UPDATE
Hello Everyone. Thursday was my first appointment with the nephrologist to discuss my troubling kidney function blood tests, run within the past 2 1/2 months by my internist and my medical oncologist. I had to travel to a nearby town for this appointment, so it was get up early and get moving. My husband and I arrived early, so, not being anxious to go inside the office, we sat in the truck for awhile and my husband checked his messages. Finally, it came time to go in.
The receptionist was a guy (a nice change!) who was very friendly and cheerful. After a short wait, I was called back to a room. I had taken copies of a lot of my medical records, including recent blood work, scans, etc., so the nurse sat down and went through them. She finally decided to make copies of everything and left, telling me that the doctor would be in shortly.
A few minutes later, the doctor came in with my records in hand. This doctor is originally from Pakistan, so I was worried that I would have a difficult time understanding him. I admit, I did have to listen very closely when he spoke, but I caught everything that he said. I found him to be caring and sincerely concerned about my situation.
He asked about any symptoms I was having and I told him that in the past couple of weeks I may have been experiencing a mild UTI, but nothing else. I told him I was urinating more frequently lately, due to my deliberate increase in fluid intake. We discussed my past use of n-saids, primarily Advil, and he stated that that could be a contributing factor, but one that could be reversed with discontinuation of the OTC meds. I told him I had not taken any Advil for about 2 months now, on the advice of my internist and also a friend who is a pharmacist, and he said the testing that he would order should show whether or not that has helped. However, he did not sound real confident that that alone would significantly improve my numbers. He told me I was not the typical candidate for kidney disease, due to the fact that I do not have hypertension or diabetes, but that there are other things that can cause kidney disease. He is aware of my history of anal cancer and the treatment that I had, but did not say one way or the other if the radiation may be a contributing factor.
We also discussed my numerous scans in the past 7+ years and that I had had IV contrast with some of those scans. I told him that my medical oncologist has ordered another CT scan with contrast for me in February and that I am having concerns about getting more contrast. He said that we will wait for results on the tests that he was going to order and based on that, he will notify my med onc if he feels I should not have contrast. If my med onc insists on me having the CT scan with contrast, then the nephrologist will recommend that I get IV fluids prior to and following the scan. I was already having serious doubts about even needing the damn scan, so I may just call the whole thing off after I hear what is going on with my kidneys. I am going to be really pissed off if I beat cancer only to die from kidney failure!
He asked me about my fluid intake and I had to admit to him that I have never been good at hydration, but that since I have been made aware of my bad kidney function tests, I have been trying to drink more water. He told me that all fluids (I'm guessing all but carbonated and alcoholic fluids, although he did not specify that) count as part of my daily intake, including coffee. That was probably the best news I received. He recommended that I drink 70 ounces of fluid per day. Being a small person, that is going to be a challenge for me, but I have my 64 oz. pitcher out on the counter now, filled to the spout to include those last 6 ounces, and everytime I go in the kitchen, I will try to drink a little at a time.
He ordered a 48-hour urine collection study to determine how much creatinine was remaining in my body and not being excreted. A couple of years ago, I had to do a 24-hour urine collection study, as per my gynecologist, to determine the amount of calcium being excreted, as part of her evaluation of my bone health. This time I get to fill two great big jugs! The worst part is having to keep it cool, which means even in the middle of the night, having to go to the basement frig, taking the jug upstairs, pouring into it the latest collection, then trotting back to the basement to put it back in the frig. That is way too much fun, especially in the middle of the night! I am going to start this collection process on Sunday morning so I can take in the specimen on Tuesday, as it needs to be delivered to their office as near to end of the 48 hours as possible, at which time they will also draw more blood.
I have to kind of laugh about taking these two jugs of urine to a town that is about 30 miles away. You see, I live in Georgia, the home of moonshine runs back in the days of prohibition. I guess I'm doing my own kind of moonshine run, all perfectly legal, of course, but a bit hard to explain if I should be pulled over for speeding!
"No sir, it's not whiskey, it REALLY IS urine!" LOL!Anyway, based on the information that I provided to the nephrologist yesterday, he feels that I may be in Stage 2 of Chronic Kidney Disease. Until the next round of testing is all in, he cannot, of course, make a definitive diagnosis. I am to return in 6 weeks to discuss all of the findings. Unfortunately, this doctor will not be in the office at that time, so I am scheduled to see one of his colleagues, another foreign educated physician. So once again, I will have to listen carefully!
