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11/25/2011 05:17 PM

mom of 29 yr. old daughter w/gastroparesis

mimom
 
Posts: 3
New Member

My 29 yr. old daughter was diagnosed last March w/severe idiopathic gastroparesis. Has j-tube, g-tube and gastric pacemaker. Pacemaker surgery was 6 months ago. I guess it's not really working. She's still in the hospital more than she's out. Comes home for 3-4 days and then goes back because of nausea, vomiting, dehydration & pain. So frustrating. Has anyone had the pacemaker work for them?
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12/02/2011 11:20 AM
GastroGirl
GastroGirl  
Posts: 411
Member

I'm so sorry she is going through all this! I don't have any experience with the pacemaker; I'm hoping someone who does will see your post.

12/12/2011 06:16 AM
chaffer26
 
Posts: 112
Member

I've been MIA from here for quite a while, but I'll see if I can help.

It took almost 6 months for the settings on my pacer to kick in. I had almost immediate mild nausea relief, but not much beyond that. Some people respond very quickly to very low settings while others take many adjustments (I read of up to a year to get them right) on extremely high settings. Mine are not the lowest, but relatively low. See if her doc will increase them again. I have corresponded with one lady who has hers on the highest settings possible. Of course that means the pacer will only last between 1 and 2 years, but she went from being tube dependant to being able to eat again. If I'm not mistaken, she still has the tube for flares, but more or less eats regular food within the diet suggestions.


12/12/2011 06:30 AM
mimom
 
Posts: 3
New Member

Thank you so much for your reply. It's been 6 months for my daughter and the pacemaker setting has been increased several times so far but with no improvement. I can't stand the thought of here going through this for another 6 months. Once the pacemaker does work, will she be able to eat as she did before or will she have to watch everything she eats? How about the fatigue. Does anything help that?

12/12/2011 08:02 AM
chaffer26
 
Posts: 112
Member

That all depends on how her body responds. I know that for me, before the pacer, the better my emptying times were the less I was able to tolerate solid foods. Everyone is different. I am now able to eat mostly regular foods as long as I keep in mind the diet restrictions. I can even do a burger, steak or pizza occaionally. I still deal with the fatigue, but it's much better than before since I can get enough calories in now.

06/09/2012 05:00 AM
DrPittsburgh
DrPittsburgh  
Posts: 70
Member

Please message me privately. I can't stand the thought of a 29 yr old female...such a prime and wonderful age...suffering with a pacemaker that doesn't work. There are many physicians, myself included, who are of the school of thought that pacemakers don't work well. Sometimes they do, and patients get lucky, but it an exception rather than a rule. There is nothing wrong with trying it...I'm not saying that...but there are new answers.
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