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  • Encouragement

    I'm pretty new to this forum, but have been reading posts from so many people going through the various stages of kidney disease and dialysis and my heart just goes out to everyone, the patients and their families. I have had diabetes for 32 years and ckd for 13 years. I was on dialysis for 1 1/2 years and just received a kidney and pancreas transplant 3 1/2 months ago. I would love to share my experiences with anyone who has questions about any aspect of the process. I am an RN and feel that one of the reasons God had me go through all this is that maybe with my experience with kidney failure and my nursing experience I could educate and uplift some folks along the way. My prayer is that God will bless all of you who are struggling with kidney disease and the other issues that come with it.

  • #2
    Re: Encouragement

    Thank you jimw - I'm sure you will hear from many people. God bless you.
    ~ddarling~

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    • #3
      Re: Encouragement

      Hi Jim.

      That is so sweet of you to be willing to assist. Is it true that the creatinine level can vary from time to time? My current GFR is 28 and my renal doctor told me that if I can continue doing what I have been doing, he does not think that the disease will affect my longevity. Have you seen any cases like that?

      pal

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      • #4
        Re: Encouragement

        Pal,
        I experienced that and I've heard of other cases as well. My creatinine was mostly between 2-3 for about 10 years. If I got sick with some other illness, sometimes it would elevate alarmingly, but when I got over the illness it would go back to it's baseline. Sometimes it would go up with no easy explanation of why. Back when I first was diagnosed with ckd in 1995 they told me it usually advances steadily on to failure. They were guessing I would be on dialysis within 2 years of diagnosis. But God apparently had other plans and I didn't have to start dialysis for 12 years. I did pick my nephrologist's brain to find out what I could do to preserve my kidney function and tried my best to follow his advice. Something worked, but I never discount God's part in this.

        So I definitely believe that taking good care of yourself is of great importance. My nephrologist was always amazed that I actually did what he told me, but my training as a nurse has taught me that the best insurance you can have is to take care of yourself and stay in the best shape you can. It sounds like you are doing that well. Keep up the good work!

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        • #5
          Re: Encouragement

          Hi Jim,

          Thanks for your quick response. By the way, do you mind sharing with us what you did over the years to preserve your kidney function? Also, on another post, you mentioned "restless leg". Do you mind explaning what that means and what it is? Since English is not my first language, therefore, there are so many different terms that I do not understand. Hope you do not mind educating me.

          Many thanks in advance.

          pal

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          • #6
            Re: Encouragement

            Pal,
            No problem. As for what I did to preserve my kidney function, they believed at that time that my kidney disease was caused by my type 1 diabetes, since that time they wonder if my high blood pressure that the md's failed to diagnose for about 10 years may have been the primary cause. Regardless, in my case with diabetes and hypertension the nephrologist told me 2 things that will destroy a kidney the fastest are high blood sugar and high blood pressure. So he had me start checking my blood sugar 8 times a day and make sure it stayed in the normal range at all times. I got a referral to a endocrineologist/diabetologist who helped me to do that. The blood pressure was harder to manage. I had to check it closely and they had to keep adjusting, changing and increasing medicines. It got harder to control until I ended up on dialysis, but by controlling it as best as we could, I believe extended my kidney function. Most of the other things were pretty basic, eat a well balanced diet, exercise, don't take over the counter medicines or supplements without checking with your doctor. For all those years I had labs drawn and saw my nephrologist every 3 months so they could stay on top of any problems. It all worked well. I never lost any time from work, even when I was on dialysis, and I felt well most of that time.

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            • #7
              Re: Encouragement

              Pal,
              Since I was too wordy in the first part of my answer, this is a separate answer to the question about restless leg syndrome. It is a condition that causes the legs to be unable to remain still. Sometimes they hurt or itch, and people who suffer from it find it miserable. It most often occurs at night and can cause or worsen insomnia. Many people have it without kidney disease, some researchers believe it is of neurological origin. Other factors can cause or worsen it such as anemia, or electrolyte disturbances, like sodium, calcium, potassium, magnesium, etc. For those who have it without kidney problems there are some prescription medicines that may be helpful. For renal patients it is usually a matter of identifying what specifically is causing the problem and dealing with that problem.

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              • #8
                Re: Encouragement

                Hi Jim,

                Once again, thanks a million for your answers.

                I believe my CKD is caused by hypertension. My BP was as high as 210/123 but now is around 120 over 80. Sometimes it is higher than that but sometimes it is lower. I hope with the medication that I am taking to control my BP, my kidney function can be perserved as long as yours.

                pal

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                • #9
                  Re: Encouragement

                  Hi Jim,
                  Like Pal, I am very interested in knowing how to preserve our kidney function and try to avoid dialysis for as long as possible, if not forever!! High blood pressure can cause kidney disease and kidney disease can also cause high blood pressure...my neph believes my kidney disease (I am stage 4, pre-dialysis) was caused by high blood pressure. It is pretty much well under control now with my meds. I am normally anywhere between 92/70 to 120/80. My doctor also is very impressed that I listen to him - I guess not many people do. His first and foremost priority when I was first diagnosed was to get my blood pressure under control. That was even more important to him than the diet. I try to follow the diet as strictly as possible, but the diet is one of the hardest for me. Sometimes I'm even afraid to eat, and I sooo miss so many foods! I worry about malnutrition and staying healthy with this diet all the time.
                  ~ddarling~

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                  • #10
                    Re: Encouragement

                    Hi Debbie,
                    It sounds like you are doing a great job of controlling your blood pressure. Your doctor is correct that kidney damage can raise blood pressure. As the kidneys are less able to filter out wastes, it's natural response is to raise the blood pressure to try to filter the blood more efficiently. Unfortunately that just causes more damage. So monitoring blood pressure closely is important so that if it is not well controlled your doctor can change your medication or dosages. I believe it is more important than diet. I think diet is the hard part for all of us. Having been diabetic most of my life, I know staying on a healthy diet all the time is hard. Do your best, and allow yourself some indulgences, you're human and you need some treats along the way. Just make it the exception and not the rule. Blessings to you.