I was diagnosed with hydrocephalus way back in 1993 and I never once have felt any anger about that diagnosis. It really hasn't had much of an impact on my life. When I learned in June 2008 that I had anal cancer, I was angry at first, but once I got through treatment and felt like I had my life back, those feelings of anger left. Despite ongoing bowel issues and the occasional intestinal blockage, I've tried really hard not to become an angry person. But now these kidney issues have come into my life and I must say I am just a bit pissed off about it. I don't know when it ends. I've really had enough. Add to that trying to deal with my Mom and her dementia issues from 600 miles away and I find myself just wanting to scream some days.
All that said, I am going to keep on going, fingers crossed, prayers said, and not going to let anger rule my life. There is still lots of sorting out to do and we shall see how this all turns out. Thanks for listening and, as always, for your ongoing support. Hugs to you all.
Martha
Comments
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what a hard thing to deal with
soooo sorry, martha,.....i know you are tired of all of this...it is so hard to keep on having a great attitude when another problem arises..... BUT....your numbers are going to get normal or close to normal now that you drink more water.... you are flushing your kidneys out.... i just know that you will NOT have kidney disease.....hugs to you..... sephie
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Martha
So sorry to hear of your renal problems:( I do not blame you for being angry! It's just not fair! I will be following your progress. Hope your are going to be ok.
Nic
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Martha....
You are most surely in my thoughts and prayers for better news on your kidney issue. Wouldn't it be great if we could just turn our feelings off and on when they interfered with our life!
I can relate to your anger. Being diagnosed with cancer 3 times now, and even this last time with mets to my lung, I was admittedly concerned, worried and saddened at times....but still never angry. But, the blood clot on my good lung really gets me!!! I smiled when you said I am going to be really pissed off if I beat cancer only to die from kidney failure! Well, not smile as in happy but I just told a friend this afternoon, "I'd never want to think I went through all this cancer treatment, be feeling great, then die from a pulmonary embolism!!"
I too will have scans next week to see where I'm at, but as in the past, feel great.....just don't trust that feeling anymore.
On the hydration, I have tried to drink throughout the day, and for me sipping on hot tea is helpful, but even more, I eat TONS of watermellon and get a lot of my fluids that way.
Again, thinking of you and praying for good news.
katheryn
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Thank You!eihtak said:Martha....
You are most surely in my thoughts and prayers for better news on your kidney issue. Wouldn't it be great if we could just turn our feelings off and on when they interfered with our life!
I can relate to your anger. Being diagnosed with cancer 3 times now, and even this last time with mets to my lung, I was admittedly concerned, worried and saddened at times....but still never angry. But, the blood clot on my good lung really gets me!!! I smiled when you said I am going to be really pissed off if I beat cancer only to die from kidney failure! Well, not smile as in happy but I just told a friend this afternoon, "I'd never want to think I went through all this cancer treatment, be feeling great, then die from a pulmonary embolism!!"
I too will have scans next week to see where I'm at, but as in the past, feel great.....just don't trust that feeling anymore.
On the hydration, I have tried to drink throughout the day, and for me sipping on hot tea is helpful, but even more, I eat TONS of watermellon and get a lot of my fluids that way.
Again, thinking of you and praying for good news.
katheryn
Thank you, everyone, for your words of support. I appreciate it so very, very much!
But get this! I was finally able to get my patient portal set up with the nephrologist's office and they already had my blood work and urinalysis results on there. Except for a couple of minor abnormalities, EVERYTHING WAS NORMAL! I was especially happy to see that all of the kidney function tests were normal! I tell you, this was such a great relief! I do not know what brought my numbers back within normal range, but probably a combination of the efforts I've made with more fluid intake and not taking any n-saids for awhile.
I am still collecting urine for the 48-hour creatinine clearance and I'm hoping I will get the same good news on that, along with the bloodwork that they will do on Tuesday when I take the two jugs-o-pee back. Please think good thoughts for me!
I am going to sleep better tonight, knowing that perhaps my kidneys are doing their job after all.
Thanks again everyone!Martha
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Yayyy!!!mp327 said:Thank You!
