Keeping track of everything that's going on can be difficult when you feel ill, are worrying about an upcoming appointment, procedure and/or scan, or are dealing with some difficult medical news. Sometimes there are so many things that I want to ask my surgeon that by the time I figure out what I want to start with the appointment is already over. When I get unfavorable news about my health from my doctor, I am sometimes so stunned by it that everything my doctor says after that point goes in one ear and out the other. That is, if it makes it into the first ear to begin with - bad news seems to be synonymous with noise cancelling headphones. Feeling tired, unwell, or in pain can make it difficult (and sometimes even impossible) to string together what my health care professionals are telling me. In a world were a patient's best advocate is him or herself, this is not good. When you are unable to ask the questions you need about your health or are missing crucial pieces of information about what's going on in your body, you are unable to make the best possible decisions for yourself. You are uninformed and therefore unable to advocate for yourself. Likewise, when you are unable to articulate how you are feeling to the members of your health care team, they are less likely to fully understand what is going on inside your body. As a result, they are unable to provide the best possible treatment for you. Lacking crucial information, ill-informed and unable to give voice to your own concerns - this is a situation that no patient should find them self in. Fortunately, there is something that you can do to help yourself be the very best patient that you can be. The answer is a list.
Lists have probably been the number one thing I have relied on since the return of the bone infection all those many long months ago. It's such a simple concept but also so incredibly versatile - groceries, homework, chores, hosting an event and... well, medical stuff! Here are some examples of lists I keep regarding my health.:
1) Between doctor's appointments I jot down any questions that I might have for the next time I check in with my doctor. I do this for two reasons. First, a lot of questions can come up between appointments. It can be difficult to remember them all by the time you actually see your doctor. Writing them down and bringing the list with you to the hospital or doctor's office will help ensure that you can ask everything. I like to go through everything with my surgeon first (latest x-rays, how he thinks things are going, possible changes in treatment for the future or information about the next step, etc.). Once that is done, I pull out my list, briefly skim over it to see what we have and haven't covered, and than ask any questions that haven't be addressed at that point. Second, doctor are often crazy busy. M surgeon, for example, can see anywhere between eighty-five to one-hundred and twenty patients in a single clinic day. As a result, he is crazy busy. I know my time with him is limited, so sometimes seeing him is like a "deer in headlights" moment. I know I have a gazillion questions to ask him, but I am so frantic to ask them all in the limited time there is that I am lucky if I get one or to out. My trusty list solves this problem - not thinking, just look down and read!
2) I like to keep an up-to-date list of all of the major medical procedures I have had done. This list also includes the most important parts of my medical history. A list like this comes in handy when seeking second opinions, meeting a new doctor for the first time, dealing with flustered emergency room staff who don't necessarily have the time to listen to you try to recollect your entire medical history or in an emergency situation. Just like questions we might have for our doctors, it can be difficult to bring up key medical information or important procedures when we are feeling ill or even wondering if a new doctor will believe everything we are saying. A list helps to solve this problem - a doctor gets a short and concise history of all the most important bits of information or we are able to speak clearly to a new doctor (unfortunately, sometimes even a slightest contradiction or mistake about when certain things happened, made out of nervousness, can set a doctor against you). A brief summary of your medical history and list of medical procedures can also come in handy when you attend pre-op appointments. Before surgery or any procedure under sedation you will likely be asked to recall any times that you have been sedated or put under general anesthesia and whether or not you had any reactions to the sedation/anesthesia. Depending on your medical history, this list can be quite long and span many years. Having a list of this information with you at a pre-op appointment will be very useful!
3) When I know that I will be attending a pre-op appointment or visiting the emergency department, I like to have a list of my current medications with me. This list includes the names of medications, which form they come in, how I take them, at what dose and when. Many drugs have long names with difficult spellings, making them hard to remember. Many also sounds shockingly similar to other drugs - a simple mispronunciation can have a doctor thinking you are on a completely different medication. Having a list of medication with you can help avoid any problems. It can also help your doctor decide on whether any treatment changes need to be made given your signs/symptoms, treatment goals and lab values. It is also important for them to know what medication you are one because certain drugs have contraindications (they cannot safely be used together). A doctor you have seen for the first time who does not know that you are taking drug X might prescribe drug Y, two drugs that are incompatible. A list of your current medication just makes it easier for everyone involved to get get all the information they need to best help you.
4) Sometimes I give lists to other people, primarily my mum. I do this when I know I will be having a procedure that will leave me feeling too loopy afterwards to ask the surgeon all the questions that need asking, or when I know he will see my mum in the waiting room while I am being wheeled into the recovery room after surgery. Doing so allows my mum to ask my questions, or at least the most important need to know right away ones, while I am unable to. This enables me to get the information I need even when I am unable to ask for it myself.
These are the four types of lists I like to keep regarding my health:
1) questions/concerns to bring up at my next appointment;
2) a summary of my medical history/current medical problem and important medical procedures I have had done;
3) current medication, form, dose, when I take it and why (this list constantly changes depending on what I am taking);
4) a list of questions to for others to ask on my behalf (this one is kind of rare though).
I have never required this, fortunately, but I know other people that also have lists of potential treatment possibilities that they would like to discuss with members of their health care team.
My point in all this, lists are good. They are your friends! Keeping a list is easy and almost effortless. I often come up with questions or think about any concerns I have while sitting in bed, so I keep a pen and note paper on the night stand. I also keep pen and paper with me in my purse in case I think of something while out of the house - that way I don't forget it before I get home to write it down. It might seem like a silly idea to individuals who have never experienced any serious medical conditions. Or it might seem foolish to anyone new to the medical world. I mean, we can just rely on our memories, right? Besides, lists are things that old people use because old people are forgetful... and I'm certainly not old! Seriously though, I am twenty-three years old and I regularly rely on lists when it comes to my health. They have helped me remember important questions and bring up worsening symptoms more than once. I have an amazing memory, but medical things are not like fond memories or odd historical facts. When you are tired, in pain or overwhelmed it can be hard to remember things or ask the right questions. On top of that, chronic medical conditions have a way of blurring your memory together: Have I asked this yet? Did I bring up that new symptom yet? This appointment feels like all the others. And so forth. So lists are your friends. Not only that, but they help you advocate for yourself and make you look like a patient who wants to be well-informed. This earns you brownie points in the medical profession.
Let's face it, medical problems suck. And when I say suck I really mean some other four letter words that starts in h and and rhymes with mate. But lists will help you be the best professional patient you possibly can be! XD
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