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MPGN type 2? is there others out there?

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  • MPGN type 2? is there others out there?

    Hello my name is chelsi and I'm 19 years old. I'm new to this forum and I'm pleased to see how many people are apart of it. I was recently diagnosed with mpgn type 2. I guess it's really rare. The tests my doctors run on me have never been heard of by most. I would love to hear from someone who has the same condition as me. But as far as my overall health, my kidneys are functioning at 100 percent which amazes my doctor since I Lois about 4400 mg of protein in my urine a day when I should b loosing about 150 mg a day. Right now they have me on benezapril to try and slow the rate of the protein leaking. A side effect of the protein leaking is I'm always tired. I never feel 100 percent. My doctors say I'm malnourished because of how much my body had to work to make up for the protein loss. I'm also constantly nauseated which isn't believed to be a side effect of my condition but something else... Great just what I need. I couldn't just be a normal healthy young woman. Instead I got the ****ty end of the stick. Anyone else feel the same?

  • #2
    Re: MPGN type 2? is there others out there?

    hello my name is Diana, I have a m p g n as well . I'm on my droid forgive the typos . I'm 42 and I was diagnosed with 19. I was very anemic and on 4 medications for 5 years . the 1 thing I wish I would've done sooner is stop eating protein . I am on a low protein low sodium low potassium diet now. my kidney function has dropped to the point that I'm in stage for failure.but I look and feel fine .I scuba dive I go to the gym 3 days a week . I've been holding the doctors of the transplants for 2 years .I think I may stay at this level for a good while .I'm not looking forward to transplant that's why I'm very serious about the diet now .it seems to help . I stop having periods at 35 .I didn't realize that the kidneys shut down my reproductive system.help you plan to have children do it early .I never did ,it was too late . Other than that, I plan to live as long as anyone else and have a normal life! don't be afraid just take your precautions early. low protein low sodium low potassium . best of luck to you ! let's stay in touch .

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    • #3
      MPGN type 1

      Hi - my name is Stefan. I am 70 years old. I've had MPGN typ 1 for ten(10) years now. I also have Cryoglobulinemia Type III(Mixed cryoglobulinemia with chronic hepatitis C infection), and Nephrotic Syndrome for the same amount of time. I've been on the UNOS Kidney Transplant List for 4 1/2 years now through the Mayo Clinic. I've been on hemodialysis for 2 1/2 years. My GFR is 7%. I've had all the bad symptoms of kidney disease in spades.
      My advice to anyone with this disease is:
      1. see and communicate with your doctors regularly(get, read, & understand your blood lab report).
      2. follow your dieticians directions religously.
      3. follow and take your medications explicitly.
      4. get plenty of sleep.
      5. get plenty of excercise.
      6. keep a positive attitude.
      These steps have worked for me. I do not feel normal, but these steps will minimize your feeling like crap.
      Good luck, and GOD bless you.....
      Last edited by bazomxaz3; 12-20-2012, 01:12 AM.

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      • #4
        Hi Chelsi. I also have MPGN type 2. I was diagnosed when I was pregnant at the age of 25. Just remember to listen to your doctors and do all that you can to maintain the kidney function you have.

        I had to go on dialysis four years after I was diagnosed. I was on dialysis for three short months before I received a kidney from my sister. That was almost seven years ago. My kidney functioned well for about six years then rapidly declined. Unfortunately the docs saw recurrent MPGN in the new kidney only about a week after transplant on the first biopsy. Those years off of dialysis were wonderful!

        I am back on dialysis again now and have been on now for six months. At this point it is very difficult to find a suitable donor due to all of the antibodies I have from the previous transplant and from several blood transfusions.

        It can be a hard life to live but it IS life. I live for the moment every day. Seeing my kids grow up, loving the most wonderful man on earth, and just being happy for the moment. Good luck and health to you. I hope all goes well.

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