                    Jim

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                    • #11
                      Re: Encouragement

                      Jim,

                      Recently joined the forums, been lurking for a while and only ever posted once before. I am in the process of finding out why my creatinine is elevated (1.6) and just had a round of test done (blood,urine,ultrasound and EKG) and waiting for results. It is great to hear real world experiences, it is very encouraging.

                      Had a few questions. How long were you on dialysis? Was it hemo or one of the home varieties? Was your kidney donated from a family member or friend?

                      Thank you in advance

                      Best,
                      Bravo

                      Comment


                      • #12
                        Re: Encouragement

                        Originally posted by 12Bravo View Post
                        Jim,

                        Recently joined the forums, been lurking for a while and only ever posted once before. I am in the process of finding out why my creatinine is elevated (1.6) and just had a round of test done (blood,urine,ultrasound and EKG) and waiting for results. It is great to hear real world experiences, it is very encouraging.

                        Had a few questions. How long were you on dialysis? Was it hemo or one of the home varieties? Was your kidney donated from a family member or friend?

                        Thank you in advance

                        Best,
                        Bravo
                        Hi Bravo,
                        Nice to have you on the forum! I was on dialysis for a year and a half. I was planning on going right on home hemo, but had to end up doing center dialysis for 6 months due to my own circumstances. I was in the process of buying a new house, and then had to have plumbing and electrical modifications done. I did nocturnal hemo dialysis which I highly recommend. It's nice to be able to use your sleeping hours for dialysis. It may not be available everywhere right now though. If not, they do have short daily hemo available which is also good, Peritoneal Dialysis PD is also a great option for many people. I would recommend home dialysis over center dialysis for anyone who is able to participate in their own care. With my nocturnal dialysis I would run 8 hours, 3 times one week and 4 times the opposite week. I felt great and was able to keep working full time.

                        I had a kidney and pancreas transplant which is only possible from a deceased donor. In my case it was a 17 year old girl who died in a traffic accident, and her family made what had to be an incredibly difficult but wonderful decision to make something good come from something so tragic.

                        Please let us know how your tests come out. You will be in my prayers. There so many wonderful people on this site who are going through various stages of this process who love to share knowledge and encouragement. We look forward to hearing from you more.
                        Jim

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                        • #13
                          Re: Encouragement

                          Jim - it's great to have you on this site! You give me hope that my transplant will come through.

                          I had CKD for 25 years and counting. Diagnosed at age 18 with high BP - I was right up there with the stroke victims - 210/190. It was undiagnosed for several years and more than likely that is what killed my kidneys. They have no other explanation.

                          I stuck to diet and exercise. I do believe that "sweating out" some of the toxins does assist one in staying healthy. I've been at school now for almost 10 months and have not had time for the treadmill. I still do free weights and a weight machine workout, but do believe that exercise should be mandatory once you are diagnosed.

                          Diet - YES FOLKS - no McDonalds or KFC or Burger King - no pizza or subs or frozen dinners. Stick with the veggies and low protein (moderate amounts) and you should do fine. Just realize that at some point, the diet will not assist you once you get to a certain number. I've been going with "veggie nights" whereby I eat nothing but veggies for dinner. I do every other night with protein. But yes, diet and exercise is the key.

                          I'm still hanging on at 10% and still feel partially "okay". No nausea..just some fatigue.

                          And yes Jim I do agree that our Creator plays a part in all of this - pray and pray hard for the right path, the right treatment and strength to hold you while you continue on your journey.

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                          • #14
                            Re: Encouragement

                            Thanks Bikerchick,
                            It is so good that we can come together here and support each other. It helps so much to talk with other people who are going through the same thing, because most people just can't understand.

                            You are a great example of taking good care of yourself. I believe exercise is very important both physically and emotionally. The newer folks to this site would do well to heed your advice about diet and exercise.

                            To you and everyone on this forum, keep hope! We will get through this. Not only do I believe that God gets us through this, but I believe He allowed this to happen to me to bring me closer to Him. I wasn't doing too well at finding Him on my own, but when my health problems became severe I suddenly found the time and inspiration to seek God. Funny how that works... But I would go through it all again in a minute if that's what it takes for me to have a real relationship with Him. May God bless you all physically and spiritually,
                            Jim

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                            • #15
                              Hi to everyone /question?

                              Hi im sorry i havent been on the forum in a while my father had passed away a month ago unexpected so anyway here i am once again i got a question im throwing out to anyone whom cam awnswer it my doc sent me a lab slip in the mail and i got tot to do urine culture and it says on the slip they want to monitor me more closely Help! thank you Tammy

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