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Kidney Disease
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Nephrologist Visit Today - Not Good

I went to the nephrologist and I do not know a thing. He would not comment about my prognosis until he receives results of my US's and labs.

I showed him my US report from 2014 where it showed cortical thinning. He did say my kidneys are shrinking, although the report did not reveal the size. I asked him if this would cause my kidneys to progress to the next stage and he said he could not answer that. He did say it is not reversible which I knew.

I asked him about a kidney diet and a referral to a renal dietician and he said it has been known for a long time that a kidney diet does not stop the progression. He said I could eat whatever I wanted but to watch the sodium.

I asked him about taking Meloxicam and he said definitely not. He said I could take Tylenol but no NSAID's or Cox 2 inhibitors. So, I guess I will have to deal with pain the rest of my life.

So, I will get bilateral ultra sounds and a zillion labs and I will not find out the results until January 11th. This nephrologist is highly respected and has been practicing for 40 years. My next post will be on shrinking kidneys!

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Based on what he told you I think he is still practicing...in 1978.

So much has been learned in the last 40 years about diet and CKD. Yes, there are divided camps on a plant based only diet and ones that include some fish and poultry. Based on his comments I'd suggest a second and possibly even a third opinion. Only cutting back on sodium is a start but by no means all you can do to slow progression.

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I plan to see another nephrologist after the tests are completed. I was shocked when he said a kidney diet did not help. I just took the class at Da Vita and they recommend a kidney diet.

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Lorrie,

Please seek another opinion.

If a doctor is unable or unwilling to answer a question, that is a red flag to me.

Forty years experience and alot of affirmation that he is a good doctor, does not always make him a good doctor, or the right one for you.

I saw a doctor who had been practicing for over 50 years and was voted all of these honors, but did not follow up on my labs etc. properly.

A renal dietician can make suggestions as to better food choices and portions. Yes, it is important to limit your sodium consumption , which includes not eating canned soups, cold cuts, bacon and salty snacks such as chips; additionally, avoiding red meats and foods heavy in potassium and phosphorus is important.

Eating fresh and fresh frozen vegetables and fresh fruits such as strawberries, blueberries, red grapes and pineapple help your

kidneys function as best as possible.

Diet and exercise has been proven to slow up the progression of kidney disease.

I agree with Mr._Kidney, please see someone else..

Let us know how you are doing..we care!

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Thanks, Bet. I plan to carry on with the diet I am presently on: under 2,000 mg sodium, little to no red meat, mozzarella or swiss cheese, chicken, veggies, and berries, white rice, eggs. I have lost 8 lbs since going on this diet from the advice of you good people. I still don't know about water consumption. My doctor tells me to keep drinking; the nephrologist said to drink when thirsty for if I push water, it will throw off my electrolytes. I want to complete the tests he ordered, go for the follow up appointment and get to another nephrologist asap.

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Hi Lorrie,

Your diet sounds helpful and on your way.

I was told to drink to thirst as you don't want to dehydrate. I also put a dash of low sugar or zero Gatorade in one of my water bottles each day to make sure that my electrolytes stay within range.

Get your testing completed, but happy you are booking another opinion; it is your prerogative as the patient.

If you are in disagreement with your present nephrologist, promote discussion.

He is getting paid to care for your health, but you are your advocate.

Please let us know how you are feeling and where you are in this..

We care!

Bet

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I called my internist yesterday and he is referring me to a nephrologist of my choice. He had to refer me to this guy since he is the only nephrologist in the health system he is with. I think I should have been asked who I wanted to go to. I cannot promote discussion with this dr. He cuts me off. He argued with me that I had afib. I told him I was not in afib, I was in atrial tach. He said I take amiodarone for afib so I have afib. Maybe it's the same thing as when your hypertension is controlled with meds, you still have hypertension. It seemed I had to debate everything he said. I am not going for his tests and I will wait until I see a new nephrologist the beginning of January.

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What you are now doing is what we mean by being proactive. You have to take charge of your healthcare. That should be one of the questions you ask of every doctor on your Care Team. Are they willing to give you their best medical advice and then accept your decision regarding treatment? If they are then you have found a good physician. If they are not willing to abide by your decision then keep looking. Doing the needed research is the way to keep learning and being aware of all issues related to having CKD. It's your life, your health and therefore your choices.

