Recently officially diagnosed with CKD - Early CKD Support

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Recently officially diagnosed with CKD

Brab profile image
Brab
11 Replies

I'm new here...

I was recently diagnosed with CKD. I don't see a nephrologist until the 21st. I'm 61 and thought I was in good health. My numbers had been below 60 for 6 years. My doctor simply said not to worry and drink more water. I was shocked when my Egfr was at 42. An ultrasound confirmed Ckd. I'm trying not to worry but my brain goes crazy. I've been on bp meds for years and cholesterol meds for 2 years. Has anyone had a decrease in gfr using statins?

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Brab profile image
Brab
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11 Replies

Hi and Welcome,

It's possible that the particular statin and/or dosage could be an issue. When one doctor started me on Simvastatin, another doctor stopped it three weeks later and switched me to Atorvastatin at 80 mg. Four weeks later another doctor dropped the dosage to 40 mg and I watch all of my meds and BP meds and T2Diabetes like a hawk and make sure there are no slides on my GFR. It took a while to get everything out of my system and I was lucky and went from a low of 32 to a 51.

Try to keep in mind that the CKD is yours to deal with. Don't give up your control. Take the doctors (if you trust them) advice but the final decision is yours. Look for side effects, symptoms and stay on top of any changes. I do a lot of checking before I order the meds the doctor suggests. If I have questions, I contact the Dr. through their patient portal or call them directly. Express your concerns and see if s/he moves off the med to something else.

Brab profile image
Brab in reply to

Thank you! I need to remember the advice you've given. Especially about communicating with dr.

orangecity41 profile image
orangecity41

Regarding statins and CKD. My primary Doctor put me on Zetia ( now generic ezetimibe) for cholesterol control when diagnosed . It is not a statin. I have not taken a statin.

joanneflagg profile image
joanneflagg

Hey Barb...I was devastated when I was told I had CKD....my GFR had dipped to like 38, the checked again and it was 43....then 50 and now 48.....when I did see my nephrologist, I was confused....he wasn't annoyed but said he calculated differently.....my age, my Egfr, my weight....and basically told me to come back in a year, they would monitor it, but NOT believe I had classic CKD.....and that the numbers may look like stage 3, stage 4....not to go by that. I was asking should I get to a nutritionist, ...."no".....just eat well, drink water.......I was 69, now 70.....and I think once again, we are aware of things because of the technology.....basically, what he was saying is..............my kidneys were old kidneys and there is natural thining of the kidneys and maybe most don't catch it.....so....................I have no discomfort, urine is fine.....and I will see them in April, 2018....needless to say, I was UNDERWHELMED...confused.......but........they just didn't seem to concerned.....??? I also have AAA, abdominal aorta aneurisms ....same thing, they will monitor them....apparently they don't do anything unless they get to be 5 m. and mine are smaller.....they find these things due to my back and I was getting xrayed in very different positions....like standing and stretching over a chair....but good thing, as that is when they found the aneurisms.....now as we age, people get these things and they just aren't an issue.....but things we must monitor....Good luck to you. I forgot to mention that I go to a vascular doctor to monitor the two aneurisms they found.....

joanneflagg profile image
joanneflagg in reply to joanneflagg

sorry, it is late....I don't mean to say that as we age we have health challenges and they ARE an issue....but Doctors seem to calculate the information and our ages and have an understanding that I didn't have.....but......I am following up all the time, which I think we must do.....

Brab profile image
Brab in reply to joanneflagg

Hi Joanne- Thanks so much for your reply. You're right about technology. I tend to read too much and then worry. I am going to try to follow your advice and wait for what the nephrologist has to say.

orangecity41 profile image
orangecity41 in reply to Brab

Brab so true sometimes we read too much, however must be aware and knowledgeable as we age.

curleytop1 profile image
curleytop1 in reply to joanneflagg

Hi Joanneflagg, the first part of your first e-mail could equally apply to me, except that I have no idea of my Egfr figures or any other figures relating to CKD - my General Practitioner was very vague about the whole thing but said she would send me to the local hospital's Renal Department, which took around 8months! Meanwhile I was to start a low potassium diet (although I was given no proper information about how to do this, which I have found from this Forum is a very common situation). Thank goodness for the Internet which gave me lots of useful information although it took a lot of time initially, and for the help my local pharmacy was able to give.

Yes, ageing is a factor in CKD as is lifestyle and genetic inheritance. I was diagnosed at 74 and am now 76 (incidentally my brother was diagnosed with CKD the previous year at 71). I was also told not to worry about figures or stages as they can fluctuate all the time for lots of reasons, but that I had been monitored for the previous 5 years (unknown to me!) and had remained stable, which is a good sign, and that I would be monitored every year to see what was happening. Thanks to this Forum and other sources, I had lots of questions to ask, particularly about whether dialysis is an inevitable part of CKD (was told it is difficult to tell but the longer one is stable the better the chance of staying stable). Was also told that an ultrasound showed I have only one normal size kidney which is feeling the strain of doing all the work (the other is a shrivelled little thing, which has probably never functioned very well and has always been like that - similar to my brother's situation!).

I have never heard of AAA before, and they sound alarming too, so I wish you well and try not to worry too much - find out all you can about your situation, and plan a diet and your lifestyle around it, that will help to give you more peace of mind - best wishes - Curleytop1.

Sally10255 profile image
Sally10255

Hi! Your situation sounds like mine, except an ultrasound just showed my kidney was swollen. Further testing showed a stone that had made its way to uteter of which I felt. It was 6 mm, passed on its own without me knowing. I had same day surgery to remove it. But, since it was gone my doctor looked st the kidney. He put in a stint to help flow. I went back recently, possibility of removing stint. But I asked if I could keep it. It is making me go more, so in 3 months we will recheck through a renal scan. I am closing watching diet, even though I had already been doing that. My doctor does not like statins, but we are not at the changing point. My right kidney is great so we are just watching numbers for now. I could stop statins if I want, but it might risk the other kidney.

buddygramma profile image
buddygramma

Well, here I go again. I am 76, fought off 4 different cancers, had kidney removed and I feel great. Yes, I have CKD. To me CKD, means eventually dialysis is in the future if you don't try to be healthy. I am trying to reach and maintain a healthy weight. I eat only fresh or frozen veggies, 6 to 8 oz of protein, little dairy. I do try to stay active. Weather permitting, walk, ride bike, kayak and garden. You must eat healthy and to be healthy. Keep your blood pressure under control. Good luck we can all do this together. I am also fighting precancer cysts and afib. I feel great being healthy. No since in worrying about it that sure doesn't change it. Only you can change it. XXOO

Brab profile image
Brab in reply to buddygramma

Oh, so true! I'm trying to change years of being a worrier!

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