Stage 3 chronic kidney disease (CKD): What specialists do I see?

I can not go to a nephrologist until stage 4 in Canada,our government medical does not allow it. I see a dietitian for free in 3 weeks at my local hospital. I am 54 and 2 years a go my kidney function was 92%, 4 months a go 70%, 3 months a go 70%. It is considered a problem to change so fast and I am arranging to get some blood tests on this. It is considered a problem if it changes 10% a year, even if in the normal range. I have 3 blood clots in one lung, 3 months a go found out my kidneys are not producing the hormone that makes hemoglobin and was given a hormone replacement shot and Iron pills. My blood tests showed white and red blood cells were both damaged,wrong shape and size and not enough of both. I am on Xarelto for 3 blood clots in one lung from 3 months a go and will arrange on my own for blood tests to see if improved. I was told to add salt daily to keep my blood pressure at 96/65 otherwise it is 80/60 daily and 120 with no exercise for 3 days and immediately down after my gym class. If I exercise daily blood pressure is the same before and after exercise. Maybe it is all kidney related.??

@lindaw, I'm surprised that you cannot see a nephrologist in your province until you are Stage 4. Which province do you live in?

Here is information about referrals from the Kidney Foundation of Canada https://www.kidney.ca/information-and-referral Perhaps you could contact them to get more information.

Hi, @lindaw. I saw your two other messages on the Diminished Kidney Function discussion and want you to know that we at Mayo Connect get related to people like you and want to help in some small way to smooth your path to feeling better and gaining strength.

Your last question points directly at my primary advice: Find out if your kidneys are at the core of your problems as soon as you can. That answer probably would come from a nephrologist. In cases of kidney failure, a dietician is usually called in to get that side of your therapy in order, but nephrology and endocrinology may be where your problem can be defined concretely -- endocrinology because of the hormone involvement you have and because your hypotension may be related to hormones that involve your kidneys and the adrenal glands attached to them.

The cause of your blood clots also needs concrete definition. Has your medical team explained what might have caused them and what steps to take -- beyond an anti-coagulant medication -- to protect you in the future?

I also wondered whether you are bearing the major responsibility for finding out how to diagnose your conditions and treat them. I'd be lost if I tried to assume that much responsibility. I do enough research and consultation that I can come up with relevant questions for medical professionals to answer, but I don't let them off the hook on the main medical questions. I expect them to give me the best medical advice, as well as treatment, that they can, and I try to develop a relationship with them in which they feel primary accountability for diagnosis and therapy. And I soon let them know that I prefer to search for cures not for simply maintenance nostrums. This has worked for me; my doctors have all thanked me for keeping up on the medical issues and therapy choices.

Please keep us abreast of your journey through medical care. We want to see you get on the upward road to tomorrow.

I am also CKD stage 3 and a Type 2 diabetic. My GP put me in touch with a nephrologist and a cardiologist. The GP maintains my BP prescriptions but consults the two specialists. I take Amlodipine (lowest dose and have not had swelling), a diuretic, Metoprol, and Losartan. My BP is still not where it should be which I know is vital to my kidney health. My diabetes is in control with an A1c of 6.5. I monitor my blood pressure and blood glucose at home twice a day. I don't understand the choice of BP meds as they are not what is recommended for CKD. Your thoughts?

Hi, @riveroaksfarm, welcome to Mayo Connect and this large community of people experiencing one or another of untold numbers of maladies, medical responses, second opinions, and after-care prospects. I'm intervening here because of similarities with your situation and uncertainties, and you might find something worthwhile.

I am CKD stage 3 with hypertension, but not diabetic. I get treatment from an internist, a cardiologist, and a nephrologist. My nephrologist is captain of my care (so far as I am concerned) and often consults with an endocrinologist on kidney-affecting hormones. My cardiologist is interested mainly in my a-fib, which has me on Coumadin anticoagulant but without any symptoms.

My primary BP medication for 30 years has been one diuretic after another. Amlodipine lasted only a short time because of swelling in my extremities, a common and vexing side-effect. My diuretic now is Amiloride, a potassium-sparing medication that I need to maintain the right potassium level. I am also on Lisinopril (an ACE inhibitor related to your Losartan) and Carvedilol (a beta blocker related to your Metoprolol). These meds keep my BP pretty stable after years of raging up and down and up again. Diet and exercise are crucial factors also.

