I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: stauffenberg on July 20, 2008, 05:39:51 PM
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As medicine becomes more specialized, the limited knowlege of doctors outside their field of expertise becomes more amusing. In no area of medicine is this problem worse than in renal medicine.
Once a few months after my transplant I was examined by the resident physician in the emergency ward of a hospital in a medium-sized city (80,000) who was surprised to find that my kidney transplant had not bein inserted in my body where the original kidneys had been located. Just today I was examined by an internal medicine resident in the hospital of a larger city (600,000), who asked me in all seriousness: "Now you say you have had a kidney transplant. Did both of your native kidneys fail or is one still working?"
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Yes, it has been funny (and of course very worrisome and it even appalls me) to hear the responses of doctors and nurses after they hear I have 3 kidneys. I usually get the question, which one did they take out. From doctors? This is sad.
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:banghead; sigh
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wow scary, what do you say to him and did you be nice or did you ripe him a new :sir ken; ...Boxman
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I was too shocked to react much. I just the opportunity to inform them about the process and let them know they don't take one out, just added another.
Last time I heard the question was from a nurse, an actual RN, employed by my insurance company that calls every 2 weeks to work on improving my health.
Okarol got it right. :banghead;
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I had to get an ultrasound on my bladder and I told the tech both my native kidneys had been removed and she didn't believe me. She actually checked with the ultrasound...
"Yeah, you weren't lying...they're gone!"
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I feel lucky that my "primary" doctor knows just enough not to give me the wrong medications with my renal failure. It really is sad when the patient knows more than the doctor about his/her condition!
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A freind of mine asked: "What do you call the guy who graduated last in his/her medical school class?"
"I don't know. What?" I replied.
The answer was very simply and tragically, "Doctor".
If you keep this in mind as you glance at the name tag on the white coat, it sets you up not to blindly trust the credentials of the person who cliams to be a "doctor". Way too often that person was not the highest card in the deck! You've got a 90 percent chance they were in NOT in the top 10 percent of their class!
Stauf, it appears you go the one that nearly flinked out of med school by mail!
-Devon
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I don't have any funny story but all of the above is so true. In the hospital, doctors have tried to prescribe meds for Randy and I have had to demand...yes, demand...that they wait for his neph to come in, and explain to them that Randy can't take just any old medication. They say "Oh, well, of course you're right. I'll call his nephrologist in." DUH.....
I've also had to enlighten the hospital dieticians , AND the neph office nurses, about the renal diet.
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I dread having to go to my gp with anything non renal as she justs waves her hands in the air and says you really need to contact the renal unit about it ..eg sore throat , sore ear or whatever ! My renal unit then says this is a matter for your gp to sort its not renal related ! By the time i have finished going round and round then dam things healed on its own !!!
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Oh my gosh! I thought I was the only one going through this mayhem!
My pcp says the same thing.. call the transplant dr.. the transplant dr says go to your pcp :banghead;
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AND this is why they call it """Medical Practice"""....thank God for this site. I have had several non-renal nurses ask me, now what is that scar from? and why can't we put the BP cuff on that arm? I really don't want to go to a hosp unconcious or is this when we should be writing on our body with permanent markers?
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I'm having a hard time relating to the comments about PCPs. We have a great PCP. He listens and seems to do his homework. We found him pretty early in his career and have been going to him for 25 years. On the other hand, I wasn't so happy with my ob/gyn and shopped around until I found one I like.
If you have the option to change, you should try to find someone that you have confidence in.
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One of my favorites from an ER doc when I told him that I had had a transplant and recently diagnosed with cytomegalovirus (CMV), "Well, if I called it a rhinovirus, you'd still only have a cold" :Kit n Stik;
Thankfully my GP worked on an Indian reservation in New Mexico for nearly ten years, and is well-versed in kidney disease and dialysis. I have not seen her since the transplant, so I don't know how she'll be with that just yet. :)
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I don't think of doctors as infallible. If they were, they wouldn't be human. There is so much to know about so many diseases. That's why there are specialists. I'm not saying that medical professionals shouldn't know the basics and more. But, there are great medical professionals who work hard to stay current and do a good job and it's not fair to lump them all together.
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I tread lightly venturing into a discussing bashing doctors, but I have thick skin so, here goes nothing.
Yes, the lack of ownership in different situations is frustrating not only to the patient, but also to the GP or internist that comes into the situation where the nephrologist says, "see your GP." Renal patients have specific limitations on medications and dosages that are outside of the usual practice of a GP. I can understand quite well why many GP's would feel uncomfortable dealing with many issues with renal patients especially when it comes to transplant and dialysis issues.
