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  • New here have some questions?? HELP

    I was just diagnosed with chronic kidney disease. I was released from the hospital yesterday. My creatine level ,at the the hospital, was 4.3. After my 5 days in the hospital my level dropped to 3.8. My doctor has prescribed procite 20,000 units injected once a week. My one kidney is gone(shriveled up) the other is working at 30% According to the kidney doctor.But using the gfr calculator,it is showing 15 to 18%. I am 56yrs.old. I have coronary disesae,diabetes,and pad.I have a few questions.

    1- Is 20,000 units a lot to take for a persom with coronary disease?

    2- Should I be thinking about dialysis or a transplant at this time? Or am I jumping the gun?

    I have more questions but I will wait to get these answered.

    Thanks Fred

  • #2
    1-It depends on how your levels are. Everyone is different and receive different amounts of Epo.

    2-Learning as much as you can ahead of time to prepare is not jumping the gun, but don't freak out about anything either. Dialysis isn't really bad. It just becomes part of your everyday life. Learning more can help you prepare in case you do need it.
    Shannon
    KidneyFun // Kidney Korner // Organ donation awareness products!
    If the world didn't suck...........We'd all fall off!

    Comment


    • #3
      Originally posted by shay_pcb View Post
      1-It depends on how your levels are. Everyone is different and receive different amounts of Epo.

      2-Learning as much as you can ahead of time to prepare is not jumping the gun, but don't freak out about anything either. Dialysis isn't really bad. It just becomes part of your everyday life. Learning more can help you prepare in case you do need it.
      Thanks for the answer. My MD DR. did not talk to me much about anything and the kidney DR. was a hospital call in..Should I consult and get a kidney DR?

      Comment


      • #4
        I think when the time comes for a nephrologist, your DR will refer you to one.
        Shannon
        KidneyFun // Kidney Korner // Organ donation awareness products!
        If the world didn't suck...........We'd all fall off!

        Comment


        • #5
          I certainly don't think it would hurt to ask your dr. to refer you to a kidney dr. I wouldn't assume that he would just do it if you needed it. I had CKD for 6 years and my dr. didn't even tell me, just said my kidney function was abnormal and I should drink more water. Well, as I found out later, "abnormal" meant that my kidneys were functioning at less than 30%. I would have like to have known so that I could ask my own questions. When I questioned him about it later, he just said that there was nothing I could have done about it anyway, which is not really true.

          Personally, I think you should be seeing a nephrologist, if even for just an initial consult. You could get some advice on diet and nutrition as well as medications that could preserve and protect the kidney function you currently have.

          Please keep us informed as to how you make out.
          It's not about waiting for the storm to pass, but learning to dance in the rain.

          Comment


          • #6
            Originally posted by missedtheboat View Post
            I certainly don't think it would hurt to ask your dr. to refer you to a kidney dr. I wouldn't assume that he would just do it if you needed it. I had CKD for 6 years and my dr. didn't even tell me, just said my kidney function was abnormal and I should drink more water. Well, as I found out later, "abnormal" meant that my kidneys were functioning at less than 30%. I would have like to have known so that I could ask my own questions. When I questioned him about it later, he just said that there was nothing I could have done about it anyway, which is not really true.

            Personally, I think you should be seeing a nephrologist, if even for just an initial consult. You could get some advice on diet and nutrition as well as medications that could preserve and protect the kidney function you currently have.

            Please keep us informed as to how you make out.
            missedtheboat I will take your advice and ask my DR. Is it common to feel like bugs are crawling all over you and for your hands legs and feet to swell?

            P.S. Thanks for the speedy replies.

            Comment


            • #7
              Don't know about the bugs crawling all over you, but the hand and foot swelling is very common. Putting your feet up and pressure socks help with the foot swelling. You sound as though you REALLY need to see a nephrologist and at least get diet and medication advice. You can delay dialysis for quite a while by following a strict diet and taking your medications as prescribed. However, your numbers indicate that you are at a stage where you should be seeing a nephrologist regularly and educating yourself about dialysis and possible transplant treatment. The 20,000 units of EPO is pretty standard when you just start out on it. My own dose has been reduced as my hemoglobin and hematocrit numbers have come up. EPO is a godsend. I could hardly generate any enery before I started taking it because my hemoglobin count was so low. DaVita has a lot of good educational materials which they send for free. Your nephrologist can hook you up.
              To the stars through difficulty!

              Comment


              • #8
                I just wanted to say one thing about what chefnancy said. I don't think the pressure socks will help unless it is a circulation problem that is causing the swelling. I had to wear those tight stockings for a DVT I had. It helped get the swelling down until the blood clot dissipated. Then when I tried to wear the stockings it only made all of the fluid I was retaining pool underneath the stocking. It was VERY uncomfortable.
                Shannon
                KidneyFun // Kidney Korner // Organ donation awareness products!
                If the world didn't suck...........We'd all fall off!

                Comment


                • #9
                  Originally posted by bozooka View Post
                  ... I have coronary disesae,diabetes,and pad. ...
                  Thanks Fred
                  Hi Fred,

                  It appears you have been getting some good information but I would like to add that you need to ask your doctor about taking cilostazol for the coronary disease & PAD, and Lyric for the peripheral neuropathy/restless leg syndrome.

