How to be own case manager?

[Lisa Inman]

Hi folks--

The more appointments I go to, and the bigger medical facilities I go to, the more screw ups seem to come up. Then I read all the weird stuff that's been done to and said to folks on the forum by doctors and medical facilities--I am learning I have to be my own best advocate and case manager and not leave it to the "experts".

After arriving at 3 of 4 of my last appointments and finding they didn't have the previous records they were supposed to, I've decided that I need to have a complete file of ALL of my medical records and reports, and keep it current (get copies of everything every time I go in) and I have started it in one of those carrying file boxes. I plan to hand carry it to every single appointment I go to from now on, and not care if I look "dumb" because I want to be able to fish out those test results if I need to and hand them to the doctor and say, here, take your time, but READ it...

I'm also realizing that I can't take anything for granted when it comes to one person communicating with another person, but I need to doublecheck. I've been waiting for Rochester to respond to my sending records/info/cover letter by fax two weeks ago (as I was told by phone would be fine, to have doctor verify that indeed I should be making an appointment, how long, and with him)--I even checked a few days after sending and left a message for the person who said to fax them to her. She emailed me the other day and told me the pages I faxed showed up from "somewhere" on her desk 12 days after I sent them! She also said she was never given my phone message. And I was trying not to bug her... To their credit, when she got the fax pages she paged the doctor immediately and not only got me a really fast response by the next morning, but had me talk with him at length on the phone in person (and she said I would never be "bugging her" by checking in; it was someone else who gave me that sense.) So there I've learned to just stay being the squeaking wheel and keep at people....

Another one from this month: I wrote my University cardiologist after he referred me to the EP at same clinic; when I went to EP I realized after the visit when I tried to make sense of it that she didn't know who my cardiologist was, or that he was at the same clinic, and she didn't have in front of her the results of the $2500 worth of tests I'd just had done at her clinic. To his credit, after he read my letter, my cardiologist called me and said I was right, it was a screw up, he had since talked to her in person, told me what they agreed on as the medical recommendation, and that I could always reach him by email--but it took me about a week to figure out what felt so weird about the appointment with the EP...and figure out that I needed to write him and clarify that they agreed on their recommendation. (First hint was on the highway out of town after whole day getting to that appointment, I remember saying to my husband, "WHY did we just go there??")

The point is I can see that I need to be my own case manager, and be very proactive about it. Yet I'm learning as I go, so each time I encounter one foul up and kind of figure it out, it is a different one next time. Aside from winging it and trying to recognize and juggle whatever they throw at us (and throw it back when appropriate) any strategies out there?

So, subjects include keeping track of records, and keeping after people about communicating with each other even when I feel they are the "experts". Also, reading the forum I read all kinds of weird stuff folks get told by ER doctors and nurses (was it Andrew's mom who said someone asked with concern, "do you know he has a murmur?" EGAD!) Any thoughts on educating my local, small town ER either ahead of time on a just-in-case basis, or having info to take with me or leave in my local hospital's file? My cardiologist is a couple hours' trip away, if I have to go to the ER for something HCM related or for something else it would be the ER staff and perhaps my local PCP who'd be there. Cardiologist would be contacted by phone, so maybe I should have the cardiologist's contact info in my hospital file too? I plan to ask my PCP to what degree she would be willing to educate herself about my HCM and stay in touch with my cardiologists, both at the University and also now I'm going to go for eval at Mayo Rochester.

Burt, and some of you others--I'm finding it so hard to keep on top of one medical condition; I don't know how you begin to keep track of all your multiple diagnoses and how they all must interact.

Thanks everyone, you are all great,
Lisa Inman

[mtlieb]

Hi Lisa,

You are absolutely correct about being your own case manager when it comes to your care. We all find that we have to do that, and it sounds to me like you are very much on top of things! Nice job.

Each and every time i go into my local ER for anything heart-related they always try to give me nitro, which by the way is a no-no with HCM. It doesn't matter what i say to them, inevitably someone will come into the room several minutes later and say 'okay, we're going to give you your nitro now'. I finally circumvented the entire issue last time by telling them up front i have a severe allergy to nitro. LoL. Now that's something they can understand at least, and it's listed on my chart now along with my other allergies.

