Miriam Gilman was only thirteen years old when she was diagnosed with Lupus, an autoimmune connective tissue disease that can affect any organ in the body. It began with a massive hematoma, a mass of clotted blood that forms in a tissue, organ or part of the body as a result of a broken blood vessel. Fortunately her family doctor sent her to a prominent hematologist who diagnosed her case quickly. Damage had been done to her kidneys, but no other signs were visible.

When you are young, you think you will live forever, says Miriam, I did not realize I was that sick. 

The illness affected her at an early age, I was accepted into Prozdor, the High School division of Hebrew college, but couldn't go because I was so tired. This was the first time that Miriam discovered she might have certain limitations. She finished high school and continued to college where she obtained a Phi Beta Kappa degree in chemistry.

Although often very tired, Miriam wanted to live a normal life. She married and, even though doctors advised against it, had two children. Miriam wanted to make an impact on the world, at first desiring to be a research biochemist. Besides joint pain from the Lupus and feeling lethargic, Miriam did not think much of anything else was wrong. That is, until a physical for a job revealed albumin in her urine and this prevented her from being hired.

At this point Miriam decided to keep her illness to herself. I felt that I had a stain on my background. My husband did not tell his parents. I felt something shameful was wrong with me, confesses Miriam.

It was not until her 40's that Miriam begun to feel the physical affects associated with failing kidneys. When her ankles started swelling she credited it to her age. I thought that is just something that happens as you get older, Miriam explained.

Meanwhile, her creatinine levels were climbing. The hospital she was attending was going through a change in their nephrology department and was disorganized. Every time she went to the hospital she was seen by a different doctor. She followed a friend to another hospital where she finally found the treatment she yearned for and deserved. Trying to avoid dialysis, Miriam was given cytoxan, a cancer treatment that unfortunately did not halt the progression of her failing kidneys.

At 46 she was constantly nauseous, did not eat and basically felt sick. She went on disability leave for a short while, and then finally had to leave her marketing job. It was when she became disoriented and driving became dangerous that she finally decided to cleanse the toxins from her blood through hemodialysis. The doctors inserted an access into her lower arm and when she lost feeling in her hand, the access had to be removed. A catheter was inserted into her chest and worked for a while before it became infected. Many of her access associated problems were due to her small veins. Home hemodialysis also failed. A permacath^© was attempted, but kept falling out. She just wanted a working access, it did not matter to her how many scars were left on her body.

Three years and 21 surgeries later, Miriam had had enough. Dialysis was just not working for her and she wanted a transplant. At first she had given all the power of her healthcare over to her medical team. I had a take care of me attitude, Miriam confesses. She began to read more about dialysis options and the kidneys. When meditating, I envisioned hemodialysis as little plumbers adjusting the pipes in my kidneys.

During these years, Miriam was very active. She joined a support group through the Kidney Transplant and Dialysis Association (KT/DA), volunteered for a patient care committee and was part of the Lupus Foundation. While on hemodialysis, she went on a cruise to the Mediterranean and visited both east and west coasts of Florida, dialyzing in centers there.

Through her personal research, she viewed peritoneal dialysis (PD) patients as having more control and she liked the concept. For nine months Miriam performed her own peritoneal dialysis. During this time, she and her husband traveled to Bermuda. But her access became infected and the tubing had to be removed. Put back on hemodialysis once again, an access was placed in her upper right arm. For two months she felt great with dialysis. She even dreamt about going horseback riding. But her access clotted and could not be reestablished.

Another permacath^© was inserted, but the doctors missed her vein and hit an artery. I woke up with doctors surrounding me; it felt like I was waking up in hell. They worked very hard to save me. Miriam explains her experience, at one point in time they woke me up to sign a permission form to perform more surgery to remove a blood clot from my right arm, and I asked that no unusual measures be taken. After being in ICU for three days, Miriam survived the ordeal. This was my lowest point. I didn't even feel like praying.

Miriam went on the transplant list in Boston and Pittsburgh, but the list was very long. One hospital said she probably would not receive a kidney. Because of her lupus, auto-antibodies would reject a transplant. Miriam would not accept that answer. Opting for a second opinion, Miriam went to another hospital. This time the doctors informed her that transplantation was an option for her. Patients have to be their own advocates. Miriam contends, don't take "no" for an answer. The doctor of one of her friends whose daughter had a congenital kidney problem suggested that Miriam go to Massachusetts General Hospital to consult a well-known nephrologist. Meanwhile, an access was inserted into her groin and she suffered another hematoma episode.

Finally, her patience paid off, and in December of 1995 at four in the morning, she received a kidney transplant. The kidney came from a thirteen-year-old boy in Minnesota who had expressed his desire to be an organ donor to his father. After she received her kidney transplant she awoke the next morning ready to conquer the world. She was on the phone calling all her family and friends telling them she received a kidney. Her transplant was successful. It began working right away. Throughout those three years on dialysis, she knew to never give up. Even though she was tired all the time and at times her husband had to push her to go out, Miriam knew she wanted to see her daughter marry and the birth of her granddaughter.

Miriam began painting when she was ten years old and now with her kidney transplant she devotes all her time and energy to her art. While using meditation and visualization to calm herself during dialysis, she would envision lily ponds as her safe, peaceful place. Thus, lily pads and koi (Japanese carp) are the subject of many of her works. Her illness got in the way of her dreams and she was not able to commit herself fully to painting. When I finally got my kidney I joined a gallery and now I put on many shows.

Miriam wants to tell other patients in her type of situation, be patient; it may take a while. Keep your faith and your strength. Take your medications and follow your diet. You want to be ready when the time comes for your transplant.

Her new passion is to paint shoes. Keep on strutting Miriam!

To view Miriam's artwork, visit her Web site at www.gilmangallery.com. 

This article originally appeared in the May 2003 issue of aakpRENALIFE, Vol. 18, No.6.

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