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  • Not so new with Kidney disease but new to this site

    Hi everyone. Yes I have been diagnosed with Kidney disease 6 years ago. Due to some meds I was on my GFR dropped to 30 rather quickly. So with adjustments and diet, I got it back up to 80. Now I am down to 60, and floundering. Newly diagnosed with high blood pressure, I started a new med, which I already feel negative effects. I get the blood work done for that in a week, and go from there. I am glad to find Davita, and with the info here, I can refocus my diet, exercise and life. I have been going it alone, except for the Kidney care program, and my husband. I would love to connect with others that understand what is going on. Emotionally I struggle quite a bit, and the days I am so tired, makes it difficult to do much, and that doesn't help my mood either.

    I have a husband, 3 grandkids, and one old dog!!

    I struggle with S.A.D. and the holidays are the hardest.

    that's me in a nut shell.

    Hope you all have a good day!!

  • #2
    I think you are dealing with the situation quite well. I live in Florida where we have 2 seasons. Hot and not quite as hot. Rains 300 days a year for a short time and occasionally gets below 60. So S.A.D. is not too common. Snakes, gators, bugs, sharks, basically anything that can bite or sting you lives here all year long. I started with 5 dogs a few years ago (kids dogs) kids grew up and left dogs stayed. They get old and have to be put down, now I am down to 3 dogs. Just like losing one of the family. Hope your tests come back with good numbers.

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    • #3
      Hi Loganwon, I couldn't imagine living with snakes, gators sharks....all year long. We have bugs, bears, cougars, and deer, elk and moose. Those tend to run away from you, so not much chance of being attacked. We lost a 22 year old cat 5 years ago and we still miss her, I am not looking forward to our old dog leaving, you are right it is like losing a family member. I am keeping my fingers crossed that my numbers come back good. I hope to start to feel better too. My blood pressure hasn't changed yet, but they did say it may take a while. Hanging in there the best I can~!

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      • #4
        Hi Gina I was wondering what caused your kidney disease? How did you get your GFR to go back to being in a fairly good range?(80). I went from 50 down to 38 fairly quickly but it is not coming back. Was just wondering what kind of kidney disease you have. I would be interested to know what kind of diet you follow. Hang in there.

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        • #5
          Hi 1scardeycat, Apparently my kidney problems started with a reaction to some medication I was taking. I have major arthritis, and other auto immune problems, and the combo of water pills and meloxicam(for inflammation from arthritis) dumped my kidneys way down. So taking me off the water pill and adjusting the meloxicam and other meds, it went back up. Diet was control sodium and amount of protein, no more than 4 ounces a day. So the diet I guess is semi vegetarian. The doctors all say that my entire system is hyper sensitive to everything, so they monitor every month. I have tried other blood pressure meds like calcium channel blockers and water pills etc, and well now we try A.C.E. inhibitor. If my body continues to be hyper reactive to this one, we try something else. I imagine that I will have to watch my potassium too, as blood pressure meds can cause issues with that. So when I see the Kidney team again, I will probably get a list of prohibited foods to add to the way I am eating. Thank you for your support.

          How long has your GFR been down? Do you have a kidney team helping out? What do you eat for your diet? What caused your kidney disease? Here is hoping your GFR doesn't drop further, and hoping it can get back up.

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          • #6
            @gina789 I got diagnosed about a year ago and my GFR was at about 55 then but immediately started to go down and now I am at 37. I am seeing a nephrologist (or at least his NP). The doctor mentioned that my CKD MIGHT have been caused by NSAIDS use. Migraines all my life contributed to that. I try to do the low sodium and about 4 to 5 ounces of meat protein a day. My doctor/NP never really told me anything other than low sodium. I have had to find out what works on my own. I avoid high potassium food as much as possible. I doubt my GFR will rebound much. I am just hoping to keep it steady. FYI if you go to American Association of Kidney Disease website they have a free download of nutritional values of basic foods with some restaurant listings. It is really helpful. Have a good day.

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            • #7
              Hi 1scaredycat, I am a little surprised that they didn't give you a better plan for diet. We do what we can, I research a lot on my own too. Thank you for the tip to try the American Association of Kidney disease. I will definitely look into that. Eating out is more challenging, and we do eat out at least once a week. Take care.

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              • #8
                funny you mentioned eating in restaurants. I DO NOT UNDERSTAND why they have to put so much salt in their food. It's getting to the point where I no longer want to go out to eat because I know the sodium content is so high. We went on a cruise in March and my feet swelled up and I could hardly breathe. Unfortunately there wasn't much to eat except salad. It's the last time we go anywhere that I don't do the cooking. New York has said they're going to require a salt shaker on any menu item that has 2000 + mg of sodium. Good grief, how's that going to help anyone ? Also don't understand why kidney organizations aren't pushing really hard for food manufacturers to put phosphorous levels on their foods. I don't mind the diet but it would be nice if we could get some help from the food industry. GRRRRR

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                • #9
                  Hello everyone..., I'm "new" to this forum, and as a matter of fact, I'm new to forums in general, however, I knew I needed to get familiar with them because I'm not getting answers and direction from doctors and other health care providers. I have CKD (Stage 5) and I am striving really hard to get a handle on things. Trying to wrap my mind around what's going on and the changes I have made. The MAJOR changes I have made. Sometimes, it seems as if my changes are in vain (lol)...but I keep striving. My last reading was in December 2015 (Stage 5 GFR less than 15ml/min). I don't know if this means dialysis coming up next, or what. I'm trying to avoid it... I have been eating much better... I eat NO fast foods at all, foods with very little or not potassium, and having such a hard time trying to find out what foods have phosphorous... And to top all of this off, I'm a type 2 diabetic which couples this situation of CKD. I'm just wanting answers and help from a community of individuals who I believe are actual going through some of the same challenges as I, and whereas the doctors aren't being specific on how to mange this situation, I'm reaching out for help. Is it possible that I regain a better function of my kidneys without going on dialysis at this point...? Thanks everyone...!!!

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                  • #10
                    @StrugglinDiabetic I sent you an message with some info. I hope it helps.

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                    • #11
                      Thank you..., I wasn't sure how to access the message. I click on the new message box but it just took me to your profile... Sorry, sortta new to the forum thingy...

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                      • #12
                        Originally posted by StrugglinDiabetic View Post
                        Thank you..., I wasn't sure how to access the message. I click on the new message box but it just took me to your profile... Sorry, sortta new to the forum thingy...
                        No apology necessary, glad you found us! Just practice a little and you will be great, good luck in the future!

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                        • #13
                          Originally posted by StrugglinDiabetic View Post
                          Thank you..., I wasn't sure how to access the message. I click on the new message box but it just took me to your profile... Sorry, sortta new to the forum thingy...
                          Go to your own profile and you will see you have messages. Click on the messages.

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                          • #14
                            Hi everyone, my name is Thuy and I'm currently a senior at the University of California, Davis. As a senior, I have to do a project and I chose Kidney Disease and Dialysis treatments. I'm working towards a solution that will hopefully help dialysis patients have a better experience with the treatment (less pain/discomfort), but to get there I have to gather information on how patients feel about the treatment. You do not need to fill out any information about yourself; it is completely anonymous! There are 1 of 3 surveys you can take depending on if you receive dialysis at home or in the hospital, or if you administer dialysis. Please help me help others by doing the survey! Thank you very much!

                            For caretakers:
                            https://docs.google.com/forms/d/1HpM...?usp=send_form

                            For home users:
                            https://docs.google.com/forms/d/1p-Z...?usp=send_form

                            For hospital patients:
                            https://docs.google.com/forms/d/1VQv...?usp=send_form

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