Doctors

[jagermiester]

I have always been intimidated by doctors all of my life.  I always did what they say and never questioned them.  However, over the past several years from the time I was diagnosed with breast cancer and then kidney failure, I have noticed that doctor's do not always notice everything, or they get short with me when I try to ask questions because I don't always understand what is going on.  When they get short, I never say anything and just leave the office.  Even the secretaries some times get short with me when I am always asking for copies of things.  I have found that it seems that I need to keep up on what is going on and bring things to doctor's attention.

Yet, when I do that, they get irritated with me.  So, as you can see, I'm going in circles here.  How do you all handle your doctor's and staff when you do things like this?  Do you keep your own records and bring things to the attention to the doctor?  Should I even do this at all? 

I'm not sure what I'm saying here, but I'm getting confused and frustrated with doctor's, nurses, secretaries because it seems like I'm bothering them if I ask questions and stuff. 

 

Rant over.
Joy

[Desert Dancer]

Let me ask you something:

Q: What do you call a med student who cheats his way through school and graduates at the bottom of his class?

A: Doctor.

The point being, just because someone has a medical degree does NOT necessarily make them competent. It doesn't even make them the smartest person in the room half the time. You've GOT to take charge of your own care and if they get irritated with you that's too goddamn bad. Actually, if they get irritated with you that's a sign you need to start looking for another doctor, because a GOOD doctor would welcome your questions and answer them to your satisfaction. A doctor who thinks he/she shouldn't be questioned is a doctor who thinks he/she knows everything, and that's a bad quality in a doctor because that means they'll never question themselves, either. Doctors weren't born doctors - they had to go to school to learn what they know - and if they can learn it so can you, up to a point.

As you can probably guess, I've been through a lot of doctors because of this and have only ever found a handful of good ones. Incompetence took my ex-husband's leg and my father-in-law's life, just for starters. Both of them had old-school reverence for doctors and things might have turned out much differently if they'd pushed and questioned. I HIGHLY recommend being a major pain in the a$$. Your life may depend on it.

[Willis]

I know three doctors socially in a situation where we have no professional medical connection at all. One is a neurosurgeon and the other two practice internal medicine, one of which specializes in sleep disorders.

Each of them, when they found out I was going on dialysis, basically knew NOTHING about PD other than it existed as a therapy. I have IgA Nephropathy and only one of these doctor friends had even heard of it. They all are "fascinated" and want me to give them details of my experience and I can tell that I know more about these topics than they do even though they try to gloss over that impression. Usually, most doctors I've met are reluctant to even admit they are doctors because people then bombard them with personal tales. Being a computer specialist, I can relate to that! So I find it revealing that they ask ME about PD and IgA.

Now my point is not that these men are stupid or bad doctors, rather that NO ONE can know everything. A big part of being a good doctor (or anything for that matter) is to know what questions to ask and how to get the answers. Doctors are just people too.

That said...I get copies of EVERYTHING and with the help of my wife who is by my side at every doctor visit we are extremely proactive when it comes to my health care. Some doctors seem to just open up when they realize you are an informed and proactive patient. If you have a doctor who reacts negatively to this, then I think that's a bad sign and I'd be looking for a new doc.

 

[MooseMom]

I've been doing the whole "get blood drawn, then get results at my appt the following week" thing for 7 years now, so I've settled into a pattern that works for me.

Yes, I get copies of everything.  When I get to my neph's appt., the receptionist asks me for my credit card and I ask her for a copy of my labs.  If the neph's nurse has really been on the ball, she'll already have made a copy for me, and it will be in my file (which is the size of Everest).  I look at my labs and see which numbers are OK and which are wonky, so I can sit peacefully and start formulating questions and anticipating what the neph will say.  I've kept all my lab results, so I have become adept at noticing trends (usually downwards).

Like Willis said, you can't expect doctors to know everything about your body, so you have to be as educated as possible so that you can ask good questions.  The questions you ask give docs a clue to what is really ailing you, so try to remember that your queries can be a very good diagnostic tool in and of itself.

I hate to say this, but I think if you show more self-confidence and less intimidation, you may get better results.  People, even doctors, subliminally react to the signals you are giving off, and if you just walk out of a consultation because you are irritated, most doctors who are already short on time will simply let you go.

