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Old 09-16-2011, 12:38 PM   #1
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Unhappy Lab results indicate Chronic Kidney Disease

Hello all. I am new on this board and looking for advice or information from people who are more experienced with kidney disease. I am so distressed that I am finding it very difficult to function. Mostly I'm angry with my doctor and with myself for not being more involved in my own care.

I have had enough experience with the medical world to know that I should get copies of all lab reports. In October of 2010 I was bedridden following a broken right femur and surgery on my left femur as well. I managed to get to the doctor for my physical but neglected to get a copy of the blood work and instead just got readings over the phone. They gave me my cholesterol levels and glucose, etc. and that was the end of it. I was 62 then; just turned 63 now, and female.

I saw my doctor in June for pain in my arms and he ordered bloodwork and at that time I got a copy of October blood report. When I got home I noticed a comment from the lab that my eGFR was 45 and the notation was that if it was low in 3 months, it would indicate CKD. I called my doctors office immediately to see what the results were of the June test and they told me everything was "normal" and I didn't need to worry. My Sermum Creantine was 1.19 in October. I just finished blood work again this past week because I was suffering from horrible fatigue and lower back pain. My eGFR was 1.45 and my serum creantine 1.45. I again called my doctor immediately and his nurse told me it was nothing to be concerned about and that I should ignore comments that the lab makes. She told me if it was anything to be concerned about my doctor would let me know.

After doing internet research I can see this is something to be worried about. I was quite dehydrated in the days leading up to my bloodwork and it took me 4 hours to be able to get them a urine sample. I'm wondering what effect this might have on the outcome of the lab results? I did get ahold of my doctor and he is processing a request through my insurance company for a referral to a Nephrologist at my insistance. Should I go back and get previous blood work and results?? I'm now wondering how long I've had this problem and frankly, I am scared to death.

Thanks for any input!

 
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Old 09-16-2011, 01:06 PM   #2
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Re: Lab results indicate Chronic Kidney Disease

Hi and welcome. First off, your numbers are not that bad, especially if you were dehydrated. In future, make sure you "tank up" the day before. This will give a more accurate picture.

It is a good idea to see a nephrologist. They know all about this stuff and will give you better info than a regular family doc. It does appear as though you do have some kidney damage, but you are in the very early stages. To put it in perspective for you, I didn't go on dialysis until my creatinine was about 10 and it took me 20 years.

There are plenty of things you can do in the meantime to maintain your kidney function. Maintaining normal blood pressure and blood glucose is very important. So is cutting out salt and cutting back on animal protein as it is hard on the kidneys.

I've been through the entire process - 20 years pre-dialysis, 1 year on dialysis, and am now almost 9 years post transplant. Feel free to ask lots of questions.
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Old 09-16-2011, 01:25 PM   #3
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Re: Lab results indicate Chronic Kidney Disease

Thank you, Cora. I've just been through so much that I am not coping well. I feel like this could have been prevented if my doctor had reacted the first time there was a reading indicating a problem. I have rheumatoid arthritis (since age 10) and I've been taking diclofenac for about 13 years now. It's known to cause kidney and liver damage and I asked him 2 years ago if there wasn't a way for me to get off the drug. He just said he wanted me to continue taking it as long as it wasn't a problem. I feel so stupid because I went through this with my husband. In 2007 he was diagnosed with stage IV metastatic melanoma and given 4-6 months to live. There were plenty of signs, including a lung tumor that presented as early as January of 2005 and no doctor told us, or ever mentioned a follow up test. He lived 18 months through an experimental program at U of A Cancer Center. I can't believe I dropped the ball on my own health care.

What I'm concerned about is the rate at which I appear to be declining. In 11 months my GFR went from 47 to 38. I've stopped the diclofenac but that's still 9 points in less than a year.

 
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Old 09-16-2011, 01:35 PM   #4
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Re: Lab results indicate Chronic Kidney Disease

Don't get too caught up in the GFR. It is actually the eGFR and the e stands for estimated. It's not that accurate and very susceptible to being wonky especially if you are dehydrated. As I said, your creatinine is only slightly elevated and you've got plenty of time to see a neph, modify your diet, and get things stable. You may not see improvement, but with today's excellent meds (don't be surprised if an ACE inhibitor or an ARB is prescribed) and knowledge, you may remain stable for a very long time.
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Old 09-16-2011, 01:40 PM   #5
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Re: Lab results indicate Chronic Kidney Disease

Thank you so much Cora. You are obviously a godsend to people like me! To get a diagnosis like this is frightening, to say the least. I am so happy for you, and to hear that you've had such a great success in treating your disease. I know it must have been difficult at many points in your treatment. This is no place for wimps, and I know that! I am sure I will have a lot of questions and I sincerely appreciate you and the peace of mind you have given me.

