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Doctors suck,

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  • Doctors suck,

    I just went to rheumy who ran tests. I have lupus for 18 yrs. I was the one to call to ask about the results. They never bothered to call. My eGFR IS 52 which is stage 3 ckd. I checked Records from the past and found I have had bad GFRs since 2007 and not one dr has ever said anything to me about it!, it was 47 in 2007. I have complained continuously about my kidneys and problems with urination the whole five years. Nothing, I have no insurance so when I need dialysis I can't get it. For at least 5 years I could have moderated my diet at least to try to reserve what is left. They won't refer to a nephrologist. They even said I can eat whatever I want. I am AMAZED anyone survives anything with such horrible drs. Btw I am a nurse and the doctors I have gone to included Harvard and Yale grads. I feel very angry and am confused why there is no urgency.

  • #2

    Anytime you get any testing, boodwork or otherwise, in my opinion, we need to take it upon ourselves to retrieve the results. We have to advocate for ourselves. They have many patients and you have yourself. No one is going to care as much about you as yourself. Unfortunately, it is rare for docs to call with results. Usually you end up finding them out as you did. This is why we as pre dialysis/dialysis or whatever issue we have, have to follow up and learn as much as we can. Dont wait for the docs to teach you as you will be waiting a long time. If your medical team is not up to standards, you may want to consider another doc. If they arent helping you now, chances are, they will not be much better in the future....

    This is just my 2 cents!!!

    PD - 13 Years
    3 Transplants
    In-Center Hemo - 6 Months
    NxStage - Since April - 06
    Facebook: Dialysis Discussion Uncensored



    • #3
      back in 2000 I had labs and my gfr was in the lower 80's; nobody said anything to me and I thought it not to be a big deal even tho I did take notice that it was kinda low. My psyc did labs on me at least twice a year because I was taking lithium. In all that time did they ever say anything to me about my gfr going down. Heck no. They kept on giving me lithium and me not keeping up with the labs they were doing on me, if they were they did not care. Last feb my gfr was down to 53 done by my pcp. they called me and told me I had stage 3 ckd and had to see a neph. I had to address it to my psyc dr even tho 3 month earlier to this labs they did labs on me. They are specif to check kidney function because lithium is so hard on the kidneys. Yeah... I am a little mad about it. I could of came of lithium a long time ago and restored allot of function myself. Then the psyc dr had the nerve to ask me if I knew what the cause of it was. The neph said it was lithium but now because of my bp so wacked out it makes it even worse and will keep going down if I don't watch my bp even tho that I am now off lithium. I understand your anger. I got allot of it myself. 1 month after coming off lithium my gfr went up to 55 but the dr said that it will usually boost up after the drug is stopped but it probably wont come up anymore, but I can hope and pray with me watching what I eat and stuff it will tho. good luck to you



      • #4
        I just posted today about this doc failure to catch and advise, and it is failure. I have one kidney, they just said go live your life. How they could let me drop from GFR 58 to 37 in 12 months is shocking to me. And I see them every 6 months for blood test and chest xray post cancer.
        I can't find anyone who can give a range to raise GFR (through all possible efforts) Can it ever go up 2-10+ points?> I

        read at one kidney site than it can't go up at all. I am now at the bottom for Stage 3, when I was at the top just a year ago, maybe could have stayed there with any attention whatsoever!, Now the same (VA -UCSF teaching hospital- I see new 'baby docs' each time) These Urology Docs (surgeons usually) wanted to give me contrast dye for annual CT scan.. I refused and just about ran out after MD Radiologist came in to advise it WOULD damage kidneys, no matter how much fluids before and after. I will not risk dropping to stage 4 to look for cancer they say is probably never going to be there..just the AMA standard follow ups. So I take a risk.. and have to fight them.


        • #5
          I was in Stage 5 with Creatnine of 17.5 and a BUN of 173, and the emergency room sent me home with numb feet and constant vomitting. 1 month later I was on dialysis in a different emergency room and on my way to 14 days in the hospital and the transplant list. I had no insurance and no full time employment, but when you find the right physician everything will fall in to place. It is more important to know your own body and what is going on and work with a physician to keep yourself a optimum health. I am on dialysis 3 days per week, I have great energy, I eat awesome food, I do any and everything I could before dialysis. It is all up to you in the long run. The hospital was very uninformed as to my condition and what it required, if I followed their instruction I would be much worse off today. Nurses asked me daily, each shift, about kidney disease and what I was feeling and my symptoms because they had no idea. Plus, many of the symptoms of actual kidney disease are extremely subtle and parallel other organ symptoms. The best things you can do is cut sodium from your diet and drink plenty of water, and don't over fill your system and make your kidneys try and process 10 times as much as your body needs for functionality and success. First and foremost, stay positive.