‘Don’t go home, don’t stop for lunch. Go to the ER now.’ This joyous event was clouded over. We had no idea what to expect.’: Mom diagnosed with kidney disease, ‘My child saved my life’

“There we were: the happy newlywed couple. We had been married for just over a year when we had decided it was time to move from our small one-bedroom apartment in Brooklyn, New York to a two-bedroom suburban apartment in the great Garden State, also known as New Jersey.

In April of 2006, we packed up our cat, Jasper, and left the Big Apple. The move was tough for me, and I couldn’t figure out why I was feeling extra tired all of the time. I kept getting lightheaded, and just felt very drained. I also kept running to the bathroom every 5 minutes. The cat was very upset with me about that.

My shoes wouldn’t fit, and my face was starting to look and feel puffy. But my husband and I thought it was just some water retention. I was still feeling weird about it, and I thought it was stress from the move, which our cat was exhibiting and taking out on me. Then I realized I was late. Yes, I was ‘late.’

A couple of home tests later (with one taken by my husband as a ‘control sample’ to be safe), and we discovered I was pregnant! To say we were happy would be an understatement. Our cat was less than enthused, and we had to place him for adoption, as the change in living arrangements and my body chemistry were too much for him to handle. It was sad to let him go, but we knew he would find a great home and someone would adopt him quickly.

It was at the women’s clinic our parade started getting some rain. The doctors took their samples from me and confirmed I was pregnant. They also noted there was protein in the urine sample. I didn’t think anything of it since I had eaten a protein-filled breakfast that morning. The doctor informed us it was a sign of kidney failure, and that bumped me into the High-Risk Pregnancy category.

So now, this joyous event, something I had hoped for from a young age, was clouded over by kidney disease. Yet in this we had a wonderful revelation: our child had saved my life. Had I not been pregnant, the kidney failure could have potentially gone undetected for several more years, leading to more severe complications. We had no idea what to expect, only knowing our precious child was now going to have to help Mommy fight for her life now too.

Having to prepare for a child was difficult enough. Now, we had to learn about infant care and child seats along with kidney function and treatment options. The stress of pregnancy was bad enough, but to compound it with high blood pressure due to kidney disease was even more dangerous.

At an OB appointment at around 5 months into the pregnancy, we took a long flight of stairs to the doctor’s office from the street level parking lot. As I was getting examined by the OB, he looked over my blood pressure and stated, ‘You’re going to the emergency room. You’re going to be admitted, and you will leave the hospital with your child.’ Apparently, a blood pressure of 200/180 was a bad thing for expectant mothers. The OB also made it very clear we were to go directly to the ER immediately. ‘Do not go home and get things, do not stop for lunch, take your a*s to the emergency room now.’ Yes, that is a direct quote. He was a very caring doctor.

Off to the hospital we went, and there I stayed on the High-Risk Pregnancy floor of Robert Wood Johnson University Hospital, on doctor-ordered bed rest, for the next 3 months. My nephrologists and OB coordinated and agreed once my labs came in looking a certain way, they would have to induce my delivery so we could avoid preeclampsia and the baby could be cleared out so I could begin medication interventions for my kidney disease. My daughter had plans of her own. On the morning we were to begin inducement, I was already dilated 2 centimeters and my daughter was ready to go, prompting my husband to nickname her ‘Turbo‘ for the rest of her life.

The joy of motherhood was tempered, however, by the side effects of the medications I needed to take. I had yet to need dialysis, so my disease was still being managed medically. But the bone pain from the various medications made life hell, especially when I had to get up and bottle-feed my newborn daughter at 2 a.m. Unfortunately, my husband had a job requiring him to work overnight, so he could not help me with the feedings and changes. Suffice to say, we were relieved when our daughter began sleeping through the night and I could rest better. But the medication’s side effects were still so nasty, and I hated every moment of them.