I've never had anyone give me grief about anything I needed to have done.  There have been people who have been inefficient at their job, but I try to be patient and imagine that they are just having a bad day, and I don't want to add to it.  Like most people, when I am nervous, I can be short, and when I catch myself doing this (and I am very mindful of it), I apologize and admit to being really uneasy.  People like to talk about themselves, so I'll direct the conversation to what a nice blouse you're wearing or some such thing.

Point is, treat all of these medical people as you would want to be treated yourself.

That said, you will certainly come across your share of incompetent baboons, and you will learn to avoid them.  The important thing is that you get the information you need.  You do not need to have any of these people hold your hand if all they are going to do in the end is give you an ineffective treatment.  You are there to see to your renal needs, not to have a pep talk lacking in any good information.  Keep asking your questions; your queries are helpful to both patient and doctor.

[malaka]

I might have posted this thought already.  If so, I'm sorry.  Fact of life #1:  you are there for treatment, along with others. You are not there for a medical school education. If you get your lab #'s, and biopsy results, you can do quite a bit of self-education. 

Fact of life #2:  with this information and self-education, you can formulate cogent questions to as the doc.  It helps to write them down to remember to ask them properly.

Fact of life #3:  your doctor is not a psychic. Do no ask "how long do I have?" since the doc has no way to predict in any given case.  A better way to ask is "for patients with my condition and status, what is the long term prognosis?"  Docs work off statistics, not with crystal balls. If a therapy has a 50% response rate, the doc has little way to know if you'll respond or not, for instance. The doc should, however, tell you if asked what the response rate is for a chosen therapy.


My experience:  one third of patients got better, one third stayed the same, one third declined and needed transplant or dialysis.  No way to accurately predict which group I fell into. I drew the short stick, as I recently learned.  But I cannot fault my nephro for not being psychic.

[jbeany]

  How do you all handle your doctor's and staff when you do things like this?  Do you keep your own records and bring things to the attention to the doctor?  Should I even do this at all? 

Yes, you should.  Always.  You need the information to keep yourself as healthy possible.

You need to treat doctors the same way you would anyone else offering you a service.  If you can't communicate with them, you need a different one!  If you have to stand up and walk out, walk all the way to a new doc.
There's also a trick to becoming politely persistent.  You need answers and you deserve them.  You can smile nicely - and still keep nagging for answers.  But, as malaka pointed out - they are human, not psychic, so some questions won't really have answers. 

And no, they don't notice everything - it's not possible.  I'm speaking as someone who had to self-diagnose her own gastroparesis, here.  I saw the doc once a month for half an hour or so.  Telling him I was throwing up all the time wasn't enough information for him to diagnose a cause.  I had kidney failure - that was cause enough.  Connecting the pattern that showed I was throwing up high-fiber foods, and heavier meals, especially those eaten not long before I laid down was up to me, and I connected that pattern with gastroparesis because of information I found online.

Most of all - don't let 'em intimidate you.  I know what my IQ is.  Just because I didn't use it to study medicine doesn't make me an idiot, and I won't let them treat me like I don't know anything either!

[Dannyboy]

I pretty much agree with all of the previous comments.  Knowledge is power, and doing "parallel" research is always a good idea....by that I mean anticipating where possible options or explanations your physician may offer you, and be informed about them.    Lots of great information around here on IHD.     I'm always able to get a copy of my labs by just making sure they show "copy to patient" on the lab form, just like they send copies to my primary care doc too.

So I have my lab results in hand way before appointment time, and have time to research any new "out of kilter" results, so I'll be up to speed with what the Neph may say or recommend.

Doctors and their staffs are people of course, and there are some (fortunately a very few in my experience) who are total arrogant jerks, but most are trying to do a good job.   But they deal with a wide variety of people and personalities......and I always think I get the best from them by remembering that fact.   I do what I can to show I'm an "involved patient", doing my homework, showing up on time for appointments, interacting with staff in a business-like manner and so forth.    Yes, I am their "customer" and they should be doing their best for me no matter what, but it's just human nature for anyone, (doctor or not) to find it easier to do their best for me, maybe go "the extra mile" when they feel I'm "in tune" with what they're trying to do.   

