If you're dealing with Klippel-Trenaunay you're probably dealing with a variety of doctors. Unless all of the care is being undertaken by a multi-disciplinary team, you'll be seeing different doctors for different needs. Sometimes these doctors will be in close communication. More often...ummm...not so much. It's going to be up to you to make sure they're all on the same page. Yes, yes, I know, we're the Uneducated Masses, we're the ones being acted upon, not those with all the knowledge and power. Ho, ho, of course that's wrong but the key to all of this is for us to pretend to be the Uneducated Masses while we wait for them to catch up, right? So...what do you do? Here are a few small tips.
A. Get copies of all medical records. Yes, I said all of them. As many as you can. This may not be free, it may actually end up costing a bit in the end. But it will be well worth it. If at all possible, get disc copies of MRIs and scans. Seriously. Doctors and their staff are not infallible and can lose, errrrr, misplace things. Having your own copies will also keep you on top of changes and give you the opportunity to show other doctors how things are going if there are questions.
B. Take pictures. Lots of them. It will chronicle the journey. It will also help doctors and medical folks see how bad that ulcer was when you first called for the appointment. Or how bad the swelling wasn't previously. You can even take pictures of prescriptions so if the doctor questions whether you've got it right you can show him what you're talking about. Take pictures in Medical Supply stores of equipment you like or have questions about.
C. Research and keep a file. If you see information about a particular aspect of your loved one's condition that you think might work, print it out and keep a copy for the doctor. Telling him you saw something about __ online isn't very helpful and it's a special doctor who is willing to go online after hours and search for something vague. Research everything you can about Klippel-Trenaunay. Your library might offer access to medical journals as part of your library card privileges (check in the e-section along with e-books and other online and downloadable media). And if you're not sure, ask! Some universities with a medical program allow people to look at the journals in the library, some hospitals also have a medical library patients or families can access. It never hurts to ask. Start learning, keep learning and keep copies of studies or procedures that might work for you. Give a copy to your doctor and ask how feasible it might be. The more informed you are, the better care you will receive. Don't stop looking and learning. Only you will have your family member's best interest at heart. The more you know the more affective advocate you can be for him or her!
D. Speaking of...study everything you can about Patient Advocacy. The more skills and tricks you have, the better this journey will be. Learn how to petition, haggle, bargain and stand up for your loved one. You can only do this through education and practice. Check the library or online for books and blogs that help you take the first steps to patient advocacy.
Hopefully these few tips will help make your journey easier. Hopefully you're already practicing all of them already.
Wishing you luck along your journey...
No comments:
Post a Comment