ckd3

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ian8962
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hi everyone ive just found out ive got ckd3 im absolutley devastated and dont know how to handle this i live alone and dont really have any support im on high blood pressure meds amoldipine10mg and ramipril 5mg  but bp is still not coming  down any ideas of which bp meds are best to take cos obviousley its so importent to get it down with this horrible life changing desease also im getting scared to eat in case im damaging kidneys even more been told to avoid potatoes  but am finding this difficult  i luv me mccain rustic oven chips lol i work 12 hour shifts as a security officier and just dont  know what to eat i havent got that much time to prep meals  dont know how much bread etc im allowed i usally use wholemeal  i need to keep my calories up as i dont want to start losing weight ive also been told to stop taking my dailt multivit/mineral pill and am now worried about getting the nutrients my body needs  can anybody help please  my heart goes out to everyone thats suffering with this terrible condition  many thanks

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  • Posted

    Hi,

    First of all its a shock when you get diagnosed no matter how old you are, but once you get your head round it, its really not that bad.  Depending on what is causing your CKD depends on how you progress, if you progress at all.  Some people never drop any lower than stage 3.  I stayed at stage 3 for many years over 20 and I have Alports syndrome.  There are lots of BP meds on offer so talk to your doctor and try a few to see what suits you, it really is personal to you, what worked for me may not work for you.  I tried loads that didn't suit and ended up on Amlodapine and moxonodine that worked for me. I am taking it as you have been told to avoid potatoes your potassium is on the high side, and those McCanin chips are the worst thing for you sorry sad.  I would ask to be referred to a dietician they can advise you what is best for you to eat and avoid, you can have your chips but once a week and don't have anything tomato based with them, chocolate is another one to avoid.  The dietician will be able to give you a sheet that explains it all.  Seeded bread is another no no.  I am affraid that the CKD diet is the most un healthy one going.  You can have rice and pasta so perhaps make up a big batch of spaghetti bol mix you can split it and add chilli to one half then split it into batches and freeze it so you only have to make the rice or pasta.  You can eat harribo smile.  Please don't be scared, I have had CKD all my life (I am 39 now) I have been on dialysis for two years and had a kidney transplant in Sep last year and I am still here.  You may not even get to that point but what I am trying to say is as scary as it is its not too bad I hope that makes sense.  Good luck with everything.

    • Posted

      thanks helen as you say its the shock and trying to get my head around it all  dont know whats caused it yet  they want me to have a biopsy and im terrified of getting that done i havent been told to restrict my diet as yet  but i want to eat right as`not to damage the kidneys anymore  but still ensure im getting all the right vitamins/minerals my body needs  and to ensure i dont lose weight  and that im finding very hard as for a dietician ive been told you cant get to see one until stage 5 or on dialyss 
    • Posted

      Hi,

      If you haven't been told to avoid potatoes then please don't, if you  change your diet to a low poassium one and your potassium is within its limits and you lower your potassium too much that has the same result as it being too high which is serious issues with your heart and its very dangerous.  As you said you had been told to avoid potaoes I assumed you had been told to limit potassium intake.  Only do this if you are specifically told to do so by a medical professional.  Vitamins and potions are the same, they can damage kidneys further so again only take if you are told to.  Its a mine field I agree but you have to be very careful.  Who told you that you can only see a dietician at stage 5 when on dialysis??? I had one from stage 3 and she kept an eye on my blood results and called me in when she needed me to change my diet.  I have been seeing a neph since way before that stage too.  Please don't be affraid of the biopsy I have had 3, 2 on my own kidneys and one on my transplanted one.  I preferred the ones on my own.  It does not hurt (or it shouldn't) you will go in as a day case or if it is done in an afternoon you may need to stay overnight.  The area is numbed so the usual sting for the fist injection only, then you can't feel it.  Its more a pressure that anything and I could feel the needle clicking through the layers of skin but it didn't hurt at any point.  They have someone scanning you with ultra sound at all times.  They take a couple of pieces from the cortex of your kidney to make sure they have enough, but don't worry they are really tiny bits so you have lots left smile then they wait a bit and scan you to ensure you don't have bleeding (that is the highest risk, but they will explain everything to you) they will mention possible death but they have to.  I soecifically asked my dr how many he had done and how many had died, he said hundreds and none, I asked the transplant dr at a different hospital and the reply was the same so it is very rare.  You will then recover on a ward, you have to lay flat for a number of hours the time depends on the hospital, mine was 4 in my own hospital and 8 in the transplant hospital.  They check your temp and bp at set intervals then if all is well you go home.  They advise you not to lift anything heavy for a couple of weeks after in case you cause a bleed then when they come through you will be called to get your results.  The most important thing don't change anything unless you are told to.  Reagrding the weight loss I don't have any to loose but mine didn't happen til stage 5 when i physically cound't eat so don't worry yourself about that.  Be careful what you. take notice of when researching as not everything is correct off the internet, infact it is complete rubbish and dangerous for you.  You need to listen to your dr at the end of the day.  I am not and don't claim to be a doctor but I can share my experience which I have a lot of having had the bloody thing my whole life lol.  Worry only when you have to and try and live your life the best you can, not easy but worry will make you worse and why worry about something you can't control its a waste.  Avoid ibuprofen and salt, low salt is the worst.  Eat fresh food and avoid processed stuff.  That is all you can safely do for now.

