffer for soooooo long?
She has had some problems when the pacer has been offset by things we dont know about and the frequency had to be changed....and now we are battling the weight gain and mental and emotional problems that this disease put on a child.
She just came home from Camp Shane after a 3 week stay were she dropped 18 pounds and says she feels great and can actually see her pacer in her tummy. But even the first few days there with the food changes, altitude and nerves had to go to hospital for vomiting.
This disease controls your life if you do not fully control every part of your life YOURSELF! Its so hard but I have realized that schedule is the key, taking meds, sleep and stress on a schedule are a must....her body has to be on a pattern that stays the same.
Hey gentrie, my name is Haley! I, too, have gastroparesis, and my stomach is paralyzed as well. Im opposite as you though, if I eat something it will not digest for 9 to 10 hours. Are 3 bites I am very full. I have had it for 6 months and was recently put on a NJ tube. If I eat sometimes, and than things don't digest for 2 weeks, so they have to go in and remove it. Obviously there isnt much awareness for this problem, but I would love to come up with stuff with you! Always, I am glad you have found success and are doing alot better! Keep going strong
Hi Gentrie. It's great to see someone share their story about gastroparesis, and try to raise awareness and hope for others with this difficult and often life-altering condition. I have gastroparesis as well, and was diagnosed in 2001. I was older than you, 22 years old at the time, but I had many of the same experiences with symptoms, ER and hospital admissions, issues with unknowledgeable and/or unsympathetic doctors, denials from my insurance company to cover the Enterra Gastric Stimulator, and financial hardship. Like you, I eventually got the Enterra Gastric Stimulator/pacemaker (Dec. 2002), which made a tremendous difference in reducing my nausea and vomiting. I still have GP episodes from time to time, as you know there is no cure currently, but it's not as frequent as before.
I commend you on all you've done to help and educate others about gastroparesis. I used to have a support group for others with Gastroparesis a few years ago, but unfortunately had to discontinue it due to financial reasons. I also did a few public outreach activities to raise awareness and was also surprised that so few people, including those in the medical field, knew anything about it. This definitely needs to change so that more people with this condition can be helped. I'm pleased with all you have done to help in this effort. I hope you continue with it. I know myself and others with gastroparesis are glad to have someone like you as an ally in this difficult battle. Take Care.
I have been following your story about the things you have had to do to get your gastroparesis under control. I wanted to let you know that I, too, have gastroparesis. It started with my colon that stopped working. They did all sorts of tests and decided to remove it. (Like you, I was down to about 85 pounds). But that surgery didn't take care of my eating problem. So, in 2003 I was diagnosed with gastroparesis by a doctor here in Utah. His name is William Hutson and he worked for Mountain West Gastroenterology. He is no longer available however, He went to the University of Utah Hospital to become the director over their liver and kidney transplant department. So I found a doctor at the University of Utah who was installing Medtronic gastric stimulators. I have had it now since October of 2003. The doctor who takes care of me and my pacemaker is Dr. John Fang. However, I now need the battery changed out and he won't do it because he didn't see very good results with them. But he still has access to the equipment to change the amperage and voltage on it. I am headed to a Dr. Jeff Cross at the St Anthony's Hospital in Denver, Colorado to have it replaced. I'm leaving tomorrow. I didn't get the results you got from the stimulator, but it did help my nausea. So I am on a feeding tube 12 hours per day.
I just wanted to let you know (and I didn't know) that there are more people with this disease.
I wish you well as you deal with your health problems and hope I have given you some information about doctors that do handle this type of device. I am sorry you had to go through all you did before they got yours right. Your article in the Deseret News was helpful to me.
Please feel free to contact me if there is something I could do to give you more info or anything about treatment. (By the way, when I had mine put in it was $26,000 and my insurance paid it in full.
Denece Checketts
Dear Gentrie,
Earlier today i was looking through my newspaper that we recieve every week and i noticed a story about a girl about my age that had gone through some really hard times and i read the story about 4 times.
I have recently gone through some very hard times with family and friends and felt i couldn't go any further in life until i read you story and read all about your courage and faith that everything would work out. i am so inspired by your story and i honestly feel i can go on again. Thank you so much for your hope and courage that i read about and how much it helped me. I am so very grateful. Thanks :)
hope you are doing well and would love to hear an update. Your story is so inspiring and your attitude is just amazing. My d was recently at NCH Ohio as well and was dx with gastroparesis and other gastro functional issues. She is scheduled to go back again soon. Just wanted to connect and say that your story is incredible and so encouraging to those of us starting on our own similar journeys. thank you for sharing!
I am so sorry to hear about your latest hospital stay. What happened that caused you to collapse and lose your memory?
Miss Gentrie, My 14 year old daughter has been home sick with GP for 3 years now. We are scheduled to put in a central line in a week or so. I was wondering how you were doing, and if you have any idea what the maintenance of the pacemaker entails.
Hope you are feeling a billion times better these days. Keep us posted.
Blessings, Kathryns Mom
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