My Kidney Disease Story

Where to even begin…

It all started back in January of 2014.  I started getting really bad cramps in my legs to the point that they would be rock solid and in so much pain I couldn’t walk. My ankles and feet then started to swell, some days more so than the others. 

In early February I woke up with a swollen face. I had an exam that day and little sleep from the night before from studying so I figured it was body on freak out mode from stress and anxiety. I texted this picture to my aunts, mom, and boyfriend and they all agreed that it wasn't normal but that it was stress induced and to take it easy the next couple days so the swelling could go down, and it did, at least for a few days. 

My legs contined to keep getting larger and larger. More pain walking around the large campus of Michigan State University. Some days while walking to class I would have to stop at each building I passed to sit down and let the pain go away before I would get up again to walk as far I could before my eyes would start to tear up from the pain again. I started missing a lot of my classes because it was just too much.

At this point I had what it called "edema." Edema is swelling caused by excess fluid trapped in your body's tissues. I was able to push in on my legs for a good inch-inch and a half and have the indentation of my finger remain in my legs for about a minute. What the fuck is going on with my body?!

Time for the doctor. I went to a primary care doctor because I had no idea what else the fuck to do. This doctor was incredibly kind and understanding. We did an EKG in her office to make sure my heart was working properly, and it was. I was then sent to the hospital to get a CT and an ultrasound of my legs. For someone who had never spent any large portion of time in hospitals, this was a new experience for me and it was almost exciting.

Exciting until all my results of these tests come back negative. My doctor THEN sent me to a nephrologist, a kidney doctor. My first appointment I did a urine sample and just chatted about my symptoms, which were still edema and just all over pain and discomfort. She said that I needed to get a kidney biopsy. Uhhhh what? Surgery?

On March 26th, my dad picked me up from my dorm at 5:00 in the morning to head to Royal Oak's Beaumont Hospital to get my kidney biopsy. I was not allowed food or drink. What I remember about going in before surgery was not so much nerves but how badly I wanted to CHUG a HUGE glass of water. They took me into the operating room and here is where the nerves started to set in. Apparently the nurse could see this on my heart rate monitor and tried to get me an extra dose of sedation to knock me out but that freaked me out even more and I pushed it to stay awake through the surgery.

"Biopsy is finished. Smiles on my face. Getting results in a few days. Been fasting and I'm so hungry and thirsty! I want food! Thank you everyone for positive thoughts and vibes, much appreciated"

 For the rest of the day I had to lay on my side, not move my head or body. I had no pain. Pshh this is a breeze. Annnnnnnd then they wanted a urine sample, without me getting up which means they wanted me to pee in a bedpan. I tried so hard, but it such an unnatural feeling to pee in a bed! They allowed me to get up to walk to bathroom and I thought I was going to collapse for the pain I had in my side. Just hours before I had needles poking around and cutting at my insides and now I'm up trying to walk around?! Bad idea Dana. 

Bruise from biopsy

April 14th, my doctor told me that I had Nephrotic Syndrome. This is basically just an umbrella term for a bunch of symptoms. "Nephrotic syndrome is a nonspecific kidney disorder characterized by a number of signs of disease: proteinuria, hypoalbuminemia and edema.^[] It is characterized by an increase in permeability of the capillary walls of the glomerulus leading to the presence of high levels of protein passing from the blood into the urine."

I was also told that I had IgM Nephropothy and  No Change Disease.

IgM is short for Immunoglobulin M, one of the types of antibody the body produces to fight infection. This circulates in the blood. “Nephropathy” is a scientific term for kidney disease. The “glomeruli”, which are the tiny structures which filter the blood to make urine, are damaged by deposits of IgM.

In minimal change disease, there is damage to the glomeruli -- the tiny blood vessels inside the nephron where blood is filtered to make urine and waste is removed. The disease gets its name because this damage is not visible under a regular microscope. It can only be seen under an electron microscope.

I was placed on high dose of Prednisone to help my kidneys function properly. Let me tell you this is THE. WORST. DRUG. IN. HISTORY. I had awful mood swings, I can't sleep at night, no sex drive, I had gained 45 pounds in the course of a year. It is just awful.

I have had to come to terms with a lot of things since being diagnosed. Gaining the large amount of weight is still one I am fighting every day. My self body image is still me when I weighted 140lbs. I still think of myself as skinny and fit and able to walk up stairs easily, but that is not the case. I hate shopping now because I am in the large and extra large section and clothes don't fit how they used to. All my old clothes don't fit me anymore.

I've had to learn to express when I need help rather than just waiting for it to come to me. For the first year I tried to go to doctor's appointments and labs all on my own while hearing all this new information. That in turn made me glaze over in my appointments when my doctor was giving me important information. Dealing with chronic kidney disease is not something that just be a lone battle and I now have an army behind me helping me with bills and appointments and research. SO MUCH BETTER.

I had a lot of positivity and optimism in the beginning of my disease but that has slowly simmered away. It has come to the point that my boyfriend has to old me at least once a week crying from depression and not being able to accept the fact that I can't just ignore it and give up. Why did this happen to me? Why do I have to deal with all of this shit? It's not fair.

BUT that is thing, life is not fair. I DO have to deal with this, on a daily basis. I have to remember to take my medications, I have to remember that my body doesn't function the same way other people's do. Some days I will have really bad dizzy spells and my vision disappears and that is my body telling me to slow down.

I could not be more thankful for the amazing partner I have to help me with every day. Nate knows when I need my space to recoup and when I am right on the verge of crying (because apparently I have a fake smile that I do right before I cry to try and fight off the tears). Having someone who has to deal with my issues of this disease on a daily basis is someone who is very strong. With being depressed and angry and confused and scared and every other emotion out there in the course of a day, you have to be able to adjust and be patient and Nate is both of those things.

As for now, I am just taking it day by day, because well that is all that I really can do. Some days are better than most but you just have to keep moving and know that I have amazing people surrounding me and need me here as much as I need them. So I will keep fighting. Keep fighting to get off prednisone, to find a cure, to be healthy, to be happy, to have a meaningful life.