Announcement

Collapse
No announcement yet.

New here have some questions?? HELP

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    >I see this nephrologist and he tells me I have only 29&#37; kidney function! Scared me half out of my wits! Stage 4? What happened to stages 1 2 and 3. I'm upset I was never told. <

    I went through the same thing Brenda. I went from being told my kidneys were "abnormal" to stage 4. I was pretty angry with my primary care doctor for not giving me the opportunity to ask questions and investigate myself what my options could be.

    >So can Stage 4 and 29% funciton last months? Years? The doctor didn't mention medications... outside of prehaps changing my blood pressure medications. <

    Some people in this forum have talked about how they've stayed in Stage 4 for years. Personally, my decline happened rather rapidly. I went from 25% kidney function to 12% in 3 months. My doctor doesn't know why it is happening so fast. The medications my doctor tried were actually blood pressure medications so you may be already on them. We tried Lisinipril, but for me it didn't help. Ace inhibitors have been shown to sometimes improve or at least protect kidney function.

    Good luck and let us know how you are doing.
    It's not about waiting for the storm to pass, but learning to dance in the rain.

    Comment


    • #17
      I was not told I had a kidney problem untill my GFR was 14. when a saw the renal dietician
      she said that I could only have 3oz of protien a day. As for potassium and phosforus I have staid as far away from them as possible. rather than leeching potatos and such have simmly avoided them.I am not claiming to be perfect about but I try. now is its going on three yrs
      since my diagnosis and my GFR is at 17 and holding. Diet and meds are obviosly really
      important.
      grammy g

      Comment


      • #18
        As you read about our experiences, you will find that each of us has had a different course of the disease. However, it is more common for Stages 3 & 4 to last for years with proper nutrition and medication. I hope your case is one of those. Many people who have kidney disease also have diabetes. Diabetes and high blood pressure are the most common precursors of kidney disease. Many people have both. As GrammyG indicates, it is crucial to at least try the diet and medication routes as they often delay the progress of the disease. Haven't heard back from you. Hope you are OK and enjoying the Labor Day weekend.
        To the stars through difficulty!

        Comment


        • #19
          Thanks so much!!!

          iI'm doing an awful lot of reading. I've started a list of questions for my doctors and I've been to KidneySchool.org. What a great site that has turned out to be for me. I appreciate the site about the diet as that's what I've been trying to research and haven't found alot on my own. It's comforting here. Thanks!

          Comment


          • #20
            No Magic Number..:eek

            :Hi all I have started Procrit now, I am on my 8 th shot at 20,000 units. I had blood work done the other day and DR. said my count is way off. my creatine is 4.1 and my bun was 6 or 7 I feel awful all the time. I am so itchy too.Dr. says my numbers are still o.k. and that there is no magic number for dialysis..

            Comment


            • #21
              Your itching may be from too much phosphorous. Is your doc giving you binders and/or are you doing dietary restrictions of phosphorous? If not, ask about it. When my phosphorous gets too high, I itch like crazy. Give the Pro-Crit some time to work (it takes a while). Your dr. is right about there being no magic number for dialysis, although there are guidlines. If you disagree with his opinion, maybe you should look for a second opinion.
              To the stars through difficulty!

              Comment


              • #22
                feel like crap

                Originally posted by chefnancy View Post
                Your itching may be from too much phosphorous. Is your doc giving you binders and/or are you doing dietary restrictions of phosphorous? If not, ask about it. When my phosphorous gets too high, I itch like crazy. Give the Pro-Crit some time to work (it takes a while). Your dr. is right about there being no magic number for dialysis, although there are guidlines. If you disagree with his opinion, maybe you should look for a second opinion.
                Hi chefnancy;7565
                I am very happy with my DR. he is a good doctor.. I have been trying to do everything right but still feel like crap. how long does it usually take for procrit to start working? The itching is really driving me crazy to. Does anyone else have a problem with itching?

