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Living with FSGS – A Chronic Kidney Disease

Living with FSGS – A Chronic Kidney Disease

living with fsgs

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I was officially diagnosed with Focal Segmental Glomerulosclerosis or FSGS in 2014. Living with FSGS has had its up and downs. My journey began in August 2013. I was about 30 weeks pregnant with TJ. During my appointment my blood pressure was extremely high. I was immediately admitted to the hospital to prepare for delivery.

As they were prepping me, it was discovered that my blood pressure was normal if I was laying on my back. This wasn’t typical of patients with preeclampsia. Combining this with the fact that I was spilling about 4,000 – 5,000 mg of protein in my urine, and my other labs were normal, my OB/GYN and other consulted doctors, decided that hospital bed rest was best for us as long as I was stable.

For 6 weeks I was only allowed 5 minutes to sit up to complete any task. I was poked and prodded every 3 – 4 hours. This was hands down the hardest thing that I have ever done.

The doctors were able to get me to 36 weeks. I gave birth to my beautiful son and my life with FSGS began.

What is FSGS?

FSGS is rare disease that attack the kidneys by scarring the kidney filters. Kidneys are composed of about a million filters. The filters keep in healthy nutrients and create urine by removing waste and extra water. Once the filter is scared, they no longer filter correctly allowing protein to seep into our urine. This is a huge no, no.

What are the first signs of FSGS or chronic kidney disease?

My first signs were high blood pressure and proteinuria. Proteinuria is when you have excess amount of protein in your urine. On average, a person should spill less than 44 mg. As stated above, my levels reached around 5000 mg during pregnancy.

My doctor stated that I was lucky because my disease was caught during my pregnancy. She stated that most people do not realize that something is wrong until they start experiencing kidney failure.

How do you get diagnosed with FSGS?


FSGS is only diagnosed with a biopsy. One of the doctors that closely monitored me in the hospital was my nephrologist. I had to wait at least 4 months to ensure that the pregnancy hormones were gone.

On February 14, 2014 I was admitted into the hospital to complete the kidney biopsy. I was wheeled into the room and the last thing I remember was the anesthesiologist explaining what he was giving me. 

I woke up in the recovery room with a little back pain.  The incision was very small.  I only needed was a little pain medicine and a small bandage to cover the incision.  After a few hours I was discharged.

About a week or two later, I received the diagnosis from my doctor.

Is it curable?

There is no cure for FSGS.  Once the filter is scared, it cannot be reversed.  However, you can gain remission status. 

What treatment is available?

The most common treatment includes:

  • High Blood Pressure Medication
  • Steroids
  • Diet Changes
  • Exercise

Treatment is different for each patient.  My current treatment includes blood pressure medicine, diet, and exercise.

Does FSGS lead to kidney failure?

Yes, FSGS can lead to kidney failure. You can increase kidney function, although the disease itself can’t be reversed,

I have experienced loss of kidney function.  In October 2018 my kidneys were only functioning at 75%.  I made sure to follow my doctor’s treatment plan.  At my last appointment, Jan 2019, my function was at 98%.

Treatment can help to slow the progression of the disease.  Some patients will eventually get worse and go into acute end stage kidney failure.  If this occurs, patients will need dialysis or a kidney transplant.

Living with FSGS-How has my life been affected?

Diet

I have had to make changes in my diet.  In the beginning, I was on a strict low sodium diet. Currently, I just maintain a “healthy diet”.

Nephrologist Visits and Medicine Restrictions

I see my nephrologist every 6 months.  I take more mg of blood pressure pills than at least 3 people I know who are in their 60s.  I also have to take vitamin supplements and monitor my blood pressure weekly. 

I cannot take certain medicines. This can be a hassle.  I have to check with my doctor often to get permission to use some medications. A LOT of over the counter medicines that are commonly used can cause blood pressure to rise.  I have to avoid Advil, certain allergy medicines and decongestants to name a few.  I make a habit of carrying approved medicine with me at all times.

Fatigue

I have take several breaks because I get tired easily.  This is a huge negative on our vacations.  I could usually open and close Disney.  On our trip to Disneyland, I had to go back to the room and take a nap.  Once day I couldn’t even return to the parks. Heartbreaking!

Lessons Learned

The one thing that I have learned is that you don’t look like what you feel like.  I generally look healthy, but I feel like shit some of the time.  This happens to me in waves.  I could be feeling good, then out of nowhere I get extremely tired and achy.

At first, I didn’t think anyone believed me.  I began to think it was all in my head.  I felt like people were giving me the side-eye when I would describe how I was feeling.

I started to feel as if I was crazy and alone.

I needed to find others who was dealing with the same thing. My dreams came true when I found a Facebook group dedicated to FSGS.  This was the best thing for me.  I wasn’t alone. I wasn’t crazy.

Being diagnosed with a chronic illness has also added to the reason why making memories with my family is important. I know all of the possibilities that the future may bring, but I am taking things a day at a time. I will not let it consume me or interfere with my goals. 

To find out more about Chronic Kidney Disease or FSGS visit: www.nephcure.org.

Are you or someone you know living with CKD/FSGS? Comment below. I would love to connect.

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