Re: [igan]Rob update/CY

[Guest guest]

Cy:

The frustrating thing was, Rob immediately bonded with him before the

medication issue ever arose. So he was a likeable guy. You would think

that being in a setting dealing with minors he would have his head on

straight. Dr. D, Rob's neprhologist, is the department head, so I'm sure

he will nip this behavior in the bud, so to speak. I emailed Dr. D. last

night and told him the whole story.

Yes, he had rushed in from doing another patient's biopsy. He sent in the

fellow first, and he asked what we were expecting from the visit that

day, because the results were not in from Dr. Kashtan. I said, well, they

should be in his chart, because Dr. D. had faxed them to me several weeks

prior!! I think he was shocked that I kept my own records.

As for your own experience, I think that some in the medical field like

to write off what parents know and have studied, because it makes them

uncomfortable that they are not as knowledgeable as they should be. What

did the attending have to say about that situation??

I tell patients all the time that they should not tolerate unacceptable

behavior from their doctors. The patient is the employer. It is

definately a give and take situation, and I do know an excellent

professional I work with who is sorely overworked. But he is always

focused on the patient who is in front of him, and gives them his

complete attention.

It reminds me of a story about fish. A little boy encountered a school of

fish that had gotten stranded on the beach. He was frantically trying to

throw them back into the water. Someone came along (and I always get the

story not quite right here) and said, you'll never save all those fish,

its impossible. You won't make a difference. And the little boy replied,

holding up a single fish, that " I can make a difference with this one! " .

They should be entirely focused on the patient in front of them!

When my uncle was dying, his GP wouldn't give him pain medication because

he had pneumonia on top of all his medical issues. He was thrashing about

the bed and in agony. I was his medical POA. My cousin (who is also a

nurse) and I had to almost tackle his doctor out in the hallway and

demand he be kept more comfortable. Our uncle did not want extreme

measures taken, and he had expressed this to the both of us just a few

days prior. We finally convinced the doctor by saying " you should treat

our uncle like you would your own mother or father...and want him to be

comfortable. " . he finally wrote an order for morphine and my uncle had a

peaceful death, which is what he wanted. But my uncle suffered for those

2 days before the order was written.

Rob hasn't really mentioned the doctor's appt. I am going to talk with

him some more this weekend and see where he stands. I think he was pretty

upset and shocked with the rheumy appointment and visit with the physical

therapist. They really read him the riot act about doing his exercises.

I'll see what his take is on things this weekend, and that is an

excellent idea to have Dr. D. have a talk with him. I think he would be

happy to do that.

Thanks for listening and your excellent advice. As far as having a

peaceful weekend, I will! Just being able to vent here to people who

truly understand does me immense good. AND, I am OFF tomorrow, sunday and

monday!! Have to go into work in a bit though, but it shouldn't be a

difficult day.

Happy New Year!

, mom to Rob, 15

On Thu, 30 Dec 2004 23:28:57 -0800 " Cy Webb "

writes:

Oh !

What an utter slimebag! How I HATE the " hadn't read the patient's

chart "

problem. This is simply just poor medicine. I ran into this frequently

with my husband's docs before he died and a good friend of mine runs into

with her son's docs. Assuming that you're not showing up in the ER with

an

emergency situation, the very least they could do is scan the recent

letters

and labs. I would definately write that email to Dr. D - who will

hopefully

read the guy the riot act. It is very hard being the parent of an

adolescent - when the adults around you act like such buffoons.

We ran into something similar once ( but nowheres in the same league as

the

bozo you encountered) when the docs at Packard sprung a resident on us. I

began to ask a question about C3NF - and the guy kept giving me answers

that

were appropriate for C3 (apparently h e never finished reading the

chapter in

his immunology textbook about complement). I refused to back down - and

he

refused to appreciate the distinction. After he trotted off to ask his

boss

(leaving me feeling very much like I was at the car dealers waiting to

speak

to the manager!), the attending came in. Fortunately, it's never

happened

to us again. I often think of Pierre's line a long time ago to the effect

that you're paying for the guy's experience - not necessarily his time (I

think Pierre said that once in response to patients complaining about

very

short appointments). At the very least, you should get the experience!