Great idea keeping copies of all your test results. It's much easier to get them right there on the spot than trying to hunt them down later. If you ever have to change PCP's you'll be thankful (and so will they) that you have copies of your previous medical records to provide them with. I also found it handy when i was first diagnosed to keep a little diary. I tracked my meds, dosage changes, how i was feeling, my daily blood pressure readings, notes from doctor visits, phone calls, etc. It wasn't anything really elaborate, just a little notebook i carried around with my records and scribbled in so i wouldn't forget stuff.

Many folks have medic-alert bracelets that list key information for ER staff, and i've also heard of people making their own little webpages that provide their medical history. I've always thought that was a great idea myself. The web address could be listed on a medical bracelet or card and the ER staff could pull it up quickly. There's already companies out there that do this for a price, but anyone can get a webpage for free.

At any rate, enough of my ramblings. Good luck with your visit to Mayo and be sure to let us know how you are doing!

Jim

[Burton Borrok]

Hi Lisa I,
Ah, the sight of wisdom is a beautiful thing to behold. You’ve come a long way in ‘protecting’ yourself. I’d just like to add a few words about things that have stood me in good stead over the years.

I wear a medical alert bracelet, which I find is frequently ignored, and it can only give the barest of information. I have engraved on it – “See wallet.” In my wallet I carry two sheets of computer printout each for me and my wife – and so does she. The first sheet is a listing of all my drugs and the dosages. The second sheet has all my diagnoses, and all my hospital stays, including where and why. If they don’t check my medical alert bracelet, I can give them chapter and verse – even when I’m feeling so lousy I can’t think straight, and if I am unconscious my wife has a back-up set. I feel that’s as safe as I can get it.

Next, I found that talking to a doctor on the phone (or leaving a message which always seems to get garbled) is extremely chancy at best. If you realize that a doctor sees four to six people an hour, all day long, all week long, month after month - by the time of your next appointment if he doesn’t peek into your file he wouldn’t know you from Adam - - and all he gets is a peek at your file before coming into the exam room.

Instead, I make all communications with the doctor via letter, which I fax to all interested parties, including my PCP and High Risk Caseworker. I always get copies of all tests and attach the current ones to the letter along with updated drug lists etc, as appropriate. I want all my (currently ten active) doctors aware of what is going on with me. When I talk to a doctor I will back up all significant statements with a letter (As you stated at my appointment on xx/xx/xx – blah, blah, blah) – (that is so the rest of my doctors are kept informed.)

I too have a complete copy of my records, and when I go to see a doctor I will print off a copy of my drug list and diagnoses/hospital visits – if there has been any change to them since the last time I saw this particular doctor. As appropriate, I will also make up an extract of my current status and problems. I will try to be as succinct as possible (don’t judge by this post) – trying to give the doctor a quick snapshot of where I’m at – and also to jog his memory. Finally, if needed, I will make up a list of questions and concerns – and give the doctor a copy of each when I first see him.

Once the doctor gets accustomed to your approach, you will be surprised how quickly he will respond, and how more directly he will address your conditions and concerns. The nurses will love you too, as it makes there job a lot easier. (That is if they are both of value to you to begin with.) By the way, I will always check out what he says and/or prescribes on the internet. Any remaining questions will be cause for another letter.

Hope you find this of some help – you’ve already come quite a way yourself.
Burt

[Jall]

I decided to keep a complete set of my own medical records after I learned that many health care providers destroy records after seven years. In my situation, an MRI test done about ten years ago is unavailable--the doctor retired and destroyed his records and the hospital claims they can't find it. A word of warning, however, about getting your own records. Many providers resist the concept of giving out medical records. I often have to call several times and become a pest to get any results. Some providers will even use HIPPA, which was ostensibly passed to protect my privacy rights, to keep me from having a copy of my own records. Of course, the more professional medical providers have no problem with such requests and will gladly give you a copy of your records--you will still need to ask.

[NoCrash]

Hi Lisa,

You've got interesting questions. I haven't been carrying copies of my own records for very long, but what I've found useful in the past few months:

Keep a copy of the earliest record for the diagnosis of HCM. In my case I have a one-page summary from a test/dignosis from 1972 (I was a teen) that cuts-short alot of questions from each new doctor that I encounter about the origin of the diagnosis.

When I was at Mayo in December they looked at the last one or two echos and results from a Holter monitor last year and pretty much ignored earlier test results I had avaiilable.

