Tuesday, April 21, 2015

Navigation of the Health System

Last night in the mail I got a letter for a scheduled appointment that did not show up on the Myhealth.va site.

I've learned quickly that the site is slow to catch up to appointments that are made.  Yesterday's appointment has not shown up yet.  It makes me scratch my head a bit.

Now I see appointments popping up like crazy, yet yesterday's surgery is still not showing.  

So I called my new and best-est VA Hospital friend, Margarette.  She promised to have the Head Nurse from Oncology - Chemo call me.

This is only possible because Rich and I not only gave them a copy of our POA Health Care papers, but also because we made sure that we signed paperwork that allowed the VA to share medical information regarding my husband to me.

If I didn't have this paperwork already in place, I'd be sitting in the dark wondering and hoping that my husband who is not good at details would remember anything verbally told to him. 
I am my husband's medical secretary and health advocate. 

I am still going to trying to juggle part time work scheduling around his appointments,... more than likely I'll be doing weekend hours as long as I can handle it.

My job is trying to be accommodating which I really appreciate.  I've been scheduled for nearly 30 some hours a week for the next couple of weeks.  Since I couldn't give them dates for start of treatment, they scheduled me.

Dr. W. said that Rich could actually drive himself for the first week or so.  
Then the head nurse at the Rad department said they would not let him drive home because he has to take meds for relaxation during treatment.  
Hubby is very claustrophobic and they need him to be absolutely still for Tomo Therapy.

Today I am learning how to be an aggressive Caretaker. I made a spreadsheet of all the Social Workers and Care Coordinators with their phone numbers and their emails.

I've shared it with Rich's daughter ~ which reminds me that we need to add her to the list of people who can get medical information from the VA regarding her father.

She will be an important part of helping her Dad through this treatment, as well as her children who Grandpa Rich adores.



  1. Onward on the runaway train! Praying for you and family daily.

  2. wish I would have thought of a recorder....there are so many things I've forgotten....

    1. I still have my recorder with me and still use it at appts. However I can't bare to listen to the first appt with the oncologists, it brings back so much emotion....