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Newly diagnosed with CKD - looking for advice.

Posted , 9 users are following.

andy66833
andy66833

I an 44 years of age, Male and have been recently diagnosed with CKD not sure which state it is. My serum creatinine is showing 8.8 and for the past 2 years I have been taking blood pressure medication. Also have had type 2 diabetes for a year and have been taking high blood pressure medication twice a day. Last Jan my serum cratinine was 1.8. within a year it has shot up to 8.8. Not sure whats the reason. Currently I have episodes of nausea and vomiting and general itchiness and sometimes severe headache. Ultrasound shows normal kidneys with increased echo texture. Doctor is recommending Dialysis and biopsy to see what is wrong with the kidneys. I am very worried and scared all at the same time.Is Dialysis a must at this stage? 

1 like, 16 replies

16 Replies

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  • MrsO-UK_Surrey
    MrsO-UK_Surrey andy66833

    Posted

    What is your eGFR level, Andy?  And what blood pressure medications are you taking?
    • andy66833
      andy66833 MrsO-UK_Surrey

      Posted

      I am not sure how to measure eGFR. I was taking amlodipine taken once for 3 months and then stopped and switched to Clinidipine 10mg taken twice.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey andy66833

      Posted

      Andy, Jane has kindly worked out that your eGFR presently stands at 7.  Fingers crossed the experts will be ably to dyalise  you whilst they investigate the cause and then treat you appropriately.  The good news is that Clinidipine should work better than Amlodipine at protecting the function you do have.  Be sure to avoid taking any NSAIDS such as Ibuprofen which are harmful to kidneys.  Avoid all salt and caffeine.  Try arrowroot biscuits for the nausea and vomiting, and Dermol cream for the itching, even using it as a substitute for soap products in the shower.  Loads of good luck wishes for you, Andy - we’re all rooting for you, and looking forward to hearing better news soon.

       

  • stephen_25073
    stephen_25073 andy66833

    Posted

    Hi Andy

    I'm no expert on your readings but it certainly sounds like your creatinine levels have jumped significantly. When I was on dialysis I watched my egfr (estimated glomerular filtration rate) this I'm told is one of the defining indicators for kidney function. Your nephrologist will be able to advise you when you need to prepare for dialysis. Going back to when I needed dialysis my creatinine levels exceeded 1000's and my egfr slumped to 4. Dialysis takes some preparation and if you go for haemo you'll need to have a fistula created. Alternatively some people go for a line in just above their collar bone but personally ( only my opinion ) I'd have a fistula. Other symptoms you may experience are foamy urine, poor concentration ( I used to call it kidney fog!) Lethargy fatigue and a strange taste.

    Sorry I can't calculate your vital numbers into your overall renal function but go by egfr AND creatinine levels.

    I've been through the whole journey and got a transplant just before Christmas so if I can help with anything else gimme a shout.

    All the best

    Stephen

    • andy66833
      andy66833 stephen_25073

      Posted

      Thank you Stephen. You are very kind. I appreciate your response and will let you know.
  • john85166
    john85166 andy66833

    Posted

    Andy that's an unusual large drop in one year. Hopefully it may be an acute issue rather than chronic. I'll keep my fingers crossed for you. With the results you mentioned dialysis is imminent and better than feeling sick. It does sound like your in good hands.

  • marj01201
    marj01201 andy66833

    Posted

    Andy,

    I would definitely think it would be helpful for your nephrologist to do a biopsy to try to identify what has caused this sudden major decline in your renal function. 

    In addition your renal function is impaired enough that you may well need dialysis, particularly when considered within the context of how you are feeling on a daily basis (vomiting, itchy skin and so forth).

    My nephrologist has indicated that the decision to start dialysis is predicated in part on my data and in part on how I am feeling and functioning. Some of his patients begin dialysis with eGFR close to 5 while others begin with eGFR close to 10. (Of course he considers creatinine to be the better measure of renal function.)

    My creatinine has just improved from as low as 4.6 with eGFR of 8-9 to creatinine of 2.7 and eGFR of 18. At this point I'm still feeling quite well; actually better with the improvement in my renal function. But even when my creatinine was 4.6 I still felt fairly well overall. So while I have made decisions regarding what type of dialysis I'd like to try when the time comes, I'm apparently not yet ready to be placed on dialysis.

    Your situation is clearly quite different from mind. So your treatment plan will also be different--individual to you.

    Are they thinking HD dialysis or PD dialysis for you? Also have they talked with you about kidney transplants and eligibility criteria?

