Today's Appointment with the Nephrologist
I just returned home from my follow-up appointment with the kidney specialist. I saw a different doctor this time, as the doctor I saw the first time was not scheduled to be in the office today. The one I saw today was very young and I liked him very much. Prior to my meeting with him, blood was drawn and a urinalysis done. When he came into the exam room, he had all the results and, to my pleasant surprise, everything looked very good! My renal function tests were all within normal limits! Woohoo! He told me that it's possible that my kidney issues are due to my used of NSAID's (Advil) over the many years and that stopping them a few months ago has begun the process of reversing some of the damage done to my kidneys. He feels that I am at Stage 2 instead of Stage 3 and that it's even possible for me to go back to Stage 1 if I avoid the Advil, continue to exercise, and eat a balanced diet. Even though I am not hypertensive, he said it was good that I was reducing my sodium intake. He gave me the green light to continue drinking coffee--YAY!--and alcohol in moderation--YAY! I am scheduled to go back in 6 months for labs and a follow-up appointment. At that time, I will be seeing the doctor I saw the first time.
I am putting this in a separate paragrph to bring attention to this part of the story. I discussed with him the fact that I was a cancer survivor and had had numerous scans with contrast over the past 7 1/2 years. I brought this up because contrast can be very damaging to the kidneys and I alerted him to the fact that my medical oncologist has ordered a CT scan with contrast for me, which is scheduled in February. He recommends that I find out from my oncologist if the scan can be done without contrast. If not, he recommends loading my system with fluids prior to the scan. He emphasized that this does not mean the normal 2 liters of water per day, but even more. I am going to call my med onc's office next week to discuss this with his nurse and ask her to get his take on this. I do not feel that the scan is even necessary, but he will balk at cancelling it altogether, so I will have to wait and see what he has to say.
For any of you who may be getting CT scans with contrast, PLEASE, PLEASE,PLEASE drink lots of water prior to and after the scan! Do not let this stuff damage your kidneys! I discussed this with my friend who is a pharmacist who told me that in pharmacy school, the kidneys are studied more than a lot of other parts of the anatomy, so he is very knowledgeable and someone I trust. We both agree that no matter the amount of water intake prior to or after a scan, there is most likely still some harm done to the kidneys, perhaps only minor. However, like in my case, when numerous scans are done, the effects can be cumulative. I guess that, in addition to the radiation exposure, is another good reason to limit scans.
So, I may not be out of the woods entirely, but I am certainly feeling better about all of this and breathing a bit easier. I will have to watch my water intake and make sure I get enough every day. So, tonight when I go out to my favorite hangout, I will be asking for a tankard of water, along with my small margarita--with NO salt!
I hope everyone has a good weekend and I thank you all for your concern and continued support!
Martha
Comments
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Martha
I'm so glad you had such a positive appointment, both with the doctor and with the good results. Sounds like a manageable issue now.
Regarding scans, I know that they can put both us and our doctors more at ease as we continue to be followed up but I do wonder about the necessity of still doing them after the 5 year mark. Thanks again for sharing that information about the contrast issue for our kidneys. That's something I was unaware of.
Enjoy that margarita (my favorite cocktail!) and cheers to your good health.
Janet
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Janetjcruz said:Martha
I'm so glad you had such a positive appointment, both with the doctor and with the good results. Sounds like a manageable issue now.
Regarding scans, I know that they can put both us and our doctors more at ease as we continue to be followed up but I do wonder about the necessity of still doing them after the 5 year mark. Thanks again for sharing that information about the contrast issue for our kidneys. That's something I was unaware of.
Enjoy that margarita (my favorite cocktail!) and cheers to your good health.
Janet
Thank you so much!
Martha
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Martha
This is great news, and very encouraging that you might even go back to stage 1. Thank you for the advice about the contrast. I only have ct scans for the lung cancer not the anal cancer. My gyno checks out my anal and I just had a clear colonoscopy. Have a great weekend, and continued great news. Lori
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Martha-- that is great news!!
Even though I have not "cyber-known" you for very long, your post made my night. To hear somebody in a white coat deliver GOOD news must have been such a delicious thrill for you. For my part, I think I'm going to break out in hives for the rest of my life every time I cross paths with anyone even remotely connected with the medical profession...sheesh. But congrats, and great advice about the water.
Enjoy your margarita tonight, as well as your coffee tomorrow morning.
Carolyn
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Martha.....
