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Kidney disease: Figuring out minimal change disease (MCD)
I would like to share my story and hope that people also will know how important it is to be organ donors as many people have been saying for a long time.
When I was eleven years old in 2002 I found out I had a kidney disease called minemal change disease. I can't tell you much about it as all I was told was to watch my sodium intake and my fluid intake. I seemd to be doing just fine. As that year continued on I noticed that my ankles started to become swollen and my legs became swollen but I figured it was because I was just on them alot because of the sports I was in and how active I was outside. In 2003 when I was twelve, I started volleyball and I ended up gettign the flu really bad, triggering something in my body where I started to retain so much fluid that I couldn't hardly get out of bed. I ended up in the hospital nine times in 2 months to try to get some fluid off. That was when I was told to go to Mayo Clinic to get a second opinion. My kidney doctor in sioux falls said something at one point about a kidney transplant but I didn't think it would ever come to that. In November of 2003, I went down to Mayo Clinic for 2 days of testing and it was then that I was told that I needed a kidney transplant. It was a devastation blow to me and my whole family. My older brother who was 21 at the time instantly offered to donate and he went down for testing in February of 2004. He passed every test and it was then he was told that he could donate his kidney to me. My uncle also wanted to donate and since he was older and passed the tests too with flying colors that he was gonna be the one to donate his kidney to me. I ended up getting my native kidneys removed in March of 2004 because they were to diseased and I was almost up to 200 pounds filled with fluid. After that surgery I did dialysis until May 11th, 2004 which was a week after my 13th birthday and that was the date of my transplant. My transplant was successfull, however 12 hours after the surgery my disease came back at full force attacking the kidney. I started treatment and dialysis however a year after the surgery that kidney was removed and I went back to being on dialysis. Finally in 2008, my brother got approved again to be my donor and on November 11, 2008 my older brother donated his kidney to me. I started making urine right away and even though my disease was there I was still doing good. It will be 3 years next friday that my brother gave my my chance at life again and I have never felt better. I have so much energy and I am now in college and graduating in May with my degree for medical assisting. It seems to me that I was always supposed to get my brothers kidney. I can never repay him or my uncle for what they did for me but I will be eternally grateful. I was lucky that I had family members that were matches but I was put on the list for awhile and they told me it could be years before I got a kidney. My whole family is now organ donors so that they can give someone else a second chance at life. It is an amazing thing. Now you all know a little more about me 🙂
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Thank you for your update. I am slowly weaning down from my original 50 mg pred daily, currently taking 40 mg daily. As I expected, my urine Pr/Cr is now normal. My kidneys seemingly respond to prednisone, but only at an initial high dose to suppress the protein loss. Your information helps me because once I am down to 20 mg daily, I have to add Tacrolimus or Mycophenolate. My nephrologist says he uses generic, so I find it interesting you don’t tolerate all the generics. I researched a monthly cost for me, and estimated $300-400, but I am on Medicare with a supplemental Drug plan. $800 for a 30 day supply is tough.
I was on high dose of prednisone prior to starting Tacrolimus. I took the Pfizer vaccine. I did not develop antibodies to the vaccine. Don’t know if it’s because of the immunotherapy. Have you been vaccinated against COVID? If so did you develop antibodies?
I have had 2 Moderna immunizations. First one before taking any prednisone, 2nd vac while taking 20 mg of pred daily. I have not had antibody levels measured as of yet. Kind of waiting for an accurate assessment regarding protection. Not sure that test is available. After reading about Nephrotic Syndrome and Covid-19 immunizations, I am currently not interested in a 3rd vaccination.
https://tinyurl.com/2vdhj8yd
Glomerulonephritis after COVID-19 vaccination
Contribute to the I-RocGN2 Registry. This survey is designed to investigate and better understand new onset glomerulonephritis after COVID-19 vaccination or relapses of glomerulonephritis that occurred after vaccination.
https://redcapsurvey.niddk.nih.gov/surveys/?s=LCDAMFD9JA
@kndvm, thank you for providing resources about MCD with your posts. Would you mind if I edit your posts to insert the title of article and survey to which you link? That will give people information to trust before clicking the URL.
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1 ReactionOf course you can share! Thanks for making it believable.
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1 ReactionExcellent website thanks for sharing
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2 Reactions@codered032, A quick comment on Prograf - I was taking the Name brand when I first transplanted in 2009. When the generic became available, my transplant team changed me to the generic Tacrolimus. I did not notice any difference in my labs or side effects. I am still taking it.
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