Kidney disease: Figuring out minimal change disease (MCD)

Posted by ElsieAnn @elsieann, Nov 4, 2011

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 🙂

My grand daughter is 16 and I can’t imagine her going through all that you have struggled with! Actually my kidneys are doing ok. Although I have multiple cysts on both kidneys and liver, and angiomyolipomas also. They are not growing very fast and everything seems stable and benign. I have (probably) a collagen disease that caused this but where it really attacks our family is in the weakened structure of the blood vessels, especially the aorta and in the brain. Both my brother and my father died of sudden aortic dissections or blowouts. The ERs totally misdiagnosed them both and missed the chance for surgical repair.
Then my second child, a son, died of a brain hemorrhage at 19 days old, probably also related to the collagen defect. My third, another son, was born with almost no blood platelets, and could have died from hemorrhage also except for several miracles of the right Dr, the right place and time. Ted is fine now and is 35!!! And my first, Christie is healthy and the mother of my only grand daughter who is the joy of my life. She is the one who is 16–Kira Nicole.
I have to turn the light out now, I am being told (See, people keep telling you what to do, no matter how old you are! lol )

May God continue to give you peace and joy

“Grandma” Judy




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Hello I am new to social media so please bear with me while I learn to navigate the internet. I am now 69yo. Approximately 2yrs ago during my annual physical I was dx with minimal change disease. I am a retired RN, but had never heard of MCD. I have always been healthy and other vitamin supplement was on no medications. I immediately started to research MCD but to date not much information related to adult onset. I was evacuated by a neurologist and dx via a rental biopsy. I was treated per protocol with high doses of prednisone and told everything would be ok. Unfortunately after almost a year of prednisone my condition has not changed. The side effects of prednisone were unbearable. Six months ago I was started on Tacrolimus. I question if my condition is being properly managed. I learned through research that I needed to have random Tacrolimus levels done. I became my advocate having to request blood levels and follow-up medical appointments as well as medication adjustments. I am at a lost as to where to go for proper treatment. I am other wise healthy. I am open to suggestions as adult onset MCD has limited internet information. Thank you for any support.

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@codered032

Hello I am new to social media so please bear with me while I learn to navigate the internet. I am now 69yo. Approximately 2yrs ago during my annual physical I was dx with minimal change disease. I am a retired RN, but had never heard of MCD. I have always been healthy and other vitamin supplement was on no medications. I immediately started to research MCD but to date not much information related to adult onset. I was evacuated by a neurologist and dx via a rental biopsy. I was treated per protocol with high doses of prednisone and told everything would be ok. Unfortunately after almost a year of prednisone my condition has not changed. The side effects of prednisone were unbearable. Six months ago I was started on Tacrolimus. I question if my condition is being properly managed. I learned through research that I needed to have random Tacrolimus levels done. I became my advocate having to request blood levels and follow-up medical appointments as well as medication adjustments. I am at a lost as to where to go for proper treatment. I am other wise healthy. I am open to suggestions as adult onset MCD has limited internet information. Thank you for any support.

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@codered032 Welcome to Mayo Clinic Connect! We are fellow patients, caregivers, and family members, who share our experiences and strength with others on their own health journeys.

I had not heard of minimal change disease before, so had to look it up, It appears to fall into the same categories as other glomeruli kidney diseases, most notably FSGS. Here is an article from nephpcure.org to give you information: https://nephcure.org/livingwithkidneydisease/understanding-glomerular-disease/understanding-minimal-change-disease/. Also, here is an article from Medline Plus https://medlineplus.gov/ency/article/000496.htm

As a fellow kidney disease patient, I know it can be quite the challenge to find out information about a specific condition. I also have a glomeruli involved situation, caused by an ultra-rare autoimmune disease. While I am not able to do a transplant, my treatment seems to follow the normal guidelines of reducing stress, getting exercise, following a kidney friendly diet, no NSAIDS except acetaminophen, no smoking.

Have you looked at past lifestyle choices to figure out if any of them may have been a contributing factor to your current diagnosis? If you are questioning the management of your case, have you considered looking into a large teaching hospital or one the the Mayo Clinic campuses?
Ginger

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Ginger, thank you for sharing. I have always paid close attention to my health. From the information that I have read, I did have a massive allergic reaction of unknown origin and I was treated with Celebrex for over a year for osteoarthritis. It appears that either one may have contributed to my diagnosis. After a year of being treated with Prednisone, 4month ago I was started on Tacrolimus ($400+ A month)! I am not sure how well it is working because I have to keep reminding my nephrologist to order my blood levels and I am not sure what my levels should be. Thank you for the information. My next appointment is in November. If things have not changed I will certainly explore a visit to Mayo!