My two cents.
---Dan

[MooseMom]

I thought about this thread today.  I am trying to line up all of my referrals (I'm on an HMO) for my round of annual cardiac tests to stay on the list.  This is my first year doing this.  The transplant center were VERY LATE in sending me the scripts for the tests, so there is no way I can meet their deadline, but that's not my problem.  Anyway, once I got the scripts, I hand delivered them to my PCP so that they could get with my ins co to issue the referrals, and only then can I schedule anything.  That was back on 29 July!  I got a phone call today from the referral lady at my PCPs office telling me that they are still working on getting the referrals for me; there was one blood test they had never heard of before, so they had to call the transplant center to ask about it, and they are still awaiting a reply.  Long story short, this lady went out of her way to call me and tell me what progress they had made and for what they were still waiting; she didn't want me to think they had forgotten me.  I thought that was incredibly kind and thoughtful and I told her so.  I told her that having a chronic disease like this meant having to involve whole armies of people who weren't always quick to do what they were supposed to do and that I was very very grateful for anyone who would go the extra mile to help me out.  She was clearly surprised and pleased that I had recognized her efforts.  So, my point is that you can do a lot to create helpfulness.  Not always easy, but worth the try.

[Willis]

I want to add...even though my first neph of many years is an excellent and caring doctor and one of the best I've ever dealt with, if I hadn't done my homework and been assertive I'd have most likely wound up doing in-center HD 3 days/week 20 miles from home. That is just the default option. I was already scheduled for my AV fistula by the time I decided PD was a better option...for me. I went ahead and got the fistula done as a backup option and all the doctors involved thought that was a good idea since for some reason they still view PD as something strange and experimental. When starting PD I had to change to a new nephrologist who specializes in PD. There seems to be two "camps" out there when it comes to modality so people need to be aware how each doctor's normal bias will effect decisions about such things.

 

[MooseMom]

Willis, you are right.  The first time that my neph mentioned dialysis, he said he thought PD would be a good option for me.  He never mentioned in-center dialysis, for which I was grateful.  But as I did my own research, I came to believe that NxStage would fit better into my life.  My neph has been very good to me, but the truth is that he doesn't live with me and knows nothing about my life and which modality would fit best into it, and I don't really expect him to have that knowledge.  Like Willis said, incenter 3xweek D is the default mode.

It's not easy to take complete responsibility over your care at all times.  We are sick, and sick people can't expect to be up to this task 24/7.  We have to trust our medical team somewhere along the way, but if it is possible, take charge when you can, and make sure your team knows you can take charge.  That way, when you are ill, your docs will know more about what you are wanting from your treatment and can act accordingly if you are not able to give them orders!

[YLGuy]

Fire them! When my kidneys first failed I was thrown into this world without any prep.  I had no idea that my kidneys were going south.  I went into the ER with what I thought was pneumonia only to be told I was end stage renal failure and was starting dialysis immediately. I was assigned a neph and a couple of months into dialysis I found IHD.  After reading a number of threads I found that I had a ton of questions for my neph.  I certainly had more questions than could be answered in the 10 seconds he spends with patients during his rounds at the dialysis center.  I called his office for an appointment and was informed by his staff that my neph did not think my questions were that important and could only get an appointment over a month away.  I immediately found another neph that serviced my dialysis center and his office made me an appointment within a few days.  I called my old neph's office and told them that I thought that my old neph appeared to have too many patients to give them the proper care and that I found a new neph that actually would make time for me.  The next day the head of the old neph group came in and said that he would see me (they did not want to lose the income).  I thanked him but said that I already had an appointment.

Short story, long...It was the best thing that I ever did.  I love my neph.  He sees me in his office whenever I request.  He answers all of my questions.  He has even seen me in his office on his day off.  He told me to have his office call his cell phone and he would leave home and meet me at his office.  I would suggest that you shop around.

[jbeany]

That is just the default option.

