Good Days Can Happen.... and how do you track your labs, appts, medical information?

I was upset yesterday that a lab test had fallen thru the cracks. Not upset it was missed but how it was handled after it was identified. Today with phone in hand, I let my fingers do the walking, and I did a lot of talking. I made the office manager of my PCP's office aware of the number of calls I had made with Zero contact with my PCP. Requested a referral to an Endocronologist by the name of Dr. Yuen at the Schnitzer Diabetes Clinic. This doc is Diabetic friendly and Thyroid friendly...Have heard good things about him off the chats.... so looking forward to hearing from his office for an appt schedule.

Shared concerns re my PCP with office manager. Have decided that I am seeking a new PCP...oh, I hate looking for new PCP...but I will look.

Spoke with hospital doctor that ordered the original TSH test, who did apologize that it fell thru the cracks. His office manager let me know that when he was made aware of it, he pulled his staff together for brain storming to develop protocol to prevent this happening again. I don't mind mistakes, they happen. IF it looks like an extended wait for ENdo appt he will reorder all Thyroid tests to determine if they are much worse.

Had I not requested copies of recent labs to hand carry to appt with new diabetologist this test would have remained buried. IT was ordered When I was in ICU as an in-patient to check for hyper active TSH levels to explain my palpetations on my heart. THe results came back after my discharge. In the old "pen and paper" days the test would have been sent to ordering doc, he would have reviewed, initialed, and decided on what followup if any was necessary and put that into motion, then it would have been filed. These new ELECTRONIC records do not have system flags to ID an abnormal test result to insure they are reviewed by the ordering physician... this is especially critical on patients seen in emergency or the ICU, but really all patients. Where is the necessary checks and balances to prevent oversight of important data??? Does the ordering physician automatically make sure all tests are sent to PCP as well as ordering physician???

TODAY'S QUESTION---- What methods do you use to keep your medical information i.e., labs, xrays, procedures, appointments, special consult informations organized? Many of us have the "well intentioned filing system" translation, I intended to file it in current medical but it got lost before I did... Many have the , oh I can remember all the stuff. For those blessed with a great memory, I bow to you....Mine is quite short... I know I am supposed to remember something and when the moment of truth arrives I would be glad to remember ANYTHING<please GOD>. I have gone to so many doc appts, that I have waited considerable lengths of time to get to see, only to be met with: why are you here today? doesn'nt my doc communicated these things? My questions to them: get the chart notes? get the labs, xrays, etc..?? Uh no, the doc replies looking thru his paperwork...........well there is a wasted co-pay and weeks or months of waiting, because in most cases we are going to bandaide the patients and reschedule them at a later date to follow up....not to start addressing issuess...

I carry most recent labs, procedures, anything relevent to the needed appt. I hate delays. I ask for copies of labs, and yes, I do have a filing system for them. I request copies of any updates on my medical record every 6 months. Consultations are long waits, they don't alway have access to the same eletronic medical files, and the best laid plans of mice and men invaribly fail when it comes to paperwork. At least the new doc will have some data on me. It would be very nice if they had a figs notion as to why I was spending time sitting in their waiting room for long periods of time, and then setting in an exam room getting bored out of my mind....they all have the same magazines. sports illustrated, time, and people magazines... there is only so many times you can read the articles. Let's see I think I will play " Let's stump the doctor, today....now whose office will I pick...uhmmmmmmm...........AH,something to write about later... how to keep your self occupied while waiting in the sub zero exam room.... so many drawers, cupboards... gadgets could be interesting... blow up glove, use magic marker to make face... they make good turkeys too., there is the foot scratch thingy.........the stirrups are always interesting,