When I was at UCLA Cardiomyopathy Center last week the copy of the test results from Mayo was well received. After the doctor reviewed those results he called-off further duplicative tests that they normally schedule (stress test and echo). We also referred to a set of blood test results from last year performed by my PCP --- I wish I'd been copied on the blood test results from Mayo, but I didn't receive them for some reason.

I carry a medications list in my wallet (as described by Burton) and a small notebook with dates, patient ID numbers, telephone numbers and names of insurance company contacts, and doctor's instructions. Also a good place to record questions as I think about them.

My Palm gets all my appt. and scheduling information so I can deconflict appts. on the spot, if needed. Of course paper calendars work for most people.

You do have to keep after your providers, too. The notebook helps because you have notes telling you when you last called--"hey, it's been 7 days and you haven't done xyz yet!" It really helps.

It doesn't hurt to ask what amounts to the same question in different ways. Somethimes you may ask a question that gets a rote response that will get a more meaningfull response if you state it differently or more directly.

One last thought. I believe physicians are moslty willing to share copies of lab test results, but are less likely to want to share their full charts containing notes, etc. If you find a doctor that is not cooperating you might consider backing-off a little (at first) and asking for "just test results." You might have better luck with these types asking for a summary as part of a referral package. (Besides, the notes are mostly illegible, anyway.)

Good luck,
Rob

[NoCrash]

Oh yeah, I have vowed to organize copies ofs test result by test type (blood, echo, ecg, etc.) in reverse chronological order in a binder with tabs for each test. There was too much fumbling around looking for a particular test when the labs were organized by "ordering physician."

Rob

[Burton Borrok]

Hi again,
I forgot to mention that I carry business cards for every doctor I or my wife have, plus the labs and pharmacies. It saves a lot of bother, although it does make for a fat wallet.

By the way, I get copies of all my blood tests and readings of x-rays and tests directly from the labs involved – usually the next day. I then distribute/fax copies to my other interested doctors, attached to an explanatory letter.

As far as your medical records are concerned, if you request them in writing, by law, the doctor must supply them to you within a reasonable time. The kicker is that they can legally charge you for each page they copy. (I have seen them ask for rates of from sixty cents to a couple of dollars per page.) I often beat these charges by getting one doctor to request the information from another doctor – then supply me with a copy. (I don’t think it’s legal to charge another attending doctor for copies of your records – at least, I’ve never seen it done.) Since I already have copies of all my labs and tests from other sources, all I need is the doctor’s observations and recommendations. (Makes getting copies much easier.)

For what it’s worth, I usually flirt and joke around with the nurses (with my wife there) – they usually are putting in a rough day and appreciate the banter – consequently, I have gotten copies of my records from them without having to pay for the copies. (Every little bit helps.)
Burt

[Pam Alexson]

You are so funny Burton. That charming technique always works for me too getting the medical records people to be receptive. As a nurse I always remember the patient that showed an interest and chatted it up always seemed to get a positive response about requests much more readily .

I too keep as many records as possible and find it the best way to stay on top of my personnal medical management . It also prevents duplication of services( something the insurance companies are always watching for.)


I think we have come to a time in history that this type of self knowledge and awareness , medical prioritization and partnership with our many physcians regarding our medical care is an absolute necessity to be taken very seriously as we take on managing our medical care. Information that is fed into computers is only as accurate as the individual who is entering the data and this faster paced technology with more data then ever has many opportunities for falling into the great abyss . In the long run the patient who is well versed ,informed and organized in their record keeping is able to coordinate the multi sevices and connect the dots for all those involved. I encourage everyone to be very proactive in this approach. As part of the HCMA, we have an even better then average opportunity to do this . The information available to us and the knowledge shared with us gives all of us this sharper edge at starting the process and following through regularly. As many comment regularly there is a sophistication in the educational process here and we all benefit from the various sources and those who help to bring it to us.

Have a good day all.

Pam

[BlueDevil]

One of the things my partner told me I needed to work on is being a better advocate for my care and take better control over it. I would have to agree with him, but as has been said, it is hard to do it.

I never thought about collating everything into a binder, but that is an excellent idea...

When I was in the ER for AF in December, the attending doc told me I should keep a copy of my EKG and, if at all possible, bring it with me if I ever needed to go to the ER for a cardiac-related reason. He explained that my EKGs are almost always going to look "abnormal" to the staff, even they are "normal" for me.

