CKD 3, left kidney atrophy, recurrent kidney stones

Posted by tracilynn0418 @tracilynn0418, Jun 24 9:44pm

Hi everyone, just wanted to get some input from everyone! My next nephrologist appt is August 19th! I would like to go in with a list of questions to get answered by him. What all questions have you asked that you thought were helpful? Is it too soon for me to ask about a preemptive transplant since my one kidney is non-functional at this point and that I must go into the er as soon as I feel like a stone is bothering my good kidney because they fear if I try to pass it,it may kill me if it becomes blocked. So it’s just a case that I don’t know how they would look at me. I live in fear everyday of what will happen next. My fatigue has gotten worse lately and not sure if he could help me. I don’t really trust many other doctors because they try and use drugs he’s told me not to. So I am no longer allowed nsaids. He really hasn’t mentioned others but I try to research everything and avoid taking anything anymore unless absolutely necessary. Has anyone had pain only in the top of their feet that’s also started since this all began last January. He hasn’t been able to figure out that part yet. So yes kidney since at least 16 and was probably misdiagnosed before that probably as young as at least 12 so they believe this along with stone surgeries and several stents at least one a year since 16 and the usage of nsaids for the stones caused my kidney damage but I don’t know if that is a for sure thing. I do also have pcos but I’ve managed that well with diet for last several years because of the metformin caused my stomach great distress. Any and all advice of diet things you’ve learned or thought was helpful to ask doctor’s I am all about be proactive now to slow this all down as much as possible. Thanks

Hi, @tracilynn0418. A list of questions is a great way to get the most out of your appointment. I would like to add that a list of symptoms is also necessary. In my opinion, you are already off to a good start, however, I would suggest that you simplify your list so it can be read easily. Remember that appointments are short. I have had good results with making a date – symptom list. That way if the doctor skims thru the information, he can easily see your history. He can easily ask you to tell him any extra details. He might want to make a copy for his files too.

As for the questions, I have used anything from a scribble on a piece of junk mail to a well composed list in a notebook. On thing that you will want to do is to give your self space to not down the answers. Any question that relates to your kidney is appropriate! So, yes, it is most appropriate for you to begin to ask about transplant.

I am going to share this link about Chronic Kidney disease with you. It can be helpful for you, the patient, to be prepared, too, by reviewing information. As you read thru the Symptoms and Causes, and the Diagnosis and Treatment sections, you will find a suggested list of questions for you to ask, and that the doctor might ask you. https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/

Since you mentioned kidney stones, here is some additinal information. https://www.mayoclinic.org/diseases-conditions/kidney-stones/

Tracyilynn, Is there someone who will be going with you? An extra set of ears is helpful during a stressful time in the doctor office.

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@rosemarya

Hi, @tracilynn0418. A list of questions is a great way to get the most out of your appointment. I would like to add that a list of symptoms is also necessary. In my opinion, you are already off to a good start, however, I would suggest that you simplify your list so it can be read easily. Remember that appointments are short. I have had good results with making a date – symptom list. That way if the doctor skims thru the information, he can easily see your history. He can easily ask you to tell him any extra details. He might want to make a copy for his files too.

As for the questions, I have used anything from a scribble on a piece of junk mail to a well composed list in a notebook. On thing that you will want to do is to give your self space to not down the answers. Any question that relates to your kidney is appropriate! So, yes, it is most appropriate for you to begin to ask about transplant.

I am going to share this link about Chronic Kidney disease with you. It can be helpful for you, the patient, to be prepared, too, by reviewing information. As you read thru the Symptoms and Causes, and the Diagnosis and Treatment sections, you will find a suggested list of questions for you to ask, and that the doctor might ask you. https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/

Since you mentioned kidney stones, here is some additinal information. https://www.mayoclinic.org/diseases-conditions/kidney-stones/

Tracyilynn, Is there someone who will be going with you? An extra set of ears is helpful during a stressful time in the doctor office.

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@rosemarya, I hope those of us who don't have anyone who can accompany to appointments have a thoughtful doctor. I usually bring a written list of questions.

My nephrologist takes the list and answers all my questions verbally but also writes down her answers on my list and gives it back to me. She also prints out a summary of the visit, her findings, plan of care, and instructions. An appointment lasts a little longer than most but is well worth her extra time and mine.

