Is COVID over yet? My life has been stalled!

Today, I want to write about my sister. I have seven siblings, and Kathleen, is my only sister. She was born a couple of weeks before the start of my junior year of college. The age difference between my sister and I is the same as the age gap that our mother and I share. While we may be divided in age by 2 decades, we are the only siblings who have endured an array of medical issues. But, for her, COVID has held hostage the next step in improving her health... a kidney transplant.

She has been isolated at home since the country was shut down in March as the threat of COVID became a reality in the US. With the exception of occasional visits with her best friend, and parental demands that she only visit with her boyfriend at our parents' home where she lives, the walls of social isolation have closed in. This should be the prime of her life, right? Who would not want to be 25 again with perfect skin and a bright future ahead? But, given Kathleen's fragile medical status as a kidney transplant patient who now needs a new kidney, she has been kept in the house and isolated to protect her from the possibility of contracting COVID.

Kathleen had been truly blessed since her first kidney transplant at age 9. At the time of her first listing on the transplant list, she was not requiring dialysis, but the writing was on the wall that it was coming. Given the extreme difficulty of controlling her underlying condition and the rate at which it was destroying her kidneys, Kathleen was listed for transplant in December of 2014. The constant pouring of proteins out of her kidneys quickly rendered them unable to perform their necessary function. What had started as a precautionary listing soon became a necessary one as she required dialysis by January. My parents quickly stepped up to the plate as they both learned to care for their sick child at home. They learned to operate and provide her nightly dialysis at home. Every needful detail was taken care of to protect their youngest child.

Children are listed on the transplant list with a higher priority than adults being listed at the same time. They essentially enter the list with more points. Points are earned the longer someone awaits a transplant on the list. Kathleen received a transplant in April 2015. She was blessed to have only waited a little over 4 months for the call to come stating that an organ was available for her. Given her young age at time, our parents had been encouraged to use a donor kidney as opposed to a living donation for a relative or friend. Kathleen's donor was an extremely successful young woman. A MIT graduate and only child who was the vice president of a company in Southern California. Tragically, she was hit by a car while jogging near the beach. You see, that is the strange thing about waiting for a donor organ for a loved one. You know that someone has to die. It is sobering to understand that as you share the joy that your loved one has been given the gift of life, that the other family is experiencing an unimaginable amount of pain, grief and loss. Through correspondence between our family and the donor family, we had learned about the remarkable young woman from her parents. They had even sent a picture of their beautiful daughter. Kathleen has continued to keep that photo framed in her bedroom. Her donor is certainly not forgotten. We have been grateful each day for her wonderful gift of life.

What a gift it was! Kat did amazing. She did not require admission to the hospital for years after the transplant. She resumed "normal" life for a kid. She graduated from high school and came to live with me in Georgia to attend college, but transplanted organs do not last forever. For a kidney, the average length of function after transplant is 10 years. As that 10 year anniversary approached, Kathleen was doing well, but her blood pressure was starting to rise. She was "smoldering" per her physicians. We understood that the time was approaching when her transplanted kidney would cease to function, but it was uncertain when that would occur. By year 14, her blood pressure was unmanageable. She had multiple hospital admissions for a variety of issues. It was time to go back on dialysis and to again be listed for transplant.

The benefit of having 7 siblings comes into play at this point. And, around March 2020, our brother was identified as a potential kidney donor. Bad new was that the transplant program was shut down in Southern California due to the new pandemic (Thank you COVID - not!!). What timing, right? While dialysis can sustain life, spending 9-10 hours a night tethered to a 60 pound machine is not pleasant. The tubing only is so long. Image being unable to reach the toilet while hooked up to the machine. Kathleen did endure this humiliating experience while visiting family. You really do end up losing most or all of your dignity when you have a chronic illness. While COVID not only was potentially lengthening the time Kathleen would require dialysis, she developed peritonitis (an infection in her abdomen). She was very ill. She responded to antibiotics and her very caring kidney doctor was able to work with her infectious disease doctor to spare her another surgery to remove her dialysis catheter. The infection heightened our awareness that dialysis, with her catheter surgically placed in her belly, was a ticking time bomb for complications.

