MupstateNY
Distinguished member
- Joined
- Aug 15, 2022
- Messages
- 424
- Reason
- PALS
- Diagnosis
- 11/2022
- Country
- US
- State
- NY
Tomswife, I have a story for you. I went to clinic last Wed., and yesterday, at my wits' end, I wrote to my primary on her portal and explained that none of the decisions made at clinic had been followed through on with actual orders. I had written to the clinic portal multiple times but was getting no answers at all. So I told my primary that the clinic doctor was unresponsive and asked if she could she please order the things for me. I attached the office note that I had downloaded from the clinic portal, that documented all the decisions. Here's her reply, verbatim:
Hey M,
I can absolutely take over your Protonix; would you want to switch to a packet form of the med instead of the pills? You would mix it with about 4 oz of water; if you want to stick with the pills for now that's fine, just wanted you to know that you have options.
As for the orthotics and PEG tube; those orders have to come from [clinic dr]. I just got off the phone with their office and advised them to respond to you as it is all laid out in [clinic dr's] note. She is what we call "captain of the ship." Due to your ALS diagnosis, she should be the first person to get the things you need in place that revolve around ALS. Now, that responsibility often falls on the PCP, but we are often not aware of all the resources that can help someone out with a very specific disease or know the most efficient way to order things. Hospital beds are something we order often as there are several needs for that type of equipment. I would hope [clinic dr] would be aware of the needs of ALS patients and have it ordered for you in a timely manner. If you don't hear from them today let me know and I'll call again tomorrow.
-[name of my primary]
Lo and behold, I started getting messages via the clinic portal, from the clinic dr's nurse-assistant, who (along with the dr) had been on the dark side of the moon for a week. For each bit of progress he reported, I thanked with !!, then reminded him of the next thing. Here is the list of stuff that wasn't being followed up on:
Also, this afternoon I had 2nd appt with local neurologist, and he said that if I send him the clinic office note and a list of what hasn't been followed up on, via his portal, he will issue whatever orders I need, if he's able to. (He couldn't order the PEG.)
I haven't tested the local neurologist approach yet but I'm hopeful. And wow, my primary really went to bat for me.
I tried several different primaries. Rejected the first two because the follow-through happened at a snail's pace, with constant reminders (portal and phone). I think I hit the jackpot with this one. She happens to be an NP. She used to be an ICU nurse before she went back to school.
I hope you can get something local and effective set up too.
Hey M,
I can absolutely take over your Protonix; would you want to switch to a packet form of the med instead of the pills? You would mix it with about 4 oz of water; if you want to stick with the pills for now that's fine, just wanted you to know that you have options.
As for the orthotics and PEG tube; those orders have to come from [clinic dr]. I just got off the phone with their office and advised them to respond to you as it is all laid out in [clinic dr's] note. She is what we call "captain of the ship." Due to your ALS diagnosis, she should be the first person to get the things you need in place that revolve around ALS. Now, that responsibility often falls on the PCP, but we are often not aware of all the resources that can help someone out with a very specific disease or know the most efficient way to order things. Hospital beds are something we order often as there are several needs for that type of equipment. I would hope [clinic dr] would be aware of the needs of ALS patients and have it ordered for you in a timely manner. If you don't hear from them today let me know and I'll call again tomorrow.
-[name of my primary]
Lo and behold, I started getting messages via the clinic portal, from the clinic dr's nurse-assistant, who (along with the dr) had been on the dark side of the moon for a week. For each bit of progress he reported, I thanked with !!, then reminded him of the next thing. Here is the list of stuff that wasn't being followed up on:
- Relyvrio script to specialty pharmacy
- PEG order (I want this because my first pulmonary fcn test came out 66% and 60% -- scary! Also, I keep getting my Calcium tablets stuck in my throat even when my spouse cuts them up into multiple pieces)
- foot brace order
- hand splint order for sleeping (when I bend my fingers, they get stuck in the bent position)
- suction device
Also, this afternoon I had 2nd appt with local neurologist, and he said that if I send him the clinic office note and a list of what hasn't been followed up on, via his portal, he will issue whatever orders I need, if he's able to. (He couldn't order the PEG.)
I haven't tested the local neurologist approach yet but I'm hopeful. And wow, my primary really went to bat for me.
I tried several different primaries. Rejected the first two because the follow-through happened at a snail's pace, with constant reminders (portal and phone). I think I hit the jackpot with this one. She happens to be an NP. She used to be an ICU nurse before she went back to school.
I hope you can get something local and effective set up too.