Oh my, I am so happy for your good news!!! Though you may not be out of the woods entirely, you are on a clear path. Your added info on contrast and kidneys is very concerning to me and I will surely discuss with my doctor...he'll love that, lol. I unfortunately have quit counting how often I'm scanned but it must be a minimal of 2/yr for almost 5yrs. (mine is not standard follow-up as I have had a second cancer after anal and a recurrance of the initial anal) so a lot of tests. I am scheduled to be scanned again in January but will be interested to hear what my doc has to say.
Please do enjoy your salt free margarita and I'll join you for cofee in the morning!
katheryn
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Thank You Everyone!eihtak said:Martha.....
Oh my, I am so happy for your good news!!! Though you may not be out of the woods entirely, you are on a clear path. Your added info on contrast and kidneys is very concerning to me and I will surely discuss with my doctor...he'll love that, lol. I unfortunately have quit counting how often I'm scanned but it must be a minimal of 2/yr for almost 5yrs. (mine is not standard follow-up as I have had a second cancer after anal and a recurrance of the initial anal) so a lot of tests. I am scheduled to be scanned again in January but will be interested to hear what my doc has to say.
Please do enjoy your salt free margarita and I'll join you for cofee in the morning!
katheryn
Thanks for your messages of support. I am very happy with these results and need to just continue with the fluids (including coffee and margaritas!). I may slosh when I walk, but as long as my kidneys are happy, so am I! Have a good weekend, my friends.
Martha
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GREAT news Martha!
Glad to hear your research and corrective meausres are paying off.
I was told a long time ago that every drug either goes through the liver or the kidneys and this definitely proves that. Less is best as far as I'm concerned and I will definitely be questioning tests with contrast now.
Enjoy your margarita & coffee!
Tracey
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another scan????
hey martha, so glad that you got great news!!!!! now---you are very intelligent....were you not stage 1????? you know the NCCN guidelines ..... i think it is smart that you would carefully consider not having another scan after 7 years NED.....just for info: .I stopped my scans at MD anderson after 4.5 years. i was stage 2 no mo.....we will see later if this was smart..... take care.....sephie
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Sephie, you did drop yoursephie said:another scan????
hey martha, so glad that you got great news!!!!! now---you are very intelligent....were you not stage 1????? you know the NCCN guidelines ..... i think it is smart that you would carefully consider not having another scan after 7 years NED.....just for info: .I stopped my scans at MD anderson after 4.5 years. i was stage 2 no mo.....we will see later if this was smart..... take care.....sephie
Sephie, you did drop your scans? I'm due for my 4 1/2 year cans soon and was wondering. Will you ever go back for a ck up with scans?
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yesLorikat said:Sephie, you did drop your
Sephie, you did drop your scans? I'm due for my 4 1/2 year cans soon and was wondering. Will you ever go back for a ck up with scans?
i did request for them to stop mine..... the radiology team looked at all my results and i was stage 2 NO MO and decided it was ok but they did put my request in the record to cover themselves ..... the NCCN guidelines have changed since i was diagnosed in 2009.....they do not do as many anymore..... sephie
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been releasedLorikat said:Sephie, you did drop your
Sephie, you did drop your scans? I'm due for my 4 1/2 year cans soon and was wondering. Will you ever go back for a ck up with scans?
forgot to tell you that i have been released by the oncologist , surgeon and the radiation team..... no more check ups at all for anal cancer unless i find something.... sephie
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Composed Message to My Oncologistsephie said:been released
forgot to tell you that i have been released by the oncologist , surgeon and the radiation team..... no more check ups at all for anal cancer unless i find something.... sephie
I have composed the following message to my medical oncologist regarding my upcoming scan, which I really think is unnecessary and puts my kidneys, intestines and bones at further risk. All I have to do is hit "send." Any thoughts?
I am a patient of Dr. xxx and have a CT scan (chest/abd/pelvis) scheduled on 2/18/16 with a visit with Dr. xxx on 2/23/16, as continuing follow-up post anal cancer in 2008. In recent months, I have been undergoing testing for Chronic Kidney Disease and have been diagnosed with Stage 2, possibly Stage 3, as per Dr. xxx and Dr. xxx at xxx. I have been advised to avoid IV contrast if at all possible. Due to the fact that I now have compromised renal function, a history of intestinal obstructions, and osteoporosis of hips and spine, I am asking if this upcoming scan is absolutely necessary. I am now over 7 years out of treatment for cancer and am not having any symptoms of recurrence at the primary site and no complaints that would lead me to believe there is any metastasis. I am concerned about receiving any more radiation and also getting IV contrast, given the above issues, and would like to avoid any further potential damage to my intestines, kidneys and bones, if at all possible. I continue to be followed by my colorectal surgeon, Dr. xxx, every 6 months for DRE and anoscope. I will be seen in 6 months by Dr .xxx to see if my kidney function has improved by increasing fluid intake, discontinuation of Niacin and reduced dosage of Aspirin, both for elevated cholesterol. I respectfully ask for Dr. xxx's opinion, after careful consideration of the above, regarding the necessity of this CT scan. Thank you.