Thank you, everyone, for your words of support. I appreciate it so very, very much!
But get this! I was finally able to get my patient portal set up with the nephrologist's office and they already had my blood work and urinalysis results on there. Except for a couple of minor abnormalities, EVERYTHING WAS NORMAL! I was especially happy to see that all of the kidney function tests were normal! I tell you, this was such a great relief! I do not know what brought my numbers back within normal range, but probably a combination of the efforts I've made with more fluid intake and not taking any n-saids for awhile.
I am still collecting urine for the 48-hour creatinine clearance and I'm hoping I will get the same good news on that, along with the bloodwork that they will do on Tuesday when I take the two jugs-o-pee back. Please think good thoughts for me!
I am going to sleep better tonight, knowing that perhaps my kidneys are doing their job after all.
Thanks again everyone!Martha
Congratulations!
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Awesome News Martha!mp327 said:Thank You!
Thank you, everyone, for your words of support. I appreciate it so very, very much!
But get this! I was finally able to get my patient portal set up with the nephrologist's office and they already had my blood work and urinalysis results on there. Except for a couple of minor abnormalities, EVERYTHING WAS NORMAL! I was especially happy to see that all of the kidney function tests were normal! I tell you, this was such a great relief! I do not know what brought my numbers back within normal range, but probably a combination of the efforts I've made with more fluid intake and not taking any n-saids for awhile.
I am still collecting urine for the 48-hour creatinine clearance and I'm hoping I will get the same good news on that, along with the bloodwork that they will do on Tuesday when I take the two jugs-o-pee back. Please think good thoughts for me!
I am going to sleep better tonight, knowing that perhaps my kidneys are doing their job after all.
Thanks again everyone!Martha
I wish you more improvement in your health.
After 2.5 years into this journey lately I have been feeling a lot of anger as well. Maybe it is just the normal phase of the healing process, maybe I just have too much to deal with. The constant frustration with my colostomy, work and lately marital issues just got too much to handle. I don't know if it's my weakness or I have too much trouble to deal with. I don't think I'm weak. I work hard, I carefully consider every decision I make and I take care of everything that needs to be done. But sometimes I run out of mental and physical energy.
All the best,
Laz
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Hi Lazlp1964 said:Awesome News Martha!
I wish you more improvement in your health.
After 2.5 years into this journey lately I have been feeling a lot of anger as well. Maybe it is just the normal phase of the healing process, maybe I just have too much to deal with. The constant frustration with my colostomy, work and lately marital issues just got too much to handle. I don't know if it's my weakness or I have too much trouble to deal with. I don't think I'm weak. I work hard, I carefully consider every decision I make and I take care of everything that needs to be done. But sometimes I run out of mental and physical energy.
All the best,
Laz
I'm sorry that you have been struggling with so many things. It appears that the road after treatment can be a very bumpy one for some of us. I keep thinking that sooner or later things are going to get better, that is my hope anyway. My good news yesterday was somewhat tempered when my husband realized that our medical insurance will be changing at the beginning of next year and that my coverage for radiology services will not be as good as in the past, i.e. more out of pocket for me. However, I am seeing a bright side to this--I can perhaps use it as another reason why I should not have anymore scans! My medical oncologist and I may go to the mat on that one, but I'm up for a good fight. lol! I have been wanting to discontinue scans for awhile now. I think they may be contributing to my whacky kidney function tests and they certainly don't do much for my anxiety level. It's time to quit.
I hear you about the energy needed to keep going through all of this. It is sometimes overwhelming. My husband also has some medical issues that need to be addressed. He keeps saying that he will get an appointment as soon as I don't have anymore alarms going off. I told him that may never happen so he needs to quit making excuses. I truly believe that cancer is a chronic condition, even when the disease itself is gone. It leaves so many things in its wake--long term side effects and lots of continuing stress and anxiety.
I know you will hang in there, as will I. I wish you all the very best, my friend.
