Very severe gastroparesis

I’m 23F, 5’4, 135lbs currently. After a long battle with GI issues for the past 6 years, I got a diagnosis of grade 4 gastroparesis with a GES showing 67% retention after 4 hours.

Here’s the thing, I’ve tried medication and lifestyle/diet changes which have not worked for me (when I say I’ve tried medication, I have tried EVERY anti nausea and pro motility med with zero success and I have tried the GP diet as well with no success). I’m currently only able to intake 500cals a day and last month I weighed 145lbs. I’ve been to the ER multiple times to replenish my potassium and fluids. My GI said there is nothing they can do, so they referred me to a motility specialist and it will take 2-6 weeks to even process the referral, and then once that’s processed it might take months to see her. I’ve also got a referral to see a nutritionist with the same issue.

My question is, why is healthcare reactive rather than proactive, and what do I do? I have the diagnosis, I have lost 10 pounds in 1 month, I can only eat 1 small thing of jello per day and the rest of my calories come from sugary drinks. But because my BMI is normal and I’m not on my death bed yet, there is no urgency from anyone. I don’t want to get to a point where my other organs are damaged due to malnutrition and I already have pre existing heart issues as well. Should I just keep calling GI doctors and seeing if someone can take me seriously?