Organ Donation Saved My Life – Twice

eHealth Technologies Blog: Michelle L. Halloran, SPHR, Vice President of Human Resources, eHealth Technologies

Editor’s Note: This is a special edition of the eHealth Technologies blog post that features a personal reflection from our Vice President of Human Resource’s experiences as a two-time transplant recipient. We felt that sharing her story and motivation for her role at eHealth Technologies was important during Donate Life month. We thank Michelle for being open and willing to share her story with our readers.

“There is nothing more we can do for you – you are in kidney failure.”

It was 1996, I was recovering from a three year bitter divorce and emotionally exhaustive custody battle and trying desperately to keep my full time job – but I simply had no energy for anything. I thought I was just stressed or tired, some vitamins or something would be prescribed to me, I was not expecting this.

The doctor was talking more, I saw her lips move but did not hear anything she said. There was buzzing in my ears. I saw the innocent face of my three-year-old daughter float before my eyes and thought, “this is it, I am going to die and not even see her graduate kindergarten.”

What turned out to be the worst most unexpected news I ever could have predicted, really changed my life in ways I never could have imagined.

When I found the courage to tell my family my diagnosis, I thought I would be lectured that I should have taken better care of myself. That something I did caused my diagnosis. Instead, my family rallied. The internet was just becoming mainstream in homes and cellular phones were a portable luxury. Electronic medical records were nonexistent. I had a lot of work to do to collect my recent medical history and deliver it to the nephrology team by my first appointment.

By March of 1997 my two brothers squabbled over who would be my donor. It was almost down to flipping a coin but Michael, the older of the two, was logical and stated he was in a better position in his schooling to take the time off needed for the surgery and recovery. My younger brother Matthew then fondly became known as “the spare.” Michael was studying for his doctorate in Boston, so he was tested there and I was tested in Rochester, NY. Preparing for testing was my second full time job. I was so tired. I should have been on dialysis but refused until I knew if we would be approved. We received the news by summer that my brother was a match and the surgery was scheduled for October – a year after my initial diagnosis.

The day of the surgery certainly was one of the most frightening experiences of my life. The surgical team could not get the Pre Op IV in. I was so tired, probably dehydrated, and beyond anxious. Crying I claimed that I changed my mind and did not want the surgery. In under five minutes I had both surgical teams in my small room and my brother Michael who was prepped, holding the back of his gown together. Nothing the surgical team told me was changing my mind, I remember screaming if they cannot do an IV how can I expect them to transplant an organ? But my brother Michael scolded me and said someone is getting his kidney today, so to make up my mind.

I woke up what seemed like a minute later with my dad feeding me ice chips. I just remember being grateful I woke up. I later found out Michael’s surgery was complicated. They could not get the kidney out laparoscopically and he had 50 staples from his armpit to his hip and they removed a rib to avoid damaging the kidney.

You would think I could now say everything worked out happily ever after. Unfortunately, my story continued.

I never felt great – I actually felt worse. I wished I had not had the surgery and that I did not put Michael through it either. It turned out I had quickly developed PTLD Lymphoma – a post-transplant lymphoproliferative disorder. It is a form of cancer. In the pre-testing, before electronic medical records, it was missed that Michael had been exposed to a slight variation of Mono that I had. With a suppressed immune system, the virus had formed into cancer.

By April 1998 I had to go off all immunosuppressive therapies and start cancer treatments. I was told I would most likely lose the kidney as there had not been a case of someone developing PTLD in under six months of a transplant. I was devastated.

In September 1998 I was declared cancer free and although the kidney was slightly damaged from the treatments, I never went into rejection. The doctors decided to start me on a very individualized modified immune suppressed treatment – to keep the kidney for as long as I could.

Nine years later I was told I was beginning kidney failure. It was not as much of a shock this time – more a deep sadness. Before I could digest the news or decide if I even wanted another transplant or just explore dialysis, my second brother Matthew insisted that he be tested for a match. It was too early though. My kidney failure was not severe enough to be placed on the transplant list.

That fall my health was quickly deteriorating. With the advent of electronic medical records and a few signatures, most of my records were updated to the transplant team with minimal effort. I was responsible though for gathering my images, like CT Scans, X-Rays, and Ultrasounds – but it was a much easier process this time. We also learned my brother Matthew was a good match.

I wish now I could tell you everything went smoothly, but…

I had to have many of the CT Scans, X-Rays, and Ultrasounds repeated because the timing of the readings of the images caused me to be removed from the transplant eligibility list twice – due to mis-readings or as we learned now, poor clinical clarity. Even though the records were simple to update, the images caused quite a few concerns. This time, even though I had to have medical images repeated, it was only 6 months from the time of diagnosis to my surgery.

In April 2010, Matthew donated his left kidney to me. Today, it is on my left side and my family now calls me “Lefte.” When I opened my eyes after this surgery, Matthew was in the room next to me. The first words I heard were “hello beautiful.”

This month I am recognizing my 10-year anniversary since the second transplant surgery. So far, I am doing very well. I do get tested regularly for the cancer. My medicines are a delicate balance and I am very cautious. But I appreciate every day that I have. My two brothers are my heroes. With their selfless donation, I have been able to raise my daughter, see her graduate from not only kindergarten, but grammar school, high school, and her bachelor’s and master’s degrees. I am already planning on attending her doctorate graduation.

Organ donation truly saved my life twice.

Focusing my professional career in a company that supports hospitals that treat and care for transplant patients is very meaningful to me. That’s how you can know that every day I give all that can to support our employees, our customers, and their patients.

To learn more about Donate Life Month visit: https://www.donatelife.net/