Today's Appointment with the Nephrologist

mp327 said:

Notes From Kidney Seminar

Notes From Kidney Seminar on 12/8/2015

 

My husband and I attended the educational seminar at the dialysis center yesterday, and as promised, I am passing on some important information presented.  We were the only ones in attendance, which was nice because it allowed us to freely ask questions.  So, without getting into too much detail about late-stage Chronic Kidney Disease (CKD), I will focus on some general information that I hope will be helpful for everyone regarding causes, detection, maintenance and prevention.

Kidney function decreases with age.  The two main causes of CKD are hypertension and diabetes.  One important test that measures kidney function is the GFR—Glomerular Filtration Rate, which measures the rate at which the kidneys eliminate waste from the blood.    

The Stages of Chronic Kidney Disease are as follows:

Stage 1—GFR greater than 90

Stage 2—GFR 60 to 89

Stage 3—GFR 30 to 59

Stage 4—GFR 15-29

Stage 5—GFR less than 15

Other blood tests that may be included in a renal panel can also indicate reduced kidney function, including:

Creatinine (measures level of waste product from muscles—usually higher in men than women). 

BUN (Blood Urea Nitrogen).  This measures the waste product from protein.

Albumin (Measures nutrition and protein status)

BUN/Creatinine Ratio (calculated using creatinine and BUN levels)

My last creatinine level was .90, which is within normal limits.  However, due to my CKD, the nephrologist would like to see it even lower.  My last GFR was 69, which puts me at Stage 2.

A few very important things I have learned are:

A urinalysis alone cannot detect CKD—blood tests are needed to measure how well the kidneys are removing wastes from the blood, which leave the body through urination.  Also, urine output is no indication of either healthy kidneys or poorly functioning kidneys.  My urinalysis results have all been normal, despite my diagnosis of CKD. 

Kidney function can fluctuate, even in short periods of time.  In my case, my renal panel was normal on a Friday, but abnormal the following Tuesday.  When a person is monitored for possible CKD, their physician is looking for an overall trend in their lab results over a 3-month period.  Fluctuations may be present, but an overall "trending down" in their lab results can indicate possible renal impairment.

Dehydration causes our kidneys to have to work harder to remove waste and may, over time, cause kidney damage so drink up!  The recommended amount of fluid intake per day for healthy kidneys is 2 liters.  Anyone diagnosed with CKD needs at least 72 ounces of fluid per day.  Water is best, but even coffee counts, according to my nephrologist.  Also, anything that melts at room temperature adds to our fluid intake. 

Things that can damage our kidneys include NSAID’s (Advil, Aleve, Motrin, Naproxin, etc.) and should be avoided whenever possible.  Long term use, as in my case, can cause kidney damage.  The good news for me is my CKD may be partially reversible, since I do not have hypertension or diabetes.  My goal is to get back to Stage 1 CKD.

High protein diets for extended periods over time can cause kidney damage.  I am guilty as charged!  We all know we should follow a healthy diet and that sodium is not good for us or our blood pressure!

Some prescription medications, OTC medications, supplements and vitamins can cause kidney damage, so make your doctor aware of all that you are taking.

Since we have all been diagnosed with cancer and are subjects of lots of lab tests, scans, etc., I think it’s very important to know this:  IV Contrast used for CT scans CAN damage your kidneys!  I would highly recommend that before anyone has a CT scan, that they ask their doctor to check their kidney function beforehand to make sure it is safe for them to have the contrast/scan.  Then, and I cannot emphasize this enough, be sure to drink LOTS of water prior to and after having a CT scan.  This will flush it out of your body, inasmuch as is possible.  It is probably impossible to get rid of it all immediately.  Whenever I’ve had scans, I am always handed a slip of paper advising me to drink a certain amount of water after the scan.  However, I was unaware until my CKD diagnosis how vitally important this was to protect my kidneys.

If I think of anything else to pass on, I will.  I hope this information is helpful.

I am glad you received better news and appreciate all the info you have provided. I do remember having blood tests before each scan.  I was told that the combination of chemo and scans can be hard on the kidneys. I think it is great that you are questioning whether or not you need a scan after 7 years. I am anxious to hear your doctor's response. 

Liz

mp327 said:

Liz

I don't remember ever having bloodwork prior to scans.  I now know that was NOT good!  Rather, I would have the scan, then see my med onc a few days later to discuss the results, at which time blood work would be done.  I still haven't heard anything from my doctor after dropping off the letter.  I'll post when I do, you can be sure!

Martha

I took a look at the chart that you printed, my results haVe consistently been greater than 89 NB. Whaaatttttt!  No one has ever mentioned kidney disease to me.  I am shooting an e mail to my doctor immediately!  

THANK YOU MARTHA!

mp327 said:

Pheobesnow

If your GFR results are always higher than 89, then that's great!  It means that you have kidneys that are functioning well, so you are in good shape!  As I stated in my post, kidney function declines as part of the normal aging process and it's doubtful that anyone will ever test at 100% (which would be a reading of 100 GFR).

