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  • My Struggle and My Life

    I am a 36 year old and I was born with a congenital defect in both of my kidneys. My ureters are smashed and on the side of my kidneys instead at the bottom dumping into the bladder. For years they could not figure out my severe back pain and my stomach would puff up. I was able to first just get stent placements every so often and keep going on with my life! But then about a year ago I took a step to have a procedure to correct the right kidney first. I knew going in that it may make it worse or it may work. So three weeks before that I was in the hospital I contracted MRSA from the stent that was placed. So I ended up quarantined and I got really sick to the point I could not get out of bed. Then I decided after being with the same urologist for ten years that maybe I needed to shake things up a bit. I went to JHU they are suppose to be the top I was seen by urology and a nephrologist. I was told eventually that my body was rejecting the stents and I had a major infection. They gave me a nephrostomy and a few days later they pulled the stent out. And when they did that it shut my nephrostomy tube down. So I had to go to the hospital and when we arrived urine thick like butter started coming out. It was all the infection that the stent masked while it was in. Now this is where my kidneys get tricky test like the Whitaker test always come back normal it is not that I dont have function it is that they do not function properly. So once again a doctor thought I was cured. That is the part that has frustrated me for years. Because every time I trusted a doctor the fluid started backing up and at one point I was carrying around 40 pds of fluid. So I knew that I would have to travel back to my 10 year doctor, so I called him and he said we would go with the Nephrostomy. 0205 they told me the nephrostomy was going to be with me for life. That my right kidney would never bounce back and that this is what I have to deal with. I was upset but I am blessed to not be on dialysis so I always keep that at the front of my mind at all times. But I struggle with pain and some days I have a hard time getting up when it is cold! I have small children and I have to keep fighting I would like to talk to people that have KD. Sometimes I feel like family does not understand and they worry alot! GOD BLESS everyone!

  • #2
    Re: My Struggle and My Life

    Hi cassie i read your post you put im sorry i also have kidney disease so i relate to you on the subject how are you today i know it feels like family doesnt see what we go through i feel the same as you write back hope your well tammy

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    • #3
      Re: My Struggle and My Life

      Welcome, Charbie. I hope that your doctors now have everything under control. Do you expect that you will eventually have to do dialysis? It doesn't really matter. All people with kidney disease need support and can get it here. I am sorry you are in pain all the time. That must really be problematic, especially with small children. Keep coming back for support, to ask questions, or just to vent. We are here for you.
      To the stars through difficulty!

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      • #4
        Re: My Struggle and My Life

        Welcome charbie28, I understand about the back pain. It indeed can get intense. I am at Stage 3 CKD pre-dialysis and don't know yet why I have CKD. I also have bladder issues and heart issues on top of all this. It really sucks when you are in severe pain and there is not an OTC you can take, although chefnancy says that there is pain management drugs I could get if I want too! I understand about the family thing too. Consider this forum as an extended family to talk about your concerns. I am on this forum at least once a day to chat with my friends and talk about what's going on with me and to learn lots of information. One of the many things I like about this forum is that I can talk about stuff and know that I am not burdening my family with the daily aches and pains of CKD. We are all here for you. again welcome! How much snow did Baltimore get today? So far Woodbridge, VA is at 4 inches. Chefnancy, how much snow are you all expected to get?

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        • #5
          Re: My Struggle and My Life

          For once, the snow missed us. Usually we are the ones with all the snow. However, it is bitterly cold and expected to stay that way for several days.
          To the stars through difficulty!

          Comment


          • #6
            Re: My Struggle and My Life

            I'm new to the forum. I found out that I was in Stage 4 kidney insufficiency last April, 2008, and at that time, my GFR was 20%, and creatinine was 2.6. When the nurse told me it was stage 4, I had NEVER heard that term before describing my kidney condition. I had seen this nephrologist for seven years. I walked out of that office in shock, got to my car, and began sobbing. I thought that I didn't have long to live. I went back in the office and said I couldn't go home this way. I am a nurse, and yet, the thought never occurred to me that my kidney disease was that serious. I was diagnosed when I was 25 as having a deformed right kidney, 1/3 functioning. Either I was born that way, or because of urinary reflux, diagnosed at 25, undiagnosed urine infections and kidney infections damaged that right kidney. At age 29, I had surgery to correct the reflux problem. I never dreamed that my kidneys would fail me know. I'm scared to death of dialysis. I had my creatinine done last month, and it was 2.8. GFR is at 17%. In 2006, my creatinine was 2.4, with GFR at 21%. How long would it be approximately until I am faced with dialysis? I asked my nephrologist about a kidney transplant, and he said I didn't need one this year, jokingly. Yet, I thought, who would give me a kidney? Maybe I'm in the wrong forum. Are all of you on dialysis? Do you remember what it was like to have a creatinine of 2.8, GFR of 17%? Bonnie

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            • #7
              Re: My Struggle and My Life

              Welcome, Bonnie. I'm sorry to hear of you having the shock of learning your kidney disease had advanced to stage 4. On this forum there are caretakers, those on dialysis, and those of us that are considered pre-dialysis who are mostly in stages 3 and 4.

              My first suggestion to you would be to lower your protein intake. I will give you a bit of my history. I was in stage 4 then for no apparent reason last September or so my function dropped to 15. I purchased a book titled "Coping With Kidney Disease--A 12-step Program to Help You Avoid Dialysis" by Mackenzie Walser, M.D. who had been a nephrologist/researcher at John Hopkins for somewhere near 40 years. During that time he studied the effects of a very low protein diet on his kidney patients and found success avoiding dialysis in many patients who were willing to commit to his dietary plan.