Another advantage is being able to email her with any questions or problems to which she responds fairly quickly, depending on the issue. Some physician practices, particularly those affiliated with a teaching hospital system, offer patient portals where people can access visit summaries, lab and procedure results, and ask questions. Please ask if your care provider offers a communication channel like this.

In addition, some care clinics are staffed with salaried physicians and other pesonnel who do not have to depend on self-billing to be paid for their services. Though this can have a downside, the upside is that within appropriate limits a doctor can spend a little more time with the patient.

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@kamama94, Ahhh, that so many others of us could have your outstanding nephrologist cloned for our treatment and education! I am quite sure you do your part in preparing your questions and respecting her and the time she gives you. How wonderful to read your post. Others, too, in this forum have posted of the wonderful collaboration they've achieved with their medical teams. It is heart warming to know and perhaps inspiring also that a patient can do a great deal to prepare ahead to receive the most information in the limited time our physicians are allowed with each patient. Thank you for this.

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@tracilynn0418 You are wise to be thinking ahead of your appointment, sitting down with a clear mind to consider what to address. Will this visit be a routine, that is, every quarter, or so? Here are questions I might ask, if I was in your shoes:

What is my eGFR, and what is the trend in the last year? Can I be referred to a renal dietician for consultation on the best diet to follow? [If you have any other issues and disorders currently, remember you want to be sure everything is being addressed together!] Has there been any research into what my past kidney stones consist of [calcium oxalate, uric acid, struvite] and what course of action do we do to minimize a recurrence? Do you advise a peremptive kidney transplant, or do I risk developing kidney stones in a transplanted organ? How do I get listed and qualified for a transplant? What do you consider may be the cause of my decreased energy and increased fatigue, and how should I deal with this?

If you are near one of the Mayo Clinic campuses, you might want to consider an appointment there. Or an alternative would be a large teaching hospital.

I hope you will let me know if this is a help, or how else we may support you.
Ginger

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@gingerw, Excellent questions to pose. I wish I lived nearer a Mayo site!

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Having lived through and currently living with CKD, it sounds to me like you might have excess uric acid.. The chemical analysis of numerous stones surgically removed indicated the presence of uric acid. In my case the excess acid caused gout for which I take 150mg of allopurinol every day. Gout is a form of arthritis on steroids and when it acts up, as it frequently does, I experience extreme pain on the top part of my feet. I have tried numerous topical OTC products with little success. Eventually the pain will subside. You may want to ask your nephrologist if you should seek help from a renal dietitician to help you select the best foods for you.

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@veteran1950

Having lived through and currently living with CKD, it sounds to me like you might have excess uric acid.. The chemical analysis of numerous stones surgically removed indicated the presence of uric acid. In my case the excess acid caused gout for which I take 150mg of allopurinol every day. Gout is a form of arthritis on steroids and when it acts up, as it frequently does, I experience extreme pain on the top part of my feet. I have tried numerous topical OTC products with little success. Eventually the pain will subside. You may want to ask your nephrologist if you should seek help from a renal dietitician to help you select the best foods for you.

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@veteran1950, I had to look uo allopurinal because I am not familiar with it. But then I don't have kidney stones. As you explained, it is used to prevent or lower excess uric acid levels for patients with kidney stones. How long have you been taking it? Is it a long term medication that you will remain on, or do dietary modifications help to reduce the uric acid?

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@rosemarya

@veteran1950, I had to look uo allopurinal because I am not familiar with it. But then I don't have kidney stones. As you explained, it is used to prevent or lower excess uric acid levels for patients with kidney stones. How long have you been taking it? Is it a long term medication that you will remain on, or do dietary modifications help to reduce the uric acid?

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@rosemarya I also take allopurinol, once a day. I get gout, caused by excessive uric acid. Even with medication, my uric acid level is borderline high. I can no longer enjoy shellfish, purine foods like mushrooms, very little pork, even too much sugary foods are bad. No fun, let me tell you, when the gout strikes!
Ginger

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@rosemarya

@veteran1950, I had to look uo allopurinal because I am not familiar with it. But then I don't have kidney stones. As you explained, it is used to prevent or lower excess uric acid levels for patients with kidney stones. How long have you been taking it? Is it a long term medication that you will remain on, or do dietary modifications help to reduce the uric acid?

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I have been taking allopurinol shortly after my first stone was surgically removed, last quarter 2011 when excessive uric acid required I start the drug I will continue to take for the rest of my life.

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