In all seriousness, for those with multiple chronic medical issues... how do you keep it all straight? What is your method of organizaiton to prevent the accidental over sight of an appointment? Do you keep copies of recent labs, xrays, etc...??? Where do you keep them. Do you carry all the business cards of every specialist you have consulted with? I am frequently asked for dates that with time have slipped to the furtherest reaches of my once very sharp memory...and they lie there just barely past my reach... date, procedure, facility, results, dr name and address, fax number? Hello, do I look like DEX??? After a while.............they all run together----gosh, what it the gallbladder in 85 or the bladder surgery? OH, maybe it was the Fibro dx...no that was 83...and was it Dr. A or B , ah, it was Dr A gallbladder 92.............. my poor overworked cell phone can only hold so much....and then you could write a new chapter in the Cell phone for Dummies Books..... How I accidently erased an entire years work of appt records, including the up coming items in the accidental push of one little button... I transfered to a new cell...................ikes actually said more than a few explitives....and call the cell a few to many names.... when I should have looked in the mirror, slapped my forehead and said I could have had a V8...would have gone down so much better than losing the medical appts of 3 individuals for a whole year.......... how do you all do it? please Share.

Signed

I know that paper is here somewhere.

Yikes! I finally decided I can’t do it all so I focused on the important issues. My foot surgeon of all people told me to get together a medical team that will work together. He gave me an endo recommendation and even called the office and got me in that week. Then he gave me the name of a GP that is awesome and a team player. They work together. My GP is the glue that holds everything together and coordinates most of it but the endo is clearly in charge of meds and bloodwork. I’ve been in the endo’s office and he pulled out his cell and called the GP right there. When I get my bloodwork I tell them to forward to all my doctors - endo, gp and gastro guy. Its also online through the hospital just in case.

I keep a calendar - its a little 5x7 three ring binder I can fit in my medbag/purse. In it I finally narrowed it down to writing all my BS numbers, A1Cs, blood pressures and weight on the monthly calendar so I can look for patterns. I always know my last blood pressure. On the inbetween weekly pages I write down all food and other tests (cholesterol and iron are my concerns mostly) or anything that is high or low. All my doctor appointments are in there, too. RIght now I track information from my three main doctors in that book. Its my life. In the back I have every business card of every doctor I’ve ever seen INCLUDING the quacks. Needless to say I have little notes written on those babies. If I need my dentist, my foot doctor, my anything its right there. If someone asks me who is good, I’m not afraid to warn them about the bad. I don’t have the patience to ask for print outs but I do ask when I’m being checked in for all my results so I can write them in. If anything is normal, I just don’t worry about that number that time – I’ve gotta focus on the labs that effect my meds and my BSs - the ones that are up or down. I have a very thorough endo that does regular everything – from EKGs to 24 hr urines to bone scans and I have already found him consistent and good about testing so I no longer keep track of when I’m having what done. You have to find someone you can build trust with.

I also have a journal at home/in my bag that I write down all my thoughts, concerns, questions. If I don’t, I’ll go to the doctor and not remember my questions. If I notice a pattern or an increase in a symptom – I can tell you when it started. Its hard to remember when a doctor asks you - when did that start or when did it increase or how often did you wake up with muscle cramps. I know. People probably think I’m a nut but its my health and those anecdotal notes are important. How you feel is part of diabetes. Right now I’m certainly not depressed but I imagine that if I ever do have a bad patch, I would spot it with my journal. I also clip and put information in the journal about diet and meds and new technology, etc. I really love my journal. It works for me.

I hope you find something that works for you. My husband is a cancer survivor and does the same thing – his 3 ring binder is normal 8 1/2 by 11 size but he has the same thing. A monthly sheet followed by a by the week sheets. He clears his out every once in awhile and files it like me. I think he carries 6 months with him at a time. He actually has many of the same concerns as me - meds, testing and diet and how do you feel today. Also, think about its travel job. I needed mine to be with me all the time. So I had to decide how much to actually carry with me.

And while you are waiting for the doctor, this is my favorite – using your foot as if it holds a pencil, write the alphabet. Its really good for the neuropathy. I do upper case, lower case, cursive and print with each foot. By then someone is there.

Oh well, again – I hope this helps and good luck!

I am working at putting together a team. Hopefully the new Endo will have some recommendation for GP. Medicare doesn’t seem to be a popular calling card for doctors, not many accept it around here. I like your suggtions. I am going to give the foot and pencil thing a try. I have picked things up with my toes for years. I like the idea of a monthly and a weekly sheet, makes sense. Thank you for your input. Smiles, Pam