Yeah, like all people, docs form habits and keep doing the same treatment as first choice over and over.  I had one who automatically wrote scripts for the same antibiotic for all his patients whenever they needed one.  Except it was one I couldn't take because I always threw it up in minutes.  I had to remind him, "Not Levaquin" every time.  We are all creatures of habit, but that doesn't always work for patients.  We weren't cut out with cookie-cutters!

[Cordelia]

First of all, it's your right to ask questions, never doubt that you don't.

Yes, it can be very helpful keeping a diary/record. In the unit I'm in, I see a different doc every month after my labs. What one doc says, another won't, etc, well, you get the point. It's like going in circles sometimes with that alone. I hear you. Keep a log of everything. You can always go back on it when you need to.

Never give up and keep asking til you get your answers. Sometimes this takes persistence, not always with 'one isolated' visit.

Lastly, there is never such a thing called a 'stupid question' All questions are pefectly valid!

[jagermiester]

Thank you all for your input.  I have fought doctor's for so long that some times I get tired and I just need to back up a minute, gather myself and keep going.  When I was 6 months old I was burned over 35% of my body with 2nd and 3rd degree burns.  The doctor's said I wouldn't make it, but I did.  Then they said that I wouldn't be able to use my left arm, or at least lift it up.  At 12 I had plastic surgery and was able to use my arm.  After another surgery I got a staph infection in the donor site (for plastic surgery) and the doctor's said I wouldn't be able to run.  Well, not only was I able to use my arm and run, but I joined the Army. 

When I was having my physical, the first doctor wasn't too sure about my scars and asked the head doctor to come in and look at me.  He had me do some range of motion stuff and then he sat back and looked at me and asked... "You don't think there is anything wrong with you, do ?"  I said "no".  He said, "then there isn't anything wrong" and signed my papers. 

Attitude has a lot to do with healing.  Doctor's do not know everything.  I just have to remember that and go with my gut and fight.

[malaka]

My nephro remains puzzled by my membranous nephritis -- keeps searching for a cause.  So far, pancreatic, liver and lung cancer have been ruled out.  The second biopsy revealed little (at least that I understood) but now I'm being sent to a hematologist/oncologist.  A little research told me why:  he's concerned about me having some form of chronic leukemia!  My WBC has remained elevated despite being withdrawn from corticosteroids and from the anti-rejection drug whose name slips my mind just now.  What's next?  Blood testing and maybe bone marrow biopsy.  Yikes.  Chronically elevated WBC is a sign consistent with, but not diagnositic of, chronic leukemia. 

And, to his credit, he suggested that I should consider home dialysis.  I like the idea (except sticking myself, of course) as I'll be more free to move about and do what I want to do.  I'm officially Stage 5 now, but creatinine dropped to 4.2 from 4.5   A blip, but its in the right direction.  The only thing driving me crazy is waiting for the call for transplant evaluation! 

[malaka]

Good news, I think.  Hematologist/oncologist does not think (pending blood test lab resluts) that I have leukemia.  No idea wy WBC is elevated, however.  Now for the strange part:  he keeps in his office a Portugese Water Dog named Bruno as a "therapy" dog.  So, in the examining room,there's me answering questions and petting the dog which loves attention.  During the physical exam part of the visit, the dog simply went to sleep.  That dog has it easy.

[Gandalf]

Think most of the Nephs are compassionate and caring human beings, but just an hour in the ICU makes it clear that they have hundreds of patients, many of whom are in dire situations.  I can only think how difficult it must be to shut off after a day at the office!
Nevertheless, for me as a patient, like most people I would guess, I obviously feel that my case is important and deserving is full attention when I see him, and my questions will bother me until I get a credible answer, whatever it takes. 
Have found that the research option works well; as does ensuring that I retain a degree of control about what is going on - it is, after all my body, and the Neph, while highly educated and caring is essentially a service provider, who is entering into a contract with me .....  So I think I have the right to expect certain things (focused attention, and really attempting to find a solution which works for us both), as does he (eg that I will try to look after myself and whatever).
Assertiveness is also critical - I used to think doctors were demagogues, with six sense perception and magician like skill.  Then I caught sight of their antics at Med School, which bordered our university campus!  It was pretty clear, they are deeply human, do make huge mistakes, and have bad days at the office, like us all.  shattered my illusions somewhat!