Ckd 5th stage - help

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Hello all,

My mom got admitted to hospital 7 months back with anemia and she was diagnosed as having ckd 2nd Stage... And then in just 2 months it progressed to 3rd stage... Now another 2 months she is already in 5th stage! Everyone in the family is depressed and shocked... Even with regular follow up and treatment is this possible?? We do not anyone in the family with ckd and don't know what to do... Doctor says anything is possible as she is diabetic... How dangerous is this... Please help me... Looking for your reply.

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  • Posted

    That is a quick deterioration. Have your mother's doctors done a biopsy to see what, specifically, is causing this rapid deterioration? 

    As far as the anemia goes, what are they doing to treat it? Is she experiencing  other electrolyte imbalances? Has she been able to keep her glucose in an appropriate range consistently? Also, how is her blood pressure?

    Many of us participating in this forum are in Stage IV or Stage V. You may be surprised to find that many of us are feeling and functioning quite well. An effective treatment plan will do that. It may also stabilize your mother's remaining renal function--or at least slow the progression of your mother's CKD.

    If your mother's doctors have not already talked with you about treatment options for people with Stage V CKD, they should do so now. 

    While each case is unique so outcomes will be unique, many people live for years with CKD. The outcomes are strongly tied to the overall health of the person as well as the person's adherence to his or her treatment protocol. 

    I'm sure others will respond sharing additional thoughts with you. Please let us know how things are going for your mother and all of you. I know that this news is concerning and creates lots of stress and anxiety. I have found it to be quite helpful to participate in this forum. While I rely on my medical team for all treatment information and ongoing treatment options, I find interacting with others who are living with CKD has helped me develop a vision for what my own life with CKD can be like. I would certainly prefer not to have CKD. But through this forum I've met numerous people who are living very well with CKD. I do expect to have a similar experience with my own case.

    Marj

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    • Posted

      Hi marj01201,

      Thank you so much for your reply! Glad that you went through the post and shared your thoughts. I am feeling much better now. I am going to share your thoughts with my family too.

      My mom was just feeling fatigue and went for full body checkup to this hospital 6 months back. She just had diabetes and no BP. Doc gave iron supplements saying her hemoglobin is low. After a month she just fainted and was admitted to hospital. Then they found she has ckd and blood transfusion was done for anemia. And they even told us that she had silent mi twice. She is a diabetic and on insulin from past 10 years. She is 63yrs old. She was in hospital and suddenly she went through shortness of breath. And then she doc suggested for angiogram. No major blocks were found and some tablets were given. Family was kind of shocked as suddenly all these things happened one after the other. She was in ckd 3 grade when angiogram was done. Also said she has BP. Just in 2 months!? When we asked doc he said we can't say anything. Anything can happen as she has diabetes! This is the only reply that we get everytime. 5 months back her creatinine was 1.9 and now even after treatment it's 4.5.

      Afrer angiogram just after 10 days she went breathless n fainted. And again we admitted her to Icu and was diagnosed edema. As we have no much knowledge on ckd we simply did what doc said... We even asked should we show her to specialist but he said not required now.... She will improve. Her doc is a physician. 15 days back she she notices chest pain and again she was admitted to hospital for 10 days. Doctor said it's due to urine infection and her ckd is in 5 stage!

      If we ask how it progressed the only answer we get is she has lot of diseases n is diabetic. We can't say anything.

      She was all well 6 months back and we just couldn't digest whatever happened to us. Even now her doc says no need to consult nephrologist. But after reading n go ogling we have decided to show her to nephrologist this week. What risks are there in future?

      We are still wondering if the treatment was right? I consulted another doctor but his answer was diplomatic.

      From past six months her sugar is is control. But sometimes during her treatment in hospital it used to go high.

      What stage of Ckd are you in? When it all started? I am sure you can fight this and live long without much pain!

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    • Posted

      My CKD deteriorated from Stage I to Stage IIIB suddenly (over 1 month) in the summer of 2013. I had seen a nephrologist twice before that summer. He did not expect that I would experience much difficulty with my CKD as I aged at that time. He thought my renal function would remain stable for many years and that it would not deteriorate to renal failure, Stage V. But suddenly in the summer of 2013 my renal function plummeted from Stage I to. Stage IIIB. My doctors do not know what caused the deterioration.