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@codered032

Ginger, thank you for sharing. I have always paid close attention to my health. From the information that I have read, I did have a massive allergic reaction of unknown origin and I was treated with Celebrex for over a year for osteoarthritis. It appears that either one may have contributed to my diagnosis. After a year of being treated with Prednisone, 4month ago I was started on Tacrolimus ($400+ A month)! I am not sure how well it is working because I have to keep reminding my nephrologist to order my blood levels and I am not sure what my levels should be. Thank you for the information. My next appointment is in November. If things have not changed I will certainly explore a visit to Mayo!

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I am a retired veterinarian diagnosed with MCD in January 2020 by renal biopsy. I too lived a healthy 65 years prior to diagnosis. My family has immune-mediated disease and I believe NS MCD has an autoimmune component. After confirmed diagnosis, I took 55mg pred for 4 months and my urine Pr/Cr dropped from 21 to 3. My nephrologist started a slow wean and my numbers went back up so returned to 50mg pred. Finally weaned off pred the end of September 2020. I had 4 months of remission before the foamy urine recurred in Feb 2021. I have tried a conservative dose of pred initially this round, but I am currently seeing swollen ankles and legs so back on 50mg pred daily, atorvastatin for elevated cholesterol, and Lisinopril for hypertension and proteinuria. My panels for underlying disease are normal. As soon as the pred hopefully lowers my urine Pr/Cr this time, my neph and I will decide between starting tacrolimus or mycophenolate, another immunosuppressive drug option in MCD. I need a DEXA scan because of osteoporosis and bone loss associated with long-term steroid use. I plan to get a second opinion with Mayo Clinic in MN. They are a top team regarding glomerular disease and are conducting research to determine underlying cause/pathology/bio markers.
Up to Date is an on/line resource for physicians. I found it researching my Mother’s lymphoma. If you have any friends who are physicians, you may be able to get them to copy the featured Adult Nephrotic Syndrome MCD. Ask your nephrologist about the article. It is such a good reference for me.

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Thank you for sharing

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Your experience with MCD appears to mimic my condition. Are you treating with a Mayo physician? If so how can I arrange for a second opinion at Mayo Clinic?

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@codered032

Your experience with MCD appears to mimic my condition. Are you treating with a Mayo physician? If so how can I arrange for a second opinion at Mayo Clinic?

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Hi codered, You can self-refer and request an appointment yourself at Mayo Clinic. Mayo Clinic generally doesn't require a doctor's referral. But your insurance might. It's a good idea to check with your insurance company about coverage requirements. If you need a referral, we can help you with this process.

Even if a doctor's referral isn't required, getting one can help Mayo Clinic better determine what care you need. Here's how to get started: http://mayocl.in/1mtmR63

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@codered032

Your experience with MCD appears to mimic my condition. Are you treating with a Mayo physician? If so how can I arrange for a second opinion at Mayo Clinic?

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I am currently under my local Nephrologist’s care, but plan to request a referral appointment with Dr Fervenza at Mayo Clinic at my upcoming appointment.

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@rkndvm

I am currently under my local Nephrologist’s care, but plan to request a referral appointment with Dr Fervenza at Mayo Clinic at my upcoming appointment.

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Thank you for your reply. How did you find this Dr? I live in Cincinnati, Oh. I don’t know the name of any dr at Mayo.

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@colleenyoung

Hi codered, You can self-refer and request an appointment yourself at Mayo Clinic. Mayo Clinic generally doesn't require a doctor's referral. But your insurance might. It's a good idea to check with your insurance company about coverage requirements. If you need a referral, we can help you with this process.

Even if a doctor's referral isn't required, getting one can help Mayo Clinic better determine what care you need. Here's how to get started: http://mayocl.in/1mtmR63

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Thank you for the information. I will start the process right away

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@codered032

Thank you for your reply. How did you find this Dr? I live in Cincinnati, Oh. I don’t know the name of any dr at Mayo.

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Mayo Clinic is one of the top nephrology hospitals in the country. If you google top kidney hospitals, you may find one closer to Cincinnati. In a previous post I referred to an article I found
Minimal Change Disease : Etiology, clinical features, and diagnosis in Adults
Dr Fervenza was a section editor and he is also an attending at Mayo Clinic in Rochester.
This is an excellent reference article if you can find it.
I located it on UpTo Date, an excellent site for current information for healthcare provider’s . My nephrologist uses it and offered to copy the article for me. I’m sure a medical library would help you. What about the Cleveland Clinic? Also see it listed for rheumatology. I believe MCD is immune-mediated.

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