Susan’s Story

“The help I got with my fatigue and gastroparesis was worth driving 26 hours to get! That alone was worth the price of admission.”

Susan came to POTS Care having suffered 30 years of illness including a diagnosis of Ehlers-Danlos syndrome, POTS, MCAS (mast cell activation syndrome), frozen shoulder, thyroiditis, gastroparesis with constipation (alternating with diarrhea), Sphincter of Oddi dysfunction, suspected Hashimoto’s and chronic Lyme disease, depression and extreme and chronic fatigue.

We asked her to share some of her thoughts from her visit at POTS Care. Susan is a real patient, who asked that we protect her identity.

Office manager: How did you find out about POTS Care, Susan?

Susan: Prayer! I think it was an answer to prayer! I found Dr. Driscoll on the internet, googling “gastroparesis”. Up came this lovely blonde lady. I started listening to her videos and thought she was on to something. And so I told my husband and he watched the videos and then he said, “I’m game driving you if you want to go!”

Office manager:Were we able to help you?

Susan: Oh, yes! The help I got with my fatigue and gastroparesis was worth driving 26 hours to get! That alone was worth the price of admission. I was amazed — I did not expect to get that response – immediate relief. At first I got a little bit more energy. By the third day my gastrointestinal tract was working. You have to realize I hadn’t had that work ever, even as a child. The doctors looked at my “23andMe” genetic profile and said I was one of the few people who have a glitch causing some of my problems. It’s not something that has come on, it’s something I was born with. Of course my symptoms have evolved and gotten worse, but I was lacking something from the beginning for genetic reasons, which they rarely see.

Office manager: Do you think that your treatment plan was individualized, specifically for you?

Susan: I actually asked that question! There was another woman here and we talked to each other while we were here. It’s not a cookie cutter approach here, thank heavens.

Office manager: Did you feel that the doctors understood how you felt and believed what you were describing.

Susan: Oh…I wouldn’t still be here on the fourth day if I didn’t feel believed. When doctors don’t believe me, I leave pretty soon. I think the most important thing is that Dr. Driscoll is a patient and a researcher at the same time. How many times do you see that? For her to be a patient and have children that are patients, that is a driving force. It’s going to help so many people that she has discovered some of these things that seem so obvious, looking back now. If they’re so obvious, though, why didn’t someone else figure these things out? So thank heavens she did and she kept thinking. And she didn’t give up…I mean she had her children to work for, if not for herself. And that’s going to help all of us.

Office manager: Where are you coming from, Susan?

Susan: We drove from northern California, all the way here to Dallas. At first I thought I could fly and then I thought, I can’t fly. So we did it as fast as we could — we just had to get here fast. I think I was lucky to get in. The way I looked at it was that us patients have already had to push through so much, what’s one more push? Well it may kill you, but you can die trying and it was worth it!

Office manager: Thank you for sharing your thoughts. We’re here for you, Susan, and we are so happy that you’re going to get better.