Who Drives the Car? (med management)

[perkicar]

I know there are several out there with multiple medical issues. I recently had a microalbumin urine test come back elevated,indicated early kidney damage but not terrible. Nonetheless, it's time for me to "wake up and smell the coffee" and step up my management of my type II diabetes. I take glucophage twice a day, but hadn't been consistent at all about checking my blood sugar. And my HgA1C was also up since the last time it was measured (but still less than 7%)
Anyhoo--since some of this is diet and exercise managed (which I can do!) and medicine managed, I'm wondering how others of you have coordinated BP and sugar meds (or any multiple issues where you're seeing several different specialists. Is there one person in "charge" who keeps track of all your meds (other than you, of course!)? Or do you just trust that your MD's will know how the meds they change affect the other meds you're on. I went through this with my mom and it made me nuts, because it seemed like there was no communication or coordination between the specialists. I'm leaning toward my cardiologists group, since they include cardiology and endocrinology.
What are other folks experiences? Thanks in advance!

[Superbob]

Carolyn --- great question! I have been wondering the same thing. Before I moved from DC area to mountains a month ago, my cardiologist was prescribing one set of medicines and my GP another for the type II diabetes -- although a few times my GP added to the cardio-type drugs (Lisinopril recently, for example). Neither one of them ever recommends deleting a medication the other has prescribed. I have wondered, too, who (if anyone) is really taking a good look at the total load of meds (I take seven pills a day now) and determining if maybe some of these are not needed or actually may do more harm than good.

I've just gotten a new GP, and she didn't make any recommendations for changes on my first visit. My first visit with a new cardiologist is later this month. I am hoping he will be the one to make an overall evaluation of the meds, but I bet he shys away from weighing in on glucophage.

Anyway, thanks for raising this issue. Will be interested to read what others have to say.

Rob

[Nancy]

A long time ago, when Joe started to have multiple and difficult medical issues, I thought that perhaps one doctor could be the head of the team and manage his problems.

Unfortunately, I was terribly naive. No doctor has the time to manage all of the issues. I found out that I was "IT". So I have gradually learned to keep track of everything important, and I sit in on every medical thing that is said to Joe, as much as I can, so I know what's going on, what they're looking for, what tests they're going to run, why they have changed medications, etc, etc.

I carry with me an up to date list of every medication, the dosages, the times per day and any allergies or other bad reactions he has had with meds.

I also have a comprehensive list of every serious medical problem he's had since he was little, all of his surgeries and the outcomes and any significant problems he had with what was done.

I bring these to every appointment Joe has, and it is with us if he has to be hospitalized.

I trust no one to communicate with each other. It is time consuming for them, and often they are playing telephone tag for days. Some will FAX things to the other, but most of the time, this is not done, or it is done sometimes and not others, so if there is anything relevant, I bring information from one doctor to another.

Is it time-consuming, you bet? Is it a pain in the butt, you bet? But it's the only way. It's not that the docs are not caring, they really are, it's a time thing when there are lots of problems.

I can't tell you how many times, I have to point out things. Not everyone knows everything, and there will no doubt come a time, when YOU know more than those who you are meeting with at the time, not in medical knowledge, but in knowledge about YOU.

Joe's doctor's are fantastic. He just has too many darned problems. ;)

[perkicar]

Actually, Nancy, what you've said makes perfect sense. It's one of the reasons I went to Cleveland Clinic for my surgery--my medical history is complex and they were the first place I went where I got some sense of them being able to see the big picture (and the how's and why's I got to them in the first place)without being overwhelmed by the complexity vs just that I had a bad aortic valve and big heart murmur. I felt kind of bad when I got my history to forward to Dr Lytle the first time--I made all kinds of corrections with facts that my cardiologist here had either wrong or in the wrong time frame. Of all of them, I know exactly what I've had done to me medically. I just need to have them on a microchip implanted in me in case I'm not able to speak for myself LOL.

[Nancy]

That's why I'm Joe's mouthpiece, and a BIG one at that. :D He frequently is quite ill and he also relies on me to keep track of things.

[Cris N]

I just need to have them on a microchip implanted in me in case I'm not able to speak for myself LOL.
I guess that's why Medic Alert exists. :D

Cris

[gijanet]

It could be completely different in the ped world, but absolutely everything is run through either our pediatric card or our cardiothoracic surgeon. Even with the jury still out on the gut surgery, our surgeon nixed doing anything for at least six months. Even our ped, who is excellent, runs anything questionable past Katie's PC. I'm like Nancy, though. I don't think I would trust any one person or group to be on top of everything. I would like to hear what some of the other complex folks like some adult CHDers have to say about this. I remember Niki having a problem getting two of her specialists to "communicate."

On a side note, yes! please start taking better care of yourself! On a really different note, I have been meaning to tell you that I am a registered bone marrow donor......have been for about three years......just haven't gotten my call yet.

Many hugs. Janet

[Johnny Stephens]

Nancy nails it again. You really have to look out for yourself, or have a strong advocate there for you when you're unable to fight for yourself.

I also have multiple things going on - 2 mechanical valves; pacemaker; borderline diabetes; gout; anticoagulation; severe obstructive sleep apnea. I would argue that I've dealt with the absolute best individual doctors in each discipline, but their individual focus is, as you would expect, within their specialty.

My GP/Internist and cardiologist (the best doctor I've ever had) had a disagreement about the state of my blood sugar - internist says I'm fine, cardio says I have a set of cardiac issues that demands lower blood glucose levels. They took no initiative to work together to give me a clear set of problems and solutions.

I do liason-advocate type work at a really big software company, and it's extremely challenging. It pales in comparison to the effort required to keep my docs up to speed on my current state. I consider it a real personal victory to have my GP tell me yesterday that he'd talked to my cardio on the phone about my meds. Yeahhh! :cool:

Short answer: You have to educate yourself, and manage your own care; otherwise, you're placing your hopes on someone who is rushed, sees you for 15 minutes every 3 months or less, and can't recite back to you everything that is happening for you medically.

My $.02

[Nancy]

Judging from the amount of time I spend trying to keep Joe's stuff straightened out and organized, there would be no one who could possibly be hired to do it. It's a half to a full time job.

Doctors have many, many patients. I have Joe.

But they're paid more--Hm-m-m-m. OK Joe, ante up the BIG bucks!