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Keeping records

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Looking for ideas or apps that will help me organize dad's medical records.

I write down everything but there is just so much to remember and learn.  Doctors asking me all kinds of questions and trying to figure out what page of notes I put that information on.  Tracking dad's meds so he does not miss anything. 

I am new to cancer and know little about it. So I am trying hard to teach myself everything I am being told, and to have at hand any important information I need for any reason. 

I am looking for suggestions or ideas. 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3524
Joined: May 2012

Psjeep,

Ask for PAPER COPIES of every test result your dad receives.  Then, creat a three-ring binder/notebook.  My wife did this for me.

Any doctor, hospital, or cancer center will do this for you free of charge.  No need to write much of anything down.  If they cannot make you a copy instantly, have them mail you one or have one ready during your next visit.  You can even get copies of his CT and PET scans: the radiologist sends the doc an email of the scan, but also sends a written SUMMATION of the results, explaining what is on the scan.  The oncologist will give you a copy of that written summation as well.

It is easy, and no trouble to you at all.  I have paper copies of every cancer test, lab report, scan, or surgery that I have ever had.  All free: you have already paid thousands for the tests anyway. A 25-cent photocopy is nothng.

My medical center now also has all patient records available for the patient online.  All we have to do is create an account, and then log on and see all of our results.  Probably not all centers have this yet, but I would ALWAYS keep PAPER copies as backup, regardless.

max

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Thank you for your help Max. 

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

Also a suggestion to request a CD of any CT or PET scans.  I am able to obtain the first CD for free and take it with me the same day the test is done.  I have requested duplicate copies when I was seeking other opinions last fall and had to pay $5 for the 2nd copy.  Since CDs make become extinct in the near future, I saved it to my portable hard drive and to a flash drive.

For your dad's medications, if you are familiar with a basic Excel spreadsheet, that would be a great idea so that you can continue to edit and save an updated version as the types of medications or doses change.  If you are not familiar with Excel, I can create a basic layout for you and send to you.

As Max mentioned, the patient portals for doctors, hospitals, radiology centers, blood labs, etc. are very beneficial to access test results and to maintain notes.  However, keeping a hard copy of everything is very important, especially if multiple doctors should have the results.  I have scanned the majority of my medical documents and saved as PDFs to my computer and to a flash drive.

Good luck!

Mary

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Thank you Mary. I appreciate the advice. I think between you and max I have a good idea of what I need to do now. 

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Will the hospital be able to get me all of his medical records or do I need to contact every doctor?

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

I doubt the hospital has access to all of his medical records, but it is worth asking the social worker at the hospital.  If one is not around frequently, check with your dad's nurse for how to contact the social worker.  

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Ok thank you again Mary. I requested his records today. Had Dad sign a release from for me to access his records. We are working on getting me power of attorney and I signed up for the patient portal. 

Good news is he got out of the hospital today and is in a rehab. 

 

Thank you so much on helping me help my Dad!

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

This is ALL great news!  You have lots of support from discussion board participants!

Margiein tucson
Posts: 11
Joined: Jun 2016

I believe it is illegal to force someone to pay for their medical records---

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

I turned in the paperwork to get my Dad's medical records from the hospital.

They want to charge me $86.00.  Reason they said is because I asked for everything and it will be around 250 pages. If it wasn't so many pages it would of been free. REALLY?

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

If you are able to download the reports from the patient portals from the hospital, radiology center, doctors, etc, you can save all to your computer/flash drive and print as needed.  At least moving forward, if you ask for copies of labs, tests, and visit summaries as each take place, there should be no charge. 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I have a friend who just requested a copy of all the paperwork for her sister. I don't remember them saying anything about have to pay for it. I do know they said it was delivered in a large box. 

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

They said because I asked for everything and it was around 220 pages that they had to charge me. And this is without the doctors notes being included.

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

I did sign up for the portal. Just waiting for them to e -mail me the invite.

I will ask at every visit. I am playing catch up. I have only been Dads caretaker for a couple of weeks. 

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