Martha
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Marthamp327 said:Hi Laz
I'm sorry that you have been struggling with so many things. It appears that the road after treatment can be a very bumpy one for some of us. I keep thinking that sooner or later things are going to get better, that is my hope anyway. My good news yesterday was somewhat tempered when my husband realized that our medical insurance will be changing at the beginning of next year and that my coverage for radiology services will not be as good as in the past, i.e. more out of pocket for me. However, I am seeing a bright side to this--I can perhaps use it as another reason why I should not have anymore scans! My medical oncologist and I may go to the mat on that one, but I'm up for a good fight. lol! I have been wanting to discontinue scans for awhile now. I think they may be contributing to my whacky kidney function tests and they certainly don't do much for my anxiety level. It's time to quit.
I hear you about the energy needed to keep going through all of this. It is sometimes overwhelming. My husband also has some medical issues that need to be addressed. He keeps saying that he will get an appointment as soon as I don't have anymore alarms going off. I told him that may never happen so he needs to quit making excuses. I truly believe that cancer is a chronic condition, even when the disease itself is gone. It leaves so many things in its wake--long term side effects and lots of continuing stress and anxiety.
I know you will hang in there, as will I. I wish you all the very best, my friend.
Martha
Oh, Martha, what a relief that your kidney function has returned to normal, you definitely did not need that on top of everything else you've had to endure. I am so happy for you - if I had the energy I would do a happy dance, but you'll have to settle for congratulations, and I will drink a toast to your continued good health with a nice, big glass of water!!
Laz, I'm sorry that your situation is getting you down. "surviving" cancer is not for the faint-hearted. People think that just because you don't have any active tumors any more that everything is wonderful and you should be grateful that things are totally back to normal and you should enjoy life maybe even more because you had a close call and beat it. Hah! They don't know about the colostomies and the bowel issues and the fistulas and the scares ... well, we all know and sympathize. My thoughts are with you and I hope you get through this rough patch sooner rather than later.
Carol
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CarolCazz said:Martha
Oh, Martha, what a relief that your kidney function has returned to normal, you definitely did not need that on top of everything else you've had to endure. I am so happy for you - if I had the energy I would do a happy dance, but you'll have to settle for congratulations, and I will drink a toast to your continued good health with a nice, big glass of water!!
Laz, I'm sorry that your situation is getting you down. "surviving" cancer is not for the faint-hearted. People think that just because you don't have any active tumors any more that everything is wonderful and you should be grateful that things are totally back to normal and you should enjoy life maybe even more because you had a close call and beat it. Hah! They don't know about the colostomies and the bowel issues and the fistulas and the scares ... well, we all know and sympathize. My thoughts are with you and I hope you get through this rough patch sooner rather than later.
Carol
Thank you for your comments. I know you are not feeling up to par, so it means a lot to me that you used some of your precious energy to respond to my post. I am not getting carried away with any celebration just yet, as I still have to get good results on the 48-hour urine collection test and the next round of blood work. But I am much more hopeful than I was prior to getting the results from last Thursday's tests.
You take good care and I will keep you in my thoughts and prayers.
Martha
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As always
you inspire us. I've been thinking that I really need to hydrate more and after reading of your troubles, will double my efforts. I think part of the problem is every trip to the bathroom can be such a time-consuming adventure.
I hope that your test results are good (couldn't decide whether to say positive or negative). I will be keeping you in my thoughts and sending positive energy your way!
Judy
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Marthamp327 said:Thank You!
Thank you, everyone, for your words of support. I appreciate it so very, very much!
But get this! I was finally able to get my patient portal set up with the nephrologist's office and they already had my blood work and urinalysis results on there. Except for a couple of minor abnormalities, EVERYTHING WAS NORMAL! I was especially happy to see that all of the kidney function tests were normal! I tell you, this was such a great relief! I do not know what brought my numbers back within normal range, but probably a combination of the efforts I've made with more fluid intake and not taking any n-saids for awhile.
I am still collecting urine for the 48-hour creatinine clearance and I'm hoping I will get the same good news on that, along with the bloodwork that they will do on Tuesday when I take the two jugs-o-pee back. Please think good thoughts for me!
I am going to sleep better tonight, knowing that perhaps my kidneys are doing their job after all.
Thanks again everyone!Martha
Martha, This is great news! Im so happy your results were within normal range.
Now, for the 2 gallons of pee, oh my thats a lot of pee. Please be careful with that, so you won't have to do that again. I hope the creatinine will come out normal as well.
I am sending my postivie thoughts your way. Lori
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Marthajudyv3 said:As always
you inspire us. I've been thinking that I really need to hydrate more and after reading of your troubles, will double my efforts. I think part of the problem is every trip to the bathroom can be such a time-consuming adventure.