                Comment


                • #23
                  Itching does go along with uremia, but is worst when phosphorus is high. The Pro-Crit takes a few weeks to work well, but only affects your Hemoglobin and your general health, not your creatinine and BUN. With me the effects were gradual, but I really felt better (more energetic) after about 3 months. Are you following a strict renal diet? Have you ruled out allergies and other possible causes of itching?
                  To the stars through difficulty!

                  Comment


                  • #24
                    Can a dialysis patient use sea salt?

                    I have a wonderful friend who I love dearly that is diabetic & just started dialysis about 6 weeks ago. She is coming home from the hospital Saturday & misses the taste of salt... I know that there is a huge restriction on it, but was told that sea salt is a possible substitute, but I need to be sure before we cook for her? Please help me? Thanks, Barbwire

                    Comment


                    • #25
                      Nope...no salt is good. Salt makes us retain fluid more, since we don't pee as much as we should. Any kind of salt and MSG will make us swell up like balloons!



                      hehehe
                      Shannon
                      KidneyFun // Kidney Korner // Organ donation awareness products!
                      If the world didn't suck...........We'd all fall off!

                      Comment


                      • #26
                        I agree with Shay. No salt. However, Mrs. Dash adds flavor without salt. DO NOT use any other salt substitutes as they just use potassium instead of sodium and we must restrict potassium as well as sodium, phosphorus and protein. If you want to educate yourself about kidney disease, the treatments and the diet, go to www.kidneyschool.org. They have information presented in modules that are relatively short, so you can do just as much as you want each time you go there. Other ways you can add flavor include using herbs and making your own beef and chicken stocks (commercial ones have too much sodium) to use as flavorings.
                        To the stars through difficulty!

                        Comment


                        • #27
                          Originally posted by chefnancy View Post
                          Itching does go along with uremia, but is worst when phosphorus is high. The Pro-Crit takes a few weeks to work well, but only affects your Hemoglobin and your general health, not your creatinine and BUN. With me the effects were gradual, but I really felt better (more energetic) after about 3 months. Are you following a strict renal diet? Have you ruled out allergies and other possible causes of itching?


                          Well people I just got home from the hospital after a 10 day stay!..In one short month my CKF went from 30% to less then 5 %.. I had to have emergency tubes put in my neck for dialysis! I have had 3 treatments and feel better.....I also found out what all the itching may be from. I might be allergic to the procrit..

                          Comment


                          • #28
                            Well, that would explain it. Maybe one of the other formulations of epo will be okay for you. Sorry to hear about the sudden decline in your kidney function, but glad you are feeling better. Did your drs. have an explanation for why the sudden decline? Have you had a fistula placed? Good luck to you.
                            To the stars through difficulty!

                            Comment


                            • #29
                              Originally posted by chefnancy View Post
                              Well, that would explain it. Maybe one of the other formulations of epo will be okay for you. Sorry to hear about the sudden decline in your kidney function, but glad you are feeling better. Did your drs. have an explanation for why the sudden decline? Have you had a fistula placed? Good luck to you.

                              My DR. said my kidney's just couldn't handle it anymore. I asked about a Fistula and Dr. said lets get you feeling better first. He said a fistula placement is a major thing to do so he wants my body to be ready for it...

                              P.S. I also need to say that they had to give me 4 pints of blood for my anemia.

                              Comment


                              • #30
                                Sometimes we do have to resort to blood transfusions to deal with our anemia. I have a persistent problem with it and end up getting transfusions occasionally despite the Pro-Crit injections. I just had my fistula revised and neither that nor the original placement was a very big deal. Both would have been same day surgeries if I didn't react badly to the anesthesia. That made me have to spend one night in the hospital for each surgery. I had very little pain and felt back to (my) normal within a couple of days. Maybe your sudden drop in kidney function has made you fragile in some way. Cathers are more prone to clotting and infection, so most drs. like to get the fistula placed so it can mature. They take some time (2-6 months) to mature.
                                To the stars through difficulty!

                                Comment

                                Working...
                                X