Successful surgery changes life

SURVIVAL TIP: Listen to your doctors and nurses and be brutally honest with yourself and your medical team. If you notice anything changing or out of the ordinary, ask questions. As labs change, press the doctors for “best guesses” on what the variations mean.

APRIL 2007

While I was recuperating in the hospital, Dr. Chris Fotiatis followed me and oversaw my care. I had no idea then that I would see him again years later. He prescribed ten different medicines that I would take to keep my kidney, liver and heart healthy. All of these organs are affected when the kidneys fail. Initially, I had to take some prescriptions several times each day. Then as long as my kidney transplant was sufficient, I took morning and evening medicines. He set me up well to care for my kidney.

My family was well cared-for while I was in the hospital, as well. One of our neighbors brought us a laundry basket of food before my surgery for my husband to have sustenance while caring for me. She included snack sizes of chips and candy bars. Liz included small sodas and even Pop Tarts! No pesky healthy foods for us! During my stay, Jeff entertained guests and attended to me during the day. Mom stayed nights and went to a friend’s house to eat and sleep during the day. I doubt she rested, but she at least took a break from the hospital.

After I was released from the hospital, Jeff had only a short period of time to stay with me before deploying to Afghanistan. Then friends and family took turns driving me to labs in Charlotte before 9 a.m. Initially the labs were daily, then every other day. The required bloodwork became less frequent as my labs came more in line with what is considered “normal” for a transplant recipient. Knowing that my lab numbers are different after transplant is important anytime I go to an emergency room or see a medical practitioner because lab numbers are significantly different from “normal” labs.

I was slow to stretch those sore, lacerated muscles. But my friend, Bridget, picked me up in May and took me for a picnic at a local lake. It was just what I needed to jump-start my recovery. She was one of many people who took care of me and boosted my mood.

While Jeff was overseas, we talked on the telephone before Jeff went on his shift. We talked one evening in late July about 10 p.m. my time and 6 a.m. his time. I was going to bed, and he was rising to face the day. This had become our practice, and we expected it to be the new “normal” . Then at 4 a.m., a clergyman from the U.S. Army called me. He told me Jeff had been injured in a blast but could talk. The call lasted only moments, but the clergyman told me that Jeff’s Humvee was affected by a suicide bomber bomber blast, an the 14-year-old bomber was the only casualty. Jeff had internal damage and lost an eardrum, but the image that stuck with me was that he might have lost a toe. That made me queasy. I talked to Jeff. He was coherent and said this was the hardest phone call he ever had to make. Knowing he was mentally stable was all I needed to get through the next four days. He was OK (and his toe survived). By early August, he had traveled from the hospital in Afghanistan to Frankfurt to Walter Reed Army Medical Center in Washington, D.C. Bridget and her husband drove me to Walter Reed in two separate cars so I didn’t go alone and I had a car to use while up there. She and her husband were Jeff’s and my best friends.

We lived there for ten months. Fortunately, I had a great nephrologist in Dr. Robert Neff at Walter Reed. Dr. Neff whose specialty was nephrology made me laugh. I suggested this was the job he was born to do! He provided excellent care. Hospital protocol prohibited him from seeing me as a patient because he did not perform my transplant. But he helped me as much as possible, referring me to a nutritionist and ordering labs so that I could fax the results to my doctors weekly and then bi-weekly. Interestingly, the nutritionist told me that their doctors medicate differently, stopping use of prednisone after the surgery. My doctors in Charlotte have kept me on a small dose of prednisone as part of immune-suppressant drugs, even after the transplant failed.

After Jeff was released from the hospital in late August, we lived in family quarters on post (at Walter Reed) until he completed physical rehabilitation. It’s worth mentioning that I helped Jeff with his wheelchair and loaded it in the car when we went farther than walking distance. So I was as strong as ever within four months of the transplant. After several months, he was able to walk again.

Stress can cause IgA nephritis, which is the kidney disease I had. I have always been a busy person, so managing multiple stressors was not new to me. I thought I could handle it, and took recommendations to stop lightly. I started a pet sitting business in 2009, because I thought it would be fun. After four years and only three vacation days in the most recent calendar year, I was tired. Pet sitting was a seven-day-a-week job that began when dogs woke-up in their homes at 6 a.m. and ended when they went out the last time, about 10 p.m. Plus, dogs must be walked one or more times in between. Jeff was incredibly supportive, and I had a successful business. But I didn’t have a personal life, and in 2013, I noticed I was consuming only a sandwich twice each day and two large drinks. Loss of appetite is a red flag for health concerns. Less urination is generally a symptom of diabetes or kidney issues. I attributed all of it to being busy. I lost 40 pounds and attributed that to being busy, too. I wouldn’t realize that my kidney was in serious decline–and apparently my doctors didn’t either– until I had extreme symptoms in April 2013.

Believe it or not, more surprises were in store. And soon I would be back on dialysis.

If you or someone you care about is facing dialysis, please share your experiences and concerns. This is a forum for learning and inspiration. Please share your stories and questions. What were your experiences and challenges with dialysis?

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About dialysisgal

When I joined the 450,000 Americans on dialysis, I wondered what "normal" would be. Would people stare at my access and ask what was wrong? In this blog, I hope to save other patients and their families from the difficulties I have faced. I want to share my experiences, what I learned, had to ask and was shocked to find. I am not a medical professional, but I hope we can have a conversation to help you better understand what you or someone you love with chronic kidney disease (CKD) might expect while living with dialysis.
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