A Minimal change disease interview , Fibromyalgia.

Julie's interview


How did all start?

I started feeling out of breath and fatigued by the smallest activity. Then I started retaining water. It was a Friday evening when I started to become alarmed. By Sunday I could barely move. My husband insisted we go to the ER. Once there I starter to feel like I might die. I still can’t explain why. A half hour later they told me they’d found a pulmonary embolism. They started to give me medicines that made everything seem dream-like. They told me then suspected Nephrotic Syndrome, but they didn’t know why. They transferred me to a larger hospital with a bigger nephrology team. There they used diuretics, fluid restriction, and prednisone to get 90 pounds of edema off of me.

Do you already have a diagnosis? How long did it take you to get it?

I had a kidney biopsy in July, 2018. I have been diagnosed with Minimal Change Disease. It took about two months.

For what medical specialties have you been treated? What has been the most useful specialty for your?

The prednisone was worsening my diabetes and otherwise affecting my body very badly. I had trouble seeing, my hair was falling out, I got moon face and a buffalo hump (which I still have and which upset me terribly), and I was extremely hungry, among other side effects. They decided to wean me off of it and put me on cyclosporine instead. They also thought it was best if I take the cancer infusion called Rituximab. It has a good record of putting MCD sufferers into remission. I did two infusions and was just released from the hospital (after a month) several days ago.

What has been the most useful thing for you so far?

So far the best thing has been a combination of toursemide and fluid and salt restriction, which I find crazy-making!

What have been your biggest difficulties?

The fluid restriction has been terrible. Also my body is just a mess. The edema has given me stretch marks all over, including my arms. It has made my already fat belly even fatter and nowmit hangs low. The prednisone made my once pretty face look bloated and distorted. I feel embarrassed just existing in public now. I’m still grieving the loss of my looks and my mobility. The edema and fatigue make it hard to get around.

How has your social and family environment reacted? Have your social or family relationships changed?

My family takes care of me now. I used to have a young spirit and I was the driving force in the family. My husband now gives me my pills, helps me get out of bed, and even helps me shower. My daughter visits me in my bedroom now. We used to go out together and have fun. I feel like a burden a lot of the time. Family stress is definitely higher.

What things have you stopped doing?

I’ve stopped going out. I’ve stopped making art. I’ve stopped cooking. Ive stopped pretty much everything besides getting through my day... which is mostly spent in bed or on the sofa.

What do you think about the future?

I’m scared of the future. I can’t live like this and I’m hanging all my hopes on Rituximab. They say to give it six months to work. I’m just waiting for a sign that it’s working. So far nothing. I still see the bubbly protein in my urine daily. If this is how I have to spend the rest of my life... I don’t know that I can. I really don’t know what I’ll do. My mind goes to dark places.

So far, which years have been the best years in your life? What have you done during them?

I don’t think this applies. I will say that I donsuspect that I’ve had MCD in a milder form since I was 8 or so. I recall having bubbly/soapy urine as a child. And when I was 12 or so my legs started putting from mild edema. I have also always suffered from puffy eyes off and on. The best years of my life... When my daughter was little and my mother was still alive and lived with us. I miss that.

What would you like to do if you didn’t have your condition?

I’d like to be spry. I’d like to jog, hike, work out, feel fast and sure-footed. I’d like to drink as much water as I want to. Oh, how I miss feeling hydrated.

If you had to describe your life in a sentence, what would it be?

Right now? Unlivable.

Finally, what advice would you give to a person in a similar situation?

I’d tell them to be aggressive about treating this. I’d say to take the chemo meds, take the diuretics, make sure your doctor is cutting edge and fully understands your disease and all that can be done. Don’t ever rest, even in remission. Keep being good to your kidneys.

Interview Minimal change disease

Jul 25, 2018

By: Julie

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