    • Posted

      thanks helen for your kind words  i just thought by cutting back on the pottassium/phosphates  i could try and prolong any more damage  im seeing the neph next on the 16th  i have about six pages of questions for her lol  i have never used salt  but its in nearly everything you buy  i always get the meals with the lowest salt in  i always keep it under 6grams a day  its usually 4to5  the goverment should ban it i hate the bloody stuff but due to my job working in security 12 hour shifts days and nights and living by myself i cannot always cook from fresh  had blood pressure done this morning was 168 and then 154  so still not coming down to a healthy level  i want to try and keep my weight up but finding it hard when your trying to eat healthy as well  have you any healthy recipes or tips for making sauces for bolognasie or pasta/rice  not that keen on tomatoes  thanks for the rundown on the biopsy but i know i will panic cos im a big wuss lol   once again thanks helen
    • Posted

      Hi,

      I will private message you some recipies of stuff you can make in bulk and then freeze in portions you will find it easier for quite a short time spent.

    • Posted

      Hi, I'm very new the this site. Yesterday I was told that I have CKD 3 and I'm just so devastated I'm only 48 !! I do suffer from high blood pressure I'm so lost for words at this point all I do is cry.. any advice 

    • Posted

      Hi,

      My advice all is not as bad as it seems to you right now.  Its a shock and I get that I really do, but you can't let it rule your life. What is the reason for your CKD? is it caused by high BP or do you have an underlying condition? Many people stay at stage 3 and never progress. If yours is due to high BP then controlling your BP can really help, avoid salt including low salt and avoid ibuprofen. Do not change your diet unless you are told to do so its dangerous.

      I first had issues at 13 and stayed at stage 3 for years then I was diagnosed with Alports I am skeptical of this diagnosis as apart from protein loss and blood in the urine (which could be attributed to many things) I have none of the tell tale things that go with it, I put it down to a severe throat infection as a child which drs wouldn't treat which then turned into a severe UTI but hey hoe the results for me would have been the same. By 37 I was on dialysis and by 39 I had a transplant.  I am not suggesting that will happen to you but as you can see I am still here and still smiling. Its all scary as its fear of the unknown but as the cause at the moment for you is high bp (which it can be) you can hopefully halt it.  It may also be worth explaining that our GFR (kidney function) drops with age anyway and if we blood tested many people you will find they have slight CKD without even knowing all be it stage 1 or 2 they will fit the old CKD category all the same.  I hope this gives so comfort, now dry your eyes and live your life smile xx 

    • Posted

      Thank you for taking the time out to write.  Im going to the doctors tuesday  and sit down with him about what is going on.. i have 3 children , 5 grandchildren  and 4 great nephews and  nieces  That I want to share  wonderful memories with..  again thank you for telling me how it is... 😉😉

  • Posted

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  • Posted

    Hi, I'm very new the this site. Yesterday I was told that I have CKD 3 and I'm just so devastated I'm only 48 !! I do suffer from high blood pressure I'm so lost for words at this point all I do is cry.. any advice 

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