Your medical records

In recent years, medical records have become more and more available to the patient. Some medical facilities make them available on line. Others offer them at the end of each doctor visit.

I have tried to read translate my medical records. It is not as easy as you think. If it says 'patient denies... '  that just means you said you didn't have whatever they asked you about. They are also full of vague 'doctorisms' that are not as clear to the average patient. That is fine by me.

They are full of the doctor's opinion about what is going on with me. This means they are full of the thoughts and opinions of people who went ot medical school to unravel my medical mysteries. They could probably write theses on my medical uniqueness at this point. And my unique ways - for instance if I find a 'something' its guaranteed to be a 'nothing'. But if a test finds 'something'  its guaranteed to be a 'bad thing'.

But I digress.

A medical record is a pile of doctor notes, test results, procedures, diagnoses, treatment plans, and professional medical opinions.

There is the thought process that patients should find out whats in their medical records. I agree with this. I do get copies of test results. I have been known to ask what is in my records and disagree with it.

But I am not sure I think I should be able to edit my medical record as if it was a Wiki. A medical record should stand as the medical professionals' version of me. It is sort of a reference list of my medical history (blah, blah, blah) and should be what it is and nothing else.

I could add a separate list of information which becomes the patient's side of it. I mean if the doctor said I seemed to tolerate a procedure well. I could happily record in my version that I was uncomfortable and basically it was a very sucky experience. From the doctor's point of view, I might have been uncomfortable but it wasn't a walk in the park as most medical adventures are.

I am an advocate for my health but I also respect that medical professionals went to school for their training and are working with in their professional detachment to keep the emotions out of it. I am full of emotions about me.

Which reminds me, next week I need to go pick up copies of my latest test results to make sure I keep up with  my latest.

Sharing information

Today's topic for Wego Health Blog month is choosing what information to share.

When I was diagnosed with thyroid cancer, cancer was the big C, I was young, and cancer was the killer. I quickly learned that the word cancer made people frequently run away from me. I grew to like 'selective sharing' and only sharing with those I felt were in on the 'need to know'. I didn't tell long term friends for sometimes decades.

At my second diagnosis, I said to myself, the heck with this, I am going to be a bit more open about my cancer and now am comfortable living a life that includes the word 'cancer'. This isn't to say I introduce myself to total strangers as someone who has been diagnosed with cancer. But there are times when I do openly talk about it.

I have two part time jobs. One of them is at a local cancer support organization. There I am quite open with that group as its full of people who have had cancer or who treat people with cancer. I think most of them are fairly aware of my medical background.

At my other job, they all think I know so much about cancer and its treatment because of my job at the cancer center. They do not know about my cancer, they just think I am incredibly unhealthy with a bad back, fibromyalgia, RA, tennis elbow, bad ankle, and more. They laugh at all my doctor appointments and tease me about my ailments. Sometimes I was tempted to tell them about it but then one day one of my coworkers said that every time she hears the word 'cancer', she just assumes that the person is done for. That was it. I no longer considered that as an option.

So how do I decide where to draw the line. I do not broadcast my ailments. I also don't feel the need to keep everyone, including family members, updated with minute by minute updates on the latest ailment and treatments. Sometimes I am more open about things than others. It really depends on the ailment, who the conversation is with.

If my medical issues do not impact the situation, I leave them out. If my medical issues do impact the situation, I may bring it up. If I am asked if I want to go to a museum, I will probably decline. If pushed I might tell them I simply can't stand around like that to enjoy the time.

The level of detail that I share is usually very little. However if a friend calls me up and asks about a specific medical procedure that I have had the privilege of undergoing because they are going to have the procedure, I am happy to share all sorts of details including pain level, hospital stays, recovery, questions they should ask their doctor, etc.

So maybe I still live by the 'selective sharing' on a 'need to know basis'. Maybe I haven't changed as much as I thought.

How would you answer the question?

Someone asked about this on one of the many cancer boards I am on recently, post cancer how do you answer the question: "Do you have any significant health issues?" Let us pretend this is not a doctor's office where we would launch into a twenty minute spiel that includes multiple surgeries, treatment protocols, on going side effects, latest tests and their results, current prognosis, medical facilities used, and current medication list. If someone really needs to know my medical history I need a sheet or two of lined paper, not two scrawny little lines to write in tiny print.

But what if you wanted to go bungee jumping, sky diving, or something which required a medical release? Do you say 'I had cancer and am mostly fine except for a touch of lymphedema'? (Note: my back would preclude me from any of these activities myself.) Or do you say nothing because you are no longer in treatment?

My personal feeling is that if my medical history is going to make a difference I might tell them about the majority of my medical adventures. Is it important for anyone to know I had my gall bladder out four years ago?  Only to my doctor or a surgeon looking to cut into other parts of me.

I will never use the word 'survivor' to describe myself except in the context of  'surviving millions of medical adventures'.  But I could be persuaded to write 'I had cancer twice'. Then I get weird looks and lots of questions and people tend to tell me their medical history. And then we get to have a big discussion about health ailments.

So I guess I would be more inclined to keep my mouth shut about my medical history.

Better late than never

Last winter I was approached by Tory Zellick, the author of "The Medical Day Planner" asking me to review it and then make it available to people at the Center where I work. I said I would because I had plenty of time. The book didn't show up when promised and my life got VERY busy for several months. In the midst of all that the book showed up and as I was busy I put it aside - like every non essential thing in my life. It got lost in a pile of books to deal with.

Finally I rediscovered it and said to myself "oh crap I did say I would review it didn't I?" Then yesterday Ann, over at But Doctor I Hate Pink reviewed it and started a contest for a copy of it. I started to feel like a slacker and the guilt piled on. So here is my review:

One word: wonderful. One request: everyone should be issued one of these at birth.

Seriously. I looked at it and said why don't I have these records of my entire life? I have chemo brain and have no idea. But if I had had this book issued at birth and kept it up to date I would have known.
It makes me want to go back and put in all the information I have on my medical adventures - but I think I might need a second or third copy before running out of space.

My mother used to keep a file on each of us children full of useful things like birth certificates, doctor notes, immunization records, and report cards. I have no idea where my folder is now. I may have it or she may still. I have kept diligent records over the last five years of every medical expense (for tax purposes), appointments, and medications. I have a folder which is labeled "Current Medical" that has my recent test results. I know who all my doctors are and how to reach them - most of them conveniently are at the same hospital where my patient number will unlock the piles of information on me.

I could have used one for my husband as well. He doesn't remember his medical ailments and what he has done either. He did have some medical adventures a few years ago that could have been very nasty but ended up with good results. I wish we had written all that down then as well. Actually he doesn't know it but he has a little section in each of my medical appointment and expenses list so I can track that part of his as well.

But back to the book, unless you are perfectly healthy go buy a copy. If you have never had any ailment - even the common cold - you don't need it. But since we all have had the common cold we all need it. Get a copy for your spouse and each child as well.

It is conveniently broken out into useful sections - patient information, phone book, medication appointments, treatment, procedure history, test and scan history, hospitalizations, notes, and day planner. I'm not sure if a one year day planner will be helpful to me but all the other sections are incredibly logical and useful. Some things would be written in pencil to be erased and updated but others could be indelibly etched in ink.

So what are you waiting for? Go buy a copy!