Unfortunately, the unseen partner in many of these disconnects is the silent lawyer lurking in the background ready to jump down the throat of a GP that steps outside of his practice limits. A lawyer can readily "prove" that simple accusation when any renal patient or transplant patient that has an adverse outcome whether everything was done well or not when a GP treats a patient without consulting the specialist. I believe that this is the underlying problem where no one wants ownership. The nephrologist is inundated taking care of nephrology issues and often cannot take care of the simpler issues. Unfortunately, the GP is sitting on a minefield of medical legal liability for simply caring for a "specialty" patient when viewed by the lawyer's 20-20 vision in retrospect.
I have certainly been in the position where a patient comes to me telling me such and such a specialist told me to see you for this. Most of the time, I would have to call that specialist and confirm treatment options with them any way which ended up been a poor use of time for all of us partly because the patient would leave out some of the details of what the specialist was concerned about simply because they did not understand what the specialists concerns were.
Further, transplant medicine and dialysis are not part of the usual training for an internist. Once again, with Mr. Lawyer lurking over the shoulder of every patient encounter, most of my colleagues would not venture into these treatment changes or nuances. In fact, by standards of practice through the credentials office, that could potentially be malpractice to venture advice on issues for which a doctor is not approved to practice.
When a physician practices in a hospital and outpatient setting, there is a list of specific diseases, conditions and procedures that the specific specialty will handle. In fact, a detailed list of those conditions and procedures are specifically listed on credentials paperwork, and then signed off and initialed by the requesting MD and the head of the credentials committee. Therefore, dealing with specific complications of transplant medications is outside of my scope of practice as an internal medicine specialist and I have and would absolutely defer that to the specialist.
I do hear and understand the frustration of going through these issues as a CKD 5 patient and as a physician who must at times now educate my own physicians on specific issues related to optimal dialysis. In a perfect world, every doctor would have perfect knowledge and we would put lawyers out of business very readily. Unfortunately, I see no chance of that happening any time soon.
My main point that I would like to make, is that some of the issues discussed in this thread relate to standards of practice for these different specialties. Within the limited scope of practice of a GP and internal medicine specialty, there is a huge, huge reservoir of information that must be mastered and practiced effectively. For a GP to deal with dialysis issues and transplant issues directly is a potentially dangerous place for that MD and most will simply avoid and defer to the specialist. Legally, this is what the law requires for dealing with patients that are beyond the scope of practice of that specific MD.
Once again, I am treading lightly over this thread, yet being able to see both sides, I must plead that the one month of renal training I received in my internal medicine training program did not prepare me at all in transplant and dialysis issues. We simply left those issues to the practice of the surgeons and the nephrologists whose scope of practice includes patients with these issues. One of the most important parts of learning to be an effective MD in your own small area of expertise is to know your limits and be very careful in not exceeding those limits. That is often a difficult call on where to take care of yourself or defer.
Unfortunately, this will often lead to the fractured and disconnected care that many have complained about on this thread. I have no simple solution to this problem. Practicing medicine in America today is not an easy task, and being a CKD 5 patient is likewise often a frustrating experience. Perhaps understanding the limitations on scope of practice and patient expectations will be helpful understanding the disconnect listed in the posts above, yet, at the same time, a willing MD can and have learn much from caring for patients with unusual conditions but must still tread cautiously and defer when it is appropriate to defer. Practicing outside of the scope of practice is a very common error made by MD's. This may seem like a simple no brainer issue, but having been there myself many times, it is a difficult issue to deal with when the patient shows up in my office, saying the specialist told me to come. Wow, there have been many times where immediate actions were required with consultation of the specialist that sent that patient to my office in the first place. Yet that perhaps is the best way to deal with this issue. Speak to the specialist at the time when seeing the patient.
In any case, I understand that this is a loaded question for patients, but is likewise a very loaded issue for all of the MD's involved as well. Perhaps if we could go back to the days when docs saw 10-15 patients in their office, life would be better for all. The 40-50 patients seen per day leads to many poor patient encounters with poor physician satisfaction as well. We are all in this together.
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I can see the run around. Btu why can't the patient treatment be a team approach with the neph and GP working together along with the dialysis center to provide treatment?
Oh yeah! Dream world! Girlie! Wake up, smell the coffee!
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I am seeing my family doctor, my specialist in both kidney and liver, and transplant doctor. :banghead;
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Randy's doctors have tried the team approach. They keep telling Randy that all info on him, from all the specialists and labs, needs to go to his GP.
But, in defense of his doctors, this is Randy's responsibility and he does not come through. And he does not tell me. So I just started making sure it happens.
It's the on-call hospital doctors that we've had the most trouble with, although there has been one really good one.
