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I'm newly diagnosed.

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  • I'm newly diagnosed.

    My name is Trish. I have just been diagnosed with Fibrillary glomerulonephritis. My neph said the only "treatment" is chemo drugs and steroids. And then, only a 1/5 chance that will work. My kindneys are functioning at 25% right now. But, rapidly failing.

    I am afriad, and feel very alone. I know there are worse things, but I feel I have been giving a death sentance. Ok, maybe that is extreme. But, this is all new to me.

    I really would like to find out if anyone else has this kidney issue, or has done this treatment. Or just get some support!



  • #2
    Hi there!

    I do not have the same diagnosis as you, but I have a similar story. My kidneys were failing due to systemic lupus, and the options were steroids and chemo. I tried both. I got about three more years out of them, but eventually they just gave out and became too scarred.

    When I heard that dialysis was my next option, I was nervous too. It seemed unreal.

    Quite honestly, I did not enjoy hemodialysis. As a young and independant person who values her privacy, I found that peritoneal dialysis was better for my lifestyle. I do my dialysis on the cycler at night, so it doesn't interfere with my daily schedule. Also, I prefer to not visit the hemo dialysis centers. This is different for everyone - I'm just sharing my opinion and point of view.

    By doing peritoneal dialysis, I felt much more in control of my care. Your doctors will help you figure out what is right for you if the time comes for dialysis.

    The chemo I received did not make me very sick. I did not lose my hair. I did not lose my appetite. I was tired the day of treatments, but felt normal the next day. Hopefully your experience will be similar.

    Best of luck to you. Take care.


    • #3
      Feeling alone

      Trish, I am very sorry as I have been where you are right now. There probably is not another person in you state with the same disease and thus there is no personal face with which to communicate. If you are like most of us, you look very healthy and so your closest friends don't know. If you tell them then the question is what?
      Don't even try to explain as it defies explanation to those with out it. A simple "I'm having kidney problems" and let it go.
      I was at 20% and now I am dialysis. Took for me about 12 months to go from 20 to 17 and then I contacted a case of e-coli and went from 17 to 13 in four weeks. I am now on HD and I feel better than I have felt in about 5 years because this is much better than 20% .
      The only problem I have with HD is the diet and the time. On PD both those are mitigated. But I have abdominal problems so HD it is.
      The whoe situation, membranous and HD are mind games. You can be as well as you want. The key is to eat right, take the proper meds as instructed, exercise at least 5 hours per week. not weight lifting but cardio exercise. This will make you feel better, and it will prepare you for a wonderful chance at a transplant. Healthy people, less kidneys, do better at transplants.

      May God have mercy on us all


      Idiopathic globular membranous nephritis 1999-2006
      Feb 2006 Dx about 1-2 yrs before dialysis. Dialysis start 6-2006
      Chest Cath 4 mos in center hemo dialysis
      Fistula, button holes, self stick days 07-09 in center hemo
      Graft nocturnal hemo 4Q09 to present


      • #4
        hang in there!

        I received my diagnosis about a month ago, and I understand your feeling about the death sentence. My first reaction was thinking to myself... "This is what's going to kill me." I had to quit my job because of the hours I was working. I had to change my diet. I had to rethink having children. I was depressed for a month, and still have days when I'm angry this is happening to me.

        But what this forum does for me is remind me that people are living with this disease. I have to believe that no matter what my kidneys do, there are options to keep going. I'm scared of dialysis, but I will deal with it. I'm scared about transplant surgery, but I will pull through. People on this website have been very supportive and knowledgeable, so take advantage of them.

        Good luck, and know that there are people out there feeling the same way you are.


        • #5
          Evening all,

          Ask any dialysis or transplant patient and they will tell you that hearing the kidney disease diagnosis was one of the most frightening moments in their lives. Whether prepared by your doctor or hearing the diagnosis suddenly makes no difference. My husband actually cried when we realized dialysis was quickly approaching though we had been told many years ago that it was a possibility. My family is plagued by kidney disease, each diagnosis different. After the shock wore off I decided that I would triumph over what was happening and live. I chose life because I have so much to live for. The only way I will loose this battle if I allow it to take over and that will not happen without a good fight. I was on dialysis for 2.5 years and was transplanted 7/28/05. The transplant hasn't been a bed of roses and I may have progressed a little slow but now I am back and celebrating the birth of my first granddaughter and have so many things to look forward to. My transplant is not a cure but it certainly has bought me valuable time and I plan to live every moment to it's fullest. You are all so much stronger than you feel at the moment. Arm yourselves with knowledge so that you can be an active member of the treatment team. Without the needed knowledge, you can't make decisions you will be called upon to make. I advocate for patient knowledge in this area, SE Missouri and let me tell you, the people who feel best, accomplish most and survive longest are people who take learning seriously. Joint support groups either on line or in your home area. Ask questions from your dialysis team and demand answers. Keep an upbeat attitude because once the disease gets you in it's clutches you tend to give up. Never, never let anyone tell you that you are in store for a dismal life because that simply does not have to be. My work schedule was made compatible with my dialysis schedule and while hard, it is possible to continue to work fulltime. I did drop hours after about 1.5 years on dialysis due to tiredness, not illness. Dialysis and transplant are necessary to live and you might as well admit that now and adjust accordingly. Make the best of an otherwise miserable inconvience and tell yourself that this is what I must do to live. I didn't consider dialysis 2 objectionable and frankly it gave me a chance to catch a nap 3 times a week. It's going to be OK and while that seems to be all but impossible at this time, it will come to pass and hopefully you will also consider it an inconvience. I was able to camp, fish, and travel. That is not impossible and adjustments will need to be made. Your life will be whatever you make of it and a positive attitude will take you far. Look to the future and the present will take care of itself.
          "Within every adversity lies a slumbering possibility"
          Tx: 7/28/2005
          St. Louis University Hospital