Delayed diagnosis : I’m a 41 year old male... - Early CKD Support

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Delayed diagnosis

DaveThebe profile image
14 Replies

I’m a 41 year old male from South Africa. In June this year my PCP told me rather rudely that I have damaged my kidneys! I’m a very muscular African male so I suspected he thought I was juicing, but I was never on any of that. My gfr was 52, no blood or protein in urine as well as clear ultrasound results - but I had controlled high blood pressure. So he referred me to a Nephrologist. The Nephrologist was very nonchalant about all this just told me to cut salt, red meat and go easy on weights and told me “we’ll have a look after three months” I came across this site and quickly discovered how much trouble I was in and I panicked, cut all beer, salt and basically followed a kidney diet. My Nephrologist said It wasn’t necessary. Three months later, last September, I did U&Es again and my Gfr improved to 62, creatinine 124(range 80-104) The Nephrologist told me she was happy and she will see me in March 2020. When I questioned her whether she thought I had ckd she rudely said I shouldn’t put such stupid nonsense in my head and I must stop reading nonsense on the internet. Having read a lot of members’ posts, I decided I will leave her after March. In the meantime I did another gfr test beginning of this month with my PCP and once again my gfr improved to 66, creatinine 118. Now I must tell you that during my internet searches I remembered one can view past results on lab web sites. I was shocked to learn that my gfr was 47 in 2011! No one told me. In 2013 it was 67, 2014 58, 2015 61, 2017 66, 2018 57 & 59. All this monitoring and three doctors didn’t tell me anything. I’m particularly unhappy about one doctor because he knew me from birth, he actually helped my mom give birth to me! Anyway here I am, terrified and confused. I thank all members for educating me about this... especially MrKidney and RickHow, Bassetmommer and others. I’m looking forward to seeing the new Nephrologist in March, for now i will just continue with my diet and light exercise.

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DaveThebe
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14 Replies

All CKD really means is that you have had a reduced eGFR for 3 months or more. It is chronic, not acute. Many nephrologists for whatever reason just have the attitude that you just wait to start dialysis. You can maintain what kidney function you have left. You may never get back 100% but it will most likely fluctuate. I have stage 3. I make sure I see me nephrologist twice a year, and have a renal panel, CBC, urinalysis, PTH level, and Vitamin D level. If you are really concerned I would ask your doctor to refer you to a Dietitian for pre- dialysis diet to protect your kidneys as much as possible. Also educate yourself on exercise, too intense can put stress on kidneys, medications that can damage the kidneys OTC too, be wary of herbs and supplements too.

in reply to HealthBuddyMelissa

Are you saying vitamin D can have an effect on the kidneys? I ask as this is the first I have heard this. I don't produce enough vitamin D myself. I have just used my last tab and was wondering if it could effect the kidneys.

Cheers

HealthBuddyMelissa profile image
HealthBuddyMelissa in reply to

Taking Vitamin D does not have a negative effect on kidneys to my knowledge. If you have low Vitamin D a supplement may be ordered because Vitamin D in part is made by the kidneys and when the kidneys are damaged you will have low Vitamin D which can cause bone issues. That is why I have PTH or parathyroid hormone checked also, because it correlates with calcium, and vitamin D and bone health. PTH is kind of long to explain, but if you google PTH and CKD you will get some good explanations.

in reply to HealthBuddyMelissa

Hi,

I was prompted to Dr google. Seems that for CKD people the level of vitamin D can be a knife edge. Something that is best sorted by your Dr. Too much is a sure kidney killer and too little inhibits the facilitation of some of the bodies functions. Apparently the body can deal with over exposure to the sun and vitamin D but not the over ingestion of vitamin D, orally.

HealthBuddyMelissa profile image
HealthBuddyMelissa in reply to

You have to take the activated form, according to my Nephro. I have one doctor that says you can't take too much and one that says otherwise. Even the doctors can't agree. I take a small dose, and I get tons of sun because I live where it is warm most of the year.

DaveThebe profile image
DaveThebe in reply to HealthBuddyMelissa

I thought you need two consecutive below 60 gfr tests within three months together with other markers of kidney damage like protein in urine or abnormal scans to be diagnosed? I haven’t had two consecutive below 60 tests...

HealthBuddyMelissa profile image
HealthBuddyMelissa in reply to DaveThebe

That is what I understand. So, if they have already diagnosed you it may be them jumping the gun.

itzmich profile image
itzmich

The doctor not informing you earlier is typical. Not sure why. Most don't think diet has alot to do with it although it does. Keep doing what you are doing your numbers are good. Yes keep a check on vitamin D. GFR fluctuates which is normal. Drink plenty of water and limit processed foods and dairy in addition to what you are doing. No need to worry because you are doing everything you can. Check your BP and keep a record. It is important to keep it regulated. Good luck and keep up the good work.

DaveThebe profile image
DaveThebe in reply to itzmich

Can you explain the significance of vitamin D? Mine is 24 on the latest tests, there’s no reference range. I understand it’s a bit low for a male.

itzmich profile image
itzmich in reply to DaveThebe

If you google vitamin d and kidney disease you'll find the info you need. Also check with your doctor about suppliments.

taivin98 profile image
taivin98

Do what you believe is right. Docs these days are crap. Always check your blood work and good for you to take the pro-active step. Why refer to a diatician; there's so much info out there and you're doing well. Only you can decide what's best these days. I am an RN IV and positive attitude, visual imagery, and just doing what you're doing is going to get you where you want to go. I switched to a raw food vegan diet. Diet & lifestyle (smoking, drinking, no exercise) is the cause of most of our problems...any nurse or doc who says different is not informed.

shire28 profile image
shire28

Hey man, if you dont mind me asking, what kind of diet do you follow?

DaveThebe profile image
DaveThebe in reply to shire28

A kidney diet of sorts. Mostly vegetarian. As I mentioned I’m on stage 2 so I don’t watch potassium and phosphorus excessively. I don’t cook with salt and all processed foods are out. For protein i eat chicken breasts about three times a week the rest I get from plants. I do eggs and once in a while. Diary products are out, but I’ve done yoghurt one or twice in the last months. I haven’t see a dietician, all this I just modified as I go along looking at my results and of course some advice from members. But I will eventually see a dietitian next year.

I'm stage 3 and have a similar diet but I have not ruled out dairy products and occasionally have red meat, usually once a week maybe twice. But I do limit the amount in my servings and tend to add more vegetables. I also eat more fish in my diet. I don't drink copious amounts of water and usually get through 1 litre per day. I watch the colour of the urine as an indicator to check if I'm getting enough fluids. Clear to light straw colour and you are flushing the kidney's fine, any darker get more fluids through as you are not flushing the kidneys enough. Or as in my case, I've had too much beetroot!

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