              It may be too difficult for some to stick with, but with dialysis facing me, I was willing to make the sacrifices to follow it. It consists of only 20 grams of protein per day (which in time would cause malnutrition) but it is supplemented with only the essential amino acids which have to be ordered from Calwood Nutritionals. Dr. Walser asked this company to make the EAA because there was no other source. Most amino acids on the market also have the non-essential acids and there is some question about their being good for the kidneys. The amino acids fulfill the protein requirements without having the same effects on the kidneys like eating high-grade proteins/meat. They even raise the serum albumin even though you aren't eating any meat.

              Some suggest dropping to 40 grams of protein without supplements but from what I've been reading of studies on these two programs there is better success with the 20 gram supplemented diet. It's a choice you will need to make if you want to hold off dialysis as long as possible. Some, and I certainly understand, don't want to give up meat, and that is okay for them.

              What Walser's diet did for me was raise my GFR from 15 to 26 and lower my creatinine from 3.1 to 2.0! And the difference in how I feel is amazing! I feel good! Also, my total cholesterol went to 88 and LDL 26 which makes my heart doc happy! LOL!!

              I'm sure others will join in here and give their suggstions and what works for them but that is what I've done and am so glad I did! Good luck to you in managing your CKD and holding off dialysis for as long as possible. Blessings!

              Oh, if you have any questions you can ask here, pm me or anyone else. We will be glad to offer any support we can!
              My Writings

              Comment


              • #8
                Re: My Struggle and My Life

                Originally posted by Bonnie Connolly View Post
                I'm new to the forum. I found out that I was in Stage 4 kidney insufficiency last April, 2008, and at that time, my GFR was 20%, and creatinine was 2.6. When the nurse told me it was stage 4, I had NEVER heard that term before describing my kidney condition. I had seen this nephrologist for seven years. I walked out of that office in shock, got to my car, and began sobbing. I thought that I didn't have long to live. I went back in the office and said I couldn't go home this way. I am a nurse, and yet, the thought never occurred to me that my kidney disease was that serious. I was diagnosed when I was 25 as having a deformed right kidney, 1/3 functioning. Either I was born that way, or because of urinary reflux, diagnosed at 25, undiagnosed urine infections and kidney infections damaged that right kidney. At age 29, I had surgery to correct the reflux problem. I never dreamed that my kidneys would fail me know. I'm scared to death of dialysis. I had my creatinine done last month, and it was 2.8. GFR is at 17%. In 2006, my creatinine was 2.4, with GFR at 21%. How long would it be approximately until I am faced with dialysis? I asked my nephrologist about a kidney transplant, and he said I didn't need one this year, jokingly. Yet, I thought, who would give me a kidney? Maybe I'm in the wrong forum. Are all of you on dialysis? Do you remember what it was like to have a creatinine of 2.8, GFR of 17%? Bonnie
                Hi Bonnie,

                Welcome to the forum. You are not alone. It was extremely fdifficult for me to accept when I was told that I had CKD. My situation was worse. I was not informed during the 7-day stay in the hospital. I found out when I had my first follow-up check up with my renal doctor after a month later. I did not know what CKD was (due the the language barrier). When I was trying to find out what it was and more info about CKD, I found this forum. I am doing much better now and am still working full-time (I am stage 4). Like everyone said, this is a wonderful place that you will get support and answers.

                pal

                Comment


                • #9
                  Re: My Struggle and My Life

                  Welcome, Bonnie. The period right after diagnosis is kind of overwhelming for everyone. We are here to support you. We mostly have kidney disease ourselves or are caring for someone who does, so we know how it feels. Cassie was right to guide you to a low protein diet. If you do not want to go for Walser's diet, ask for a consultation with a renal dietitian to be put on a regular renal diet which is low (just not quite as low as Walser) in protein, potassium, phosphorous and sodium. This diet will help to preserve what kidney function you have left. Also, dialysis is not something to be scared of. It will be your lifeline. I always advise new people to go to www.kidneyschool.org. They have a lot of accurate information on kidney disease and its treatment, including the diet. The information is presented in modules so you can learn at your own pace. Knowledge is your best weapon in managing your disease and you WILL have to manage it. Keep coming back and asking questions and soon it will not be quite as overwhelming to you.
                  As for who can donate a kidney for you, you will be surprised how many of your friends and relatives will agree to be tested if you let your story be known. If you have no living donor then you can join the list for a deceased donor (cadaver) kidney.
                  To the stars through difficulty!

                  Comment


                  • #10
                    Re: My Struggle and My Life

                    Thank you Cassie, I didn't know it was possible to lower your creatinine level. I'm so impressed. I have never been told to lower my protein intake, and I have never thought of giving up meat. But when you said that your creatinine level went from 3 to 2, I thought maybe it's worth a try. I don't know if I've got the willpower to stop eating meat, or follow a diet. I'm overweight by about 30 lbs. Can you give me more info on how you stuck with your meal plan? You can email me at bconnolly@lyngblomsten.org Thanks. Bonnie

                    Comment


                    • #11
                      My creatinine just went from 2.3 to 1.8 on it's own. I did not lower my protein intake at all, still ate lots of meat and fish. The kidney doctor said it was just a coincidence that it went down. My left kidney is not producing any urine, my right is doing all the work and is only at 30 percent. My blood pressure is out of control (165/85).l I am having an angioplasty procedure on July 5. They may stent both at that time. My kidney arteries are hardened because of radiation I received to my lymph nodes as post-op treatment for testicular cancer when I was 37 years old in 1989. My doctor at Brigham& Women's in Boston said if I don't stent I am headed for dialysis but if I do I have an 80 percent chance of avoiding it with the stent.
                      The funny thing is I feel absolutely fine. I still teach every day, walk 18 holes when I play golf, and even play in a rock n' roll band. If I have to get dialysis I may be tempted to just check out. .

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