Tomswife
Senior member
- Joined
- Aug 22, 2022
- Messages
- 689
- Reason
- Lost a loved one
- Diagnosis
- 08/2022
- Country
- US
- State
- NJ
- City
- Livingston
I will write in abbreviated style. The purpose of the post is to understand if my expectations for care are unrealistic.
- Tom diagnosed with bulbar onset ALS 8/16/22 with symptoms since March 2022. Big Hospital in NYC with ALS Clinic....BigH.
- Meet with the ALS Team Sept 8, 2022. Lead physician, Nurse Practitioner(pushed for Peg tube), Pulmonologist, Nutritionist (asked questions, but gave no advice), Liaison with ALSA (not there), Physical Therapist (very knowledgeable but did not help us).
- Physician will give 2 RX (we already have Riluzole). 2 RX never arrive at CVS. I follow up. Two weeks later physician emails with apology and 2 rx are submitted to CVS.
- I call ALSA to connect. The rep very nicely informs me that the connection needs to come from BIGH . ALSA calls BIGH and then calls me back and is very helpful.
- I send message on portal to request EMG #2 so we have the results b4 next Physcian meeting. No response. I then get a message from BIGH weeks later thanking me for scheduling the EMG on x date.
- I send message on portal to physician and Nurse that Tom is ready for PEG tube. No response.
- I follow up after 5 days and Physician gives me Nurse email and tells me to email her. I email Nurse and she says "the team" has been trying to reach me all day and that I need to make sure I gave them the correct #, or answer my phone. And...don't email her, only use the portal.
- I explain to nurse why I emailed. And that no one on "the team" had called my cell phone.
- We get pre-op meeting for tube scheduled for 10/24. I get a call a few hours later same day from BIGH and I am informed that Nurse has covid-19 and can meet with us 10/30. I ask if someone else can do the pre-op and I am told, only the Nurse can and that is the only Nurse for the ALS clinic.
- We planned a short vacation for Tom (that I am not cancelling since he can still walk very slowly) and so now pre-op is 11/14. I do not have a date for tube procedure, and I have no hope that it will be scheduled without my prodding.