Make a Binder!

hey everyone,

i read a tip online a few weeks back to make a 'binder' of your information.  thankfully i did this, as it was a HUGE help when we had to go to the ER saturday because of a bad seizure.  it was kinda funny, how excited the emt's and hospital staff were because of this binder :)

what i included was (and it's just a few sheets)

- my husband's medications (name, what it's for, dose and time he takes)

- all his doctors' info, names, addresses, hosp affiliations, phone

- any allergy info

- medical history 

- insurance info (i photocopied all his cards onto one sheet)

- advance directives, etc (if you have them)

- i also keep copies of his MRIs on CD

hmm i think that's it...  oh, i also wrote up a page of his favorites and his major dislikes - God forbid something were to happen to me, at least he could be well taken care of...

i hope this helps!

sarah

hope all is better now with your husband it sounds like you are doing a really good job taking care of him

good goin,sarah! thanx for the info.

my wife also keeps a binder, and ALL my providers LOVE her for it. even to the point of chuckling a bit b/c my wife is so literal with proposed dates and such.

And, I have to say that the binder has proven useful despite my hospital's excellent electronic/online records system. nearly all my providers (family, derma, radiation,,NO,epileptologist, etc) are in the same system

I had a small notebook still have it we used it to write questions & answers for dr. visits

thanks guys!  yes, what a help it was!  also, during a rough time it's hard to recall certain things as well as locate information - having everything together was such a help.

my husband is ok...  not well yet.  he's been having more and more seizures (mini ones) and so the NO added Depakote (he was taking Keppra).  well, after adding Depakote the NO decreased the Keppra somewhat annnd...  we went to the ER.  my husband had a bad seizure.  he hasnt been himself since and now his eyes are only half  open and quite glassy and wet.  it's sad, really...  he has an appt tomorrow - hopefully the doc can fix this.  on the phone they said to keep the meds at the level they used to be (the ER docs said that and we did that) but...  he's not well yet.  poor guy cant get a break...

sarah, do ya'll have an epileptologist on ur team? I was having many seizures, so the NO &nuero brought one in. she is now the most impt team member, and is always available. she also has a standing order for no other nueros to change my seizure meds. that kinda pizzed a neuro attending during a recent hosp stay (for a bad seizure)

ahhhhh...  im embarrassed to say, i didnt even know such a person existed!  i will definitely be bringing this up at the appointment tomorrow - thanks!!

my husband was doing sooo well - tumors were shrinking, he was doing well overall...  just the seizures are making him go downhill quickly.  thanks again for the help!

hah, i hadnt heard of such a title either, but one can make life SO much better for ya'll.  good luck and dont be intimidated by the NO;s who want to manage seizures. insist on an eppie(who is a nuero that only specializes in seizures n related things)

I'm going to stress the Epileptologist as well Sarah.  They were miracle workers for my husband over the summer.  Your hubby's tumor is Right temporal lobe, yes?  Mine was left.  Seizure-rific he was!  Stumped the epilepsy crew with being in status epilepticus for over 10 days...but they were only simple focal seizures!  I know seizures.

Binders are great!  I wasn't that organized, but all that info was in my purse.  And I had the "emergency" envelope to grab and go if need be.

On Feb 06, 2013 12:52 AM karynk wrote:

I'm going to stress the Epileptologist as well Sarah.  They were miracle workers for my husband over the summer.  Your hubby's tumor is Right temporal lobe, yes?  Mine was left.  Seizure-rific he was!  Stumped the epilepsy crew with being in status epilepticus for over 10 days...but they were only simple focal seizures!  I know seizures.

Binders are great!  I wasn't that organized, but all that info was in my purse.  And I had the "emergency" envelope to grab and go if need be.

thanks!  amazingly, the NO brought up the epilepsy doc today.  the soonest we can get an appt is friday - i hate having to wait that long...  the NO said it's fine.  meanwhile my husband is going downhill day by day...  can barely walk now and tips to the side when he sits...  i pray it's just seizures and will pass...  he's 'vibrating' and shaking a lot - he never did that like this before...  sigh - going to be a loooong 3 days...  (meanwhile, i did increase his steroids slightly - in the ER the doc said there was swelling.  if he's somewhat better tomorrow, i know i was right about the steroids...)     i'll keep you posted!  thanks again!