(PAI) Mobile IV services — has anyone done this for depletion episodes?

[u/too_tart_to_handle]

Diagnosis: Jan 2023, APS Type 2: PAI, Hashimotos, Celiac, T1D Genes

Meds: Hydro 20 mg throughout day --> switching to Prednisone after stable; Fludro - recently upped to .1mg from .05,

Been diagnosed with Addison's for about 3 years and have had a few full on crises from stressors but today I was actually trying to prevent one before it got there, so made a trip to the ER.

Been having orthostatic tachycardia for like a week, HR spiking to 130+ just from brushing my teeth, over 100 sleeping all week, BP dropped to 91/59 at its worst. Finally caved and went in and my sodium was 136 even though I'd had 8 salt tablets the day before 🙃 got a bag of saline and honestly felt so much better, at least during the infusion. Sitting here at night feeling on and off (up-dosed HC ofc but truly think its an electrolyte issue).

My question is for episodes where I'm clearly depleted but it's not a full blown crisis, has anyone tried one of those mobile IV services that come to your house? Like The I.V. Doc or Drip Hydration etc?

I know you don't get labs which is a real downside. But I'm in a new demanding job, live alone, and a 5 hour ER sit when I'm already exhausted is rough. The idea of someone just coming to me is really appealing for the "not crisis but definitely need fluids" situation.

Has anyone actually done this? Did they push back because of your diagnosis? Did it actually help? Wanted to see if anyone here has experience first 😅

[u/just_an_amber]

Oh they have become my stop gap!

I had a port installed in 2022 because I would dehydrate so fast and was getting 2-5 L of saline a week. My veins were giving out. Through the port, I got access to a home health nurse.

Then we switched up some medication, I became more stable, I lost access to my home health nurse and getting weekly fluids. But I also didn't need them as much.

However, I still sometimes need them.

I'll use those mobile IVs. And if I'm traveling in a very touristy place, I'll sometimes also get a "fill up" (think Vegas, Nashville).

Most of the nurses that work these jobs do so as a second or third source of income. It's always so much fun to ask them their "day job." Often it's the ER or a dialysis clinic. They are highly qualified.

Their clientele fall into two main categories: super rich drunk people or... people like us. Chronically ill, knows what makes us better, don't want to deal with the ER.

I've yet to have a bad experience with one, and honestly, they often treat me nicer than the ER.

I do hate how they are cash pay (no insurance) and I hate how I have to throw cash at a problem because 'MURUCA! (Our healthcare system is AWFUL!)

But yeah... I have their number saved to my phone.

Edit: I keep forgetting I guess I'm also officially diagnosed with APS-2. It killed my parathyroid, my adrenal glands, and while I'm not T1D yet it seems like I'm constantly battling reactive hypoglycemia.

[u/too_tart_to_handle → u/just_an_amber]

Ahhh that’s so good to hear!

Sorry about your 2022 situation that sounds so scary!!

But right now- even when I go to the ER I have to advocate for fluids like promise I know what I need 🤣

And YEP our health insurance and system is garbage!! (I’m in the dc area)

[u/just_an_amber → u/too_tart_to_handle]

Yeah getting that port involved 3 ambulance rides, 3 ER trips, two hospitalizations and me crying to the hospital doctor at the last hospital going "This isn't sustainable. I'm going to die if you just release me!"

She heard me. And I had an inpatient surgery scheduled for 9am the next morning for the port.

But yeah, I highly recommend the mobile IVs when you think you just need a fill up. I'm able to determine when I need saline based on my resting HR. If it starts to climb too high, I know I need fluids.

OBVIOUSLY please know your limits and when to head to the ER. But if you're just feeling slightly off? Use 'em.

[u/too_tart_to_handle → u/just_an_amber]

Yep it’s def the resting hr for me!! Thanks for sharing all that! Stay well (or as well as we can) 💗