Melissa's GP Story,Part 3

Copy of original post by Melissa of GP Fight - telling the story of continued testing, gastroparesis.

GASTROPARESIS

Melissa

3 min read

Part 2 of Melissa's GP Story left off with the gastroparesis diagnosis and a horrific Dr. Now we'll wrap up in part three of the Gastroparesis Story….

After I decided not to ever see that horrible GI Dr again, I searched for a new GI Dr. I was not about to go through my Primary Care Dr…. since she sent me to this quack, to begin with and said how wonderful that establishment is. It boils down to that the GI doctor’s group is part of the same pocket of money as my Primary Care Dr. So why would they send me someplace else?!

I called the remaining 2 GI Offices we had in my town. The one would never return my call or multiple messages. The other got back to me after 2 months. I waited so long because I needed a Dr that understood gastroparesis. Or why even bother to go!

The shocking call came in and I was told that a GI Dr just moved here (WA State) from NY and her primary focus is on gastroparesis. Say what?! I was so very happy.

I jumped the hoops of getting a referral, then waiting to hear back from the GI specialist. The time went quickly and I got a call to set an appointment. They gave me 3 weeks out as their ‘first available’, but when I found out it was only with her assistant, I said no. I want to see the doctor!

The office then said I would be in for a long wait. I told the receptionist that I have been ill for this long, I can wait. I think it was a 2-month waitlist. But I got to see who I wanted and it paid off big time!

The New Dr.

The office visit was almost 2 hours long. She ordered a ton of lab work and listened to everything I had to say. She told me that the Gastric Emptying Study I had done was not accurate, since it wasn’t for the full 4 hrs and told me she is having a hard time in this town trying to get them to do the correct 4 hr test. At this time, my town will not do the 4 hr test.

Anyway, she felt by what she was reading and what I had told her, that I do not have GERD and the medication is just a waste of money. I could do a test in the office to verify if I have GERD -I declined, for now.

Then, she was telling me about a low-dose antidepressant that she wanted to try. And I said, ‘for the Brain–Gut Theory’ and she smiled (being caught off guard) and said, ‘Yes, I am impressed by how educated you are on your condition’. As I mentioned in Part 2 a book on GP really helped me!

We then chatted about how I have to be, as a lot of Drs don’t seem educated enough to help. I was given her home number and to call her at any time. She left the follow-up with her as, ‘If you feel the need to come in and talk, make an appointment. If not, we can do most of this over the phone’. It was wonderful to have a medical professional treat me in this manner and I felt like I counted!

I had talked with her on the phone several times. Mostly to change meds, as the ones she ordered, I would have reactions to. After the last one we tried didn’t work, she told me how sorry she was but we have run out of options. If I could not maintain nutrition then we may need to consider a feeding tube. However, if anything new hits the market that would help me she would give me a call. Jokingly, she said if I didn’t call her first!

Follow-up

I called for an appointment 3 weeks ago and was told I needed a new referral. Apparently, mine expires after 6 months. I never knew that, or I would have been on top of it. That same day I called my Primary Care Dr to issue the referral. They did, but now it is sitting with my new insurance company (I am covered under my husband, since I lost my job). I have no idea how much longer, they don’t want to talk to me. Only the primary cardholder and with my husband’s work and travel schedule that is near impossible!

Future

Right now I am on no medication and only taking supplements. So far, so good. I also think a big portion of this was that I was able to part ways with my job and leave most of the stress behind!

Don’t get me wrong, I am in pain every day, with high levels of nausea, dizziness, weak, lack of energy, headaches, and so on. But, in general, I feel better not having work-related stress.

With the sale of our home, the net gain is being used to supplement our expenses. And I hope I can find a small part-time job for a little income. If not, I am not sure what we are going to do. We can’t downsize any further. But, I try not to dwell on that, or I can cause myself to go through a flare.

I hope some of my blog topics will help those new to GP find the resource they need to get the proper care and hopefully, they do not have to suffer as long as I did!