 
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Old 10-20-2012, 05:37 PM   #6
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Re: Lab results indicate Chronic Kidney Disease

Quote:
Originally Posted by Mangolynn View Post
Hello all. I am new on this board and looking for advice or information from people who are more experienced with kidney disease. I am so distressed that I am finding it very difficult to function. Mostly I'm angry with my doctor and with myself for not being more involved in my own care.

I have had enough experience with the medical world to know that I should get copies of all lab reports. In October of 2010 I was bedridden following a broken right femur and surgery on my left femur as well. I managed to get to the doctor for my physical but neglected to get a copy of the blood work and instead just got readings over the phone. They gave me my cholesterol levels and glucose, etc. and that was the end of it. I was 62 then; just turned 63 now, and female.

I saw my doctor in June for pain in my arms and he ordered bloodwork and at that time I got a copy of October blood report. When I got home I noticed a comment from the lab that my eGFR was 45 and the notation was that if it was low in 3 months, it would indicate CKD. I called my doctors office immediately to see what the results were of the June test and they told me everything was "normal" and I didn't need to worry. My Sermum Creantine was 1.19 in October. I just finished blood work again this past week because I was suffering from horrible fatigue and lower back pain. My eGFR was 1.45 and my serum creantine 1.45. I again called my doctor immediately and his nurse told me it was nothing to be concerned about and that I should ignore comments that the lab makes. She told me if it was anything to be concerned about my doctor would let me know.

After doing internet research I can see this is something to be worried about. I was quite dehydrated in the days leading up to my bloodwork and it took me 4 hours to be able to get them a urine sample. I'm wondering what effect this might have on the outcome of the lab results? I did get ahold of my doctor and he is processing a request through my insurance company for a referral to a Nephrologist at my insistance. Should I go back and get previous blood work and results?? I'm now wondering how long I've had this problem and frankly, I am scared to death.

Thanks for any input!

 
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Old 10-20-2012, 05:53 PM   #7
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Re: Lab results indicate Chronic Kidney Disease

Hi, I was seeing a family doctor for years and I started to ask for a copy of my lab results and saw that my creatin level was high at 1.51 I contacted my doctors nurse and asked why I was told everything was "normal" when in fact the tests show differently. The nurse said your creatin level has been higher but it has come down some so we feel everything is ok. HELLOOOOOOOO I thought are you NUTS. I left the family practice clinic that I had been going to since I was 12, Im now 53 and found a internal medicine doctor who was concerned enough to run more tests. After seeing the results the internest said that I had CKD stage 3. I was so ANGRY with my other doctor for blowing of the test results. I feel had I not found a better doctor I would be in kidney failure before the doctor would of maybe done something. BOTTOM line you are your own best doctor, if it doesnt feel or look right get another doctor.

 
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Old 10-22-2012, 08:20 AM   #8
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Re: Lab results indicate Chronic Kidney Disease

Your story is my story exactly. I am shocked. I feel just like you feel, I'm angry & I feel cheated. I'm 62 & I have stage 3 kidney disease. I happened to see my lab report & google some of the results that were off & there it was plain as day... CKD 3. I also had a heated discussion with the doctor's nurse. Pretty much got the same response.They never said anything about my lab results excepted that my D was low. You can never assume your doctor is doing the right thing. I'm seeing a great nephrologist now but it doesn't help me feel any better about what happened.

 
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Old 10-29-2012, 01:23 PM   #9
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Re: Lab results indicate Chronic Kidney Disease

Hi!!! Please dont be that anxious!! I have a kidney transplant and thanks God everything is OK right now. I had dyalisis for 3 long years before I get my kidney. My serum creatinine was up to 7! Many transplant receptor live with 1.5 serum creatinine . Mine is 0.85 now. Diet is the best control for it. Try yoga and Tai Chi as exercise everyday. The intake of salt and animal proteins may be low and have to be very balanced with vegetables and fruits.
Here in my city, Cali, Colombia fortunately we have the best Hospital for transplant events in Latin America and can be at the same level of many of your country. I am very proud of the Fundacion Valle del Lili and very grateful because they save my life and hundreds more.

 
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