The Journey of My Kidneys

Everyone has a story to tell, both good and bad. Asking for help has always been a struggle for me, but I have been working on that because it's okay to ask for help when you need assistance. I’ve learned that I can't do everything on my own.

My Story

In 2018, I was diagnosed with sarcoidosis, which is an inflammatory disease that affects various parts of the body, mainly the lymph nodes, lungs, eyes and skin. It can also affect other organs in the body, and my sarcoidosis decided to affect my kidneys.

Initially when they began to treat my sarcoidosis they put me on Prednisone, which is a steroid. One of the side effects of the steroid is gaining weight, which is something that I've been fighting back and forth with my entire life. Once I was done with that treatment, I started to drop weight as I knew I would in January 2019. My weight dropped normally as I returned to my routine.

I started a new job in August 2019. A few months in, I noticed that it seemed easier for me to lose weight and I thought it was all due to my efforts and the reduction of major stress and anxiety. What started out as normal weight loss, got to a point where my weight just continued to fall off and I was losing weight at a tremendously unhealthy rate.

I had to change jobs to maintain my physical well-being, my sanity and to keep my anxiety and depression under control. With that job change, I was much happier, but it did come with a HUGE drop in pay. I had to cut things that were more of a luxury rather than a necessity - and I'm still over budget.

Then, in 2020, as I continued to lose weight, I noticed that I would lose 10 lbs in a week and sometimes more, which was way too fast. I was experiencing extreme fatigue, being extremely cold all of the time and pain in the flanks of my back and my body in general. I knew it wasn't my normal back pain, because I had suffered with that through 20 years and two recent back surgeries, which resolved that problem. This pain was different and I was extremely fatigued.

Luckily, I had my normal check up in August and had my blood drawn as usual. Based on those results, an ultrasound and X-rays of my kidneys were done. The results indicated that I was in stage 4 severe renal failure. OMG, another health crisis! I was sent to a urologist to see if he could resolve the issue by addressing the stones that were found in my right and left kidneys. I had dropped down to a weight at which I had never been, except maybe when I was born (LOL), by the time of the procedure to remove my stones. The stones were removed from my right kidney and we would keep an eye on the stones in my left kidney. I was very scared and I'm still scared today.

The numbers that they continue to check for inflammation, any issues with the kidneys and my anemia were still way off. I had had stones in both kidneys but they focused on the right kidney, because it had the larger stones (which would have been too large to pass and were causing damage). That needed to be treated immediately, and the plan was to watch the left kidney and the hemoglobin for my anemia. But my numbers didn't change enough for my nephrologist or my hematologist. My nephrologist wanted to do a biopsy of my kidney which was scheduled for the end of January. She ended up calling me a week earlier to be admitted into the hospital that night or the following morning, because my numbers changed within two weeks and they weren't looking good. My official diagnosis is Chronic Renal Sarcoidosis .

With a health crisis comes heavy medical bills in addition to my regular bills and some incidentals. It also makes you fearful of what could happen, and you want your mom and/or dad there with you for comfort. Unfortunately and fortunately, they are with me spiritually along with baby girl, JoJo Bean (my cat). No one could visit due to the pandemic, so I was truly alone because no one in my friend family that I developed over the years could even offer comfort in person to visit me and exchange hugs. I am a hugger.

The medicine protocol that I received came with more side effects that I could ever imagine or experience. I was weak, had severe hand tremors, fatigue, the inability to write, difficulty comprehending and remembering information that was just given, and difficulty pulling together words and thoughts to make complete sentences. They started me off on 60 mg of prednisone (now decreased to 5 mg), alendronate sodium tablets, pantoprazole and magnesium. Even with my side effects decreasing, it still left me unable to do my job at full capacity. So to add insult to injury, not to mention the pile of bills, I was forced to go on medical leave without pay, which started in April and continues still for another 2 to 3 months.

I also have some other issues that come with more medical bills and maintenance medication. At this point, I can't afford them even with my insurance, and the amount of copays required almost every month is really daunting. I have nothing else to pull from, and I am in need of your assistance. Your donations will allow me to breathe, have a peaceful recovery, keep a roof over my head and food on my table and catch up with all of my bills. I am so grateful for your generosity.

Thank you in advance and love to you all!!!!

Anitra