Lupus & End Stage Renal Disease: Journey & Overcoming (Pt. 1)

From having great health, to poor health to facing death and not fully understanding why that is can be quite the mental twist and scary feeling to go through and experience. However, the beauty is not only surviving it all, but thriving the best you can after such an ordeal. I feel like my story reflects that; living a healthy life, to being diagnosed with lupus, to end stage renal disease thinking this is it and that I would never come back to making a transforming snapback with a strength that I never knew I had.

Netert Aset with pic caption "Lupus & ESRD: Personal Experience and Journey of Overcoming" on indigo background with purple ribbon.

I am pleased to share with you this journey in hopes that I can inspire you or anyone you may know who has gone through anything of this nature that just because your days may be filled with gloom and doom there can be a positive way out. Things are being moved and cleared for something better in your life.

Prior To Diagnosis

I was considered a very healthy, highly energetic individual. I was rarely sick and if I ever was it lasted less than 24 hours before I was back to my usual, active self. So when it was time to prepare for college and seeing I that I didn’t have health insurance at the time, when some form of it was offered through the school, I said to myself, “I never get sick, why would I need to enroll?”

Besides that, just about everything I needed to finish my enrollment process was completed except for one thing, and that was to get the meningitis vaccine. As I have gotten the typically scheduled vaccines in the past (except flu), it was nothing for me go to a local walk-in clinic in town who offered and get it. Despite a few people actually urging me not to get it, I still went to do so. I didn’t see the reason why not at the time but I only knew that some of my parents’ co-workers’ children got exemptions from it. I knew thought to ask why. I was only determined to go to college and complete everything I could to move in.

It was late August, days before Freshman move-in day that I received the vaccine and sent the proof to school. I thought I was good to go. Then, about a month after getting the vaccine I began to experience a variety of symptoms that seemed so strange to me. I remember waking up with my fists clenched and knuckles in pain. I was very, very tired and I began to feel joint pain in my hips, elbows and knees. I thought it was because I had my bed up super high where I either had to step on a crate or just jump up to get on and that maybe I was stressing my body out too much doing that. However, the extreme fist clenching still wasn’t explained as I didn’t feel like I was stressed and I definitely don’t naturally sleep like that.

It was the strangest thing because I remember making a concentrated effort to get good rest and eat as healthy as I knew was possible living on a college campus. We had a nearby beach and walkway surrounded by trees and flowers and being that I always went to nature for my peace, I went with friends to unwind for minor stress-relief. I felt like all my avenues were covered.

Towards the end of the semester I was experiencing fever. I went to the nurse to get checked out but there was no definitive diagnosis. I was advised to rest and take pain killers. I was given a hot/cold pack for the joint pain. One day I was about to take an exam in class when the professor walked by and said that my hands looked like they were experiencing arthritis. I responded with, “Yeah, they are pretty painful,”.

After going home, I figured to myself, ‘Hey, maybe I really was stressed and just didn’t know it!’ However, my symptoms and pain only got worse so I told my mom that I thought I should see a doctor.

Diagnosis

Image by Chokniti Khongchum from Pixabay

Since I was 19 at the time and didn’t have insurance anyway, I ended up going to the last doctor I had seen even though I was over age. They agreed to see me. When I told him my symptoms and what I was experiencing he nodded his head in what seemed to be recognition of what it was. Right away, he said, “It’s lupus”

“What’s that?”
“It’s an autoimmune disease. Simply, put, your immune system is attacking itself,”
“Is there a cure for it?”
“No there is no cure,”
“Oh”

That was January 2, 2006. He referred me to a rheumatologist (doctor who deals with rheumatic conditions such as joint issues, autoimmune disease and more) who also confirmed what the first doctor said. I was prescribed Prednisone and Plaquenil. Most people I know with lupus diagnosis have been on these medicines.

The medicine (specifically the Prednisone) gave me the “moon face”, round and puffy. My hair was thinning out (most likely due to Plaquenil and/or lupus symptoms combined) and I developed bald patches in certain areas. I would comb over if possible or cover all together. I had also lost a considerable amount of weight and I only knew this because my clothes were fitting a bit big on me (I wasn’t the type to constantly weigh myself so that was my only way of knowing).

Like me upon first hearing of lupus, nobody at school knew what it was so I basically put it as the doctor said, “It’s when your immune system is attacking itself,”.

What a strange concept to those that don’t know! Your first question would be ‘Why in the world would your immune system attack itself?’ lol. There is a consensus amongst the allopathic (modern medicine) community that it can be caused by genetics or environmental factors. I was never told that certain medicines or vaccine reactions may be responsible as surely no one in my family has it which is why I was so confused about why I would have this diagnosis. Going from healthy to unhealthy and on medicines drastically changing my looks was quite the ride.

