What is really going on?

[Irelandy]

I finally got to see a nephrologist last week. He told me that my medical records showed that my kidney function had been in decline since 2011. I only found out that I had CKD last June when an Endicrinologist said my kidney function was at 25%. I came home and looked it up on the internet....that was how I found out!! Looking at other posts on this site I find that this was not a unique experience. Why are doctors witholding such vital information? Surely I had to come through stages 2, 3a and 3b to arrive at this. I would be interested to hear your experiences and trying to get whatever the taboo is lifted. Any ideas out there, thanks, Andy

[Hidden]

I found myself in the same boat as you. I found out a few months ago that I was at Stage 3A. Prior to that I had checked my previous lab values and saw that the doctor I was seeing had posted in a lengthy diatribe on testing results that I was Stage 2. He never said anything to me. When I confronted him about this, he told me that he didn't place a lot of stock in the GFR for telling him about my CKD.

My new nephrologist told me that I probably had been in decline for about 3 years. In doing my own research, which by the way is always ongoing, I have never shown any of the symptoms others mention, and to this day I still don't.

The only thing I was able to do was to take my GFR of 32 and get proactive. I've changed my diet to a 100% kidney-friendly one, upped my exercise program and took a hard look at my medications. At that time I was on one med for Type II Diabetes, and 3 meds for Hypertension. A new PCP stopped the T2D med and now I have it (still) under control with diet and exercise. She also stopped two of my blood pressure meds and I'm only on one now. Those were the biggest changes and on my most recent lab results, my GFR went up 3 points to 35.

The nephrologist wants me to monitor all my numbers and have new values taken again in mid-October to see if he can pinpoint the cause since he doesn't feel it was due to the T2D. He advised me to look at the possibility of a Kidney Biopsy to determine why the fluctuation is happening since he doesn't believe it was from the T2D. My PCP agrees with this and those two doctors (PCP and Nephrologist), along with my Renal Dietitian I'm comfortable knowing that I'm in competent hands. All treatment decisions are ultimately mine to make.

I'm looking at future options for dialysis but my first plan of action is to put as much time between now and then as possible.

[Irelandy in reply to Hidden]

Thank you for your reply Mr_Kidney, what you say is very true, we must take control and find out as much as we can in relation to our illness and our meds and get a second opinion when we are not comfortable with what the doctors say. My personal feeling is that my doctor did not know what to do....so he did nothing and when that wasn't working any more he passed me on down the line to let someone else deliver the bad news and this was precipitated by me getting an independent private blood test.

I live in the UK and am dependant on the NHS system (which is in need of a serious overhaul). As you also point out it is of paramount importance that we have confidence in those who are looking after our health and not just going through the motion.

I have a friend who has private insurance and he was able, through private advise to get his egfr up from 15 to 25, so maybe his pcp would be a better place for me to start.... I would also point out that at no point was he asked to undergo a biopsy!

Once again thank you for your help and support...good to know there is a supportive positive community here!

[orangecity41]

That is a good question. I had similar experience, but my CKD was diagnosed at 50%. Does insurance play a part? I am on Medicare and parameters may be different? Does age play a part?

[curleytop1]

I do not know about insurance or Medicare, though I should think that if one has private health insurance one would get to see a suitable renal specialist far more quickly (live in UK and, like Irelandy, am dependent on our National Health Service, which does its best to serve the ever-increasing, ever-demanding, ageing population). Ageing certainly does play a part in CKD (kidney function declines the older one is - I'm 76 and, from birth, have only ever had 1 that works ). Other factors include hypertension (high blood pressure), genetic inheritance, lifestyle (the usual 'suspects' - smoking, drinking alcohol to excess, unhealthy diet, lack of exercise etc.).

From the many hours I have spent trying to research the subject, it seems that everyone progresses differently and at a different pace and their dietary requirements and type of CKD (and its severity) can vary a great deal. I feel sure that is the reason our GPs/PCPs are so vague about what to do and what to tell us.

Sorry to you both, forgot to say this reply is particularly for Irelandy and Orangecity41.

[orangecity41 in reply to curleytop1]

Curely Top 1: Thanks for good thoughts on when one is diagnosed with CKD and treatment. Age does play part in determination of stage. Medicare has a new rule that one cannot get referral to Nephrologist nor Renal Dietitian until reach stage 4. Up until then the Primary Doctor is responsible for treatment decisions such as diet and testing to monitor CKD progression. Possibly other medical conditions play a part in treatment options.

[Hidden in reply to orangecity41]

Hey, OC41, where did you get the information about Medicare having a new rule that you cannot get a referral to a Nephrologist or a Renal Dietitian until you are at Stage 4?

I'm at Stage 3 (and was when I found out about CKD) and had no trouble getting to see both. In fact, I was able to switch to a different Nephrologist who was a better fit on my care team. Next Wednesday is my second appointment with the RD as a follow-up to the initial appointment. Did I miss a notice about a change or this a rule that begins on Jan. 1st, 2018?

