I am working to bring all of this EDS ER/Surgery information that has been gathered in bits and pieces and odd moments here and there into something concise, organized and useful. (This isn’t nearly as easy as I initially thought it would be!)
So, I am going to divide my advice into some dos and don’ts in this post as a general outline, which I have used as a springboard to come up with a relatively brief document that I can keep handy. (The brevity of said document is in serious question at this point and I am trying to think of ways to improve this so as to not have to publish a book.) In Parts 1 and 2, I talked about what worked well and what didn’t work so well during my daughter’s appendectomy. The following is general advice I can give from our recent experiences:
- Have a system of organizing your medical records and have access to it at all times. [Consider a medical alert bracelet like the Care Medical History Bracelet or another medical USB device to easily keep all of your info on hand. You need to include current medication list, allergies, doctor’s names and contact info, etc. A binder with the hard copies of this info is a good Plan A – however, I am inclined to have Plan B in the form of a USB device as a solid back up plan.]
- Create an emergency plan that addresses your individual needs. Keep it on a USB drive AND in your binder AND an extra copy in a folder in your car. You want this on hand at all times because an emergency will always happen in the most inconvenient way possible!
- Learn as much as you can about EDS. You have to be the expert because the chances of ending up with a EDS savvy doc is slim and even if you are lucky, you will need to help them customize you or your child’s treatment in a way that takes your specific issues into account.
- Remember that you will know your body better than any doctor can. Learn to be your own advocate.
- Educate everyone you come into contact with at the hospital, in some small way. It is extraordinarily frustrating to have to spell out E-h-l-e-r-s D-a-n-l-o-s for every nurse and doctor you see, but every time you do, that is one more health professional who has at least heard of EDS. We may not have the power to move a mountain, but we can move one grain of sand at a time – and, in the end, that is how the mountain gets moved.
- Have a family member or friend who can be an advocate when you are unable to do so for yourself. Allies are necessary in this battle- you cannot fully fight for yourself when you are unconscious or in severe pain. If you don’t have this, be diligent about #2 so you have a document to speak for you.
- Know what works for you. For instance, my daughter is a hard stick – many EDSers are. We have learned that a butterfly needle is the key to turning a hard stick into no big deal. That and being well hydrated. Another issue, lying flat on her back causes problems that medical staff needs to be aware of. Don’t be afraid to say what has worked in the past and firmly request/demand it along with what causes problems for you and thus needs to be avoided.
- Take advantage of documents created by the ENDF. They have excellent Medical Resource Guides that you can print off and have on hand to share with your doctor. Unfortunately, the ER/Surgery booklet isn’t printable, so I am going to just have to take excerpts from it and make a separate document or something. Not ideal, but I can at least have the link available so it can be viewed online.
- Assume the doctor will know ANYTHING about EDS. If you get one who does, it will be a lovely surprise, but assume you need to educate them because you really can’t rely on a doc who says they know EDS.
- Wait until AFTER an emergency to make your plan – do it today. I really, really wish I had a plan ready when we needed it!
- Forget to update your medical info as it changes. If your medication has changed, update that list today. If, say, your daughter has had an appendectomy recently, update her list of surgeries. (Note to self: go update Em’s medical history on her med alert bracelet!) Seriously, be diligent about this so your med list or medical history isn’t partially accurate and you aren’t in the ER trying to remember those details. This is why I really love our med alert bracelet – the software is very easy to use and you can easily update the plethora of info stored on the bracelet whenever you need to. Whatever system you use, make sure it is simple enough that you will use it.
- Assume that a non-EDS emergency can’t happen in your focus on living with EDS day to day. Any normal problem/ emergency can pop up and having EDS will just make it more complicated.
- Assume that every problem is EDS related and allow new symptoms to go unaddressed. New symptoms should be investigated, even if you find out it is nothing to worry about.
- Be put off if there is something you need while in the hospital or that you believe the staff needs to implement. Sounding like a broken record is one way to make sure your needs get met and we all know that the squeaky wheel gets the grease.
- Leave anything to chance. Ok, that is impossible, but what I mean is that we need to really take time and think through each potential obstacle or stumbling block, each co-morbid condition and symptoms that could be problematic in an emergency situation, and make an effort to share enough info to make sure that issue can be managed.
Most of this is common sense, but unfortunately, we can get so wrapped up in just surviving each day with EDS, that we might fail to think of these things. And, when an emergency happens, we find ourselves in a more challenging situation than we need to be. If anyone benefits at all, even in the smallest way, from this series of posts, I would be very happy to know that my own struggles have helped someone else.
Part 4 will be a generic plan for emergencies and for surgery, divided into various categories of concern. Part 5 will be our own personalized plan – taking the generic plan and plugging Em’s name in and listing specific information that applies to her. Coming soon!