Needless to say, I am very happy to no longer be on Plaquenil, at the time of this post. However, what came next was even more scary.

Blood And Kidney Issues About 4 months later, in April 2006, I noticed while at school my urine was red. I thought it was weird because I was drinking plenty of water. I called my rheumatologist right away. He said it’s probably my kidneys and he will refer me to a nephrologist and “Don’t be alarmed,”

Really?! -_- I was sitting there peeing blood and I was told not to freak out. Ok.

Again, I didn’t know what a nephrologist was. I looked it up. It’s a kidney doctor.

Great, what the hell?! So I went to the appointment, and the doctor confirmed it was nephritis, inflammation of the kidneys. Later I found out that I had glomerulonephritis, inflammation of the glomeruli which are little, tiny filters in the kidneys which is part of the kidneys’ complex filtration system. Symptoms include: dark, reddish colored, foamy urine (result of blood and protein being excreted in the urine) amongst other symptoms.

Diagram showing kidney filtration through nephrons which contain the glomerulus (glomeruli for multiple glomerulus).

The nephrologist put me on what he called at the time, “a new medicine called CellCept“. It’s role is meant to suppress the immune system from attacking your body’s organs. In my case, the kidneys. I agreed to take it and was fine for a minute.

Hospitalization


Not long after being treated with these medicines I noticed as I was walking around on campus that I could not straighten out my left leg. There was a tightness behind the knee. I found myself walking slower and slower. I called the doctor and he told me to go for a local ultrasound of that area. The ultrasound technician told me, “Don’t move,” and ran out of the room. It turned out a blood clot had formed. -_- They called an ambulance and sent me straight to the hospital.

I was like dang! Something else now?! Mind you it’s been only 4 months since I was initially diagnosed with lupus, however, about 8 months of symptoms one after the other. It was frustrating because I was focused on getting my education. It was only my first year in college. Yet I kept my appointments and got the medicine I needed.

They drew my blood and did various tests. A doctor on call that night came into my room and told me I needed to be admitted. What the hell?! I laid back onto the bed and tears rolled down my face. I was scared because besides the day of being born, I was never admitted to the hospital. However, after that, I did my best to keep a smile on my face when family or doctors/staff came to visit me.

I was given Heparin as well as Coumadin, simultaneously to thin out the blood. I remained on Coumadin for another 6 years after that with regular PT/INR (PT= Prothrombin Time, which means how long it takes the blood to clot. INR=International Normalized Ratio, meaning the average time amongst many “normal” results) checks. That blood test measures your clotting factor of your blood and whether it is too thick or thin. This helps doctors to know how to adjust the medicine.

Being at the hospital was a trip. I had a roommate who would yell all doggone night. One night, it was so bad one of the nurses told her to be quiet people are trying to sleep and she yelled, “Ain’t nobody getting any sleep ’til somebody get me a nurse!”

I tried so hard not to laugh, hearing this older lady act like this. She was sweet during the day and at night was something else. To be honest, I wish I had headphones with me so I just kept the TV on some cartoons/comedy and tried to focus on getting as much sleep as possible and get out of there.

I was out of the hospital within one week. I went back to school after missing classes and midterm exams that week. The professors were really cool about it and allowed me to keep my grades. They said I was an exemplary student getting As anyway so I was fine. I’m glad they were understanding as I know most other professors couldn’t care less. Anyone who has experienced lupus themselves knows how important it is that people understand your situation is key in some instances such as school and work.

The next 6 years were pretty good. I had symptoms here and there. Some days were full of pain. A really bad flare (active symptoms) for me would feel like being in a torture chamber with the soft areas of my joints feeling like screws were being screwed into those places. I would feel it in one spot or another within minutes or in multiple places simultaneously. I would force myself to sleep off the pain as it felt quite unbearable. I’ve experienced inflammation around my heart and lungs in the past. Other times I was engrossed in my daily life that I rarely noticed/remembered having lupus unless it was time to take medicine. I had experienced remission at a time when I made some health habit changes, but ended up falling off of that regimen. Flares returned when I was in really stressful situations.

Next thing I knew, new symptoms had surfaced and kidney involvement became more severe.
The good thing is that at the time of this post I am doing very well. I have been able to manage and significantly reduce dosage of lupus symptoms and medicine. Such methods will be shared throughout Thrivers Inspire as it is too big to compile into one article.

Much Love,
*~Netert Aset~*


Have you or someone you know been diagnosed with lupus? If so what was it like?

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