[helloos]

Hi everyone.

I am not sure how to handle this one, any input is appreciated.

You probably know that I went to see the kidney doc who did the 24 our urine because 4 of my tests since January had come back with 1+ protein and RBC.

Last week my rhemo called and said that you should only leak less than 300 milligrams and mine was 800 mill. and was abnormal but not too abnormal for kidney biopsy.

Well, the kidney doctor called me and said that my test was normal. I said that the rhemo said 800, she said no, the formula you use brings it at 80 ! Not 800 ! She said I am not judging anyones competent and it can sometimes be misread. She said that she still wants to review all my records from rhemo and keep a watch. She said I do not have to be concerned as the 24 urine is more accurate but that we did need to follow it as it shows up in the other urines. Maybe some inflammation during that time, etc. etc.

So, I know I said my rhemo was kind of "off" the day of my visit, suggesting a drop in Plaquenil, telling me to get sun when I messed up with saying I can't take Vit. d and then further said oh, no the sun makes you sick and all along I meant Calcium not Vit. D. He seemed like he was ill or ready to drop that day. I understand we all have our "off" days and make errors at work,etc.

But - this is an error on his part - and I am just wondering how to handle it? I was going to call and just say that the kidney doc said 80 not 800 and for him to recheck. Let him recheck and say yes, I was wrong. I am not one to call and be mean about it. But I am wondering if he is misreading this - is it ok to make an error once in a while, or am I doomed and have to question his ability to treat me, etc. etc.......... anyone have that happen?

So my hubby says, yes it is a big no no, but people make mistakes and he should know he did, but not to mistrust him because of that.

My choice of rhemo's is very limited in my area and have little to none.

Help and advice please 8)

 

[KarolH]

Paula,

In my humble opinion I think to err is human and we all make mistakes. We also have our "off" days, even those without Lupus.

That being said I think that this mistake should be forgiven yet if mistakes continued to escalate in the future then that would warrant concern.

I would call the office and just bring it to the attention of the doctor. Possibly it is listed wrong in his records. Whatever the case I would call and nicely explain the situation to them.

If he continues to make mistakes then you need a new doctor yet you mention that your choices are limited so what is a girl to do???

Let us know how you proceed with this and good luck.:wink2:

 

[Maia]

It sounds like he made a mathematics error, although that would be very strange too since most labs do the math and then report.

I can certainly understand your apprehension about all those things that happened that day. It certainly does not inspire confidence. The good news is that you are well educated on lupus and can watch out for yourself to some extent. I agree with Karol that were it me, I'd probably give him another chance but if mistakes continue to pile up then I'd find another rheumy. Especially since your choice of rheumies is kinda limited & to this point he has done OK(?).

I could also understand if this makes you want to find a new rheumy just to see what else is out there too. A second opinion probably couldn't hurt and then you'd know about your other option.

Good luck!

 

[peonyprincess]

Heh Paula...............

First of all, it is wonderful that your 24 hour urine came back like it did. And as always, it is best to continue to monitor the kidneys, especially when there is some protein spilling. To keep on top of it will allow you the ability to take control before something gets out of hand.

Now, as for the error from the Rheumy concerning the lab results. I used to work in a busy ICU/IMC unit for which I was one of the night time supervisors. Our ICU was a 16 bed and our IMC was a 54 bed. Depending on the patient load in each unit would depend on the amount of nurses that we had on the floor. You could count on an average of five in ICU and eight in IMC. You could count on average 7 admissions a night and in the middle of the night you may have to transfer patients to a regular floor. I was expected to know everything about every patient and that included any and all labs. Making a mistake t me was unexceptable because we are dealing with peoples lives and as a professional we are held to a higher standard. Now, is that the way it happens, no. Just because I am a professional doesn't take away the fact I am human. With that I would call the Rheumy and tell him that the Nephrologist gave you different information and that you would like him (the Rheumy) to review the labs again to make sure that you have your numbers right and that you understand the findings. This way, you can allow your trusted Rheumy a chance to correct himself. Now, I am not excusing him for making an error because like I said, I am not real understanding of getting patients information confused, etc, however, I know it happens. There is in my opinion no need to switch docs that you are comfortable with and who knows you just because he was having a bad day. Granted, it can be a big deal, but in this instance, it caused no harm. It could be a big deal to change docs and deal with someone you don't know and could be uncomfortable with. Sometimes you have to weigh the options and decide what is best.

