Medical profile card

[Guest guest]

Joanne from ,

It was great to meet you in Pittsburgh and I hope to see you again here in

California. Congratulations on your virtual walk accomplishment too. Thanks

for drafting the medical profile card. When I travel I bring an article on PSC

to show ER doctors because most doctors (unless fresh out of medical school)

don't remember what it is. I also bring recent blood lab reports and a list of

my meds. I am looking forward to your card.

I am going to work on revising a medical profile card today which is

specific to PSC. I'll share the first draft with everyone. Hopefully

a card of this type can simplify carrying your information, plus give

clues as to important immunizations and screening tests for PSC'ers.

[Guest guest]

I saw something earlier in the postings about a medical profile

card - I never got to see the one that Joanne from had at the

conference. On a similar note, I carry with me a medical history

that is like a resume. At the top, I have my diagnoses, next my

current medications with their frequency, amount, and reason for use

and allergies. Then, at the bottom, I have a list of medical events

with their dates and the name of the doctor involved

(hospitalizations, diagnostic procedures, sugeries, etc.).

Every medical person who has seen it has said that they wished that

all of their patients had one - especially the ER docs. I created it

in Word, and it would be wonderful to do as one of their templates,

but I'm not sure how to create a template so that I can send it to

others to use. Anyone who wants to see an example of my " medical

resume " can email me privately. I'll see what I can put together for

you.

Take care,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2006, updates at

www.caringbridge.org/va/deniseb

[Guest guest]

--- In , " Deb in VA "

Anyone anyone who wants to see an example of my " medical

> resume " can email me privately. I'll see what I can put together for

> you.

Deb -

I'll email you the draft of the card I put together. Either one of us

can modify or we could try to put both into a folder that people could

access. I received a couple suggestions and will incorporate them.

Then I just need to figure out how to post into a file so it's simple

to print from!

Take care.

Joanne

(, Ca)

>

[Guest guest]

Deb in VA said:

I have my diagnoses, next my

current medications with their frequency, amount,

and reason for use

and allergies.

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2006,

updates at

www.caringbridge.org/va/deniseb

I also have a page for Suzanne, but it is

not quite as comprehensive. I do not have all of the tests and results. One thing

I do have that has not been mentioned yet is a description of the pill. I guess

for Suzanne I see the list as more for non-medical people since she goes on out

of town retreats and mission trips. So, I have a column on the left that has

her morning, afternoon & night time pills – directly next to that I

have a list of the medications with alternative names and a short description

(i.e., small round yellow pill, or small round yellow flat pill). That way if someone

who doesn’t know the medicine can figure out what she needs. At the

bottom of the page I have her dx, allergies, doctors contact information and

personal contact information (Mom, Dad, step dad, grandparents).

I do need to rethink this chart though

because it is not enough information for doctors. I have been too comfortable

with always going to Children’s Hospital where they have an excellent

record keeping/sharing system. But, since she does go out of town I should

prepare one for those times that does include tests etc.

For the doctors I have been keeping track

of her bowel movements since March. On that I have daily bm, nightly bm, whether

there was blood or not and any medication that is not daily (i.e., she gets

weekly methotrexate injections). Since I did that in Excel I decided to turn it

into a bar graph which ended up being very helpful. I put a line across or goal

for frequency and the doctors easily saw that she has gone about 3.5 weeks

above that goal.

Also, in preparation for the Mayo Clinic I

made a sort of flow chart that had the months/year at the top and medications

at the bottom. Then I would plot when she started and finished a medication

(with arrows in between indicating what she was on). It gave a quick visual

representation of how many times we had tried prednisone and also at any point

in time they could look and see what combination of medications she was on. I

did that also in excel.

I haven’t started a chart for blood

work results, but probably should do that also.

What I am having the most difficulty

keeping track of now is insurance. I have a folder with all correspondence, but

I have not tracked whether an appointment / treatment etc. has been approved or

not. To make it more difficult Suzanne is covered under both my insurance and

her father’s. So usually they have to battle a bit between themselves

before they determine who will pay. Any suggestions on how to keep track of

that would be helpful. So far I haven’t done any additional organization

until I get a bill.

LINDA

(Mom of Suzanne,

16; IBD 1/04; PSC 3/04)