I'm about ready to cry

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Regular Member

Date Joined Jan 2013
Total Posts : 186
   Posted 7/3/2013 10:32 PM (GMT -6)   
I have been dealing with this reflux for way too long and have seen way too many doctors and had too little success. I've already seen more than 50 doctors. You can read my other posts if you don't believe me. I started seeing a new GI in January, who is the director of the John's Hopkins GI department. At the only appointment I've had with her, she told me to get a barium swallow and manometry, and to redo my pH probe and endoscopy since it had been two years since I last had them. Instead of being efficient, she scheduled my barium swallow in February and my pH probe and endoscopy in March. The barium test came back saying I had a hiatal hernia.

I had the endoscopy and pH probe done in March, but instead of getting the results the next week, I had to wait 5 weeks because the entire department had to look at my probe results. Throughout the 24 hours, it showed 156 incidents of reflux during the day and 0 at night, which they still can't explain. My endoscopy showed no complications but major damage.

I didn't get those results until April. Only after waiting all that time did my doctor schedule my manometry. That got scheduled for the end of May, and the results once again took longer than expected. I waited two weeks before calling her, and she said she hadn't received them yet. Four weeks after the test, last week, I got an email from her saying that my swallowing is perfectly normal and that she has approved me to meet with a surgeon. After four years of pushing for it, I finally got a doctor to admit I need surgery!

I called the surgeons office to schedule an appointment to meet her, and they said they could do as early as July 1st, 6 days after I was calling. I was used to having to wait months, so 6 days sounded pretty nice. I got a call back two days later saying that the surgeon is no longer available that day and that my appointment has been rescheduled to the 15th.

Unfortunately, July 1st is also the day that the entire John's Hopkins hospital is transferring to a new paperless system, and the entire hospital is so paranoid about it that they are only seeing 15 patients a day instead of the normal 35. Before 24 hours had passed, I got another call on my answering machine saying that my appointment had been moved to the following week, when I am out of town.

After calling them over and over again, I finally heard back from someone yesterday saying that the earliest date they have is now in mid August. I can't push back to August because I need to have the surgery in August so that I can start college on time in the Fall.

I really don't know what to do, and I just feel like crashing. What can I say to prove how important having this surgery is to me in August without getting angry and making things worse?
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

Regular Member

Date Joined Apr 2013
Total Posts : 87
   Posted 7/4/2013 11:53 AM (GMT -6)   
Don't - Hang in there, it will all work out.  I also go to JHU for my GI issues and while there are always issues when it comes to any hospital, you can be assured that the doctors in the consortium are looking out for you. At one point I hadn't heard from anyone for almost 4 months at which point I called and asked to have NP please return my call.  She hadn't received any of my previous messages and the "office" personnell hadn't updated my cell number so she was calling on a number I no longer had.  Anyway, once we reconnected I was scheduled for my procedure and except for an insurance issue everything went along smoothly.  Good Luck and don't fret. 

Veteran Member

Date Joined May 2012
Total Posts : 541
   Posted 7/4/2013 4:07 PM (GMT -6)   
I had surgery during college... It was a little rough going back after a week off and I didn't feel like studying much. It wasn't to much effort to get back into the swing of things. They'll tell you to wait a week before going to classes though. It's very doable.

Veteran Member

Date Joined May 2012
Total Posts : 541
   Posted 7/4/2013 4:09 PM (GMT -6)   
Doctors, schedulers and surgeons don't under stand logic or needs... It's frustrating. Keep asking around, maybe someone in the department can move your appointment up.

New Member

Date Joined May 2013
Total Posts : 9
   Posted 7/4/2013 8:47 PM (GMT -6)   
Keep trying! But, by the time everything is scheduled, you could have the surgery in December, between semesters.

BTW... My ph test was very similar. 138 refluxes during the day (on meds) and 1 at night. Made sense to me. The more I move around, the worse it is. Docs didn't indicate it was out of the ordinary. I'm having surgery July 18.

Good luck!

Veteran Member

Date Joined May 2012
Total Posts : 541
   Posted 7/4/2013 9:58 PM (GMT -6)   
Don't let your doctors put you down! Someday in the future you'll be waking up in the morning smiling because you feel great!
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