Ckd 3 How often to Monitor labs?

[nancyckd]

CKD stage 3) Hello all!  I am brand new to this forum. Feeling a bit alone and confused about my dg. I was so pleased to find this group and look forward to sharing.
I was diagnosed with CKD/3 a few months ago. Im doing well. GFR on the higher end - fluctuates between 49 and 69. Mainly in the mid 50s.
So my question...! I would like to get some feed back on my nephrologist's approach with me.
  Today my labs were good with gfr up to 69. This has happened before then a few months later will drop to 55 or 50.  I was referred to this specialist about a year ago. She was monitoring me about every 4 mos. Today she said to come back in a year! I left feeling confused about my diagnosis. Did i even truly have ckd?  As i was leaving., i asked what should i tell other physicians when they need background info on my condition? The Dr said to just tell them that sometimes my  creatinine levels are elevated. Huh?! I felt dismissed and because GFR swing back up to 69, i was not being taken seriously as a ckd patient. Tonite I checked  her records online regarding our appt. today, and her diagnosis remained
CKD 3. Should i have even questioned it?
I shouldnt have to look on a chart to see whats occuring with my health! I am wondering what others think about how this was handled by her. Regardless, i will request that my primary monitor my labs every 4 months. Any thoughts would be much appreciated. Perhaps i am over- reacting. But I felt dismissed and frustrated.  (I do not have proteneuria and my blood pressure is stable. ) Do you think  Getting labs done annually is enough? Sorry this was so long!!!

[nancyckd]

Hi peter
I can't seem to find your last message to me!!! But I was so pleased to hear from you. appreciate you sharing the details of your situation
( how frustrating for you!) and your helpful suggestions.

  The Drs do not know exactly what caused my ckd. The only "name I can give you is what I saw listed on my medical chart ( which I can now access online. Not all of it- but lab results and diagnosis are listed. It said CKD stage 3 and. "  Hypertensive  Chronic kidney disease" . I had high blood pressure years ago but has been well controlled by low dose of medication. I believe that it was a combination of my daily use of NSAIDS and hypertension that may have triggered the disease---- ???

It's interesting that you went "vegan". I stopped eating meat two months ago ( mainly for ethical reasons, then I realized it would also, hopefully ease the stress on my kidneys)

Did you initially see any significant drop in creatinine levels ? Sadly, you say in any case you have dropped GFR 5 to 6 points yearly...

Do you think it may help since I am at such an early stage of ckd? Sorry if I am rambling! I'm trying to remember your message and struggling a bit!

I'm so sorry to hear how unsupported you have been by the medics. Do you see a nephrologist? I wonder whether you have any choice what Dr to see with the UK medical system.
I will be seeing my general Dr in a couple of weeks and let you know what happens. If you can write me before then about the vegetarian factor, I would very much appreciate it.

Thank you so much for your helpful advice. I hope you will continue to let me know how you are doing. The fatigue must be awfy for you. I hope you do not have a stress job or are perhaps , retired so you can go at your own comfortable pace.

I hope my "American grammar" is making sense to you!!!
All my best
Nancy

[nancyckd]

Hi peter
I can't seem to find your last message to me!!! But I was so pleased to hear from you. appreciate you sharing the details of your situation
( how frustrating for you!) and your helpful suggestions.

  The Drs do not know exactly what caused my ckd. The only "name I can give you is what I saw listed on my medical chart ( which I can now access online. Not all of it- but lab results and diagnosis are listed. It said CKD stage 3 and. "  Hypertensive  Chronic kidney disease" . I had high blood pressure years ago but has been well controlled by low dose of medication. I believe that it was a combination of my daily use of NSAIDS and hypertension that may have triggered the disease---- ???

It's interesting that you went "vegan". I stopped eating meat two months ago ( mainly for ethical reasons, then I realized it would also, hopefully ease the stress on my kidneys)

Did you initially see any significant drop in creatinine levels ? Sadly, you say in any case you have dropped GFR 5 to 6 points yearly...

Do you think it may help since I am at such an early stage of ckd? Sorry if I am rambling! I'm trying to remember your message and struggling a bit!

I'm so sorry to hear how unsupported you have been by the medics. Do you see a nephrologist? I wonder whether you have any choice what Dr to see with the UK medical system.
I will be seeing my general Dr in a couple of weeks and let you know what happens. If you can write me before then about the vegetarian factor, I would very much appreciate it.

