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Learning more about living with CKD and other questions on it

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  • Learning more about living with CKD and other questions on it

    I am male who is 24 years old in central California. I have stage 3 Ckd confirmed on April 18 after results from a kidney biopsy done weeks before that. No one has a kidney disease in my family. Let me ask questions of chronic kidney disease on here, bear with me and see how much you can answer. Answer only the ones you know/apply to you, I expect multiple answers to the questions. Here we go.
    1. Ckd suddenly came to me. I have no diabetes, thankfully, or any other health conditions. Did it come suddenly to anybody else with chronic kidney disease too?
    2. Does each of the five stages of Ckd have a different diet for everyone and does it get more restricted on the later the stage is?
    3. Is it true that CKD doesn't strike all of a sudden or does it for some people, like me?
    4. Is it inevitable that Ckd gets worse over time no matter how well we take care of ourselves with it?
    5. Is dialysis scary? (Dialysis people only)
    6. So after transplant one is still on ckd? (Transplant recipients only)
    7. So pills like Tylenol or Advil can cause chronic kidney disease?
    8. How to stay optimistic on Ckd?
    9. Do other kidney diseases like kidney cancer, iGa nephropathy, nephritis, and nephrotic syndrome also cause CKD?
    10. Do ckd meetups exist?
    11. Is GFR always compatible with kidney function? GFR can actually be above 100 but 34 GFR is 34 percent kidney function. Am I even right?
    12. Is it inevitable that CKD is not without hypertension?
    13. Is PKD part of CKD?
    14. Did anyone else feel sad, disappointed, miserable, scared, frustrated like me when first informed of having chronic kidney disease?
    15. Ckd is changing my life. Has it changed anyone else's life too?
    16. (Miscellaneous) about how many kidney diseases exist?
    17. Is any kidney function below 100 percent chronic kidney disease?
    18. What is the GFR calculator about? It shows something in 1.73 square meters and some deciliters or something, but just tell me the formula for calculating GFR.
    19. Anyone a member also of one or more Ckd support groups in person? I would love to get into at least one.
    20. My family supports me with chronic kidney disease. Anyone else have that family support too?
    21. Anyone else, at least at the beginning, felt less motivated due to CKD?
    22. Is everyone else here like me, no matter what stage of Ckd you're in, have a more limited diet?
    23. You can get more than one kidney transplant?
    24. For anyone on a chronic kidney disease support group in person, what are such groups about and what do they have?
    25. Do all of your family and friends know you have Ckd? Pretty much all of mine do know that already.

    26. Is it true that we only need one kidney or we need two?

    27. Besides in food and drinks, are other lifestyle changes also unique for everyone on CKD, like medications and what household products to have and not have?

    28. Is kidney transplant/dialysis, or both, inevitable for chronic kidney disease patients to have eventually?

    29. Proteinuria is a symptom or sign of CKD, but is it not a cause of it?

    30. I was first diagnosed on CKD stage 3 in April this year when first known to have CKD. In what stage was anyone else on when first diagnosed?
    I am just wondering so much. Just give me good answers, thanks.



  • #2
    1. It actually doesn't come on suddenly it is usually not found out because of no symptoms. I also found out at stage 3 with no diabetes and no high blood pressure. Mine was caused by years of taking NSAIDS for migraines.
    2. Diet does usually get more restrictive as you progress because of changes in your system. But also everyone is different.
    3. It doesn't usually strike all of a sudden. Most people find out in later stages because there are really no sypmtoms before then.
    4. If they find it early when your GFR is above 50 sometimes it can be stopped but mostly it is a progressive disease.
    5. Not on dialysis.
    6. Transplant is NOT a cure. Just like dialysis is not a cure. Transplant just get you off of dialysis so you can live a more normal life. It will not last forever.
    7.Advil did cause my kidney disease. Yes to many can cause it.
    8. You live life.
    9.
    10. You can always start a meetup for kidney patients.
    11.Basically 100 means your kidneys are good. Yes GFR of 35 means that is how much kidney function you have basically.
    12. CKD can make your blood pressure worse along with age.
    13. PKD is polycystic disease. Different from CKD. Just both dealing with the kidney.
    14. I believe everyone has those feelings at first. It does get better and you learn to live with it. I have my days but then I move on.
    15.Yes. I eat differently and think about my life much more.
    16. -
    17. see https://www.kidney.org/atoz/content/gfr
    18. see https://www.davita.com/gfr-calculator/
    19. -
    20. Hopefully everyone has family support but it is not always the case.
    21. still as motivated just more worried.
    22. Not everyone's diet is the same. Most are limited in some way.
    23. Yes you can get more than one kidney transplant.
    24. I don't believe there are many support groups for CKD.
    25. Mostly but they all don't get what it means in my opinion.
    26. You can live with one kidney this is why people can donate a kidney.
    27. Yes everyone is different.
    28. it depends on your age and stage of kidney disease and also how well you stick with taking care of yourself. But it is a progressive disease so many people will progress to that point.
    29. Correct it is not the cause.
    30. I found out two years ago at stage 3a and now stage 3b. Went from GFR 53 to GFR 35.
    I hope this helps but seems like you are writing a book.
    Last edited by DebbyRig; 08-25-2016, 08:30 AM. Reason: adding info

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    • #3
      Hi Jagb1992, those are all great questions! Everyone's experiences and health conditions are different, so it's always best to ask specific medical related questions to your local care team. Have you also heard about no-cost Kidney Smart classes? They're led by kidney disease education experts and are a great opportunity to learn more about kidney disease, the treatment options and to get a lot of these questions answered! You can find one near you here: http://bit.ly/2axNzHn.

      I hope you find all the answers you're looking for. It's great you want to know as much as possible! Have a great day!

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