I hope that your test results are good (couldn't decide whether to say positive or negative). I will be keeping you in my thoughts and sending positive energy your way!
Judy
I am catching up on posts and started reading yours from the beginning. I am so relieved to see the latest update! You have been so strong for so many. Hugs to you!
liz
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Thank you!lizdeli said:Martha
I am catching up on posts and started reading yours from the beginning. I am so relieved to see the latest update! You have been so strong for so many. Hugs to you!
liz
Thank you, everyone! I am still awaiting results of the 48-hour study and the most recent bloodwork. In the meantime, I continue to drink, drink, drink!
Martha
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Martha, I will keep mymp327 said:Thank You!
Thank you, everyone, for your words of support. I appreciate it so very, very much!
But get this! I was finally able to get my patient portal set up with the nephrologist's office and they already had my blood work and urinalysis results on there. Except for a couple of minor abnormalities, EVERYTHING WAS NORMAL! I was especially happy to see that all of the kidney function tests were normal! I tell you, this was such a great relief! I do not know what brought my numbers back within normal range, but probably a combination of the efforts I've made with more fluid intake and not taking any n-saids for awhile.
I am still collecting urine for the 48-hour creatinine clearance and I'm hoping I will get the same good news on that, along with the bloodwork that they will do on Tuesday when I take the two jugs-o-pee back. Please think good thoughts for me!
I am going to sleep better tonight, knowing that perhaps my kidneys are doing their job after all.
Thanks again everyone!Martha
Martha, I will keep my fingers crossed that everything goes well from here on.... These things are so scary......
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WOW Marthamp327 said:Thank you!
Thank you, everyone! I am still awaiting results of the 48-hour study and the most recent bloodwork. In the meantime, I continue to drink, drink, drink!
Martha
Once again you are a wealth of information. I hope all goes well for you and you get this issue under control.
Well wishes,
Tracey
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Updatemp327 said:Tracey
Thank you.
I was able to get the results of the 48-hour urine creatinine clearance test and latest blood work on the patient portal. I was so hoping for another good report, but I'm disappointed and somewhat confused by these results. After drinking gallons of water to do the test, my serum creatinine this time was 1.06 which, according to the range of normal given this time (.50-1.50), appears normal to me. However, it is marked "HIGH" on the report--so I'm confused! My creatinine clearance was low, as was my GFR. My biggest concern deals with the protein. The result for the 24-hour calculated is 416.0 with normal being 30.0-150.0. Yikes! However, the Protein Total Urine was within normal limits. Also, the report says "24-hour urine." I did a 48-hour collection. So, I am thoroughly confused about these results. I have dropped a copy of these off to my internist's office and perhaps I will get some clarification from her prior to my follow-up appt. with the nephrologist, which isn't until Dec. 4th.
That's all I know for now.
Martha
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That IS confusingmp327 said:Update
I was able to get the results of the 48-hour urine creatinine clearance test and latest blood work on the patient portal. I was so hoping for another good report, but I'm disappointed and somewhat confused by these results. After drinking gallons of water to do the test, my serum creatinine this time was 1.06 which, according to the range of normal given this time (.50-1.50), appears normal to me. However, it is marked "HIGH" on the report--so I'm confused! My creatinine clearance was low, as was my GFR. My biggest concern deals with the protein. The result for the 24-hour calculated is 416.0 with normal being 30.0-150.0. Yikes! However, the Protein Total Urine was within normal limits. Also, the report says "24-hour urine." I did a 48-hour collection. So, I am thoroughly confused about these results. I have dropped a copy of these off to my internist's office and perhaps I will get some clarification from her prior to my follow-up appt. with the nephrologist, which isn't until Dec. 4th.
That's all I know for now.
Martha
Maybe the lab made some mistakes?
Will be interested to hear what your internist says....
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MarthaRoseC said:That IS confusing
Maybe the lab made some mistakes?
Will be interested to hear what your internist says....
Very confusing. I have had labs that were messed up and on one occasion had to re-take them for a total of 3 times. They were general labs, urine, red blood count, etc for my regular physical. It could be that yours were analyzed incorrectly I hope you get the clarity you need soon!
liz
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