Thank you so much for your helpful advice. I hope you will continue to let me know how you are doing. The fatigue must be awfy for you. I hope you do not have a stress job or are perhaps , retired so you can go at your own comfortable pace.

I hope my "American grammar" is making sense to you!!!
All my best
Nancy

[nancyckd]

I just wrote a very ling, detailed reply in response to the comment you posted. Somehow it got deleted (grrrrrr!!)
So this will be brief. Thank you so much fir your thoughtful and  valuable feedback.
The Dr does not seem to know the cause if my ckd-
I did have high blood pressure years ago. I am taking a low dose med that seems to be very effective.
My dad died at. 84, of "renal failure" with a dialysis machine next to his bed in the hospital. He was set to be discharged to a nursing home where dialysis would be done. However- sadly he only lasted a day after his first (emergency dialysis treatment)
He was never formally diagnosed with ckd. But i recall his labs being abnormal over many years but didnot garner  any attention

So there may be a genetic link? And i took NSAIDs frequently and perhaps that was a major factor.
Interestingly, before my last lab work- up I had stopped eating meat starting a couple of weeks before. That was the first normal creatine number ive had in a long time (.9) When i demand (!) my next test , it will have been a few months eating  only a vegetarian diet. I understand meat  eating can affect creatine levels and wonder if my next labs  might come out normal because  of that.
I do a lot of research online and i understand there is no consensus( at least here in America) about the role of diet in helping to prevent further decline.
Oh! Although Im an american living in California,
like you- my brother and wife live in scotland.
   I hope you are doing " ok"- Youve lost so many gfr points iver the years. And i hope you jave mot progressed to stage 4. Please let me know how you are doing, if you have the time.
Once again, thanks so very much for your  helpful and supportive feedback. Hope to hear from you again !

[nancyckd]

I just wrote a very ling, detailed reply in response to the comment you posted. Somehow it got deleted (grrrrrr!!)
So this will be brief. Thank you so much fir your thoughtful and  valuable feedback.
The Dr does not seem to know the cause if my ckd-
I did have high blood pressure years ago. I am taking a low dose med that seems to be very effective.
My dad died at. 84, of "renal failure" with a dialysis machine next to his bed in the hospital. He was set to be discharged to a nursing home where dialysis would be done. However- sadly he only lasted a day after his first (emergency dialysis treatment)
He was never formally diagnosed with ckd. But i recall his labs being abnormal over many years but didnot garner  any attention

So there may be a genetic link? And i took NSAIDs frequently and perhaps that was a major factor.
Interestingly, before my last lab work- up I had stopped eating meat starting a couple of weeks before. That was the first normal creatine number ive had in a long time (.9) When i demand (!) my next test , it will have been a few months eating  only a vegetarian diet. I understand meat  eating can affect creatine levels and wonder if my next labs  might come out normal because  of that.
I do a lot of research online and i understand there is no consensus( at least here in America) about the role of diet in helping to prevent further decline.
Oh! Although Im an american living in California,
like you- my brother and wife live in scotland.
   I hope you are doing " ok"- Youve lost so many gfr points iver the years. And i hope you jave mot progressed to stage 4. Please let me know how you are doing, if you have the time.
Once again, thanks so very much for your  helpful and supportive feedback. Hope to hear from you again !

[philnoir]

Hi Nancy. Nephrology is not my department, but I do have some background.

I don't think you're overreacting. As a former medical professional (veterinarian), I've always believed that doctor and patient have to work together to achieve positive health outcomes. (Maybe because my patients couldn't look up symptoms on WebMD and tell me why they think they had a certain disease. Did you know that PCPs in America absolutely loath Dr. Mahmet Oz?)

But many doctors don't have the partnership philosophy -- some doctors are maladjusted twerps with paranoid tendencies and a God complex. That's their problem.

Go find one that likes to work with informed, motivated patients.

But before you can partner with your doctor, you've got to be able to speak her language. I think that you can do that and from your intelligent question, you've made a good start.

So why not learn all that you can?

Start with the National Kidney Foundation website:

https://www.kidney.org/kidneydisease/aboutckd

I know you're Canadian -- you can still utilize the NKF facilities.

Read the articles. Learn about normal kidney functions, and glomerular disease in particular.

With a GFR above 60, you are a CKD-II. That is maybe why your doc sent you home with a "come back in a year" directive.