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I know I will feel more comfortable with any nephrologist other than the one I saw. It was at the end of the day and he seemed to be grumpy and very authoritative. I told him I had a maze procedure on my heart and he had no clue what that was and that concerned me.

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Absolutely!

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Agreed!'

Your health and life have to come before a salary!

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Lorrie,

If your internist is dismissive, inattentive and giving you an attitude, perhaps it is time to clean house and find a PCP who has your best interest at heart, listens to your concerns and symptoms and is willing to work with you.

Unfortunately, not every physician or any professional has a stellar bedside manner; as long as you are heard and they are direct, upfront with you and competent, they are worth keeping.

You and your health deserve the finest care !

It trying but well worth it in the end.

Please let us know your progress!

:)

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Sorry! I re-read my post and it seemed I was referring to my internist. My negative comments were about the nephrologist I am firing!

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Amen! Did you see my post? I am hoping for both of us that the new choices are great!

Keep the homefires burning!

B..

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Run, not walk, to a new nephrologist! I will have more to add after I read all of the comments, but I let out a loud laugh when I read Mr. Kidney's comment about the fact that he is still practicing in 1978. So true!

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I got a referral to a nephrologist of my choice. He is young and up do date on CKD. Perhaps he will say the same thing, but at least it will be someone who will not scare me and debate everything I tell him.

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My second nephrologist is young, but says the same thing (I stayed in the same practice). I get my blood work done, see her when scheduled (she lengthened the time of my next visit to 6 months), and then I do my own research and do what I feel is best for me.

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So, your nephrologist said the same thing about drinking only when thirsty? I am rarely thirsty! How many ounces do you drink per day?

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No, said the same thing re: "a kidney diet does not stop the progression. He said I could eat whatever I wanted but to watch the sodium." As I recall, the first one said nothing about water and the 2nd was not specific either. I try for at least 64-70, but it probably should be more.

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I know that diet will not"stop" progression, but according to all the info I received from Da Vita it can slow the progression. For example, if a diabetic ate nothing but sugar and carbs or someone with hypertension ate sodium all day, would that not increase the chance of progression? My cardiologist told me to drink no more than 50 oz of water. I thought less is more and barely drank anything at all. I still can barely get to 50 oz. but I'm trying.

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Anything in excess can be harmful. Diet can help slow down the progression of CKD if you are eating kidney-friendly meals designed for you. So will watching your medications/dosages, including supplements. Exercise is also critical to help slow the progression. Something else that is not well discussed is stress. Remember that stress can be both good and bad. The more knowledge you have on CKD the stronger you can become. Stress that you are unable to control can be negative and lead to poor mental health and also it can be hard on your heart, increasing blood pressure.

Chronic illnesses are difficult at best. Having three (T2D, Hypertension, and CKD) requires you to stay positive, focused, and on top of your healthcare.

Drink as much as you can each day. There is no magic number and remember that once the day comes when you have to be on dialysis you will in many cases have to control your fluids intake. For now, drink what you can, especially during and after exercise.

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Now, that I have stopped taking meloxicam, I am in so much pain I can barely walk let alone exercise. I have a large home, so I am trying to walk around the house on carpet for less impact on my joints. Now, stress. I have had so many stressors throughout my life and it's caused many of my health problems.

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I am seeing a young nephrologist on Tuesday after 2 terrible experiences in 2 different metropolitan teaching hospitals.

Lowraind, you are keeping me positive that this gentleman will have my back and provide great medical care.

Thanks!

B..

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I also agree with Bet117. Regarding water, this article might help: kidney.org/content/6-tips-b... If I were to drink only when thirsty, I might have my 2 cups of coffee and one or two glasses of water. However, I am pretty sure that part of the reason(s) for my ckd is that I was a teacher and later administrator and never took the time to drink the water I should have been drinking all along.

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hmmm, seems there are a lot of us teachers on this site. I wonder how many? I too was a teacher and then went into administration, but not at a school.

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Well since this is off topic, and a relief, I was also a special ed teacher and a Behavior Specialist for 20 years. I taught every grade with all special needs students at various times. I ended teaching 6th grade and high school students in Math, Science and English. As a Behavior Specialist, I had to deal with the parents. The kids were easier, most of the time.

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Is that why so many of us have ckd? Not being able to use the bathroom when you need to and probably not drinking enough due to not being able to use the bathroom?

