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  • creatine 1.5 to 2.01

    Not sure what my total condition is at this point. My creatine has been 1.5 and has jumped to 2.01 in 4 months. I had blood drawn again Monday but do not have the results yet. But he did say be prepared to go in the hospital in 3 weeks if the test shows more signs of failing kidneys. Needless to say this has had me worked up since it was mentioned. I'm also diabetic but have improved my A1C to 6.7. While I am over weight (5-10 - 285) I enjoy mountain bike riding. With the heat we have the past couple months I started taking essential electrolytes. I very concerned taking this is what has caused a jump in my creatine level. Primary doctor also put me on Crestor and Actos between last two kidney doctor appointments. Kidney doctor on Friday had me stop taking those meds and the edema in my ankles is all but gone. I'm a single male 45 trying to read as much as I can online and not work myself up so much with the scary facts.

    Would also like to know if there are any support groups in Phoenix I could attend?
    Stage 3 (GFR 35) & Diabetes.

  • #2
    Re: creatine 1.5 to 2.01

    Originally posted by TRB View Post
    Not sure what my total condition is at this point. My creatine has been 1.5 and has jumped to 2.01 in 4 months. I had blood drawn again Monday but do not have the results yet. But he did say be prepared to go in the hospital in 3 weeks if the test shows more signs of failing kidneys. Needless to say this has had me worked up since it was mentioned. I'm also diabetic but have improved my A1C to 6.7. While I am over weight (5-10 - 285) I enjoy mountain bike riding. With the heat we have the past couple months I started taking essential electrolytes. I very concerned taking this is what has caused a jump in my creatine level. Primary doctor also put me on Crestor and Actos between last two kidney doctor appointments. Kidney doctor on Friday had me stop taking those meds and the edema in my ankles is all but gone. I'm a single male 45 trying to read as much as I can online and not work myself up so much with the scary facts.

    Would also like to know if there are any support groups in Phoenix I could attend?
    Hi TRB,

    Welcome! I am in Atlanta and also seeking support groups, but have not been able to find anything. Good luck in your search. Someone here on this board referred me to kidneyschool.com, which answers a LOT of questions. I am about 2-3 weeks new to this whole CKD thing, so I know how overwhelming it can be. Good luck in your search for information and support. I find these boards to be very helpful and supportive.

    Please post again and let us know how your latest tests come out. It is scary at first, but everyone here has experienced the same feelings, so it makes one feel a little less afraid. Sounds like you are already ahead of the game, researching all you can. Make a list of questions for your doctor cause there is a LOT to take in. Don't get too overwhelmed worrying so much. Like I said, the people on this board are a great support system, and have some good stories to share about their experiences.

    Have a good night!

    Comment


    • #3
      Re: creatine 1.5 to 2.01

      Well I had a better day today and working on coming to terms on all of this. I just finished a 9 mile bike ride (road) in 110 degree heat. I will miss riding (mountain) if it comes to a point I can't because of the insertion area. I'm not up on all the terms yet. But can't imagine my forearm taking the beating it does when coming down a mountain trial. I have already started on a low protein diet. Not sure how much I should reduce so I'm starting around 60 grams right now which is not a lot, 5 ounces of chicken. Had another great day diabetes wise. I reduced the amount of insulin by a lot and have better overall readings. Next Wednesday at this time I will have my answers!

      A happier time!

      Stage 3 (GFR 35) & Diabetes.

      Comment


      • #4
        Re: creatine 1.5 to 2.01

        Hey, I was reading your blog and can really relate to the fears. I am lifelong bike rider and have had to deal with the fact of not being able to ride. I'm on PD so it's not as restrictive as hemo, but diffently puts alot of concern into what happens if I wreck or just plain accidently pull my catheter tube on something. I've just had to take it much easier onmy rides, but not give up completely. Of course my kidney doc and family has an absolute fit when I do, but so what.Take care and keep it between the lines.

        Comment


        • #5
          Re: creatine 1.5 to 2.01

          So are saying the doc's are even concerned with road rides? Besides getting hit by a car I can't see a whole lot of danger versa daily hazards. Now mountain I can understand and hopefully my current scare is just that and my readings will have increased. Even if they have I think at some point I might be in the same boat as many on this forum. But as the saying goes live to fight another day!
          Stage 3 (GFR 35) & Diabetes.

          Comment


          • #6
            Re: creatine 1.5 to 2.01

            [QUOTE=TRB;23845]Not sure what my total condition is at this point. My creatine has been 1.5 and has jumped to 2.01 in 4 months.
            QUOTE]

            Hi TRB,

            Welcome to the forum. I am not an expert. I found out that I have CKD last year in November.

            Do you know what your GFR is (http://www.davita.com/gfr-calculator/noflash/)? Mine was 2.1 (stage 4) and my renal doctor told me that it was not a bad number.

            Take care and please come back to let us know how you do and what your lab report says.

            pal

            Comment


            • #7
              Re: creatine 1.5 to 2.01

              My last blood work said GFR 37. I think they are concerned as I had the drop in a 3 month span. This could be a blessing as I have taken a much harder look and this in general! I have started working harder to put off any dialysis or transplant if I can. Just wish I had known some of this stuff when I had a GFR of 47!

              Another general question: I see on here people stating they have been on dialysis for 15 plus years. I wonder why so long? Are they that rare that no one can provide them with a transplant?
              Stage 3 (GFR 35) & Diabetes.

