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  • Hello, newbie with just diagnosed Stage 3 CKD yesterday

    Hello everyone,

    My name is Andrew, just was told yesterday that I am in Stage 3 of CKD!! What a shock, initial reaction was, ok, what is that? And how many stages are there? Didn't realize at the moment that it was a serious disease. Been doing a lot of research on my own today, learning what to do and not to do. Not sure how to feel about this. My girlfriend's dad is in Stage 5, and thankfully she has knowledge on this. I have my ultrasound scheduled for Mon the 21st to find out how bad it is, blood and urine results showed Stage 3.

    I have a few questions:

    I love coffee, do I have to give it completely up? Decaf ok?

    I also love steak, do I have to give it up as well?

    I'm an addict for ice cream too.

    Any additional information for this newbie would be appreciated

    Thanks much

  • #2
    Hello andrewc_31,

    I would suggest do all the reading you can stand on this web site courtesy of DaVita. There is a wealth of reliable information provided by one of the largest suppliers of dialysis in the USA. You will find from reading posts from individuals that there is a good deal of variation in symptoms associated with the different stages.

    I was in Stage V for quite a while (6 to 9 months) before starting home hemodialysis training and with it, 5X per week hemodialysis. I wasn't sick and had no difficulties working a demanding full time job, but I had committed to the training and stuck with my commitment. I've been at the HHD regimen now since July 2012 and haven't missed a beat in my active work and play life.

    Yes, I now have a 20 hour per week part time job that I have no choice but to do, and travel takes some planning, e.g. setting up in-center treatments at my business travel destinations, but my care partner/spouse and I are in control. I had close to 10 years to prepare for the prospects of dialysis and was under the care of a competent nephrologist the entire time. As my values got me to Stage IV and Stage V, I increased the frequency of office visits and of course blood work. I started serious dietary restrictions almost a year before I started dialysis, e.g. low phosphorus and low potassium diet with phosphorus binders at each meal. HHD has permitted me to open up my diet and reduce my binders as well as blood pressure meds. My fingernails finally are strong again and resist cracking, owed to the dialysis and 5000 IU daily vitamin D3.

    Comment


    • #3
      Thank-you for your reply, I appreciate the info you gave me.

      So from my understanding of what I have read on this disease, even with a strict diet and exercise, our kidneys with this disease will continue to worsen? The diet and exercise helps from damaging further, but can it help maintain or "hold" my percentages from reaching stage 4?

      Thanks

      Comment


      • #4
        Originally posted by andrewc_31 View Post
        Thank-you for your reply, I appreciate the info you gave me.

        So from my understanding of what I have read on this disease, even with a strict diet and exercise, our kidneys with this disease will continue to worsen? The diet and exercise helps from damaging further, but can it help maintain or "hold" my percentages from reaching stage 4?

        Thanks
        Hi, I was, like you, diagnosed with stage 3 in July of 2010. I would research a lot about what you should eat/drink. I would heaviliy advise going to a nutritionist as well. While you may be limited in the amount you can drink, coffee is allowed. I am now stage 5 and on dialysis and of the 48 ounces I am permitted daily, coffee is allowed (though I chose to give it up as I'd rather use that amount towards water). For me now steak is something I am encouraged to eat (well not necessarily steak, but meat). Albanium is a mineral that helps us dialyze. Ice cream does count as a fluid unfortunately. Anything that would be fluid at room temperature is considered a fluid so things like that, soup and even rice and pasta we have to be careful. Yes, the disease does get worse over time, however, what you do now can delay it. You can hold off dialysis for a long time if you follow the program. Once you reach level 4, your nephrologist will start to talk to you about dialysis (would you prefer the home dialysis or in facility) and possible transplant options. (start looking around for possible donors).

        Some other pieces of advice from my experience, this disease does not mean you have to stop living! One thing I found is (after the initial shock) I found myself valuing, and enjoying life more than I ever had in the past. Also, rely on friends, don't think friends are "pitying" or feeling sorry for you, quite the opposite. I found that some close friends and others that because of this became close friends, were concerned because they cared about me, not pity. Don't turn away love and support from people that care about you. In some ways my kidney disease has been as much a blessing as a curse.