    Marj

    • andy66833
      andy66833 marj01201

      Posted

      Thank you Marj. Still have to look into those questions and figure out the answers. I am so overwhelmed with all the info coming at me, I am in a state of shock. One thing I wanted to ask you if I get dialysis done will that improve the renal function and reduce creatinine levels?
    • marj01201
      marj01201 andy66833

      Posted

      Andy,

      My nephrologist has said that dialysis will not improve my creatinine numbers but will clear my body of many toxins. It should also help my minimal fluid retention and it may stabilize my blood pressure. But my understanding is that this is all quite individual so your situation is likely quite different from mine. So you'll need to talk with your nephrologist. And if you start dialysis you'll also have support at a dialysis clinic. They will provide additional education specific to your case.

      I ask 5-6 questions per appointment. I read a lot. I'm also somewhat lucky in that I grew up with a father who had hypertension-related chronic kidney disease. I went to most of his nephrology appointments with him when I was in college and after I graduated. I was also one of his in home HD dialysis caregivers.

      This has given me some basic understanding. But I still find it to be quite overwhelming as well. I was diagnosed in March of 2013 at Stage IIIA. I was stunned at that time. As time has passed I've adjusted to the dietary and fluid restrictions. I am now in low Stage IV.

      I joined this forum to talk with people who have been on or are currently on dialysis. I wanted to learn more about personal experiences with either HD or PD dialysis--to help me process through all of this. I was grappling with whether I would be able to keep working while on dialysis. (I'm a university professor.) I also wonder which would be less intrusive to my life in general--what is a day, a week, a month like for a person on HD dialysis? PD dialysis? What problems did they run into on dialysis? We're tgry resolved? How long did it take? How were they resolved? If they had known then what they know now about dialysis would they still agree to dialysis? Why or why not?

      I think you get the idea. By far the majority of the people with whom I have visited have described an overall positive experience with dialysis. There have been issues but there have been solutions. They have all said that they definitely felt better on dialysis. Tgry shared ways they have managed their new normal with dialysis in their lives.

      Some on this forum have chosen conservative management--essentially symptom management. Others have received transplants. Others initially thought they wanted a transplant but then changed their mind.

      I have found it incredibly helpful to visit with people participating in this forum. They have been very open and supportive. They have helped me develop a vision for life on dialysis. I've also come to a clear decision that PD dialysis is my preference. Of course I want to postpone that as long as possible. But I am at peace with the my decision and am ready to give it my best effort whennthe time cones🐶 I do expect yo be able to maintain a good quality of life while on PD dialysis. I'm so thankful there is s firm if dialysis I can administer independently in my own home. I'll much more easily be able to integrate it into my life that way.

      I echo Mrs O's comments to you---absolutely nothing but best wishes. In addition I would say that this is the time to reach out regularly to everyone on your medical team. You need their knowledge and opinions regarding your care options.

      Finally, give yourself some time to adjust--take a deep breath. This will be alright. There will be positive things about this. Life will go on🐶 There is no reason it can't be a good life.

      Marj

    • andy66833
      andy66833 marj01201

      Posted

      Thank you Marj. That makes sense. It has to be a personal decision. 
  • badger_47080
    badger_47080 andy66833

    Posted

    Hi Andy,

    First of all I'd like to say I'm so sorry that you're going through this.

    Please make sure that you are seeing a nephrologist and not a regular doctor. Please see that the nephrologist takes all tests required including the liver. My mom had chronic kidney disease and type 2 diabetes.. it happened so fast. Within 4 months she was hospitalized the entire time. Diabetes can make your organs weak. She started itching a lot with nausea and headaches.. I knew something else was wrong so I demanded the doctor to do further testing. We found out that she had cirrhosis of the liver. I'm not trying to scare you at all I just want you to take precautions so you can catch things ahead of time. When you have one organ that is failing it just makes it harder for the others to work. The kidney and the liver work together.

    Good news is that you are still young.

    Most importantly watch your diet.

    Your diet is everything. Good luck and my prayers go out to you.

  • Guest
    Guest andy66833

    Posted

    Hi Andy

    Your EGFR works out to approx 7, at the moment you do need dialysis to clear your system.

    You may be in AKI phase (acute kidney injury) due to your high BP and diabetes. So at this stage you would benefit from haemodialysis to filter your blood until they can find out what is wrong and control it.

    My mum had AKI when she was 58yrs she had haemodialysis that resolved her problem she hasnt had dialysis since. Now at 72yrs they are considering diaylsis again as her renal function is failing.

    Keep positive hopefully this is just a blip until they can find the cause and sort it!

    Good luck!

    • andy66833
      andy66833 Guest

      Posted

      thank you jane, I have undergone about 9 HD dialysis sessions so far. do you know how many dialysis sessions your mother had to undergo before her AKI got resolved? also does she have diabetes and hypertension and high lipids and or triglycerides.
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