My son who is 24 was just diagnosed with Goodpasture's S...

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My son who is 24 was just diagnosed with Goodpasture's Syndrome. He had beed sick for about 2 weeks with flu or virus like symtoms. When we got him to the Dr. his kidney's had already failed. He went in the hospital on a Tuesday and on Wednesday they did a kidney biopsy and on Thursday they had him diagnoised. He was then transported to a bigger Hospital where they began treatment immediately. He was in the hospital for 11 days fighting for his life and is now home. He will continue on dialysis for 3 days a week. Dr. is not sure he will have any kidney function. He will have to be off work 6 months to a year or until they have the disease under control. This has been such a "life changing" event for us. I can not imagine how my son feels. I feel very blessed that my son has a brilliant doctor and I will continue to pray for healing.

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  • Posted

    I was diagnosed with goodpastures 5 years ago to the day 9/11/01. I am 32 years old with 2 daughters that are 8 and five now. The only remaining affects from the disease are high blood pressure and a side-affect from the large amounts of steroids which is a-vascular necrosis. A-vascular necrosis affects the hipps and shoulders,by deteriating the ball and sockets. I had surgery 2 years ago to fix both of my hipps and doing very well for the most part. If you or your son have any questions please feel free to contact me or call.I feel beatting the disease and the side-affects were easier than the emotional highs and lows and the physical changes you will have to endure. Cinncinati,OH *13-7*2-7**0 I wish you and your family best of luck and be strong!

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  • Posted

    Dear Mr. Glaser,

    Thank you for sharing your experience. I have a couple of questions if you don't mind.

    A couple of months ago, I was sick with flu-like symptoms for a couple of weeks and although I went to the doctor, he didn't realize something more serious was going on until I gained 8 pounds in one day. He then realized, I was retaining fluid and immediately sent me to the hospital. I was admitted and the following day a kidney biopsy was taken and by the next day, I was told that I had completely lost the use of both my kidneys. Within a day or two, I was diagnosed with Goodpasture Syndrome. I immediately, began Dialysis and have been doing so since all this started in July. I had 10 Plasmapheresis treatments while in the hospital for 5 weeks to eliminate the antibodies from my body, and I'm also taking steriods and chemo to try to stop new antibodies from producing. I haven't had my first antibodies bloodwork yet, since leaving the hospital, so I don't know if the meds are working. I'm hopeful that if I'm syndrome free for a year, I'll be able to receive a kidney transplant.

    Although while in the hospital, initially I was receiving a very high dosage of 500 mg. of steriods, I now take 40 mg. every other day and my nephrologist believes I'll only be taking it for another couple of months.

    You mentioned that you had side effects from the large amounts of steriods you had taken. Can you tell me the dosage you were taking and for how long you took them?

    Thank you in advance for your help and input.

    Vivian Cavanzo

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  • Posted

    To the lady with the 24 year old son who was just diagnosed with Goodpasture Syndrome,

    I too was just diagnosed a couple of months ago after also having flu-like symptoms for 2 weeks and by the time the renal symptoms showed up (noticed fluid retention - gained 8 pounds in one day), and went to the hospital, I had lost the use of both kidneys. Just like your son, a biopsy was immediatley done and it confirmed the loss kidney function. Spent five weeks in the hospital and received 10 Plasmaphereis treatment along with Dialysis three times a week. I am home now and continue my Dialysis treatments. I'm taking steriods and chemo to get the disease under control. My nephrologists says that if I'm syndrom free for a year or so, I'll be able to receive a kidney transplant. Like for you and your family, this has been a life changing experience. I can say based on my experience is that family is the strogest medicine. Without the neverending support and unconditional love of my husband, parents and sister, I don't know how I would've managed upto now. Your son blessed to have your love and support!

    Keep your spirits positive, it'll help him keep his positive too!

    Please don't hesistate to write back. My e-mail is ****.

    Best Wishes for your son and your family.

    Vivian Cavanzo

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  • Posted

    Vivian,

    Just checking to see how you are doing! I am in hopes that you are doing better and the dease is showing signs of going down. My son developed this about the same time as you did (June 06). I think and pray for you daily! He continues to keep his spirits up and has gotten use to all of the meds and tests. We have been very lucky that he has not been back in the hospital for a while. I think it took some some for his body to get use to all the meds. His Dr. has taken him off of the cytoxin it seems to be killing to much of his good cells and doing something to his bone marrow?. His dease has been going up and down and the last check he was down to like 87 which is the lowest it has been. That was before Dr. took him off the cytoxin so we are hoping the dease is going away and the cytoxin won't be needed. That is terrible stuff! Hope all is well and take care.

    joanne

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