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  • IHaveFaith
    replied
    Originally posted by JSMaxwell View Post
    Hi, I have been told that I have CKD, haven't seen the Nephrologist yet, but have an appt. on Sept 5. My GFR on my last blood test was 50.1, is that something to be really worried about?? I have been told, a couple years ago, that I was pre-diabetic, but I have lost 38 pounds since then so I am not sure if that is a factor any longer, my blood pressure is high, this morning it was 185/80.
    Hello and welcome,

    Since you have an appt in the near future with your nephrologist, you have time to prepare and that is a good thing! Before we get started on the GFR, let's begin with the pre-diabetic and BP, first.

    These conditions can lead to CKD. It's easiest for me to assist you in preparing for your appointment by understanding what you know about your condition or conditions. The most important relationships for you to develop, are with the doctors who will be caring for you and starting out on the right path can make all the difference.

    Tell me how knowledgeable you feel you are about BP and diabetes? The weight loss is good, are you treating your BP and has your doctor placed you on any type of diet to try and prevent the onset of diabetes and/or lower your BP through diet, exercise, any of those instructions provided by your healthcare team yet?

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  • JSMaxwell
    replied
    Hi, I have been told that I have CKD, haven't seen the Nephrologist yet, but have an appt. on Sept 5. My GFR on my last blood test was 50.1, is that something to be really worried about?? I have been told, a couple years ago, that I was pre-diabetic, but I have lost 38 pounds since then so I am not sure if that is a factor any longer, my blood pressure is high, this morning it was 185/80.

    Leave a comment:


  • AQUAMAN
    replied
    Dear greenstar, i know a fellow that is 82 with many health problems. I asked him."how do you do it?" he answered that he takes one day at a time. Got to keep moving. Life is short and none of us know when the whistle will blow for us! So just keep on trucking and stay off the ice!!

    Leave a comment:


  • AQUAMAN
    replied
    dear greenstar. i am new also. gfr is how much urine you put out. a 60 or better would be very good although top would be 100. usually they put you on dialysis at 10 gfr. what may help may be a low protein diet as long as you are not yet on dialysis. that can slow down the progression of kidney disease a couple of years. best book i have read on it is "kidney's patient's book by timothy p. ahlstrom" once on dialysis, you need protein as dialysis leaches protein from your body. hope this is informative for you and the best be with you.... aquaman

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  • greenstar
    replied
    Re: new here

    Thank you so much. It feels better just to see some else that is going thru this maze. I also am very anemic, have a liver transplant. It complicates things.

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  • janicejanice
    replied
    Re: new here

    ...especially to greenstar: Don't feel alone in your reaction to the diagnosis. It has been three years for me. My latest GFR is 26, and I have been able to maintain that level of function for three years, due in part to diet restrictions. It took me at least two years to go through a real grieving process over this diagnosis. Of course I saw my future as darkly as humanly possible. The fact is that I still feel great most of the time and my nephrologist says I look great as well! I'm in my 60s and there is a very good possibility that dialysis will be necessary for me at some point. I've already done my research and decided on my choice of modality--peritoneal dialysis at home with the nocturnal cycler, which allows for the most "normal" lifestyle. Don't let depression and fear keep you from learning everything you possibly can about CKD. I recommend that anyone newly diagnosed contact the American Association of Kidney Patients (AAKP.org). They are a great organization. One of their offerings is a pocket nutrition guide. So handy for determining the mineral content of just about every food and drink there is. Hang in there and remember you're not in this alone.

    Leave a comment:


  • M3Riddler
    replied
    Re: new here

    Originally posted by greenstar View Post
    I am new to all this too. I am still figuring out what a GFR is much less what mine is. i do know that my kidneys are at 15%. I am told that dialysis is my future. I am not sure that i am eligible for a transplant due to my other issues. And I have no idea how to slow this down. I keep getting infections and that does a number on my kidneys. I am ready to cry all the time.. ugh! How does one cope and deal with this stuff? I have dealt with alot of health issues, but this is so overwhelming to me. Thanks for listening.

    greenstar,

    This is the time your nephrologist should be going over the different dialysis modality type options with you. Many wait until your GFR is too low and you have to start dialysis immediately and they put you in-center. This is the time where they should explain each modality to you with the benefits/cons of each type. The decision on the type of dialysis should be an educated decision based on what best fits your lifestyle. If your nephrologist has not yet done so, I would ask. And dont accept the answer, "we will worry about that when the time comes"

    There are many preparations you must do such as getting worked up for a fistula if you choose hemo, home or in center. Also, with PD, it takes time for the cath to heal. A fistula takes approx 3-6 months to mature before they can use it. This is why you should be worked up before.

    Try to learn as much as you can about your condition. Education is key. You should be part of every decision that is made. Do not leave it up to your medical team to make the decisions for you. Do not be afraid to question your nephrologist. You must advocate for yourself. Remember, you nephrologist has many patients to worry about, so information is powerful. A good nephrologist will accept your questions, even if you are questioning his treatment.

    ///M3Riddler

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  • greenstar
    replied
    Re: new here

    I am new to all this too. I am still figuring out what a GFR is much less what mine is. i do know that my kidneys are at 15%. I am told that dialysis is my future. I am not sure that i am eligible for a transplant due to my other issues. And I have no idea how to slow this down. I keep getting infections and that does a number on my kidneys. I am ready to cry all the time.. ugh! How does one cope and deal with this stuff? I have dealt with alot of health issues, but this is so overwhelming to me. Thanks for listening.

    Leave a comment:


  • honeybee18
    started a topic new here

    new here

    I was diagnosed last October. My GFR was 23 at the time. I was able to get all the way up to a 53. Last month a 43. Yesterday, I'm at a 41. During this time I was getting better my bp was in the 200s over 100s, so we worked on that, finding the right meds. Now its under control. I went in yesterday thinking I was gonna get a vacation from the dr.s for at least a month or maybe more. Nope, three weeks, after the blood tests are taken, and if the GFR is lower we will check my liver and for Lupus, again. I am usually very positive and optimistic about everything, and my beliefs are all I need, but, I am so frustrated today I needed to get it out to others who understand the way things go. I know I'm doing good, so far, but, frustrated none the less. I will be reading other's stories and posts. I'm glad to have found this site..
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