Martha

Hi,

In reviewing the charts at times it was as low as 71!  I am waiting to hear from my doctor.

mp327 said:

Notes From Kidney Seminar

Notes From Kidney Seminar on 12/8/2015

 

My husband and I attended the educational seminar at the dialysis center yesterday, and as promised, I am passing on some important information presented.  We were the only ones in attendance, which was nice because it allowed us to freely ask questions.  So, without getting into too much detail about late-stage Chronic Kidney Disease (CKD), I will focus on some general information that I hope will be helpful for everyone regarding causes, detection, maintenance and prevention.

Kidney function decreases with age.  The two main causes of CKD are hypertension and diabetes.  One important test that measures kidney function is the GFR—Glomerular Filtration Rate, which measures the rate at which the kidneys eliminate waste from the blood.    

The Stages of Chronic Kidney Disease are as follows:

Stage 1—GFR greater than 90

Stage 2—GFR 60 to 89

Stage 3—GFR 30 to 59

Stage 4—GFR 15-29

Stage 5—GFR less than 15

Other blood tests that may be included in a renal panel can also indicate reduced kidney function, including:

Creatinine (measures level of waste product from muscles—usually higher in men than women). 

BUN (Blood Urea Nitrogen).  This measures the waste product from protein.

Albumin (Measures nutrition and protein status)

BUN/Creatinine Ratio (calculated using creatinine and BUN levels)

My last creatinine level was .90, which is within normal limits.  However, due to my CKD, the nephrologist would like to see it even lower.  My last GFR was 69, which puts me at Stage 2.

A few very important things I have learned are:

A urinalysis alone cannot detect CKD—blood tests are needed to measure how well the kidneys are removing wastes from the blood, which leave the body through urination.  Also, urine output is no indication of either healthy kidneys or poorly functioning kidneys.  My urinalysis results have all been normal, despite my diagnosis of CKD. 

Kidney function can fluctuate, even in short periods of time.  In my case, my renal panel was normal on a Friday, but abnormal the following Tuesday.  When a person is monitored for possible CKD, their physician is looking for an overall trend in their lab results over a 3-month period.  Fluctuations may be present, but an overall "trending down" in their lab results can indicate possible renal impairment.

Dehydration causes our kidneys to have to work harder to remove waste and may, over time, cause kidney damage so drink up!  The recommended amount of fluid intake per day for healthy kidneys is 2 liters.  Anyone diagnosed with CKD needs at least 72 ounces of fluid per day.  Water is best, but even coffee counts, according to my nephrologist.  Also, anything that melts at room temperature adds to our fluid intake. 

Things that can damage our kidneys include NSAID’s (Advil, Aleve, Motrin, Naproxin, etc.) and should be avoided whenever possible.  Long term use, as in my case, can cause kidney damage.  The good news for me is my CKD may be partially reversible, since I do not have hypertension or diabetes.  My goal is to get back to Stage 1 CKD.

High protein diets for extended periods over time can cause kidney damage.  I am guilty as charged!  We all know we should follow a healthy diet and that sodium is not good for us or our blood pressure!

Some prescription medications, OTC medications, supplements and vitamins can cause kidney damage, so make your doctor aware of all that you are taking.

Since we have all been diagnosed with cancer and are subjects of lots of lab tests, scans, etc., I think it’s very important to know this:  IV Contrast used for CT scans CAN damage your kidneys!  I would highly recommend that before anyone has a CT scan, that they ask their doctor to check their kidney function beforehand to make sure it is safe for them to have the contrast/scan.  Then, and I cannot emphasize this enough, be sure to drink LOTS of water prior to and after having a CT scan.  This will flush it out of your body, inasmuch as is possible.  It is probably impossible to get rid of it all immediately.  Whenever I’ve had scans, I am always handed a slip of paper advising me to drink a certain amount of water after the scan.  However, I was unaware until my CKD diagnosis how vitally important this was to protect my kidneys.

If I think of anything else to pass on, I will.  I hope this information is helpful.

Once again, thank you for sharing this. 

I've never been told to drink lots of water prior to scans, in fact most times I have to fast 8-12 hours before.  This last time is the 1st I remember being to told to drink a lot of water afterwards (but no reason why.)

7243 said:

Clarification ... A recent

Clarification ... A recent test is acceptable, however top-notch centers want a current creatinine level performed at their lab.  OR They can do it as a "point of care" test ... FYI.

 I had PET - CT scans every 3 - 4 mmonths for 2 years and CT with and without contrast every 6 months up to this last one at 5 years post treatment.  My kidney functions were tested at every scan.   Currently normal ... Important to track this.  I have access to all labs and every scan result via "my chart" EPIC electronic medical record.  

