New home in suburbs. Check.
Kid in good school. Check.
Pilates business taking off. Check.
Kidneys decide to go on strike. Check.

…Wait a minute. That is NOT the plan!

I am a doer. Maybe that’s because I’m a Midwesterner and I have a reputation to uphold. When I’m not doing, something doesn’t feel right. I like to keep busy with my endless To-Do List.

This past year I have been BUSY. We moved. I prepared the house to sell. Cleaning, painting, yard work, 3 dumpsters of boxes I never opened from the basement. The house was sold in a day! I packed our belongings in color-coded boxes, all while driving my son to school an hour and a half each way.  Needless to say my life was a crazy blur.

chronic illness is a blur

We moved into our newly constructed home that wasn’t quite finished, so unpacking was delayed. In the spring, I had unpacked all but one group of boxes, and I was tired. Really tired. I thought I was just being lazy.

“Come on, You. We’ve got to get these boxes unpacked. Put on some music, drink some coffee and Let’s GO!”

So I did. I cranked the music, drank a few pots of coffee, and unpacked those boxes that were not going to get the best of me.

The next day I was in the emergency room. I didn’t want to go, I just wanted to have a glass of wine and lay on the couch until I felt better. But my husband called my doctor and she called the emergency room and everything was ready. I really hate to disappoint people, also a Midwesterner trait, so off we went to the emergency room. I knew I was just going to feel silly because nothing was wrong that a good night’s sleep couldn’t cure.

At the emergency room they were ready. I didn’t even get to sit in the waiting room and read People magazine. I was ushered into a white curtained room. The ER team, in their white jackets, swarmed like bees, weaving in and out, drawing blood painlessly, hooking up electrodes, and asking me the same questions over and over. I started getting nervous and my legs started shaking. They brought me a warm blanket that had been heated in a microwave. It’s a thing.

Testing for chronic illness

Finally a young, brash, female doctor, that might have been from the cast of Gray’s Anatomy, pulled back the white curtain and drug a metal chair to the side of my bed.
Was she wearing cowboy boots?

“I’ll tell you why you feel so crappy. Your kidneys are shot.”

“Whaaat?!?”

“Your kidneys are shot. They’re not working. It looks like chronic kidney disease. We ran the test twice and you can’t go home either. We have a room for you. We’re going to wheel you up after we take a sonogram of your kidneys. You’re going to be here for a while so your husband might want to get some necessities for you. Your blood pressure is 190 so we’re starting you on BP meds tonight. And by the way, you’re lucky you didn’t have a stroke.”

Now my legs are really shaking. My whole body is shaking. Kidneys. Are those the organs you don’t really need? Don’t you have two of them? No, you need your kidneys. You need them to pee. But I pee fine.

Suddenly, I have an extreme need to go to the bathroom to make sure I can still pee.

I can.

chronic illness in the emergency room

I was wheeled to my hospital room to find my brother waiting for me. My son went to stay with his cousins. My husband went to get some things so he could spend the night with me in the hospital. Now I’m thinking I might possibly be in trouble. When I get to my room there are a lot of doctors. At least five of them standing around my bed taking notes as they ask me the same questions:

“Did you know you have high blood pressure?”
“Do you have a funny taste in your mouth?”
“Do you take over the counter pain medication”?
“When you urinate, is there foam?”
“How long have you been tired?”
“Are you frequently out of breath?”
“Is your vision sometimes blurry?”

“Yes, to all of the above. But I can explain. I knew I had high blood pressure, but last time I checked it wasn’t THAT bad. I’ve had a bad taste in my mouth but I thought I was having acid reflux. I do take over the counter pain meds, but I don’t take ten a day, and there is foam when I urinate, but I thought it was from the pressure of my flow because I’m so busy I try to hold it as long as possible. I am out of breath when I go up the stairs because I’m always running and yes, my vision is sometimes blurry because I must need a new prescription, and I have been tired for about a month.”

chronic illness questions

All I can think of when the handsome young doctor is speaking to me is that I must introduce him to my niece. “We call the level of toxins in your blood the Creatinine Level. Your creatinine level is 8.5 and the normal range is .60 to 1.30. You are going to need dialysis.”

“What!? Wait a minute. Isn’t there another way, like baking soda and apple cider vinegar? Can’t I just drink a lot of purified water until my kidneys are up and running again? Actually, I’m feeling much better so I think I could probably go home tomorrow.”

I could not believe that I was really sick. I teach Pilates! I’m practically a vegetarian! I was convinced that there was an alternative to dialysis. I was feeling ok in the hospital and finally convinced the doctors to let me go home.

I was home for one day and then started feeling very ill. Feeling like maybe coming home wasn’t so smart after all. My sister had come to help out and was getting ready to go back to Raleigh. I got very teary eyed and came close to begging her to stay.

 

kidney disease is exhausting

The day my sister left, I had a meeting with my primary nephrologist. I was feeling so very bad. Low energy, nauseous, foggy headed. It was hard to even walk on the sidewalk without wanting to stop every few steps. I wanted to sit on the curb and call Uber to take me the remaining two blocks to the clinic. I was almost ready to do anything not to feel this bad. Even dialysis.

During my appointment, my doctor explained the significance of my high creatinine level and how the dialysis would clean the toxins from my blood. While she was speaking, I started getting dizzy and nauseous and had to make a grab for the wastebasket in case I lost it.

My doctor went into Code Blue.

“Nausea is a sign of renal failure! You need to go to dialysis. Like right now!”

She got a wheelchair and had a nurse wheel me across the street to surgery. I went to Radiology where they put in an emergency port, the same type of port used in chemotherapy. Off I went to my first session of dialysis.

This is the day I finally realized just how sick I was. I really did need dialysis instead of the baking soda vinegar treatment I found on Pinterest.

I felt very bad for two more days and thought to myself, “So this is what being really sick feels like.” I felt like I was slowly dying.

kidney disease and dialysis

I stayed at the hospital and had dialysis every day for a week. Then, slowly I started feeling better. During dialysis they gave me a medication called Epogen, which tells the bone marrow to produce red blood cells. This is usually the job of the kidneys. Who knew? So all the time I thought I was lazy, I was actually anemic. It was a great relief to realize that I was not actually lazy.

During my stay, I met with a social worker that found a dialysis clinic near my home called Davita. She set me up with dialysis 3 days a week for 3 ½ hours per treatment. By the way, dialysis is not that bad, it does not hurt, and it’s hard to complain about something that’s keeping me alive.

So many questions.

My team of doctors never figured out why my kidneys failed. Apparently they had been on the decline for some time. When I finally noticed symptoms, I was in already the final stages of kidney failure. The doctors said that this is very common with chronic kidney disease, or as we like to say, CKD.

kidney side plank

Since my CKD diagnosis, I have had a kidney transplant. My sister, the hero of my life, generously donated her kidney to me.

Because of my sister’s love, I am fortunate enough to have a do-over. The health of my new kidney is a priority. I’m learning everything I can about really living a life of wellness. It can be a little overwhelming because there are so many aspects of being healthy. I’m discovering new foods that support my immune system, how to get toxins out of my home and beauty products, and learning about alternatives to the over-the counter meds I relied on.

This is an exciting and necessary journey for me. I feel like I’m finally learning how to take care of myself. My hope is that you will find some useful information on your own journey to wellness.