Altogether over those 30 years, doctors have experimented on me with some two dozen medications (I won't bore you with the details, only say that most were dropped after failing to do the job, but if you want to ask me about any specific med, I'll gladly respond). My nephrologist is unique in that she wasn't simply searching for a medication that would help -- she went after the cause(s) of my symptoms, and she found them in my DNA (my genetics).

Therein is my primary advice: Ask your medical team for tests under the new discipline known as Pharmacogenomics, which examines your DNA comprehensively to identify which medications are most likely to be effective, given your genetic makeup. If possible, insist on this, and get back to us if you want to proceed along this line and need some external contact information to access the tests. In the meantime, perhaps you can get your GP or your nephrologist to explain the risks you face taking your three primary medications. Get back to us any time if you think we can help.

@riveroaksfarm, this is a really good question! I have no thoughts on this combination of medications because I honestly don't know anything about them. But in addition to the wisdom offered by @predictable's experience, I have a simple question for you - have you had a conversation with your GP who has consulted with your specialists? I would hope that he/she would be able to address your concerns. I know that sounds simplistic, but, maybe worth a try.
Rosemary

I have adhesive Arachnoiditis and diagnosed in sept 2016 from bad epidural dieting child birth 26years ago. I have had kidney issues since high school. To the point that Batrium DS caused gives after a period of time and found out im allergic to the sulfa in the drug. Since my diagnosis and being put on HcG hormones Mon-Wed-Friday's, with my premarin 0.625mg ( last example ultrasound found fluid in right adenex, CT scan cannot see thru artifacts from s1 (defective s1 disc, defect - slid and broke L5 off pedicles, L3L4 nerve root bundling, bunching and 2cm bulge (?questionable not a tarvo cyst in my mind)) ( pre menopausal age 51, hysterectomy age 34, 1 ovary left) ketoralac injections 1 ML IM Mon and Thursday and one more time during the week if needed. I do not empty bladder fully, 400cc and 30 minutes later 200cc. In 2013 I had pyelonepharitis, they gave too much saline, gained 20 pounds fluid, don't know if damaged ted blood cells or not. 7/13/13 on ciprofloxin, and 8/25/13 hospitalized for peeing blood and pus. Gave several different antibiotics until a good one found.
Since being on HcG and ketoralac, i had no idea my kidney function was bad, until I started these meds. Before I was having to lean left, a cough causing umbilical hernia and also had sphincter of oddi dysfunction, was on wrong morphine 7 months, IR not ER and started getting heartburn, epigastritis, and sent to gastro specialist who cut sphincyer ( it just needed to calm down but in that process they talked me into colonoscopy and removed adenoma and 2 polyps.) I see now that the stream is stron from start to finish and think also them cutting my sphincter weakened the others. Along with this cough, had lung cancer CT lung yesterday, 2ndary exposure 23 yrs of asbestosis, farther padded of complications (copd & heart). My BUN/creatinine ratio was high...7.0 (0.0-4.9 range) neuroinflammation maybe? Kidneys? Wgite blood ct up 11.0 (3.4-10.8) high, lymphs (absolute) 3.2 (0.7-3.1 ranges) little high. ,creatine kinase total serum was 86 (within range). But c rative protein, quant. 7.0 (0.0-4.9) above high. In March creatine kinase was 55 normal. (24-173) went up, broke little toe twice this month though and lots of running into things or dropping things. On 6-28-16 last year BUN was 5 below normal. 04-01-2016 sphincter of oddi dysfunction, c reactive protein, QUANT..5.2 high! (0.0-4.9) all this up and down. Last year was a rough year, lost 152lbs to 118 pounds by May, Could be why hernias along with cough agrivating it.

I told my primary she had to change the amlodipine because of the swelling. Swelling causes damage to the blood vessels so it had to go. She agreed after a discussion regarding damage and the need to wear therapeutic support hose some day. I don't think it had occurred to her.

Certainly have had a nice discussion with her. She said it is her preference and experience that these Rx work. I will have to rely on that as I don't know either!!

Has anyone worked with an Australian doctor with a program called A KIDNEY SOLUTION. HE promises a cure. Is he for real or bogus ?