        Comment


        • #5
          Andrewc....You might have to limit ice cream as a treat. Coffee is fine. You should be drinking as much water as you want until you get on dialysis and if you are in stage 3 limiting to no salt is good, no pop and beer type drinks and keeping active is important. When I first was in stage 3 at GFR 50, I started drinking more water, and eventually cut back on salt. I went back up to 70 GFR. I am not diabetic but have Polycystic Kidney's. There is no cure for that but I was able to hold off this disease for 13 years from the time of diagnosis and starting dialysis in October. I refuse to give in to this disease and keep as active as I can. I am over 65 and therefore retire. I go to the Y for aerobic water exercises at least three times a week. When camping I go for short walks. Because my kidney's are growing and pressing on stomach, bowls and lungs, I get out of breath if exercising out of water. I do pretty good in the water and my treat is the hot tub for 10 minutes at the end. I watch my grandkids at least two or three times a week and keep the house as clean as possible and do the laundry. I do some gardening too as long as I don't have to bend over too much because that presses on the lungs and feel breathless. I go to church and church functions. I keep busy with crocheting, knitting and doing some craft projects. Keeping busy and productive is what my doctor tells me is keeping me looking young and having a positive attitude. Good luck on your focus to keep yourself as healthy as possible and trying to gain back some of your function. I hope you don't have other complications.

          Comment


          • #6
            Hi Andrew

            Most Drs. will tell you to eat a normal healthy diet while in stage 3. Your labs will dictate if certain foods should be eaten occasionally or be avoided. I found it helpful to see a dietician who was trained to help kidney patients. They will look at your labs and any other health factors and decide what is the best diet for you. There is no one size fits all when it comes to diet with people with CKD.

            The progression of this disease is also as individual as diet. What factors caused kidney decline along with other health issues influence progression. It's really important to do what you can to stay healthy. Diet, exercise, stress control, and following Drs. advice will help you. When I was first diagnosed I kept asking how long before I get to stage 5. In my situation all my Drs. said many yrs. possibly 20. I was diagnosed in stage 3 in 2007 and I'm still in stage 3. It took me awhile to quit worrying about it, probably a good year. What helped me was to learn all I could about CKD and I was on this forum quite a bit.

            When you see your Dr. again, make a list of questions. It's helpful to have someone go with you if possible. An extra set of ears is a plus. Also, visit this site with questions. There's usually someone who can help.
            May you always have Love to share, Health to spare, and Friends that care


            Acute Kidney Function Loss 12/07 - GFR 39
            Current GFR 46 - Stage 3 - Controlled HBP

            Comment


            • #7
              I love this forum! I have stage 3 CKD and looking at the stories gives me hope.

              Hi Tonia. I was relieved when I saw your post. My GFR was in the mid 80s in 2012 and in 2013 it was 60. It is now 54. If you look at my profile, you will see that I am a paraplegic and can't feel pain when I have a UTI (which happens frequently in paraplegics). Nor can I feel pain in my kidneys. My regular doctor doesn't seem concerned about my numbers so I will be seeing a nephologist asap. My BP numbers have skyrocketed to 160/110 and sometimes higher. I need help now because I already have an aortic aneurism and I don't want it to blow! I had a coronary bypass in 2010 but I had another heart attack last year - lots of health issues. Your post gave me a lot of encouragement and I plan to not let my number go below stage 3. I have made it this far and I plan to stay alive for a long time.

              Comment


              • #8
                I would like to say you need a new doctor. Why is it that doctors are waiting so long to become concerned over these numbers and your bp is way to high for aneurysms and your cardiac problems, have you seen your cardiologist lately? I don't think he will be happy with your bp that high. Please keep after them and take care. Annette

                Comment


                • #9
                  Originally posted by darlingtondoll View Post
                  Hi Tonia. I was relieved when I saw your post. My GFR was in the mid 80s in 2012 and in 2013 it was 60. It is now 54. If you look at my profile, you will see that I am a paraplegic and can't feel pain when I have a UTI (which happens frequently in paraplegics). Nor can I feel pain in my kidneys. My regular doctor doesn't seem concerned about my numbers so I will be seeing a nephologist asap. My BP numbers have skyrocketed to 160/110 and sometimes higher. I need help now because I already have an aortic aneurism and I don't want it to blow! I had a coronary bypass in 2010 but I had another heart attack last year - lots of health issues. Your post gave me a lot of encouragement and I plan to not let my number go below stage 3. I have made it this far and I plan to stay alive for a long time.