Would it be appropriate for you to ask Dr. D to have a one-on-one

conversation with Rob and steer him straight about the relative

importance

of meds? Do you think he'd be willing to give Rob a call at home? That

might help. I think you're standing your ground in front of Rob will

also

make an important impression. has seen me politely (and OK,

sometimes not so politely) question the docs and try to get an

explanation

(i.e. not blinding letting them put him on clonidine recently). I always

try to do it with the sense that adults aren't always right (no surprise

there) and asking educated questions instead of blindly following the doc

allows you to take better care of yourself. Our guys are at that

threshold

of taking care of themselves - which is a scary thing to contemplate.

As impossible as it sounds, I hope you guys have a peaceful weekend.

Cy

Re: Rob update

>

> I'm sorry I haven't been responding or posting very much. I do try to

> read the posts, but have had trouble keeping up. I finally was able to

> get a new computer, so that problem is solved. Unfortunately, the other

> admissions nurse in my department was suspended, and then had a

scheduled

> vacation, so I have been working and on call for the last 10 out of 11

> days. It has been very hectic.

> I did get Tuesday off to take Rob to his rheumatology and nephrology

> appts.

> Rob's regular nephrologist was out of town. I just love this doctor,

Dr.

> Devarajan. He is wonderful. Unfortunately, we had to go on and schedule

> with another nephrologist in the group, because we have to travel 120

> miles to the appts for rheumy and neph, and I do not like to take Rob

out

> of school, so I wanted him to be seen during Christmas break.

> This nephrologist, who had never seen Rob before, made me so mad I

> thought I was going to blow a gasket!

> We did have great news, the Cozaar is continuing to control the protein

> and blood in his urine. We were so happy to hear about that!

> The neph, on the other hand....started talking to Rob about how

> proteinuria damages the kidneys. Then, he says, at some point, Rob

could

> go off the Cozaar just to see if the hematuria and proteinuria would

> still occur. This led him into talking about how he knows that lots of

> patients don't take their meds, and its ok if they do that, and he

could

> take a drug holiday during the summer, and just see what happens!! Rob,

> of course, absolutely LOVED this idea. I was livid! I looked the neph

> squarely in the eye, and said, I CANNOT BELIEVE that you just told an

> ADOLESCENT that its ok not to take meds! He hemmed and hawed around,

and

> then asked me if I was interested in having a definitive diagnosis. I

> told him that Dr. D. was fairly sure of the Alport's diagnosis, and

that

> Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he

> had not even gone completely through Robs chart and I had to fill him

in

> on many things. But, it was like he was out to undermine everything

that

> had taken place! Granted, it would be wonderful if Rob didn't have

> Alports, but the biopsy clearly showed irregularities, and there is no

> other explanation for what he has, other than diabetic nephropathy, and

> we know he is not diabetic. So this guy was absolutely irritating and

> maddening! I have been waiting to calm down (but I find that I just

keep

> getting madder!), I plan to email Dr. D and tell him just how disgusted

I

> was about what he told Rob. It is hard enough to get a teenager to take

> his meds, and Rob also has an exercise regimen he must do to keep

things

> limber (because of the ankylosing spondylitis). He faces his spine

fusing

> in about 10 years. It is imperative that he diligently exercise in

order

> to prevent it fusing in a 'bad' position. Meds are the one thing Rob

has

> been compliant with, but the exercises, no. But at least he is

compliant

> with meds, that is until Dr. 'HELPFUL' told him no need!

> The rheumy did read Rob the riot act about the exercises, so at least

> SOMEONE cares if he is compliant!!

> Ok, thanks for listening!