Despite the difficulty of my first pregnancy, my nephrology team knew having another child was still a dream of ours, and we were praying for a son to ‘complete our set.’ Knowing my renal function was still deteriorating, they made sure to monitor my labs on a monthly basis, and we spent an hour driving to the office once a month to go over labs. It was stressful and nerve-wracking knowing every visit would detail the decline in my kidney function. I love being out and on the road, but this trip was one I dreaded every month.

3 years passed, and once we found out we were pregnant for the second time, we were overjoyed. We also knew this would be our last one, as my care team explained my renal function was close to being in range of needing dialysis. As I needed to halt my medications during the pregnancy, it became a race as to which would have to be addressed first: my escalating renal failure numbers, or the induced premature birth of my child.

Unfortunately, my husband lost his job and with it, the wonderful insurance my nephrology doctor accepted. Thankfully, our son was born before I had to change doctors, even though he was born prematurely like his sister, and had to spend 2 weeks in the NICU. Those were the worst 2 weeks of my life, having to leave my baby boy every day and not bring him home. Once we were able to bring him home, however, it was wonderful. I felt my family was complete, and it was the best time ever. I still had the specter of impending dialysis and kidney failure looming over me, but my husband kept me going, and the joy of having my two children made it tolerable.

In early 2010, I was forced to find another nephrologist to continue my care. This doctor was very hands-off, and not as empathetic as my previous team. I still had monthly appointments to hear about the continuing decline in my kidney function, which continued to fill me with dread.

In 2013, I was left to fend for myself in locating a vascular surgeon to place dialysis access, as my numbers were beginning to decline more. I had a graft placed in an odd spot in my arm, and I never saw the surgeon again. July 2013, I began dialysis, and 2 weeks later, I had to get new access placed, as my first one failed. I endured a catheter being placed while my new graft healed up prior to use. The new surgeon was mortified at the previous access and made sure he did his job properly. Thankfully, the graft has been working with minimal interventions to this day.

I was so grateful to my husband for his continued support and work in keeping me sane, and loved I entered an essay contest issued by the American Kidney Foundation for Caregiver of the Year. He was selected as the 2014 winner, and a film crew for the back-story portion of the awards ceremony interviewed us. It was incredible as we were flown down to Washington, D.C. for the evening, and I got to see my husband in a tux for only the second time since we’d gotten married! The children were fawned over by the attendees and presenters, and I got to see my husband get the recognition he never wanted but totally deserved.

I also became a spokesperson for the internal pharmaceutical division of DaVita, called DaVita Rx. They accompanied us on the Washington trip, filming our family and interviewing us for the in-house videos that would be used to promote the service to patients of the clinic. I was so glad my life was being used to inspire others, and it kept me in good spirits for a long time knowing that.

A nurse looking to educate patients on the benefits of home dialysis approached me, and by January of 2015, I was enjoying dialysis from the comfort of my warm bedroom, instead of fighting through the snowstorms of that winter. My husband was my caregiver, and the nurse training us was so impressed by the ease with which he picked up the skills to care for me, she suggested he apply to be a dialysis technician for the company (DaVita). He has been a fully licensed technician for the past 5 years, and it is wonderful knowing I have a skilled professional taking care of me.

We’ve participated in several kidney walks over the years, trying to raise awareness and funding for kidney disease research and treatment with the National Kidney Foundation. During my time doing in-center treatments, I became a Subject Matter Expert for the Renal Network, bringing information and suggestions to the care teams and clinics I’ve been in to try and make dialysis better for patients and their loved ones. I’ve also changed modalities a few times. I tried peritoneal dialysis for a bit, but I had to stop as I developed several hernias in my abdomen, which prevented me from continuing. So I’ve gone back to in-center treatment and currently use home hemodialysis with my husband as my caregiver.

I’ve decided that this coming year will be when I finally make major moves to get myself ready to try for a kidney transplant. I was leery about it before, as I was worried about rejection percentages and Medicare coverage for post-op medications, but quite frankly, I’m tired of needles! I hope everything falls into place and I can join the ranks of successful transplant recipients in the near future.”