Kidneys/Transplant · Life

One Year of CKD

There was just no way to make this post any shorter. I tried. So if you’re at all interested, you might want to grab some coffee and settle in for a few minutes.

There was a time in my life when I didn’t know what a nephrologist was. When I couldn’t have told you the difference between hemodialysis and peritoneal dialysis. And when the words Lebatelol and Procrit meant nothing to me. But that was before Mike’s diagnosis of Chronic Kidney Disease one year ago. I kind of feel like my life has been divided into two chapters: Before baby & CKD and After baby & CKD.

One year ago, I was on a trip to Georgia with my mom, a friend and my one-month-old baby. It was my first time really getting out of the house since having Lincoln besides trips to the pediatrician and  Target. I called to check on Mike at some point that weekend, and he told me that he thought he had food poisoning from some chicken wings that he ate. Knowing how greasy & lovely chicken wings are, I just figured he needed a day or two to get past some stomach issues. But when I arrived home Sunday night, I could tell something wasn’t right. I made him promise to go see a doctor Monday morning if he wasn’t feeling any better.

Monday while Mike was headed to the urgent care, I had a doctor’s appointment of my own. My mom came along to help with the baby, and on our way home I decided I should call to check on Mike. His words didn’t make sense to me at all. “They did some blood work, and they say I’m in renal failure and have to check in to the hospital immediately”. My head was spinning. How could what we thought was food poisoning be renal failure?  (We would later find out that the food poisoning had nothing to do with the kidneys at all. His doctor described the stomach issues as “Mike’s angel’s way of getting him to the hospital” so his CKD could be discovered and treated.) It’s funny how God works sometimes. My mom had just been telling me how it was so important to keep my husband first even though we had a baby now, and how I needed to choose my marriage over my child so that our marriage could stay strong. She even threw in a part about taking care of Mike when he was sick. Ironic since the phone call that changed my life happened only minutes after this conversation.

So I found myself having to choose Mike over Lincoln. I handed off my baby to my mom, and went to help Mike get checked into the hospital. The same hospital where we had welcomed our baby exactly 5 weeks earlier. For the next 3 days, I would have to turn the care of my child over to my family & friends. This was not an easy task for me. There was definitely a part of me that wanted to send someone else to sit with Mike so I wouldn’t have to leave Lincoln, but my husband needed me, and I’m thankful now that I chose to be by his side. So the baby who had never even been left with a babysitter before was now away from me all day & night (Minus the feedings I drove home for). Oh the feedings. A nursing baby that age eats about every two hours, and I was determined to not quit nursing during this time. So people brought Lincoln to me and I sat in the hospital parking lot and fed him, or I drove home just long enough to feed him there. I can’t even count how many trips I made to and from our home & the hospital.

Those three days in the hospital were filled with tests; lots and lots of tests. Round after round of blood work, ultrasound, colonoscopy, biopsy. It was a sick kind of deja vu being in that place so soon again. Instead of the 4th floor, we were on the 3rd floor. Instead of walking in the front doors laughing at the fact that my water had broken, we walked in the doors fearful, not knowing what was happening. Instead of me wearing the gown, my normally always well husband was sitting in a hospital bed wearing that wretched gown. And when we finally left, it was me pulling up the car for him as he was wheeled down in a wheel chair. Just a few weeks before, he was pulling up the car for me was I held my new baby in the wheelchair. It was strange and unfair.

There were some bright moments in the stay. Seeing Mike after his colonoscopy while the anesthesia was still in effect was one of the funniest moments of my life. I’ll never forget when he saw the photo of his, ahem, digestive area (to put it politely) and asked if it was our baby. I guess the memory of ultrasound pictures was still fresh in his mind. Then there was the patient in the room next door. And old man who was definitely not all there. He frequently yelled at the nurses, “You’re trying to kill me!” Mike still does an impression of this guy. It’s a pretty spot on impression, too.

About 48 hours in, we got our diagnosis. I was on my way back to the hospital from feeding the baby when the nephrologist called my cell phone. I told her I was in the parking lot, and she told me she would wait to talk to me in person. As she shared the news that Mike had a chronic condition that would ultimately mean he would need a kidney transplant, I couldn’t stop the tears from coming. She asked me how long his color had been so bad. When I responded that I had only noticed it in the past few days, she told me that it had been that way for a while, but I probably just didn’t notice it because of caring for my new baby. Her words stung, even though I knew she didn’t mean for them to. Had I neglected my husband because of all of the commotion surrounding my pregnancy and baby? She continued to talk me though kidney disease and told me that it would be a long, hard, expensive road, but that with the proper care, this wasn’t a death sentence. Then she hugged me and told me to not feel guilty about going home to nurse the baby. She said formula was expensive, and she didn’t want me to stress out and lose my milk. And there it was. The diagnosis that changed everything.

I don’t blog about what I call “kidney crap” very much, because I don’t talk about it that much in real life. While it has completely changed our lives, I don’t want it to define us. If I focus on the kidney crap, I find that I can’t function. If I just treat the daily medications, the weekly injections, the monthly blood work and the quarterly doctor visits like a part of our normal routine, I can make it through them all. And unfortunately, it is our normal routine now. But I felt that it was important to reflect on where we were one year later. It’s something that I’ve rarely discussed in the past 12 months. It’s difficult, and somehow a year later it still makes me very emotional to think or talk about it, but I don’t want that fear and sadness to own me.

So one year later, we’re still surviving. Mike feels pretty good overall, but I know he puts on a brave face many, many days when the medications are making him feel terrible. He has rarely complained; I guess I’ve done enough for the both of us. I never imagined that I would live out the “in sickness” part of our vows starting at the ages of 26 & 29. It isn’t fair to see all of the other CKD patients. They’re old and usually fat. They have diabetes. They’re the people you think would be sick.  So it’s not fair to see Mike sitting next to them in the waiting room, but then again, like everyone’s momma always said, “life isn’t fair”.  We’re hoping to get the long process of applying for a transplant started this year. So that’s that. Our new normal.

As much as I questioned God’s timing with this diagnosis coming right after Lincoln was born, I know that there was a reason for it. Mike is so in love with his baby boy, and I know that the joy of being a father has helped him through the difficulties of the past year. For me, there have been so many days that Lincoln’s smile was the only thing that could lighten my mood. Just another way that he has enriched our lives.

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7 thoughts on “One Year of CKD

  1. Heidi – this had me in tears. I envy both of your strength in this life situation and will continue to keep your family in my thoughts and prayers.

  2. I am so happy to have you all as family. You both are such influences in Brian and I’s life. You have done a wonderful job of being a mom and wife. Your boys are lucky to have you. Mike is stronger than most of us know and will get through this. I know about 75 people who would be willing to give him any body part he needs….(Need a knee cap? Here ya go!)

    ~ We love you

  3. Heidi, we do not actually know each other, but after reading this I feel so very close to you and your family. I am a hemodialysis nurse. I have a passion for my patients and feel the pain that you are living daily. Thank you for sharing your story. I will pray for you and your beautiful family as you embark on the exciting, frightening new journey of transplantation. I have seen so many successful transplants and it is such a reminder of God’s pure awesomeness. Stay strong and know that miracles do happen!
    <3 Cori (Steph's friend Mary's friend)

  4. As your BFF and knowing in detail the load you’ve born this past year, the most important thing I have to say to you is I’m so proud of you and Mike. I’ve heard all your whining/crying/frustrations and I still believe that you have had an incredible attitude through it all. Love you always.
    -steff

  5. Thank you. For being so honest. For letting us all in. For sharing that side of life and the strength of Mike. For reminding me of what is first.

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