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I have had good and bad experiences. I don't mind questions from doctors about my transplant. I do get a little upset when local hospitals wouldn't consult with transplant clinic. I am going to try one more local hospital and if I have problems, I will make the hour and 45 minute drive to the transplant clinic.
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Wow, Hemodoc, thanks for the information. Although they will never cease to be frustrating, the problems that patients encounter make a little more sense when placed in this context of credentialing, scope of practice, litigation, etc. It's really too bad that we're all at the mercy of a crummy system.
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The problem we have encountered with my husband's back surgeries and Jenna's kidney problems is that there is no "clearinghouse" for care. Doctor's ask "what did you decide to do?" and we say "What would you recommend?" and they say "It's up to you" and we think 'He's the professional, who the hell are we to make these decisions??' Then the GP doesn't really have the expertise to advise us, so it's a crash course in learning and trying to figure out what to do for the best care. I feel like I have been in kidney college for 7 years, and I still am learning every time something comes up. I just wish there were doctors who served as advocates that could help guide you, instead of being so neutral in an attempt to avoid a lawsuit.
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Dear okarol,
There truly is an art in informed consent as in all things in medicine. Most docs have a personal opinion on what they would do in certain situations but you must be very careful to represent all risks, benefits and alternatives in a truthful manner. Some docs are better than others in explanations and information resources.
On the other hand, thank the Lord that you have learned as much as you have. Dialysis issues in many ways are a lost step child as far as nephrology goes. Most dialysis units are truly run by the nurses with the overview seen by the docs, but the details are often left to the nurses and techs. Nephrologists do encourage the transplant route so much that the optimization of dialysis is not given the due time that is needed.
I am learning that the details of dialysis is where the survival is at. Most nephrologists leave this task to the nurses, yet if your clearance is over 1.2, then that is "OK" and you will probably not getter anything better without knowing the variables yourself and push the nurses and techs and docs to do it better. If you have a nephrologist that does it all, hang on to him and don't let him go.
Self preservation demands an informed dialysis patient and an informed transplant patient. Sadly, I must readily confess that is information that you most likely will not get from your doc. I agree, it is not the way it should be, but the reality is that many of the patients on dialysis will end up better informed. Dialysis patients, in my opinion do not get the attention of detail that I saw in many other disease processes. Why, I am not sure, but it is different than many other disease procedures I have been involved in. I could only speculate on why this is, but I see it myself on this side of the aisle and I am trying to do my best to raise the collective conscience of my profession in what ever manner I can. I would highly recommend a grass roots movement started by the patients themselves such as Bill is doing in his many dialysis related tasks. If we don't speak up, the system will, and has run over us.
I cannot disagree with any of the frustrating events noted on this thread now that I am on this side of the equation as well. IHD could play a great role in this sort of grass roots movement. It is time , it is past time for this to occur.
God bless,
Peter
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Marvin and I have seen and heard a lot these last 13 years that he's been ESRD and on dialysis/transplanted/back to dialysis. We have found that we know as much as about dialysis, transplantation, home hemo, etc. as many doctors and even more than most. We know so much about it because we have taken the initiative to find out -- we read, research, ask questions, etc., etc., etc. Like Okarol, we feel like we've been in "kidney college" for 13 years, and, yes, we're learning new stuff every day, too.
We have been frustrated when an ER doctor INSISTED that "home dialysis" meant PD. He didn't know you could even do hemo at home. (He wasn't satisfied that Marvin wasn't on PD until Marvin pulled down his pants so he could see -- NO PD cath!)
Home hemo is new in our area (Marvin was the second patient trained in the Wilmington, NC clinic -- 60 miles from us). When he was hospitalized at Duke Hospital (Durham, NC) last December, his neph gave permission for me to go in the in-hospital clinic to cannulate him (buttonholes! love them) even though they have a strict no-visitors/patients only policy. One of the new nephrologists on staff came to me and told me he had just been promoted to the head of the home hemo department at Duke (it's really new there, too). Then, he asked if he could watch me cannulate Marvin for treatment. He asked all kinds of questions while he was watching. I thought, "This is really strange. Here I am, a high school teacher, and I'm explaining and demonstrating buttonhole cannulation for a nephrologist."
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Actually it is not strange at all that doctors have been learning of disease and treatments at the patient bedside for over a hundred years. This is the William Osler method. Having a knowledgeable patient is a joy to have as a physician to better learn. I suspect that what your nephrologist learned from you that day will help hundreds if not thousands of patients in the future and even more if he is able to teach the same to other physicians.
