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Just found out I've had CKD for 6 years

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  • Just found out I've had CKD for 6 years

    It may seem strange, but I was diagnosed with CKD in July of 2001 but my drs. never described it to me that way. I was always told just that my kidney function was abnormal, drink more water and that I shouldn't take aspirin or Ibuprophen. I had been seeing my primary care dr. for physicals (about once every 2 years) and my gastroenterologist 2 to 3 times a year for Crohn's Disease. I was diagnosed with osteoporosis in 2002 and was put on Fosamax. I also was taking Pensasa for the Crohn's disease. This past May I was hospitalized in total renal failure. Drs think is was because of an allergic reaction to the Pentasa and have since stopped the Pentasa and Fosamax. I now find out that since 2001, my creatinine levels bounce between 1.6 and 2.6 until the hospitalization in May where it went to 7.2. It seems to have leveled out between 3.0 and 3.6 over the last month. I am very angry with both of my drs. at this point, because I was naive enough to think that they would have told me if there was anything I should be concerned about. My dr. didn't even mention it to me during physicals and apparently wasn't looking at the blood work the GE was doing, because there were more serious problems as early as 2004. My dr. said there really wasn't anything that could be done until I got to this level. My GFR now bounces between 17 and 14, or stage 3 and 4. I feel that I could have been doing something with my diet perhaps, or been put on and ACE inhibitor to help protect the kidneys and slow the progression. I am 53 years old and my husband and I had to cancel our 2nd honeymoon to Tahiti because of the hospitalization and now don't know if we'll ever get to go. My diet over the last 6 years has been high protein, low carb (for weight loss), high fiber, whole grain, nuts etc, (for lowering cholesterol) and high dairy (for osteoporosis), all very bad for failing kidneys. Am I being too hard on my doctors?
    It's not about waiting for the storm to pass, but learning to dance in the rain.

  • #2
    You are indeed right in that the MDs should have kept you informed on the progression of your kidney disease. By knowing what you were dealing with you could have modified your diet to keep off of dialysis as long as possible. I was actually told by one urologist that there was no sign of kidney disease and to live my life as I wished. Guess what Dr. Felker, I've had a transplant!. I never used the time I had learning about what to expect or how to prolong the function I had. If I may make a suggestion now, use the your free time learning about dialysis, transplant, and check out all the available sites to learn how others have made it or are making it through the different stages before and during dialysis. Definitely ask any questions that you have. This is all necessary to be an informed member of your treatment team. Now that you do know get to it!
    "Within every adversity lies a slumbering possibility"
    Linda
    Tx: 7/28/2005
    St. Louis University Hospital

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    • #3
      Thank you Linda, that is exactly what I'm doing. I've practically memorized the National Kidney Foundation web site, I've requested that my drs. fax my lab tests to me each time, not just their interpretation of what they think I need to know, but the exact report from the lab. I feel like I'm playing "catch up" here. It's just confusing sometimes sorting out all the different information, because sometimes there are contradictions. But with the help of forums like this, I know I'll get it all figured out. God bless you all out here.
      It's not about waiting for the storm to pass, but learning to dance in the rain.

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      • #4
        You are most welcome and please feel free to contact me anytime and I will be more than glad to help you play catch up. So much info can sometimes be a problem and it certainly can be daunting thinking about all you must learn. I stayed pretty much with the basics and even that can be frightening. I spent so much time learning about dialysis that I neglected to learn about transplants and found myself a little lost after mine. Now I speak to others and pay particularly close attention to the new things they are finding out. Please, contact if you need any help.

        transkid05@charter.net
        "Within every adversity lies a slumbering possibility"
        Linda
        Tx: 7/28/2005
        St. Louis University Hospital

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        • #5
          I know exactly how you feel, missedtheboat. I've had kidney problems practically my whole life and never even knew it. I'd been to doctors here and there, but I never found out about my kidney problems or my severe hypertension (at one point my BP was 220/140) until it was almost too late. I didn't find out until I got really sick for no apparent reason and ended up in the ER. When the doctor came in with my blood, urine, and CT scan results, he actually asked me "So, how long have you only had one working kidney?" I literally didn't know what to say. It turned out that only one of my kidneys had developed, and it apparently was never working fully. I've probably been at least in stage 2 since I was born (I'm 25). I ended up getting a colon infection from the uremic poisoning, and that's what made me go to the hospital. My life was literally saved (barely) by a colon infection. It's just amazing how one minute I was riding my bicycle across the city of Indianapolis, and then a week and a half later, I was in critical condition, hooked to a dialysis machine, and literally fighting for my life. I just thank God that I won that fight.

          Adam
          When my emotions start to cramp, the Lord turns off my UF and gives me some saline.

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          • #6
            I know how you feel. One of my kidneys was apparently destroyed by an e coli infection which I had in my twenties and was lucky to survive. I am now approaching sixty and at stage 4, but no doctor bothered to tell me that I only had one working kidney until about 2 years ago. The doctors had to have known because I have had many tests which would have told them about the problem. If I had known, I believe I would have sought to follow a more kidney-friendly lifestyle (better diet, avoiding certain medications, etc.) so that I wouldn't be as sick as I am now. For a while this made me very angry, but then I decided that the anger was just making me sicker and that I needed to let it go so that I can concentrate on doing everything I can to live life to the fullest given my circumstances. I now have different doctors who keep me informed, I am doing everything I can to maintain my current level of health, and I have decided to let the past be in the past.
            To the stars through difficulty!

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            • #7
              Thanks Adam and Nancy. That's good advice Nancy. You are absolutely right about letting go and moving on. I still have a lot of life to live and I'm determined to make the most of it. I've sent for a book that someone in this forum mentioned, "12 Step Treatment Program to Help You Avoid Dialysis" as well as "Renal Lifestyles Manual". I really love my nephrologist. She gives me all the time I need and answers all my questions. My next step is to find gastroenterologist I can trust and a new primary care dr. I always liked my primary, been with him for 30 years, but I think he got too lackadaisical with my care because I always look good. After having Crohn's disease for 32 years, I've learned to just push through the tired and the hurting and keep on going. So far I've refused to let my illnesses dictate my life and I'm not about to start now. My PCP wants me to give him another chance, but I'm not sure I can. I'm afraid that every time he tells me I'm fine, I'll not trust it, even if I am. I think he's just too oldfashioned and not keeping up with the current trends. Well, we'll see...
              It's not about waiting for the storm to pass, but learning to dance in the rain.

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              • #8
                Glad it helped. Hang in there and don't be afraid to ditch your PCP if you feel that you can no longer trust him.
                To the stars through difficulty!

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                • #9
                  I had same issue. Found out eccidentally when I picked up my file to chamge doctors. Only told to drink more water. This is irresponsible and lost precious time to change diet. Im on it now, but got a very late start like you. I am upset.

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