Here is a little story that is true. A doc came in one day and signed an order that he agreed that his patients leg should be amputated because it was necrotic related to Diabetes Mellitius and Obesity. The patient went the next day and had the amputation (below the knee). The third day the doctor came in and checked on his patient and came out and started to berate the nurse because he said that the patients weight was incorrect and that he would think that an RN would be able to at the very least weigh the patient. The nurse asked what was wrong with the weight and the physician answered that there was 30 pound weight difference and there is no way that could be correct. The nurse quietly put down her stethoscope and leaned into the physician and whispered in his ear that the day before the patient had his leg amputated and that alone accounts for the weight difference. The doc looked at her and told her to go to **** with a smile. That is a true story that occured five years ago and I asked that doc to take over my care and I have never regretted it.

Nancy

 

[Jesse88]

I agree that you need to give your RD another chance. We'd like to think health professionals are mistake-proof, but that's an unfair burden to put on them. If you're generally happy with his care, let this go but stay on top of your blood work and self-care (we all should anyway) and continue to educate yourself about your condition. If you start to see a pattern of mistakes, that's the time to switch doctors, even if it means further travel. BTW, I'm so glad your 24 hour test came back with a good result.

 

[JoD]

I give all doctors one bad visit. If there is a second bad one, I drop them.
I can remember when my son was still an infant and he had been discharged from the NICU. He had follow up visits in the neonatal clinic. His doc was wonderful but this day he wasn't making mistakes but just didn't seem to be paying attention like I was use to and even a little bit distant.
Turns out he had just returned from the NICU and one of the littlest fighters had lost the battle.
I was grateful that he valued life that highly.
On the other hand I have just dropped two of my doctors. The hematologist was over an hour late at the visit in Jan. but at least someone came in and let me know she was dealing with an emergency about 20 minutes into the wait. In June, I waited 40 minutes and then got up and left. I told billing I did not expect a bill for services not rendered. have not been contacted by her office in the 4 months since then. I have also dropped the endocrinologist.
He was treating me for Vit D deficiency and hyperparathyroidism. Treating is the wrong word. He would order a boat load of lab tests and never responded or contacted me about about strongly abnormal tests ( including an abnormally high fasting blood sugar, even though every visit he was told about the strong maternal diabetic history). Bone scan came back with osteoporosis in the spine and there still has not been any contact. I deserve better and it is up to me to make sure I get it. I like my rheumy and internist very much and will go to them for suggestions to replace these doctors.
Joanne

 

[sam101360]

I am so glad your 24 hour came back OK. I took leak 1+ to 2+ and RBC more than trace, 3 out of every 4 tests (but 24 hour comes back high normal all the time) - sonogram shows no scarring so just watch and pray.

As to the Dr. you are right we all have "off" days and make mistakes. At least it was the other way...Imagine if he had said 80 and it was 800? Thank heaven for good errors and follow-up with Kidney Dr.

Here's a story that happened to my hubby. All of our Dr's, except my Rhumy are golf buddies of my hubbies. They take excellent care of us and always err on the side of caution.

My hubby had his annual with the cardiologist...three days later we get a call that his cholesterol is 219 and that he has to start meds ASAP and he should come in for an echo cardio gram and a stress test. They called in a scrip...he took the pills for a month...and then off he went for the tests.

When he had the tests and got a call, the Dr. was pretty sheepish, his Cholesterol was 129 not 219...no harm no foul...he was fine and could stop the med if he wanted to, or he could keep taking it and never worry. We were so grateful that they reacted so quickly and took immediate steps we didn't really mind the small scare.

So...better an "off" day in your favor than in the favor of the Devil!

Stephanie

 

[Blue*Mist]

Your hospital stories made me think back to when I worked at a teaching hospital... I heard a student nurse passing meds for the first time say "We don't have any vitamin B12's can I give him 2 Vit B6's... you could hear a pin drop...