The bedside method of teaching developed by Dr. Osler is the manner in which most of us docs learn. The time that he spent with you will be a valuable lesson for him and many others over the years. This is not in the least unusual, this is the method of physician education. Understanding how a doc thinks and learns underscores the need for educated patients to pass that information on to as many docs as possible. With the many expert patients that we have participating on IHD, a real grass roots movement patient to doctor is quite possible.
Patients have been teaching their docs for over a hundred years. Nothing unusual to the story at all.
http://en.wikipedia.org/wiki/William_Osler
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You can always ask a doc "what would you do if it was your husband/wife/mom?"
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I respect a doctor that looks at me and tells me they don't know an answer. As long as they point me in the right direction. My family doctor will tell me to call transplant if she is unsure of anything. My nephrologist is wonderful too, if he doesn't know he'll work to find out. As am so fortunate and blessed to have the great doctors I have now. It wasn't the case in 2005, I was terrified. When I was sent to Pittsburgh I thought I was a goner. Around here being sent there was a last resort. I am not saying the hospitals around here aren't good, I just don't think it is a good choice for me.
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Our trouble comes with medications.
We have the diabetic doctor, cardiologist, nephrologist, internist, urologist all prescribing medication. We have also moved so most of these doctors are new. No one wants to change medications that someone else prescribed, but they will add new ones. We have finally gotten our nephrologist to look at his medications and try to eliminate some. She is also working with our cardiologist but now the cardiologist says, "she is taking care of your medications and watching you" . He has backed off on monitoring the medication. Now he just does testing and send his reports to her.
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On the one hand there are clinicians who react with terror when they see a renal patient come into the room, with the result that they won't make a move without the nephrologist, which means that visiting them is a pure waste of time, since ultimately the nephrologist is forced to do all the work, even for issues he initially sent you to the GP to handle because he felt they were too routine to justify wasting his 'precious specialist' time.
On the other hand there are the 'bull-in-a-china-shop' doctors, who know far less than their patients and nonetheless persist in wreaking havoc with the patient's life by prescribing all sorts of inappropriate or ignorantly dosed medications, at the same time as they wave off any protest as sheer patient ignorance compared to their own omniscient stupidity.
Then there are the 'blame-the-patient' doctors, whose first and last response to every failure of a prescribed treatment is to accuse the patient of not following their instructions, since there is no way their own genius or that of the Medical Establishment can be in the least bit imperfect. These characters only went into medicine because all the student places at the Police Academy were full that year.
The most ubiquitous sub-species is the doctor who subscribes to the motto that when medicine comes in the door common sense should fly out the window. The main impact of the technical knowledge this type of character has is to drive out of his consciousness all ability to think logically. A paradigmatic example of this sort are the doctors who insisted that, prior to my transplant, I undergo a 12-hour fast to determine my fasting blood sugar level "just to get a baseline." I reminded them that as a type 1 diabetic I always had to take a basic dose of long-acting insulin to cover background metabolic processes, whether I was eating or not, so that I always had some insulin acting 24/7. This meant that I could give them any "baseline" value for a fasting blood sugar they wanted, depending on how high or low I set the background dose. They wouldn't be measuring anything real about my physiology, but only something entirely arbitrary and artificial, i.e., how far I had drawn the plunger down the barrel of the syringe. "Oh," they said, "that's the first time a diabetic patient ever mentioned that." And to think, 40% of transplant patients are diabetic!
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We have been in "kidney college" for 11 years!! We always ask questions, question the reason for changes, do research. When hubby was in center he actually told the nurses things they didn't know lots of times!!! One neph he had was constantly pushing transplant. Started to get on hubby's nerves one day hubby had had enough. He told him that when he was ready to have a transplant he would let him know and not to ask him again
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I am fortunate to have just started going to a new PCP that actually has a clue of what is going on in the human body. Not only being an MD, he has a Master's in physiology, so he gets most of it. He does thorough research on any and all drugs before prescribing them to me. He is faculty for the Univeristy of Kentucky and teaches physiology for them, so he has full use of their online pharmacology and medical databases. If anything is questionable, he will ask me to contact the tranpslant hosptial to get the drug approved, because he sincerely doesn't want to do anything to hurt me.
I have been through all of the rest of them...know it all's, you know nothing's, it's your fault's, etc. Hopefully I am done with all of those idiots. :Kit n Stik;
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We saw Jenna's transplant surgeon last week. I asked him about the idea of reducing or eliminating immunosuppressants and where research is heading. He gave me a 3 part answer and when he was done I said, "Well, that's good, you've confirmed everything I have been able to learn about the subject." And his reply was "Oh good! Then I have passed the test?" He is bright and good natured and takes so much time with us, I am always pleased when we leave Scripps Hospital, knowing Jenna's is probably getting the best care she can.