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Teaching was a second career for me. My first one was 20 years in business, mainly as a corporate Vice-president. Add to that a four-year stint in the USAF and now 3 years retired and you have my work history. I don't think any one career caused either the CKD or Hypertension but probably did contribute a bit to it. In the two states I taught, it was required that each Special Needs class have a teachers aide in the room. Especially the ones with Severely Emotionally Disturbed and Emotionally Handicapped students.

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Regular classroom teachers do not usually have another body in the room. When you really have to go, you have to ask the closest person to keep an eye on your kids. Not always possible.

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oh yeah, not being able to go to the bathroom was tough for me too. First career: media communications and working at and then running a television station. Second career for me as a high school teacher for "behavioral" and non-regents kids. In other words: BOCES. Loved it and the students, some of which I am still in contact with. Then taught at a urban business school for a couple of years. Then on to working with DD adults for six years as the director of education and from that, director of education for UR Medicine Home Care. I'll take the kids and the DD adults any day over the clinicians lololo.

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lowrained,

Being that we are all off topic, what did you teach and what levels? Administration, too.

πŸ‘

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HI Bet117,

I taught grades 1 & 2, served as principal at a school in Lima, Peru for three years; taught 3rd grade; then worked in restaurant mgmt.for several years; to married and had two kids went back to restaurant mgmt. again; had some heart problems and decided to go for my Master's degree after sick leave; went back to teaching, worked for a while as a sub, then as Gifted and Talented Coordinator in a couple of districts. Finally, went back to regular teaching with a split 4/5; then back to 1, then 2 and finally gr. 3, when I spent several years. Like that best, since they are with it enough to catch your jokes, but (at least in those days), were still not totally out of control. I then became principal for a short time and was asked to become the Academic Dean and to lead the Accreditation Team. I told my boss I could probably do two of the jobs, but not all three, so they got a new principal and I was Academic Dean for 25 years and led two Accr. Teams. When they asked me to lead it the 3rd time, I told them "no way". Right now, I am still doing consulting, research and working on practice tests in prep for M-STEP and SATs.

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Hi Lowraind,

Thanks so much for responding! Peru! Wow! Would love to hear about your experiences. Sounds amazing. My most enjoyable days were spent with grades 3-8. I worked under 2 great Academic VP's and a Dean of Students..so would love to hear.

I also served on a visiting accreditation team, and was active in the prep for accreditation..so I have the utmost respect for you in your ability to coordinate and lead. I can't blame you for " no way"..on number 3!

Restaurant Management is alot of hard work and long hours; friends bought a restaurant several years ago and try to balance their teaching careers and the restaurant; not easy. So I can well imagine what you went through.

I believe classroom management and corporate management..etc may be diverse in setting, but to be successful in any, you must possess similar management skills to yield the most from those under you with boundaries, fairness and respect.

I consult as well; reading as well as collegial coaching if the opportunity presents itself.

Would love to discuss..

Feel free to PM me..

Love to talk..

B...

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Okay..I admit it!

Reading Specialist and Schedule Coordinator Grades

1-4, then Reading Teacher Grade 7; five homogeneous groups including an AP Literature. Budgets were getting tight; no remedial, so I combined talents and created an individualized remedial reading program for my low readers while still able to fit in the curriculum; two for the price of one. Laid off as youngest in bldg..

Taught remedial reading in inner city vocational HS for way too many years.

I designed individualized programs of study for underperforming students, ESL and behavioral candidates who were not special needs material due to intellect.

I was also responsible for all reading testing and evaluations. Gathered data, assessed and analyzed it to write the state report on our progress in all 3 reading classes.

When National Core came; at the request of my VP, taught American Literature to underperforming juniors, using the grade level text. Also created an individualized Accuplacer program for my students as one of my goals; teaching how to read, evaluate and think rather than just ape back information.

Following year, asked to design an English SAT curriculum and teach the course.

Co-founder of a Literary Magazine, where I supervised and trained 2 copy editors and a content editor for 8 years.

Last year there was ESL Coordinator, specialized teacher while continuing as reading specialist who tested and evaluated students who were failing in the regular classroom.

My husband finished his PhD, mom was very ill and I realized a change was in order.

Little did I know I would be diagnosed with Membraneous Nephropathy months after my departure.

My issue is autoimmune..

Presently co- authoring a supplementary text with my husband for the human biology course he will be teaching in the spring..

Yes, I snuck the Dansani under the desk, but did not drink enough water. Opened the connecting doors when i could and I really needed the restroom. So I can relate..