It too had not been lost on us as the pandemic spread that Kathleen needed to be protected as much as possible from the virus. My family cancelled our Spring Break trip to my parents' home. Family who lived in the area stopped visiting. Kathleen was not allowed to go to the store or her boyfriend's house. Outings mainly consisted of trips to the doctor or waiting in the car while our mother ran into the store. And, there were all of those Starbucks drive thru runs. Talk about social isolation!

I had experienced true social isolation after my stroke in 2013. I went from being a busy "young" professional with 3 young kids. I loved my work as a neonatologist. It was tough and required a lot of focus and endurance. I also had a preschooler, 2nd grader and a 3 year old at home. I didn't know what boredom was nor did I ever feel isolated. Then, with the stroke, loss of vision and inability to drive came "home prison". I could not go anywhere by myself. My career was gone. I ran into things around the house. I fell. I could not read. The side of my body on which I was blind was covered in bruises and scrapes. I felt trapped in my own head. It was a very difficult and tragic time in my life. A work colleague told me that if she were in my place, she would just curl up in a ball in bed and never get out. I did not see that as an option. I knew that how I handled my new struggles would not only impact my progress, but would also have a significant impact on how my children handled stress in their lives.I knew that I needed to keep myself busy at home, so I found new hobbies. Some were designed to help me use my right hand more. I started to make hair accessories for my daughter. I focused on an online reading application designed for individuals with my same visual impairment. I set about studying for my neonatal-perinatal boards (OK, so I was living a little bit in the land of denial). I actually did not let myself just slow down and recover, which initially was a huge mistake.

While I felt the effects of "home prison"/ social isolation, my choice to try and use it to my advantage, raised my spirits and gave me purpose. Experts says that the negative effects of social isolation can be improved, if a choice is made to use the time for self reflection and improvement. While the feeling of being social isolated can lead to increased psychological stress, depression and worry, I found that being hopeful and believing that I could improve through my efforts to keep "moving" in a positive direction helped me to cope. I tried to stay positive, although it was difficult. I made small goals for the day. It could have been something as mundane as organizing my sock drawer. But, with each new task that I undertook and accomplished, I found that a sense of achieving a goal kept me focused.

As the years have gone by. I have become very proficient at home based goals, but learning to deal with the feelings of social isolation and needing more human contact took additional steps. I have learned to be more open. I now share more with my friends. I am an expert talker on the phone and via FaceTime. My little nieces and nephews love to come to Aunt Kelly's house. I have also been able to serve neighbors in their time of need. Things that I never felt that I had time to do when I was working so much now allow me to serve others in a new way. It has truly filled my heart and filled in some of the empty space left by the losses gained from my stroke.

Understanding how lonely social isolation can be coupled with California starting to reopen, my kids and I planned a trip to see my sister. It ultimately came as California was shutting down again in July. The scorching heat of the Palm Springs area with its daily temperatures ranging between 110 - 120F left any outside activities out of the question. Even the dog groomer wanted the dogs carried into her shop given that the temperature of the sidewalks could burn their paws. It was a living sauna. But, we made the most of it. Kathleen, just as I did, needed the time together. I knew what she was facing with countless hours in her bedroom. While only take out was available from restaurants, we tried new places. We tried new recipes and cooked together. We watched Netflix and HBO shows. There were many a Starbucks run for our favorite drinks. We spent time as family. It was what all of us needed.

As an added bonus, the call came that the evaluation for our brother to be a kidney donor was going forward and would be scheduled. He will be traveling to California in August to continue the process. With fingers cross and lots of prayers, we hope that in the next few months that she will be transplanted.

I am not sure how long this pandemic will last. I know there are those who do not have the support of family or friends. There are many who were socially isolated long before this horrible pandemic was raging. I also know that there are wonderful resources online. So much at our fingertips whether it is an online support group, targeted Facebook pages or a even an online bookclub. There are many online therapy and counseling options for those who are struggling with psychological issues. The options are really unlimited at this point and will only continue to flourish.

The truth of the matter is that we all have felt isolated during this time. And, while I may joke that I need a break from my kids, I know I am lucky to have the laughter, and the fighting, filling my home. But, I am also convinced that at least for the first few weeks after school resumes at the end of the month that I will enjoy the silence.