Interesting article on working with your doctors

[Bassetmommer]

Sometimes, you have to say good bye when your health is concerned. Why stick with someone who doesn't have your best interest at heart. It can be a fatal mistake.

medical-news.org/30-signs-y...

[rabbit01]

I should have changed my first nephrologist the first time I met him. Was so laid back he was almost horizontal!

[Bet117 NKF Ambassador]

Excellent..Thank You!

[Smokey2Gabby]

I agree. I've had two Nephrologist and both were disappointing. The first dismissed me because I'm in Stage 3b. The second prescribed medication that made my kidney numbers go down by 4 points. He also would not change this medication when I complained of severe negative side effects. I am going to meet with a new Nephrologist on Monday. I've learned to stand up for myself and to leave doctors who do not have my best interests at heart. Good doctors in the treatment of kidney disease are hard to find. They are out there but we must make a concerted effort to find one.

[Bet117 NKF Ambassador in reply to Smokey2Gabby]

Smokey 2 Gabby,

I am so sorry that you had to go through such a terrible experience. I however, do understand.

I had a similar experience and sadly blamed myself for over a year until I read articles such as the one posted here and had private support from two wonderful community members, family and my PCP.

I now have a different perspective on many things.

My first nephrologists, connected with a well known metro teaching hospital, was recommended to me by my then, endocrinologist. He tried to sell her to me as I was unhappy when she refused to explain why she was sending me for a cystoscopy, possible reasons for protein spilling and made unprofessional comments to the urologist who performed my cystoscopy.

She did send a note to my PCP , but was annoyed when I saw him to touch bases and sought a second opinion at his suggestion.

Her partner, next, was

condescending, and when my spilling rose to 4.5, put me - no discussion -on Tacrolimus which substantially lowerered the spilling within 6 weeks.

I was more than compliant and drove 1.5 hours every ten days for labs and he never called for his thoughts or checked in. Unavailable. He did one toxicity check.

He left me hanging- 4 months later when my spilling hit 1.5. called and told me that he would make no change, refused to specify when to make an appointment and when asked what would improve my albumin levels, he did not respond to my offer to see the dietician, told me to "buy a book" and

slammed the phone on me. Neither he nor his fellow communicated with my local PCP. I was printing out labs and delivering them to her office weekly.

Upset, my PCP arranged an appointment with the Associate Renal Chief of Staff at the #2 metro teaching hospital in our state.

He saw me for a total of 35 minutes in 3 visits. Did request a full and extended set of labs, not completed before, but only called once to discuss the results. Office visits he had no time - no commenting between the disconnect on my 24 HR catch and spot urine. He also never communicated with my PCP on paper and refused to return her calls.

Visit 3, his fellow read the wrong labs, not the current ones; as once off the Tacrolimus, my CBC was normal. Reading the first set of labs, insisted that I was anemic and put me on iron pills at a time that conflicted with my thyroid medication. Additionally, I was told to get a colonoscopy asap as anemia in women "my age" is usually due to colon cancer.

Saw the doctor with him for 5 minutes after they supposedly "consulted" and received a call 2 months later telling me not to take the iron pills.

I saw my current lab results that day and checked the meds on Drugs Com. Spoke to my PCP who was furious and agreed with me about not taking the iron as both my RBC and ferritin were normal. Still no return call to her.

My present nephrologist discusses labs, diet, makes good suggestions, communicates with my PCP and is very thorough and up front.

Like yourself, life is not perfect and our labs will fluctuate.

Physicians are paid well for their time, if they are not doing right by a patient or not the right "fit" , it is time to move on.

Agreed, we have to be our own advocates and find physicians who not only are team players but listen and treat us.

[Smokey2Gabby]

Thanks so much for your response. It is good to learn that I am not alone. I will see my new Nephrologist today and I am hopeful that he will be concerned, well informed and able to communicate with his patients. I now know that this is the exception, but this is what I am looking for.

[maxwell03]

I had that with my primary Dr. She was a joke and didn't care. It's sad there are so many drs out there that care.

I found a new Dr and is wonderful I also like her PA . The rest of my team of drs are wonderful. But u just have to find that right one.

Stay positive.

[Jayhawker]

Im a little late posting in this thread, but I just wanted to say thanks fir sharing this article.

I, too, have had a poor nephrologist experience. My poor nephrologist was also affiliated with a well-respected university renal program. As I read the article posted I found that he scored poorly (my patient evaluation of his performance) on nearly all the items listed in the article.

Thankfully I had seen a better nephrologist for 4-5 years prior to running into this inferior nephrologist. So I had a pretty good idea what good renal care is like.

Consequently, I voted with my feet and am now working with a different nephrologist. I’ve only been working with my new nephrologist since May 30, 2019. In just 2 months my new nephrologist has done the following:

1. Referred me to a transplant center for transplant evaluation (done immediately following first appointment)

2. Modified my meds to address an acidosis problem the bad nephrologist had ignored for a year

3. Added a medication to address a hyperpararhyroid problem that ha not been treated by the poor nephrologist.

4. Sent me to a dietician to help me convert to s vegetarian diet. (I can now safely eat more potassium due to the medication change he made to address the acidosis; that medication also lowers my potassium level some.

5. Shared labs with my PCP

I can’t believe how much better I’m feeling!

It’s incredible what a difference good nephrologists can make. I’m in renal failure but am not yet on dialysis. My new nephrologist is committed to providing a treatment plan that has me feeling and functioning well as I wait to be placed on dialysis. This is exactly what my first nephrologist was doing as well. I have no idea how much longer my kidneys will hang in there with creatinine of 3.0 and eGFR of 15, but of certainly prefer to be feeling and functioning well while we wait for them to deteriorate sufficiently to require dialysis.

Jayhawker