 

[mamascan]

Paula,
Wow, that would put my hive abuzzz! :hehe: I do agree with the others. Call his office and ask to speak to him or have him call you regarding recent lab results. If you are talking to him/her directly no one else is involved and he/she can be more honest with you than if his/her whole office thought he was making mistakes. See what I'm getting at?
Having worked in doctors' offices for years I feel this would be your best approach. Also follow peonyprincess advice about you are confused could he check he numbers again, etc. Gives him the op to find his own mistake.
When I first started getting sick in 2003 & 2004 and my PCP told me he thought I had lupus, after alot of meds not working and bad labs he sent me to a rhuemy who said definitavely I did not have lupus, my PCP apologised to me for his jumping on a dx. I brushed it away, and told him its better to test than not to test. four years later with many more labs and dx's I don't feel he jumped the gun. I recently found out 2 of my cousins have been dx'd with SLE. Which I will tell him when I go in.
But back to you, has this totally shaken your faith in him?

Hugs,
Michelle aka mama

 

[Raglet]

when is your next appointment ? Personally I would just mention it next appointment rather than ringing just to say that he made a mistake. I don't see a lot of point in that. Or I would send a 'good news' email saying that your level turned out to be 80, not 800. If you otherwise have a good relationship with your doctor, then I'd definitely forgive the mistake but as others have already said, if you start seeing more errors creep in then that is a different thing altogether.

Glad to hear that the kidney's are ok

cheers

raglet

 

[Clare.T]

Hello Paula
How about pretending you were advising somebody else, me for example,:hehe:
in this situation?
There's a difference between being a well informed patient capable of having a partnership with the doctor & 'taking charge' of one's disease and all that, and having to micromanage the doctor who's supposed to know what he's doing ! I have always thought your doctor was too casual for want of a better word, and not sufficiently involved but it's not me who has to deal with important things like travelling further.

There are mistakes and mistakes like understandable slip ups, they are not all the same value. This episode isn't only the proteinurea, it's the vitamin D/ calcium/ sunshine thing and the apparently whimsical suggestion of cutting back the Plaquenil. It's as if he's on the golf course all the time.

It's hard to comment when things are done differently in other places but my many lupus specialists over the decades and in 5 different countries have always organised the 24 hr urine collection themselves. I can't be sure but I would say that after two abnormal results, maybe even one, they would have ordered the 24 hr collection

Of course you don't want to jump from the frying pan into the fire and better the devil you know scenario, but I would certainly reconsider my options very seriously.

We do sometimes have to make the very best of what we can access but maybe the extra hassle of travel and so on would be worth being able to trust the specialist 99.99 % of the time, with the .01% being a very understandable minor slip up.

Good luck with your decision making

Clare

 

[helloos]

Such good advice and stories !

See you all make me feel so much better !

I think after reading all of your posts, I have decided to wait until my next appointment and discuss this face to face with the rhemo. Good idea.

You are right - horray -:excited: I am glad that the results were in my favor. I should have said that right off the bat.

I do know that I need to be followed thoroughly with the urine and I plan on discussing that with rhemo my next visit in December. He gave me the impression that oh good, the kidney doc will follow me now. Nope, she will follow but not often, so it is up to him to order urine and I will make sure he does. As I said, those things never showed up in all of my urines done for the past 20 years.

I have checked with my insurance company for other rhemos in the area and I do have choices that are further away. Right now my travel to this rhemo is about 40 minutes. The closest one would be an hour there on a good traffic day. I am concerned about my wellness to be able to travel there and back and would make my work schedule a bit more difficult too. But I will see if this rhemo messes up again and see what I think after my next visit.

Clare you are right and those things do concern me. I will see what he has to say for himself next visit regarding all those issues. I am going to make a list next visit so I don't miss a thing.

I still have not decided about Plaquenil dose dropping. I will wait a few weeks and then maybe drop 1/2 pill for a few weeks and see how things go. I have been on for a few years and perhaps he was thinking about the eyes but he should have explained his reasoning. I should have been more persistant about his reasoning too.

Thank you, thank you, thank you again !
:wink2:

 

[Maia]

I've measured +1 or trace protein on my last few trips to the rheumy and they haven't suggested a 24 hour collection for me either Paula. Overall, I know this is not likely to be near the nephritis range so I haven't pushed the issue, despite having a GFR just below 60 or just above 60 after going off NSAIDs entirely.

I do feel like something more should be done sometimes too, but also know it's pretty unlikely to be serious lupus kidney problems with a very slowly declining GFR and just trace to +1 protein on dipstick testing so I haven't pushed the issue yet.

Do you know if your healthy/ideal weight is under 115 pounds or so? If that is the case then a 300mg dose of Plaquenil may be better suited for you for the long term - although I think your rheumy actually recommended going down to 200 which would very likely be too low.