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excellentmp327 said:Composed Message to My Oncologist
I have composed the following message to my medical oncologist regarding my upcoming scan, which I really think is unnecessary and puts my kidneys, intestines and bones at further risk. All I have to do is hit "send." Any thoughts?
I am a patient of Dr. xxx and have a CT scan (chest/abd/pelvis) scheduled on 2/18/16 with a visit with Dr. xxx on 2/23/16, as continuing follow-up post anal cancer in 2008. In recent months, I have been undergoing testing for Chronic Kidney Disease and have been diagnosed with Stage 2, possibly Stage 3, as per Dr. xxx and Dr. xxx at xxx. I have been advised to avoid IV contrast if at all possible. Due to the fact that I now have compromised renal function, a history of intestinal obstructions, and osteoporosis of hips and spine, I am asking if this upcoming scan is absolutely necessary. I am now over 7 years out of treatment for cancer and am not having any symptoms of recurrence at the primary site and no complaints that would lead me to believe there is any metastasis. I am concerned about receiving any more radiation and also getting IV contrast, given the above issues, and would like to avoid any further potential damage to my intestines, kidneys and bones, if at all possible. I continue to be followed by my colorectal surgeon, Dr. xxx, every 6 months for DRE and anoscope. I will be seen in 6 months by Dr .xxx to see if my kidney function has improved by increasing fluid intake, discontinuation of Niacin and reduced dosage of Aspirin, both for elevated cholesterol. I respectfully ask for Dr. xxx's opinion, after careful consideration of the above, regarding the necessity of this CT scan. Thank you.
great letter....does not offend anyone....states your concerns clearly....... push send.....hugs....sephie
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Seminarnonichol said:Great news
Martha,
I am happy about your results. Cheers!
Norma
Since learning that I do have Chronic Kidney Disease, I have been trying to learn as much as I can about it. DaVita Dialysis Centers has a support forum, which I joined. I received notice from them about seminars being held at their centers to educate people about kidney disease. I signed up to attend one at my local DaVita center, which I will be attending today. I will try to take good notes and pass on any information that may help any of my friends here.
Martha
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lettermp327 said:Composed Message to My Oncologist
I have composed the following message to my medical oncologist regarding my upcoming scan, which I really think is unnecessary and puts my kidneys, intestines and bones at further risk. All I have to do is hit "send." Any thoughts?
I am a patient of Dr. xxx and have a CT scan (chest/abd/pelvis) scheduled on 2/18/16 with a visit with Dr. xxx on 2/23/16, as continuing follow-up post anal cancer in 2008. In recent months, I have been undergoing testing for Chronic Kidney Disease and have been diagnosed with Stage 2, possibly Stage 3, as per Dr. xxx and Dr. xxx at xxx. I have been advised to avoid IV contrast if at all possible. Due to the fact that I now have compromised renal function, a history of intestinal obstructions, and osteoporosis of hips and spine, I am asking if this upcoming scan is absolutely necessary. I am now over 7 years out of treatment for cancer and am not having any symptoms of recurrence at the primary site and no complaints that would lead me to believe there is any metastasis. I am concerned about receiving any more radiation and also getting IV contrast, given the above issues, and would like to avoid any further potential damage to my intestines, kidneys and bones, if at all possible. I continue to be followed by my colorectal surgeon, Dr. xxx, every 6 months for DRE and anoscope. I will be seen in 6 months by Dr .xxx to see if my kidney function has improved by increasing fluid intake, discontinuation of Niacin and reduced dosage of Aspirin, both for elevated cholesterol. I respectfully ask for Dr. xxx's opinion, after careful consideration of the above, regarding the necessity of this CT scan. Thank you.
Excellent letter. Spells out your concerns with a just the facts style. You ask for the Dr.'s opinion but you don't have to go along with it. Have you spoken with your colorectal surgeon about the necessity of scans given that you still see him/her every six months for exams?
I say hit the send button.
Janet
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Notes From Kidney Seminarmp327 said:Seminar
Since learning that I do have Chronic Kidney Disease, I have been trying to learn as much as I can about it. DaVita Dialysis Centers has a support forum, which I joined. I received notice from them about seminars being held at their centers to educate people about kidney disease. I signed up to attend one at my local DaVita center, which I will be attending today. I will try to take good notes and pass on any information that may help any of my friends here.
Martha
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.
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