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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 the information. I will start the process right away
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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1 ReactionI was able to locate the information. Thank you. And yes it appears that MCD is immune related but so far all of my test are inconclusive. Have you been scheduled for an initial visit? Please share your experience with me. By the way are you having trouble sleeping?
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1 ReactionI have not scheduled an initial visit yet, but will let you know what I find out.
I never sleep more than a few hours at a time. 🙄 Insomnia is my worst side effect! I “rest my eyes” tossing and turning and take naps. So grateful to be retired.
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1 ReactionI rarely sleep. Didn’t know if this is a side effect. I am currently taking Tacrolimus 3mg every 12/hrs. Didn’t know if insomnia is related to the medication or the MCD. I pray that your visit goes well.
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1 ReactionNot sure about tacrolimus and insomnia. My never sleeping is related to the 50mg of pred I’m taking. I can sleep better on lower doses.
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2 ReactionsJust an update regarding my Nephrotic Syndrome MCD relapse. My early August urine Pr/Cr was 13.0. After being on 40 days of high dose prednisone, my urine Pr/Cr is almost normal (.276), so I will begin a slow taper… 5mg decrease pred every 2 weeks adding tacrolimus or mycophenolate as a second immunosuppressant when I am taking 20 mg pred daily. I am still trying to decide between the two drugs. I would very much appreciate any input regarding side effects of Prograf and CellCept. My rheumatologist prefers CellCept for lupus nephritis, but literature refers to the direct effect of tacrolimus on kidney podocytes (the actual cells allowing protein loss.)
Thanks to everyone contributing! I learn something with each person’s history.
RKN
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2 ReactionsHi I read your blog. I was dx with MCD about 15mos ago. I am having trouble understanding the treatment process. When were you dx, and which medications have worked best for you? I was on high dose prednisone for a year. I was switched to Tacrolimus 4 mos ago. Recently my pharmacist changed my drug manufacturer from Prograf to a generic brand which I have not been able to locate on line. Do you know if the generic work as well as Prograf? How long were you in remission? Any treatment information that you can share will be greatly appreciated.
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1 ReactionI am not familiar with Prograf or generic tacrolimus. Hopefully, someone else can comment. I am currently taking prednisone for the second time to treat my MCD. I took a high dose 50-55 mg daily for 6 months before I could begin a very slow taper in June 2020. I enjoyed a 4 month remission before my proteinuria recurred… as it seemingly does with most patients. My nephrologist started out with a “conservative” dose of prednisone in February of 2021. 20-30mg of pred is NOT enough to affect the cells in my kidneys that allow protein loss. Within a couple weeks of going back to 50mg pred per day in early August, the foam in my urine decreased and my weight gain, swollen feet, edema resolved. I personally need the high dose of prednisone to achieve a normal urine Pr/Cr. Now I begin another SLOW taper so I will be on some level of steroids for most of 2021, with a goal of achieving a longer remission. My Nephrologist’s plan is to add either Prograf (tacrolimus) or CellCept (mycophenolate) as a second immunosuppressant to lower my pred dose. I am trying to decide, with input from anyone taking either drug, which would be best.
Not sure this helps you, but I truly believe each patient is different often requiring different treatment regimens. I have immune-mediated disease in my family. I lost a brother to scleroderma and my Mom had rheumatoid arthritis. I think my NS MCD is immune-mediated, so it makes sense to me that it responds to prednisone.
I still plan to seek an appointment with Dr Fervenza at Mayo Clinic. Being on 45 mg of pred in the middle of a pandemic questioning the safety of yet another immunization (3rd booster) doesn’t allow me to schedule that appointment yet.
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3 ReactionsI have been off line for a while. I am currently taking Tacrolimus 3mg every 12hr. I tolerate Prograf ok but my issues are the cost of the Prograf ($800 for 30 days). I use GoodRx to shop for generic, but I never know who the manufacturer is. There are several Tacrolimus generic’s that I can’t tolerate. I have severe stomach issues, n/v, chills, kidney pain etc..excessive urinating. Because I don’t get monthly levels I am not sure if my levels are stable. Prograf was helpful with reducing symptoms of Proteinuria but the generics are questionable.