After long discussion with my oncology team, I accepted the risk of scans for the benefit of early detection of recurrence.  A tough decision ... Because there are many risks, like kidney damage and radiation exposure (Exposing me/us to other cancers).  Navigating cancer treatment and subsequent follow-up surveillance is not a task taken lightly.  Each of us must educate ourselves about the options and participate in our care decisions ... We must expect and demand informed consent.  And then we choose ... Not easy.  Especially considering this is our life, our long-term daily quality of life, physically and emotionally.  Not to mention we are usually scared shitless ... Literally! 

And so, we do our best.  This is not the journey I would ever choose, however it is where I found myself.  After 5 years I'm still figuring my way ... Through the haze that is cancer.  

Peace to all of you navigating this same course ... at times I have a strong hand on the  rudder, others, it's a rough ride.  Thank you for being here for me ... 

I am happy to say that I do not have kidney disease.  The other tests performed are all normal.  Thank you for this information and yours 7243.

mp327 said:

Update

 Hello Everyone--

I hope you all enjoyed your holidays and are looking forward to a healthy and happy new year.

I wanted to catch you up on my situation. As I stated in an earlier post, my kidney function was improved with the last round of testing. However, while out of town for Christmas, I seem to have had a possible gout attack. I woke up Monday morning and could barely walk, with pain, stiffness and swelling in my left big toe. Since gout is caused by excess uric acid that has not been removed by the kidneys, I can only presume this is what's going on, since gout often manifests itself in the joint of the big toe. I know, self diagnosis can be dangerous.

Now for some very sad news. I was out of town visiting family for Christmas and received a phone call Sunday evening from my friend and neighbor who is a radiologist at the local hospital. He called to inform me that my medical oncologist dropped dead over the weekend while doing yard work. I am quite devastated. He was such an excellent doctor and not only an M.D. but also a PhD.--a brilliant man. He was an advocate for his patients and loved by all. Despite spending day after day seeing patients who were very sick or dying, he was always pleasant and took time with me and all of his patients, never making one feel rushed. He had the knowledge to save many peoples' lives, but in his moment of crisis, there was no one there to save him. As we traveled home yesterday and passed a federal prison, I thought how unfair life can be sometimes. Prisoners who, some of them are incarcerated for taking a human life, live on and even get free medical care from taxpayers dollars. Then there is this dear man who had spent his career helping people who were very sick, saving many lives, including mine, and he was taken out. I am heartbroken. As a cancer patient, I know how much faith we put in our doctors, and I could only imagine the crushing blow this news will have on his patients, especially those who just began their treatment. How do you walk into the chemo infusion room for that first round of chemo and have hope when you've just learned that your doctor has died? I am beyond sad.

Martha

words escape me.... i know that you are very sad about this.....i am sorry that you have to feel this emotional pain for your friend and doctor.....i do so hope you find relief for the gout.... my goodness... it just goes on and on.....hugs to you....sephie

mp327 said:

Update

 Hello Everyone--

I hope you all enjoyed your holidays and are looking forward to a healthy and happy new year.

I wanted to catch you up on my situation. As I stated in an earlier post, my kidney function was improved with the last round of testing. However, while out of town for Christmas, I seem to have had a possible gout attack. I woke up Monday morning and could barely walk, with pain, stiffness and swelling in my left big toe. Since gout is caused by excess uric acid that has not been removed by the kidneys, I can only presume this is what's going on, since gout often manifests itself in the joint of the big toe. I know, self diagnosis can be dangerous.

Now for some very sad news. I was out of town visiting family for Christmas and received a phone call Sunday evening from my friend and neighbor who is a radiologist at the local hospital. He called to inform me that my medical oncologist dropped dead over the weekend while doing yard work. I am quite devastated. He was such an excellent doctor and not only an M.D. but also a PhD.--a brilliant man. He was an advocate for his patients and loved by all. Despite spending day after day seeing patients who were very sick or dying, he was always pleasant and took time with me and all of his patients, never making one feel rushed. He had the knowledge to save many peoples' lives, but in his moment of crisis, there was no one there to save him. As we traveled home yesterday and passed a federal prison, I thought how unfair life can be sometimes. Prisoners who, some of them are incarcerated for taking a human life, live on and even get free medical care from taxpayers dollars. Then there is this dear man who had spent his career helping people who were very sick, saving many lives, including mine, and he was taken out. I am heartbroken. As a cancer patient, I know how much faith we put in our doctors, and I could only imagine the crushing blow this news will have on his patients, especially those who just began their treatment. How do you walk into the chemo infusion room for that first round of chemo and have hope when you've just learned that your doctor has died? I am beyond sad.

Martha

I'm so sorry about the sad news of your doctor's passing.  I immediately thought of his patients.  It will be such a hard thing for them and for his staff.

As for your health, I hope you get some relief soon for the gout or whatever is causing the pain in your toe.  

Always wishing you the best,

Janet