Mr._ Kidney, agree..the kids were the easiest part; success motivated learning. The insanity was the adults and parents. Apples often don't fall far from trees. 🍎🌴

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Good for you Lorrie. I love patients who advocate for themselves. And you know, working in the healthcare field, just because someone has forty years of practice, does not mean they have kept up. I had a visit with a Dr once who was the head of the endocrinology department at the University Hospital I worked for. Highly praised by all. He was the most bombastic, self-righteous jerk I ever met and he was one of the reasons my care for my kidneys was not done sooner.

You have to be able to work with your healthcare team with YOU being the captain of the team. Good luck in January and let us know how you make out.

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Thanks. I will probably not be able to get an appointment until the beginning of January. I will keep this thread updated.

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Bravo Bassetmommer!

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Absolutely! I had a similar experience with a metro nephrologist who was annoyed that my PCP did their own labs and refused to return her calls. Annoyed that I sought a 2nd opinion; the dismissive attitude and speaking unprofessionally eventually put an end to that relationship. This person is a high ranking instructor at a teaching hospital as well as her colleague who told me to buy a book regarding kidney nutrition and my albumin level.

The next was an Renal Chief of Staff at a different metro teaching hospital.

Had 3 visits; initial was 15 minutes, second was less than 10 minutes after he ran tons of labs and told me he was short staffed and had no time to see me for the scheduled time.

Never sent the Visit Summary, labs and plan to my PCP as directed.

I had to print them out and drop them by her office. Also spoke to my former nephrologist without my oral or written consent and was called on the carpet for that by me.

Third visit was an emergency as I had dehydrated with ungodly low blood pressure. The fellow working with him never manually took my pressure, looked at labs prior to removal of Tacrolimus; obviously not the current ones and decided that I was anemic. I contested this and was dismissed.

He ordered iron pills when I am not anemic and sent a Lisinopril refill to my pharmacy when it had been refilled the month before.

I was told by him that they would consult and both my doctor and his fellow would then see me together.

Seconds later, my doctor came in for 5 minutes, never examined me..

When the pharmacy called upon arrival home I was furious!

My PCP continued to attempt contact with this group..to no avail.

I saw her for a follow up 4 days later..labs were great..no anemia. She manually checked my BP and we discussed going forward. She lowered my Lisinopril; given to protect the kidneys and slow the protein spilling..was shocked I was no where near anemic on her labs and the ones from the metro.

At that point, she ordered a 3 month check...very thorough.

At the same time she sought another nephrologist for me, discussing who with me on the phone and called the practice personally before having me call and schedule an appointment.

I see him on Tuesday. I will advocate for myself without looking back..

Where am I today and what is our plan for the future..

Enough is enough!

πŸ‘

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Yikes! You have been through the wringer too! My first internist who I had for years, dismissed the ultrasound that revealed cortical thinning. He retired and I went to another internist who never realized I had CKD and never realized the drop in my GFR from 59 to 40 in a week after IV antibiotics. I'm on my third internist who is the one that is keeping good track of me. He did a complete physical which neither of my prior internists did. He ordered tons of labs and he was the one who dx me with CKD, although he did not tell me until I asked. He follow me every two months and I feel I am in good hands. Now, I only need a good nephrologist. I am trying to find a renal dietician and there are none in my area. There are registered dieticians and I wonder if they would be able to help me.

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Hi Lorrie,

Dad used to tell me, " If life were simple, it would be boring!" ..we certainly have not had boring, but we are advocating and taking care of ourselves and getting

the best medical care

I feel badly that you had such a bad experience with your internist, but best that you found competency with this person.

Communication is so essential! Importantly, that your internist is up front with you and discusses your labs and health.

If he/ she is aware of CKD; inform you! Print out copies of your labs before an appointment, check off areas of concern and ask.

I found that taking a small notebook with me to all doctor's appointments with questions and a noting discussion has been key.

As far as a renal dietician; contact the nearest Davita Center in your area. Take their Smart Class; excellent and informative. They have a renal dietician on site as well as a patient advocate. I don't qualify for the davita dietician services, but she and I do communicate via

e-mail.

As you know, I was seen at two metro teaching hospitals and neither employed a renal dietician. One had a dietician who was very experienced and attends to the renal patients but she is not a renal dietician per say. Our local hospital does not have a renal dietician either.

Be interesting to see what services are available via the new practice I will be seen in on Tuesday.

Give Davita a call..

Let me know the outcome!

B...

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