                  I take both medications and they have made a huge difference in my quality of life -- no pain, better circulation, much less swelling and inflammation, and better sleep.

                  BUT, I do not have kidney problems, my husband is the one on dialysis. He has never taken cilostazol but he was on low dose (25mg) of Lyrica for RLS (restless leg syndrome), which developed when his kidneys went to about 15% function. Since he started dialysis on the portable NxStage at home, he no longer has RLS and no longer needs the Lyrica. But it worked well for him and enabled him to sleep those months before he started dialysis.

                  Lorelle

                  Comment


                  • #10
                    Hi chefnancy thanks for the reply.. I do wear diabetic socks but they tend to make my legs puff up were the sock ends..But whats happening now is the socks Do not keep the swelling down! Besides the hands and feet my stomach is bloated and puffy too. I take a lot of BP medicine as i have had high BP for years now. I am on

                    coreg
                    diazpan
                    clonipin
                    forozimide water pill
                    insulin Humilin and lantus
                    aspirin (heart attack)
                    phenobarbital and dilantin ( seizures)
                    I also take stuff for my prostrate
                    I think all the meds are doing this! and the diabetes..

                    After reading and doing some research I am tending to think that you are right I should be seeing a kidney DR. I think my MD DR did not want to tell me about my options cause he knew I would freak out..I received a shot of the EPO while i was in the hospital it did make me feel better ( more energy) but the other symptoms still are with me.. I also got a shot of iron in the hospital..

                    Comment


                    • #11
                      Black ....Thanks for the reply.. I took down what you said and will ask my MD DR. about them..You mentioned sleep that I am dire need of.. I sleep for about an hour then its up to the potty this goes on all night and day! I need a few good full nights sleep. Even in the hospital I was up every hour or so..

                      Comment


                      • #12
                        It may be the Coreg that is causing your swelling. The PDR lists swelling of hands and feet as one of the most common side effects of Coreg. You should probably talk to your dr. to see if there is some alternative to it. As I read the info on it, there may not be, however, and you may just have to learn to put up with the swelling. Although others disagree, I find the pressure socks help some. If what you mean by the "bug-crawling" is the sensations you get from neuropathy of the feet and legs, Lyrica is a miracle drug. It is expensive, but very effective. If your regular dr. prescribes it for you, make sure he/she knows that it must be prescribed in reduced doses for people with kidney disease.
                        To the stars through difficulty!

                        Comment


                        • #13
                          New here too

                          This was very interesting to read as only yesterday I went to a Nephrologist for the first time. I am so full of quesitons. I went to my reg doc Aug 2nd because my ankles are swelling and had lab work, I'm a type 1 diabetic.. for 36 years now. I got a call the next day saying they were making an appt for me with a nephrologist, that my kidney function was abnormal. First I'd ever heard of this. I see this nephrologist and he tells me I have only 29% 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 don't know what any of this means and I'm scared. I'm 48 and divorced, living in a new state...... I don't know where to turn. I'm glad I found this site! So can Stage 4 and 29% funciton last months? Years? The doctor didn't mention medications... outside of prehaps changing my blood pressure medications. All he told me was to restrict salt in my diet and eat no more than 40 grams of protein. I found this site by searching for low protein recipes. What are the main medications you can take and what do they do?

                          Thanks! Brenda

                          Comment


                          • #14
                            So can Stage 4 and 29% funciton last months? Years?
                            Yes, it can last years. Any meds that your neph prescribes and diet restrictions he/she gives you should be followed to preserve your remaining function as long as possible.

                            What are the main medications you can take and what do they do?
                            The meds are mostly things just to keep your body balanced...for lack of a better way to say it. I, for example, take a lot of different vitamins. Everyone is different though, and their bodies handle kidney failure differently, therefor they need different meds. I'm sure your neph will take care of this for you.

                            Some of the more common renal meds are Epogen, sodium bicarb, and Venofer, just to name a few. I made the names of them clickable if you want to read what they do.
                            Shannon
                            KidneyFun // Kidney Korner // Organ donation awareness products!
                            If the world didn't suck...........We'd all fall off!

                            Comment


                            • #15
                              BrendaA, welcome to this site. You will find a lot of helpful people here for both information and support. Finding out that you have CKD is somewhat overwhelming at first. You don't know what you should ask, what you should do, and what you don't know. I suggest that you go to www.kidneyschool.org for good, clear information about the disease and its treatment. This will give you a better grounding to ask questions and make decisions. For a good explanation of the renal diet go to www.vcuhealth.org/transplant...renal_diet.pdf. You will need Adobe Acrobat Reader, which you can find free on the net if you don't have it, to download this. You could remain at your current level for years with proper diet and medication. If I were you, I would insist upon getting a consulation with a RENAL dietitian (a regular one may not know enough to guide you). At your current functioning level, you still have some time before things get really dicey so you should inform yourself, get either a nephrologist who will take time to answer all your quesitons or a primary care physician who is willing to run interference and translate for you. Communication is very important. Now is also the time to inform yourself about treatment options so that when the time comes to make those sorts of decisions you will be prepared. Above all, I know it is hard, but try to keep a positive attitude. Take care.
                              To the stars through difficulty!

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