[orangecity41 in reply to Hidden]

This is what I was told by Medicare and they referenced a new rule for Medicare. Maybe it is regional and applies to FL region?

[Hidden in reply to orangecity41]

Since I asked you last about this I've been on the Medicare website and am unable to find it as yet. I have a question. There is a medical insurance group advertising on television. They are found at medicare.com. They are not the government's original Medicare which is located at medicare.gov. They have a written disclaimer at the end of their commercial that states they are not affiliated with any government agency or program. Next time I see their commercial I'm going to note their phone number and make the call. Their website isn't very forthcoming. Back to you later when I have more information.

[orangecity41 in reply to Hidden]

Thanks for info. I checked it out on Medicare.gov, and rule has changed. Restriction now is applicable to only Kidney education classes. 2 years ago was when was not able to get referral to Nephrologist

I am also on Original Medicare.

[Hidden in reply to orangecity41]

OK, Thanks for the update.

[Irelandy]

Hi curleytop1, My problem is not one of NHS v private medicine in the UK, but rather why, when I was presenting with symptoms and blood tests were taken (therefore my doctor knew), was I not told about CKD when my egfr was say 50? Then I could have started to explore my illness and alternative avenues to tackle/slow down the progress of the illness.

All I was told about the ongoing blood tests were that the blood pressure meds could adversely affect my kidneys. This is a common thread I've picked up on throughout this site.

I am going to confront my doctor with this on my next appointment, it will be very interesting to hear his explanation....I shall relate this when I get it.

Once again thanks for taking the time to comment.

[curleytop1 in reply to Irelandy]

Hi Irelandy, I do agree with you about why is one not told about the egfr figures at an earlier stage. I think it is because there seem to be no dietary changes or drugs needed until one reaches the later stages of CKD, say 4 or 5 - I was told that this is not inevitable. I do not even know my egfr, and when I asked about it, was told by the Registrar at the Renal Clinic of our local hospital that it wasn't really necessary to know this at my stage as I could get fixated on trying to raise it (without succeeding), and spend my life worry about it all the time. I was told the more useful information that it had remained stable for at least five years(which I saw on a chart) and could stay that way for a long time, and that my GP would continue to monitor this in the future. I think that, for me, this was the right advice, after all I am now 76 and no-one lasts forever!

I was told to continue to lower my potassium intake and to lose weight. My 'beef' about this is that no-one tells you how to lower the potassium safely (we all need a certain amount) and exactly what to eat - this took many hours of research on my part, but I know many people of my age are not 'computer-literate' so cannot get the information they need!

Regarding the meds. for high blood pressure (which I have been taking for over 30 years), I did ask my GP and the renal Registrar about them and they both said I must keep to them as they were best for me, changing them could lead to other problems - I feel I have to accept this as I have to trust someone in all this. Cannot say I am really happy about the situation I am in, but I have come to accept it and just work with it as best I can to try to keep my kidney (only 1 functions) as it is.

Looking forward to reading about your next trip to your doctor - Curleytop1.

[Bunkin]

Hi,

I was told in 2003 when they found out by accident(went to emergency room for something else) they said by the way did you know you have PKD?!i said no what is it. They explained and I asked what can be done for it? They said "nothing". So I wasn't concerned, they didn't seem to be. That was my first mistake. Should've researched it! Then it popped up again in 2015 when I went to ER for something else only now I'm end stage! You bet I do my research now. Have made many changes which I believe has allowed me to stay off dialysis. I would advise be diligent in your research. Doctors just seem to follow the same old protocol. Prayers for you. God can do anything!

[Kermit29]

I just saw my nephrologist about 2 weeks ago on a Thursday. He took my blood pressure told me it was low took me off my blood pressure medicine and ordered a ultrasound and blood work done again. And I'm not having any of that done due to insurance purposes until October 3rd. But I agree with you I was never told that my kidneys function was decreasing. And I'm not even sure about this doctor to be honest with you he had terrible bedside manner so I will let you know.

[curleytop1]

Hello Kermit29, Try not to worry - if your nephrologist has not mentioned it already, just try to eat a healthy diet and cut out salt and salt substitutes as much as you can and follow the usual instructions - do not smoke, drink alcohol. It is just the general advice given to everybody nowadays and it could be all you may have to do for a long time. Good luck - Curleytop1.

[Irelandy]

Many thanks for all the advice, it helps to know I am not alone with this illness. Last week I requested my medical records for the last five years. I was quite surprised to find out that I had been at stage 3b since August 2012, this deteriorated to stage 4 in July 2015 yet I was only told I had CKD in June 2017 when my egfr was at 22. Since June I have cut out adding salt and started to drink more water and eat more fruit (I use a nutribullet and addHerbactive kidney shield and Herbactive abc powder (the herbal supplements were recommended by a good friend who swears by them). My latest bloods September 6 show an improvement in egfr to 26 so I am well pleased.

Once again many thanks for all the good wishes, my thoughts are also with you. I gain great heart from reading all the posts.