Posted , 3 users are following.
Hello. I'm a 65 year old,woman with CKD stage 3. My egfr was 45 ladt time checked it has been being in the low to mid 50's. I know it can fluctuate but I'm scared this is going downward. Can anybody tell mr,anything about this. Oh yes, I have bp issues. I'm certain that's what caused it. Any input would be greatly appreciated
0 likes, 14 replies
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eric31962 phyllis10549
Posted
I'm roughly the same age as you are, I was in hospital for two months in 2013.
And then a further two months on dialysis. My egfr was less than 15 . I had huge doses of steroids. I've been off steroids for about 9 months or more. Although I still take B.P. drugs. No one knows what causes this in adults or children. I live with a constant acidosis situation no one ever takes any notice. Specialist thinks it's related to colds and 'flu. But no one knows for sure. Good luck E.
helen54849 eric31962
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How are you, well I trust. When you say acidosis is this your bicarb levels?? Are you on bicarb tablets? mine was ok before transplant but I am on bicarb tablets now its not overly bad but they like it over 21 and mine hovers between 18-21 so on 600mg twice a day and it still hovers. May be worth and ask and see if you can have some as high blood acid levels are not good. May be you mean something different though and I am waffling on about nothing lol. Take care I am glad you seem stable x
eric31962 helen54849
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When you say acidosis is this your bicarb levels?? Are you on bicarb tablets?
No I'm not, hospital look blank if I say acid levels. Otherwiswe they are wonderful. I bought dip sticks primarilly to test for protein. Last nine months it's been negative. I take half a tea spoon 30 or 40 grams?. A friend working at the hospital suggested it. I'm doubtful about self medication of any kind ! But after doing this it noticeably increased Ph levels , I don't know if this is good or bad however ? I don't remember creainine levels , just remember throwing -up the second I woke , not a nice experience to live through. Had it for two weeks until I was sent to Kidney unit . They knew what was wrong without tests. The tests just confirmed their prognosis. Good luck E
helen54849 phyllis10549
Posted
Hi,
You are correct your GFR can fluctuate depending on a lot of factors. The most reliable reading is your creatinine do you know what yours is? If notfind out this is the important accurate one. You need to get your bp under control as this will effect your kidney function, damaged kidneys do not like high bp, until this is under control your kidney function will almost certainly decrease. It may be that you need to take a combination of bp meds to start with and it is trial and error what will work for you. From my own situation I did not get on with a lot of the meds and I found a combination of moxonidine and amlodopine worked for me so much so I was able to drop the amlodopine. After I had my transplant I had to go back on the amplodopine too but had to drop that after it made my bp too low I am now on 1 moxonidine a day and will be able to stop that soon I think. I don't get on with the tranplant hospital but I am lucky enough to have an excellent relationship with my own hospital I have a choice in what I do most of the time and my input and opinion is always considered and I get to decide what I do where possible. Hope you get everything sorted.
phyllis10549 helen54849
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Hi. My creatinine levels,are between 1. 07 and 1.10 mg/ dl I don't know,what that means I go by gfr. Nephrologist says they were ok. I cannot take the a amodopline it's makes me,swell. Nephrologist took me off hctz 13.5 as my sodium was running low. Trying to get bp med over phone is ridiculous they want even make an appointment but alas, I have one anyway Thursday with GP.this is the craziest city I ever lived in the doctots,close by are nuts. Thanks Helen . Tell me about my creatine levels if you know,about them. Left them in this reply.
phyllis10549
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I'm sorry my fluid pill 12.5
helen54849 phyllis10549
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Hi,
Are you is the US or abroad? your levels for creatinine are recorded differently that here in the uk. For example while I was on dialysis mine was 680 and now it is 109 and my GFR is 48 so going on this yours is more than likely around 120 mark which is ok for now. As your GFR drops your creatinine rises my GFR was 6 when my creatinine was 680. Its just like I said with the bp pills trial and error and what suits one may not suit another. I am glad you have an appointment as it is imperitive to get your bp under good control to prevent further damage. Have you tried candesatrin or ramipril. Candesartrin made my potassium levels rocket so that didn't suit me either. Like I said it may be that you need to take a few types together. I was lucky I never had fluid retention anywhere so have never had to take fluid pills. Good luck with your appointment, are you under a nephrologist yet, if not I would suggest this would be a good idea they will monitor you more closely.
phyllis10549 helen54849
Posted
Yes I was on hctz 12. 5 but I'm not now,but I don't dwell either maybe a little in hands and feet but unnoticeable. That only if I eat more salt than I should. Nephrologist say aid last time I sa3 him I could live,at stage 3 the 5est of my life if I took care of me. What's your thoughts? Have you had transplant for kidneys?
phyllis10549
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What do you mean my creatinine is alright for now? I'm thinking I was dehydrated. They nevet,said but gave me IV Fluid
phyllis10549
Posted
helen54849 phyllis10549
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Hi,
I can't tell what your exact creatinine translates too as it is different that the UK but if my kidney function is 41% my creastinine is 127 this is ok. Dehydration can effect your levels but shouldn't to the point where you need IV fluids they must do things very differently in the US. Yes you could stay at stage 3 for life some people do but it depends on the reason for your CKD what has caused it? have you had a scan or a biopsy or have you just been told that due to your GFR you have CKD? I have alports that is the reason for my CKD, unless you have a diagnosis I don't see how anyone can say you will stay at that stage for life. I was told in May 2014 that I would need dialysis in 18 months I managed 7 months they have no idea when you will decline or if you will. I would be asking why you have CKD what is the cause. You should avoid salt and low salt all together and also ibuprofen all these thhings are bad for kidneys you should also keep good control of your blood pressure. I had my transplant on 15/9/16 it was a live doner transplant from my friend.
phyllis10549 helen54849
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phyllis10549 helen54849
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Why are you doing dialysis with gfr of 41? That's stage 3. Never heard of anyone having dialysis until lower kidney function. But then I'm not a doctor.
phyllis10549 helen54849
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