Lauren S.

Diagnosed with MCD – Jan. 2021 at age 35. 

First signs of MCD, Oct. 2020 swelling in ankles and feet. I was told by my nurse practitioner and primary care physician that it was just too much sodium.  

I finally went into the hospital on Jan. 4, 2021 after 3 months of not being diagnosed, but at this point I was told it was my kidneys. Between October 2020 and December 29th 2021, I went got an ultrasound of my heart to rule that out. I also was swelling everywhere you can think of and had to pull out my maternity clothes again. I was unable to do part of my job which was carting radiopharmaceuticals from our production facility to other parts of the hospital. I continued to work out during this time which was not easy. I noticed myself getting out of breath walking the 5 min from the parking garage to my office.   

On January 4, 2021, I decided I had enough and told my husband to take me to the ER. On our way to the ER we got in a minor accident when someone cut us off and our car flipped. We were both okay and a mile from the hospital. I took an ambulance, and my husband walked to the hospital. This was during the pandemic;therefore my husband was not allowed to go with me. I waited for 11 hours in the ER room. I was finally called back to be checked out.  

I got a room in the hospital the next day. I had to wear a heart monitor and was not allowed to walk around since it set the heart monitor off. I was not able to drink anything for a long time in case we had to do surgery etc. I had to have 16 vials of blood taken from my hand. I The next day I had a kidney biopsy which finally confirmed my diagnosis of MCD. That is when I met my wonderful nephrologist.  

Due to not being diagnosed my cholesterol and thyroid were all over the place. I was immediately placed on an ivy of prednisone. Then after 7 days in the hospital started my prednisone journey. I had lost tons of muscle mass once all the edema was gone, which also made me lose weight drastically. During all of this it was hard to pick up my 2.5 year old child. It was hard for her to understand that mommy was sick.  

I went on 2 months of short term disability. I was lucky to not have major symptoms of predinisone except the lack of sleep. I was place on a very high dosage of prednisone. I would tapper off to 20mg and then relapse. We realized I was prednisone dependent, so we tapered from that and I was placed on cellcept. The tapering from prednisone was not fun.  

During this time I found support groups for FSGS/MCD on facebook of all places. They were such a help in my support and understanding. Also during this time my hair stopped growing and became very thing. I had to have it cut all off. I was not a fan of short hair. That part was very hard for me to deal with. I was mad and upset.  

I have been on cellcept now for two years and am hopefully tapering off this year in 2025. People do not understand that I am either in relapse or remission from MCD, but I will always have it. I have made checking my urine with for protein a weekly habit. I have had to put of trying to have another baby due to the cellcept and know that pregnancy may make me go into relapse. This also means I will not be able to have another child until my 40s which is not ideal.  

I hate that I can never take NSAIDS again. I know I am very blessed to go into remission with the aid of medication and to have a nephrologist who is knowledgeable of MCD. Unlike many others I do not know why my MCD started.  NO matter what your health concern is keeping advocating for yourself until you get an answer. I hope I can give hope to others that you can get in remission with time and that you can still get pregnant even with MCD.