Newly diagnosed with stage 3 kidney disease
Posted , 30 users are following.
As from the title I am recently diagnosed with stage 3 kidney disease, my gfr is 56. I have been feeling off colour for a few years now with symptoms getting worse. I have weight loss, swollen ankles, shortness of breath, extreme fatigue, a need to pee all through the night, difficulty sleeping, Itchy skin, muscle cramps, headaches very clammy skin and night sweats, pain in right side front & back, potassium high. I have a problem with iron defiency and vit d defiency & my bp is very high at the moment. My gfr went down by 6 in one year don't know much about the years before. I suppose what I want to find out is how should my gp be helping me at this stage with all of the above. Has anyone out there maybe been in my position, or is in the same position that could help me.
I was diagnosed with fibromyalgia in 2002 but have always thought that the diagnosis didn't quite fit.
0 likes, 71 replies
LynQ Willowby
Posted
Hello,
If you have CKD t is very important to get your blood pressure controlled properly so I would start with this with your GP. You don't say hopw high it is, ut there are many different medications that can help you control it. Also, you need iron, Vitamin B12 and folic acid to make healthy red blood cells so if these levels are low, your doctor can prescribe iron, Vitamin B12 injections and folic acid tablets. This may well improve quite a few of your symptoms if you are anaemic. Having said this, your GFR is not that bad and may not get any worse as many people with CKD 3 find. Most people are relatively free from symptoms at your levels o your problems might be caused by the anaemia. It is certainly worth asking your doctor about these issues and if getting your BP under control and reducing your iron deficiency do not help, perhaps you should be referred to your local hospital for further investigation. I hope you find some help as these symptoms can be very frightening.
Willowby LynQ
Posted
Hi Lyn.My bp is 170/115 pulse 110 first thing, 145/94 pulse 94 later in the day, my potassium is 5.2 which sounds as though it's not too bad from the answers I have had. I am a little less worried now but would like to know how often they should check my blood in the situation I am in.
Fran
LynQ Willowby
Posted
Your BP does seem rather high. My CKD consultant advised me to keep my PB controlled to not more than 130/80. CKD and BP are highly related though the causal direction of the relationship is not yet decided. It is also important to keep anaemia- free. if the only symptom you had was a slightly lower GFR, you would not need very regular blood checks,however as you have a range of symptoms it would be wise to ask for further investigation.
Willowby LynQ
Posted
Hi Lyn
Thanks for the reply. I'm trying really hard to sort out my bp as my mother died at 53 from heart failure, so all the family worries about that. I will ask the dr to send me to see someone and try and sort it out. I will do everything I can do to help myself with diet etc., and see if I can make my bp better.
I hope you are doing ok.
Fran
LynQ Willowby
Posted
Hi Fran,
I have had CKD for quite a few years. It was originally caused by a kidney stone that they could not get out and my kidneys were damaged as a result. My GFR is 22 but apart from having to watch my BP and take iron, folic acid and Vitamin B12 injections to keep anaemia free, I am reasonably OK. I do get tired easily and have to be careful when I get a cold as my immune system is not very good and infections can get out of control quickly. But I'm in my 70s now so go carefully. Best of luck to you.
Willowby LynQ
Posted
Thanks LynQ
I will be very careful from now on. It's a bit scarey with the high bp but I will get it down one way or another.
Good luck to you too.
Fran
Willowby
Posted
mikewordman Willowby
Posted
Hi Willowby,
Sorry to hear you are experiencing so many symptoms. It seems highly unusual to me that you are exhibiting so many symptoms while your GFR is 56 - that's a decent number - personally, I did not get all those until my GFR was way down in the low 20's and teens. In fact, I believe my experience is the more "common" one - I wonder if others on this board could comment?
Regardless, a few things:
-GFR is not a perfect measurement, and the number fluctuates, so a variation of 6 in GFR may in fact not mean much. In other words, it might possibly be a standard deviation.
-Those of us with kidney disease generally follow the same advice: limit protein and sodium, avoid junk foods, keep as fit as (reasonably) possible, and try to keep your blood pressure under control. Your nephrologist may prescribe a blood pressure medication if necessary.
Apart from that, I'm not aware of any other treatments while your GFR is 56. Again, perhaps others could chime in?
Willowby mikewordman
Posted
HI Mikewordman
I agree from what I've learnt on here that my symptoms are early (that is if they are to do with CKD) it could be something else. It just fits almost completely with CKD especially the Vit D & Anemia. I did think that it maybe Hyperparathyroidism as my parathyroid was out when I was tested recently. I have already looked at reducing my protein, sodium & I don't eat junk foods very often. I also keep quite fit with having a dog to walk plus I do excercizes every morning. I am really worried about my blood pressure & hope the new diet may help that because I would be really worried about taking statins I'm on quite alot of medicine already.
Thanks very much for the reply I'm very grateful for your advice.
kathi70354 mikewordman
Posted
Willowby kathi70354
Posted
Hi Kath
Thanks for your reply. I love bananas & thought I was being really healthy as I had 2 Bananas, Raspberrries, Blueberries & a yoghurt for breakfast. It now looks like I need to cut that out. My Potassium is 5.2 which I didn't realise was bad. I know I use too much salt so will cut that down. My creatine was 84 on last bt. I am 63 so I am creeping up there a bit, even though my brain doesn't seen to know that. I went out and bought cereal today so will start the lowering potassium tommorrow.
Hope you are feeling ok. Thanks again.
Fran
mikewordman Willowby
Posted
Hi Willowby,
Just to further what Kathi is saying: the lower your GFR, the closer you need to watch your potassium. Your GFR is still very decent so it's surprising you have high potassium, but perhaps this is due to something else. In addition to bananas, you should also limit your intake of the other 3 "classic" high potassium foods: potatoes, tomatoes, and oranges. It's not that you can't have them, but I would hesitate to sit down with a plate full of french fries. Just an FYI.
Best wishes,
sonia68053 Willowby
Posted
Willowby sonia68053
Posted
Hi Sonia
Thanks for that. I think my symptoms must be from something else (they don't fit with my fibromyalgia though).
Fran
harshad Willowby
Posted
Hi All Friends,
I am from India and want to share my experience. My mother is suffering from CKD and her current level is 4. We diagnosed CKD level 3, 15 yrs back. She is 76 yrs old. The only thing which delayed her CKD progression is Veg Indian meal. (less oil, Less salt, avg spices). Her weight is controlled, No diabetes. She don't eat bread, most of the time on liquid diet. If anyone needs her schedule i will happy to share.
john85166 harshad
Posted
Sounds good Harshad. What is your mum's schedule?
caroline_12392 harshad
Posted
bacjac harshad
Posted
Dear Harshad,
Just learned I am stage 3 too. I am 60 yrs old. I love Indian food, and had to give up dining out, so will learn to make it at home to control salt. Would you please share her schedule with me, & also what the liquid diet it's that she is on?
Thank you, Betty