My life with FSGS

[Kbressler]

My first encounter with kidney disease was in October of 1969. A simple urine sample showed 1+ protein in my urine. The family doctor at the time said not to worry it just needed to be watched and that was that. I was drafted into the Army in July of 1970 and still had protein in my urine but the army took me. Upon discharge I went to nursing school at Mount Marty College in Yankton, SD. One day in biology lab we did a Bence Jones test for protein on my urine and it tested 4+ the highest it could be. I was three years into nursing school married with a baby on the way. I went the next week to the doctor a GP and my blood pressure was 130/90. He told me that I was spilling a lot of protein and he felt that it was not affecting my blood pressure so we should “keep an eye” on it. In 1978 I was a new RN working at the Veterans hospital in Kerrville, Texas. My blood pressure was still elevated and the doctor at the VA treated it until 1984 when I had a hypertensive crisis my blood pressure 190/110. I was referred to Dr. Paraic Mulgrew and he biopsies me and found FSGS. I was treated with massive doses of Prednisone to no avail. On April 30, 1987 my brother gave me one of his kidneys. That was 32 years ago today. I am now 69 years old retired and have had a great life my wife and I have raised two great children and have four grand children. My journey has not been easy but not difficult either. I did not have to experience dialysis and for that I am grateful. Both my brother and I are doing well thank you very much. My advice to you is to do everything in moderation no extremes. Forget about the past, live today, and dream of the future.

[MomofRecipient]

Thanks for sharing your inspirational story. My mom had FSGS, but did have to do dialysis and was not healthy enough for a transplant (this was back in 1990). My son now has CKD and just received a live-donor transplant this past November. He's doing well! I wish you, your wife and family good health and happiness.

[SaraEads]

Happy to hear such a good story. Your brother deserves gold stars and all good things!

I also was diagnosed with FSGS in 1980 and have had wonderful results after a transplant from a donor.

[maximina]

Thank you for your inspiring story. My 35 year old son was diagnosed with FSGS at the age of 29. He has had 5 years of treatment, also he had Rituxan and Cytoxan none of the treatments worked for him. His is Primary (Idiopathic/Unknown Cause) at the beginning he was tested for Diabetes, HIV, MS, Lupus, you name it he was tested, they all came back negative, thus it was called Primary FSGS. He started peritoneal dialysis a month ago and he is waiting to be listed on the UNO'S list for a kidney transplant. We have hope that God will see us through all of this ordeal. It has not been easy at all. My best wishes to you.

[WYOAnne NKF Ambassador]

Congratulations on your 32 year kidney transplant anniversary!!

I too have FSGS having my transplant in 1999 from a 16 year old deceased donor. Stay well and enjoy life!

[Kbressler NKF Peer Mentor NKF Ambassador in reply to WYOAnne]

Thank you. I believe that all you have to do to have longevity is do everything in moderation. You have to exercise everyday and take your medicine as prescribed. I read a lot of the posts here and I get concerned about responses that I read. The only information that needs to be given out is encouragement. It is evident that you have bought into the concept that no two people and no two transplants are alike and you always reference your response with consult with your Nephrologist first. It is also evident that you are doing things appropriately as evidence with your living with a deceased kidney for 19 years that is marvelous and you need to be commended. Keep up the good work and stay healthy the war against kidney disease never ends.

[WYOAnne NKF Ambassador in reply to Kbressler]

Thanks so much! And YES you are so right....encouragement is #1. I believe that you have to be your own advocate. This is your life, and your health, so why wouldn't you feel comfortable with your doctor and ask him questions or concerns you might have. I think ATTITUDE is everything!

God bless you and your family!