                  You do have a history of medical issues but seem to have a good positive outlook. I agree with Annett--Your BP is too high and all your Drs. should focus on keeping it down. Your history is similar to my mothers. She's had bypass surgery and an AAA repair. Also uncontrolled high BP. Her Drs. have been changing meds and adding meds trying to control it. It's so important to keep it under control.


                  Wish you the best!


                  Toni
                  May you always have Love to share, Health to spare, and Friends that care


                  Acute Kidney Function Loss 12/07 - GFR 39
                  Current GFR 46 - Stage 3 - Controlled HBP

                  Comment


                  • #10
                    Last night my bp was 186/117 at bedtime. I crawled under the sheet and prayed that I would wake up in the morning. My bp was close to normal at 5 am. It always goes up during the day and evening. My cardiologist had increased some of my meds two months ago, but to no avail. He wants to do a study of the vessels in my kidneys (scheduled for May). I will see my general practitioner tomorrow and maybe get him to do a new urinalysis. Meanwhile, I have checked out the recipes on this site and will watch what I put into my body. I can't exercise very much due to my paralysis from my spinal cord injury, but I have maintained a good weight of 125 pounds - hard to do when you spend time in a wheelchair. I have a very poor appetite. If it were not for my husband making some meals, I would probably live on Ensure.

                    Comment


                    • #11
                      Originally posted by Bakerbabe View Post
                      I would like to say you need a new doctor. Why is it that doctors are waiting so long to become concerned over these numbers and your bp is way to high for aneurysms and your cardiac problems, have you seen your cardiologist lately? I don't think he will be happy with your bp that high. Please keep after them and take care. Annette
                      Thanks Annette. See my reply below.
                      Jane

                      Comment


                      • #12
                        You do have a lot going on. With PKD my BP changes as the day goes on too. Carrying around the weight of the kidney's is what causes that. Two weeks ago the doctor gave me a different 24 hour meds along with my three times a day BP med which I take at night and so far...finally the BP looks good. in the 70's( bottom number) compared to 90's by dialysis time at 4:00. No BP meds and it is around 110 about 10 years ago. I stay on my meds.so I don't know what it would be now without them. When the bottom number gets in the 90's my chest hurts.
                        Anyways, I go to the Y for aerobic water walking. Someone else there is with prosthetics is in the water too. I know they have lifts for those with lower body problems. I can't walk well unless in the water. My ankles are really bad after all the years teaching and then had a big surgery to attach a tendon to another tendon because the tendon injured was hanging on with less than 5 %. Recovery was over a year on that one because when I was able to get around I walked down the a step and ended up in a cast again. So a year and a half later I was being very careful for that not to happen again. If I walk now, it is with a brace for support. If the brace is not on, no uneven walking. In the water I do very well. Just thought I would share and see how you would be able to tolerate water therapy. Our Y does BP checks once a week on Wednesdays. I take it the days I am not on dialysis. That is where my husband and I went today. He goes with me for support. If I can't go, he doesn't go. Praying you have a good day.

                        Comment


                        • #13
                          New here and this looks like a good thread to jump in.
                          In Jan. 2014 my creatinine was elevated. My dr. had me come in 2 weeks later for a lab retake to make sure that I hadn't had any aleve. ( I had been taking that for when I had pain in my shoulder because of bursitis. The lab came back still elevated. So I went to a kidney Dr. ( some day I'll learn how to spell and pronounce his title) Lab work still showed elevated creatinine. so he order an ultrasound. My ultrasound showed that I have a small pelvic kidney and a normal size kidney in the right spot.Was then diagnosed with stage 3 CKD. I have been looking up a lot on the web to get info. I have no idea what my GFR is. He probable told me but I was trying to grasp everything he was saying. Any way, I'm just anxious because I'm not sure what I am to do. I go in for lab work in 6 months. Oh, I am also on fenofibrate for high triglycerides. Just started to read on that tonight. Sorry I just rambled. Any help? Should I get a 2nd opinion?

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                          • #14
                            Originally posted by kidneydiseasemusttreat
                            Hello,This web can help you http://www.kidney-symptom.com/ckd-stage-3/
                            Thanks, I just did a quick look. Many sites talk about diet. My Dr. didn't say anything about this. Should I try to talk with him or just seek out a nutritionist?

                            Comment


                            • #15
                              FWIW, Aleve will do NOTHING for bursitis. You need steroid treatment for that.

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