If I were you, I'd have it checked again in 3 months. If you score 60 or above, then try again in 6 months.

In medicine, we call this "keeping an eye on things." Maybe your doctor was out sick on that day when we covered "keeping an eye on things" in class?

This looks like a good website for patients, also.

http://www.ckdstage.com/ckd-stages/

This site is interesting:

http://ckdepi.org/equations/gfr-calculator/

This is where they teach you to calculate a GFR by hand with pencil and paper. The calculation is based on two lab values and some simple arithmetic. If you can add, subtract, multiply, and divide, then you can calculate a GFR.

Given your results, you can learn to calculate your own GFR -- without the official "Mee Doctor" iPad.

Whip out a pencil and paper, and calculate your new GFR in front of your doctor sometime -- she will then begin to keep an eye on you.

These sites teach you the basics and meant for patients. Once you learn these basics, you are ready for grad school. No need to pass the MCAT for this school.

Nephrology is about mastering the anatomy and physiology of the kidney. Granted, its a complex organ, but it ain't brain surgery.

I'm an old sheep doctor, but I have chronic spine disease and chronic pain. So I study neurology and pain management text books.

I'm also poor because I never liked working with poodles and kitty cats. There are plenty of well-heeled vets who take great care of Fifi and Fluffy. I preferred working with elephants in school, and extracting (usually dead) coyotes from picket-wire sheep pens.

I can no longer have fun like that, so I've learned to be a good pain doctor. You can learn to be a good nephrologist.

I can't afford expensive medical textbooks -- no problemo. The used medical textbook market is thriving.

While new doctors need the latest information in a textbook, as a patient, it doesn't matter if you have the latest diagnostic and treatment techniques. Actually, in nephrology, the major work was done may years ago so a 10 year old textbook will teach you all you need to know.

If you want newer information, then you read the medical literature. There's a problem with this, as a few publishers like to make you pay big bucks to read it. You have access to abstracts and conclusions on PubMed and full text papers on PMC if you go in for that kind of stuff.

Sometimes I need to read the whole report, especially in my field. You don't need that in nephrology.

But if you want to read it, PubMed is here:

http://www.ncbi.nlm.nih.gov/pubmed/?term=nephrology

and PMC is here:

http://www.ncbi.nlm.nih.gov/pmc/?term=nephrology

They are search engines. Simple, like Google.

Medscape is a service of the National Institute of Health (NIH). Their website is here:

http://www.medscape.com/nephrology

Medscape is almost like having a textbook online.

Create a free account, and get regular updates about nephrology.

You'll also find other sources if you learn to Google search accurately. Sometimes, entire textbooks are available, and many medical school lectures are now available on YouTube. I've learned much about neurology using YouTube class material provided by excellent teachers.

One more thing -- social workers and dietitians are both knowledgeable sources of information about living with CKD. Do you have an access to these resources? If not, find them within your medical system. They are invaluable.

The name of the game is to stay out of dialysis. You don't want to be there. You want to keep your kidneys functioning for as long as you need them. Your dietitian can help.

Perhaps you should find a better nephrologist -- one who is a better communicator?

I wish you the very best of health. As I said, I don't hang around here, so if you need me, send me a private message.

Best wishes.

[Peterhsede3w]

Hello Nancy,

Sorry it would seem you have no replies here. The forum doesnt seem that well attended sadly. First thing is do not panic. The kindeys are amazingly overengineered, thank God, and you have plenty of spare capacity at 69. It's only once you get below gfr20 that things start to get complicated.

Ideally they will see you every six months if the decline is slow. But intially I would have thought they might see you every 3 or 4 mths to see what rate of decline you have. What is the exact name of your CKD? Mine is IgANepropathy (Bergers Disease) and I have been losing around 6pts per year since 1993. Maybe you have a relatively benign condition and so they do not expect much decline but still I'd have thought they would do a repeat check pretty quickly. If you have good BP (low) then that is great news. Remember we are what we eat so look after yourself and quit any garbage.

Sadly here in the UK the health services are pretty abysmal in my experience. They have zero interest in why we have this disease or prevention so its a help yourself situation. No doubt when the kidneys fail the system will kick in but until then we seem pretty much alone and they dont take kindly to anyone bucking the system. But if you are unduly concerned about a neglectful attitude from your nephro then change them. God Bless.

[Peterhsede3w]

Hello