              Comment


              • #8
                Re: creatine 1.5 to 2.01

                Originally posted by TRB View Post
                Another general question: I see on here people stating they have been on dialysis for 15 plus years. I wonder why so long? Are they that rare that no one can provide them with a transplant?
                Hi TRB,

                I do not have an answer for your question as I am not on dialysis nor am I a transplant candidate. I am with you; I hope that I do not need to be on dialysis at all. My GFR is 28 and my renal doctor told me if I continue doing the way I am doing, he does not think the disease will affect my longevity.

                Hope it is the same for you.

                pal

                Comment


                • #9
                  Re: creatine 1.5 to 2.01

                  Hi TRB,
                  I hope when you get your next results they are good news. It's great that you are exercising so much and keeping you hemoglobin A1C in such good control! That should help you to avoid dialysis as long as possible. As you have already learned, don't take any over the counter medicines or supplements without checking with your neprologist first. Many things can be harmful to you. As to the question about why some people are on dialysis so long, there a lot of possible reasons. Some people choose not to have a transplant. Others may have one or more factors that complicate their ability to receive a transplant such as obesity, other health problems like cancer, previous transplants that have caused antibodies, drug or alcohol addictions, lack of family or social support to help them post transplant, even unfortunately some people are denied transplants because they have not been compliant with the treatment of their kidney disease or other medical problems and the transplant committee wouldn't consider it ethical to trust them with an organ if they have a history of not taking care of them self. Anyway, 15 years is not the norm for most people desiring a transplant. Also don't resign yourself to having to give up mountain biking. When the time comes ask your doctor, you might be surprised at what they will allow you to do. When I was on dialysis they let me continue all my normal exercising as well as playing paintball as long as I took extra precautions. Let us know how the labs turn out.
                  Jim

                  Comment


                  • #10
                    Re: creatine 1.5 to 2.01

                    Hi TRB: It is good that you are so caught up in your sport of Mountain biking. If you have the strength to ride that distance in the 110 degree heat, You must not be retaining too much water. I am starting to walk on a treadmill in the last month. I like to walk on it, a fast walk, in the late afternoon while it is still warm. the treadmill is in a room that isn't air conditioned and so it is rather warm in that room and I can break out in a good sweat and lose some salt. Now my weight is coming down. I was down to 97.5 kilos today after dialysis. I have been on hemodialysis for over a year now. I am really feeling good now and I am starting to see the light at the end of the tunnel. I have a live doner a long time friend. I just need to lose down to two hundred pounds or under. I have to get rid of my gut because that is where they will put the kidney right about the belt line on the right side. So I am getting to be anxious. Well take care of your self. If you get a fistula or a graft in your arm. you might want to make something out a towel wrapped around your arm to protect that arm against bumps and bangs while you are riding.. There is a lot of blood going through that fistula or graft and so any kind of cut in that area could be fatal you will bleed out in a hurry. well I am on dialysis and if the bandages aren't tight enough after they pull the needles out, I can see the blood spurting out around the gauze pads there is a lot of pressure there. Ok I don't want to scare you, but I have had a lot of problems with my graft. So I just had to stop using that arm. It isn't the dominant arm. so take care of your self.

                    Comment


                    • #11
                      Re: creatine 1.5 to 2.01

                      My current rides have been road rides which I did again last night. Looking forward to getting my results Wednesday. I'm not sure if it is time for me to be on dialysis or not. But it is certainly time to eat right get the weight off and prevent as much damage as I can to my kidneys.

                      last night in 105 degree temps.

                      Not a Lance Armstrong ride but good for a fat kid.

                      8.19 miles
                      Time: 39.24
                      Average MPH 12.3

                      I feel real good and my heart rate came down from 154 pretty quick when I finished.
                      Stage 3 (GFR 35) & Diabetes.

                      Comment


                      • #12
                        Re: creatine 1.5 to 2.01

                        Is this smoke and mirrors?

                        http://www.kidneysrestore.com/testimonials.htm
                        Stage 3 (GFR 35) & Diabetes.

                        Comment


                        • #13
                          Re: creatine 1.5 to 2.01

                          My numbers came is just a little better (creatine 1.8) so no dialysis or hospital at this time. He did say he would not like me to mountain bike just yet because of the muscle break down and dehydration. Had to talk him into letting me do a road ride! I have another follow up in a month and hopefully it will even come down a little more. I did get him to set me up with a in house dietitian which should help also if I follow all the rules. Bottom line is while I’m still in stage 3 CKD it did not get worse.
                          Stage 3 (GFR 35) & Diabetes.

                          Comment


                          • #14
                            Re: creatine 1.5 to 2.01

                            Latest numbers are down to 1.63 with a GFR at 46. Uric Acid is high at 10.2 but I have stopped taking allopurinol. This lab work was done not for my Nep so I'll see if I can get back on something for the uric acid when I see hium in a few weeks. As soon as I get over this foot issue I'll keep working out and try to eat the best I can. It's a little comforting to see the numbers come down instead of climb but I understand I'm not out of the woods by any means!

                            Also been readunbg this book which I suggest for all they are concerned about our food intake.
                            http://www.thechinastudy.com/about.html
                            Stage 3 (GFR 35) & Diabetes.

                            Comment


                            • #15
                              Re: creatine 1.5 to 2.01

                              Hi TRB - Sounds like a good book. Have you come across anything in the book regarding food, nutrition and the kidneys? I ordered a book called Nutrition and the Kidneys and I'm trying to understand it a little better. Seems like it was written more for doctors.
                              ~ddarling~

                              Comment

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