> , mom to Rob, 15

>

>

[Guest guest]

Good show getting that email out. It gives Dr. D a chance to remedy the

situation. My hat is off to you for having the department chief as your

doc!

With our guys, so much of it is modeling behaviors that will carry them into

adulthood. I never expected that parenthood would include include teaching

my kid to be a good medical consumer, but that is where the heart of the

matter is. It's probably a little easier for you and I because we've been

active in the field (before I did law, my background was in the biological

sciences). While I defer to their clinical experience in a minute, I do

expect explanations that make sense. In law, one of the more damning

criticisms you can make is to accuse someone of being too conclusory - which

is what docs often are.

In our case, the attending and I continued the conversation as if the

incident with the resident never happened. I got an answer that was

responsive to my question. We kind of ignored the resident who proceeded to

get littler and littler and almost disappeared.

A happy and healthy new year to you and Rob.

Cy

Re: Rob update

>

>

> >

> > I'm sorry I haven't been responding or posting very much. I do try to

> > read the posts, but have had trouble keeping up. I finally was able to

> > get a new computer, so that problem is solved. Unfortunately, the other

> > admissions nurse in my department was suspended, and then had a

> scheduled

> > vacation, so I have been working and on call for the last 10 out of 11

> > days. It has been very hectic.

> > I did get Tuesday off to take Rob to his rheumatology and nephrology

> > appts.

> > Rob's regular nephrologist was out of town. I just love this doctor,

> Dr.

> > Devarajan. He is wonderful. Unfortunately, we had to go on and schedule

> > with another nephrologist in the group, because we have to travel 120

> > miles to the appts for rheumy and neph, and I do not like to take Rob

> out

> > of school, so I wanted him to be seen during Christmas break.

> > This nephrologist, who had never seen Rob before, made me so mad I

> > thought I was going to blow a gasket!

> > We did have great news, the Cozaar is continuing to control the protein

> > and blood in his urine. We were so happy to hear about that!

> > The neph, on the other hand....started talking to Rob about how

> > proteinuria damages the kidneys. Then, he says, at some point, Rob

> could

> > go off the Cozaar just to see if the hematuria and proteinuria would

> > still occur. This led him into talking about how he knows that lots of

> > patients don't take their meds, and its ok if they do that, and he

> could

> > take a drug holiday during the summer, and just see what happens!! Rob,

> > of course, absolutely LOVED this idea. I was livid! I looked the neph

> > squarely in the eye, and said, I CANNOT BELIEVE that you just told an

> > ADOLESCENT that its ok not to take meds! He hemmed and hawed around,

> and

> > then asked me if I was interested in having a definitive diagnosis. I

> > told him that Dr. D. was fairly sure of the Alport's diagnosis, and

> that

> > Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he

> > had not even gone completely through Robs chart and I had to fill him

> in

> > on many things. But, it was like he was out to undermine everything

> that

> > had taken place! Granted, it would be wonderful if Rob didn't have

> > Alports, but the biopsy clearly showed irregularities, and there is no

> > other explanation for what he has, other than diabetic nephropathy, and

> > we know he is not diabetic. So this guy was absolutely irritating and

> > maddening! I have been waiting to calm down (but I find that I just

> keep

> > getting madder!), I plan to email Dr. D and tell him just how disgusted

> I

> > was about what he told Rob. It is hard enough to get a teenager to take

> > his meds, and Rob also has an exercise regimen he must do to keep

> things

> > limber (because of the ankylosing spondylitis). He faces his spine

> fusing

> > in about 10 years. It is imperative that he diligently exercise in

> order

> > to prevent it fusing in a 'bad' position. Meds are the one thing Rob

> has

> > been compliant with, but the exercises, no. But at least he is

> compliant

> > with meds, that is until Dr. 'HELPFUL' told him no need!

> > The rheumy did read Rob the riot act about the exercises, so at least

> > SOMEONE cares if he is compliant!!

> > Ok, thanks for listening!

> > , mom to Rob, 15

> >

> >