My second cardiologist in Napa, CA and the general one I have in MN are both very, very good about sharing records. With the CA doc, I didn't even have to ask; they were offered to me, and this was even before we decided to move.

Something else I recommend (to everyone) is be sure that whatever records you get are truly yours. After my initial appointment at the MHI 2 weeks ago, it was made known to me that some records that I'd forwarded to them had EKGs for two other people. The records from my first CA cardiologist had a page from someone else's records.

-- Tim

[NoCrash]

Good idea with the EKG. Quite a number of people (myself included) appear to have been told "you've had a heart attack at some point."

Rob

[Burton Borrok]

Hey Crashless,
I think you will find a goodly bunch of us here that have been told that they have had heart attacks because of the abnormal EKG. (However, in my case it happens to be true.) You will also have to guard against the administering of medications in the ER which are generally contra-indicated for HCM patients.

When I show up in the ER I always report to everyone who shows up in the cloth cubicle that I have HCM. They then generally get this abstracted look on their face and quickly disappear – I suppose to read up on HCM in their handy dandy copy of, “Emergency Room for Dummies” (How To Do It) book, and from the procedures that follow, I’m reasonably sure that the instructions read to, “Admit patient and pass problem on to hospital cardiologist.”

In any case, I carried copies of the last two EKG’s in my wallet for years, but with only two exceptions, nobody cared to see them. I generally got answers like, “I want to see where you are now” and such. The two exceptions just did a cursory look, but didn’t seem particularly interested, so I no longer carry them.

In any case, I hope you have better luck.
Burt

[NoCrash]

Hey, I just hope that when I'm carried into the ER I'm still able to talk! My wife (who's wonderfully supportive) has latched onto your idea of a MedicAlert bracelet with "See Wallet" inscribed and I'm not gonna get away without that particular piece of jewelery for very much longer.

It seems you should have a tip or two about transcribing an encyclopedia of a medical history onto something that will fit in a wallet. Any suggestions short of using a donkey-cart for a wallet?

Rob

[Reenie]

Actually, the HCMA office has thought about producing these cards for HCMA members, but I'm not sure where they are on the project right now. I know it's time consuming and I'm not sure they have enough manpower and time to do it right now.

Reenie

[Burton Borrok]

Hey buddy,
About using a donkey cart for a wallet – you made me laugh because that is exactly the problem I have – and I now keep all my money with a clip in a different pocket.

I keep all the information in my computer and print it out again whenever I make updates to it. I could very easily reduce it in size when I print it – but I thought better of it. To start with, I want the doctor and/or medical provider to be able to read it as easily as possible. Can you picture yourself laying on a gurney in a meat wagon speeding through the streets while a tech is trying to read a photo reduced copy of your information in a poorly lit, swaying vehicle – and you’re lying there feeling too lousy to be able to help?

If you felt well enough to be able to report the information yourself you probably wouldn’t be in the ambulance or ER to begin with, and your mate would also probably be too upset to be of much help either. Man, I will no longer even print on both sides of the page. I tried it and found too many smears and abrasions made it impossable to keep the page legible. This is one thing I’m particularly careful of. It is after all a life insurance policy, and that’s why I don’t rely on just the bracelet where the tech has to call somebody to get the information. I have seen that step overlooked too many times to trust it – while having the information readily available works like a charm.

If you find a bracelet manufacturer who will engrave it large enough and deeply enough to keep the engraving legible, please let me know. – and one last thought about the donkey cart wallet – I am now playing with the idea of keeping all my store and credit cards in a separate ‘wallet’ built for that purpose only, and returning my normal wallet to something of manageable size.

Remember, an ounce of paper is worth at least a pound of the wrong cure.
Burt

[NoCrash]

Burt,

I too suffered from sorebutticus fatwalletis for about 6 months until I recognized the symptoms and performed a junkectomy on my wallet. The resulting detritus went into a new type of device called a "man-bag" which now accompanies me on my daily travels (or travails). The junkectomy procedure works for the garden variety fatwalletis but there are perhaps better procedures available for the "fatwalletis vegas" affliction (which has the interesting side-effect of making casino owners smile).

I am working on the wallet insert, which currently has a meds list and AICD info in a 10 point font and can be printed out when updated. If I find a bracelet mfg. who meets the criteria I'll let you know!

Cheers,
Rob