      I began seeing my current nephrologist regularly in late July of 2013. He initially thought he would be able to improve my renal function. There was some improvement over the first 4 months he worked with me. My creatinine improved from 3.4 to 1.8 and then stabilized in that range for the next 3 and 1/2 years. My eGFR was 30 so I was at the very bottom of Stage IIIB. 

      I experienced significant anemia (hemoglobin 5.6 without treatment), high potasdiym levels, and blood pressure problems. (My BP was always in the normal range before I developed Stage IIIB CKD. My nephrologist has told me that my current BP issues are related specifically and solely to my renal function. So as my renal function has deteriorated I have developed BP issues.

      My nephrologist treats my anemia with iron supplements that I take three times a day and EPO injections that I receive as needed--usually once a month. My potassium levels are controlled with dietary restrictions and a medication--a potassium bi fee--that I take two times a day. I also take vitamin supplements daily (B12 and D). All of these medications and vitamins are prescribed. It is dangerous to try to take vitamin supplements without approval from my nephrologist. It's the same for dietary restrictions. So for your mother, it will be an individual treatment plan that her nephrologist will develop and manage.

      It took about 12 months before my nephrologist had my treatment plan in place. So it will be important for your mother to work closely with her nephrologist. For me, the most challenging issues with my treatment plan related to BP management and anemia management. Now that we have those figured out I feel quite well. I'm able to exercise daily ( walk 2 mikes a day & complete a 30-minute workout on my elliptical machine at least five days a week).

      My renal function suddenly plummeted again about s year ago. I developed a bad cold that progressed to walking pneumonia. It took me about 2 and 1/2 months to recover. When I had recovered my renal function had plummeted to Stage V. My creatinine was 4.6 and my eGFR was 8. My BP had consistently run very low. It would also suddenly plummet. That wasn't any worse following the pneumonia but it remained problematic. My nephrologist had me taking a laxic

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    • Posted

      Diuretic medication but that dehydrated me too much. So he then tried a blood pressure medication. He was trying to stabilize my BP. However the BP medication was causing extremely low BP. So last year I was pulled off both of these meds. Since August of 2017 I have taken nothing to support my BP. As long as I manage my fluid and sodium intake carefully my BP has stayed consistently in a good range (110/63 to 122/78).

      Again I've seen some improvement in my renal function. My creatinine had improved to and stabilized at 3.6 with an eGFR of 13. However, my most recent renal panel surprised me with more improvement--creatinine 3.0 and rGFR of 16. So I'm now back in low Stage IV. 

      This likely means I have s little longer before I'll need to start dialysis. My nephrologist mentioned the possibility of a kidney transplant as a treatment in my last appointment. So when I see him in January 2018 we'll talk more about the eligibility testing. I'm planning to get that scheduled. I'm just taking this one step at a time. Right now I need to focus on the testing to see if I even qualify for a transplant.

      In the meantime I'm thrilled to be feeling and functioning so much better. I'm working to get my strength back. And I'm planning for dialysis.

      I'm single and live alone. So it has been a challenge for me to manage all of this on my own when my anemia and BP were causing me such difficulty. Fortunately I don't struggle much with the dietary restrictions. And I like exercising when I'm feeling well enough to exercise. I so a Type II diabetic. But my A1C ranges from 5.0-5.1 without medication or insulin. So I'm fortunate on that front as well. I've hit friends who really struggle with glucose management. 

      This is likely a lot more information than you wanted. But your mother may find it helpful to read this. And if she would like I would be glad to visit with her directly. She can send me a private message through this portal.

      It is wonderful that your mother has you and other family members for emotional support as well as help as needed on a daily basis🐶

      Marj

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    • Posted

      My phone auto corrected-I meant to say that I take a potassium binder.
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  • Posted

    She should have been taken to a nephrologist when they found out she had stage 2. Sounds to me that you do not have good doctors.

    My mom just passed November 6th and also diabetic and had anemia, started with Stage 2 and progressed at 5 within 4 months but this was because of the doctors and nurses.

    If you don't mind me asking what kind of medication is she on? Look up renal failure diet and place her on that diet ASAP. Her diet will make her or break her this is so important. Does she have a lot of swelling, if she does take her to the emergency immediately.

    She needs to get on dialysis ASAP.

    Make sure you ask questions for the doctor, educate yourself because you are your mom's advocate.

    I'm so sorry to hear this please email me if you have any further questions.

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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