The Breath of Life: Thanks to Organ Donor, Scleroderma Patient Lives On

It was in late November 1998, I was a 24-year-old mother of two children who was noticing that my right index finger was turning a blue/ purple color. I finally decided to go to the doctor.

What I thought was going to be a diagnosis of “you need more exercise” turned out to be Raynaud’s Phenomenon and with an ordered blood test also received a positive result for Scleroderma. I was in shock, the only other time I had heard of this disease was a few years earlier when I watched the movie ” For Hope.”
Life continued. I got married, became a step-mother to three children, became pregnant and had a healthy baby boy, even after doctors said getting pregnant wouldn’t be a good idea. As time passed I noticed Raynauds was in both hands and feet, my facial features were changing, and the body aches were getting worse. In 2005 I noticed that I had developed a cough that I couldn’t get rid of. My rheumatolgist ordered a pulmonary function test, X-rays-CT Scans and he said the words I was dreading…”You have developed Interstitial Lung Disease/ Pulmonary Fibrosis.” With this new diagnosis came more test, more scheduled visits and of course more meds including breathing treatments. I had also noticed my issues with heartburn getting worse, soon after this I was told that I have GERD.
My health was getting worse but at this point it didn’t seem to bother me, I continued with everyday tasks & hobbies. It wasn’t until 2009 I seemed to be getting short of breath easier and faster when doing daily chores. I told my pulmonologist about my new symptoms and he ordered more testing, I left the clinic that day on Oxygen 24/7 and a wheelchair more scheduled appointments. The lung disease seemed to be progressing and medications were not working, at this point I was order 6 months of Cytoxan infusions or Chemo Therapy to help slow the progression.

At the end of my treatment phase doctors concluded that it did not help and I heard the words ” you’ve exhausted all treatments to stop the progression, I’m referring you for transplant.” At this point I believe I realized how sick I was and it would only get worse. Simple everyday life was getting hard, walking, talking, laughing, bathing–it was all too much at times. I was evaluated at UTMB and accepted for a double lung transplant in Galveston, TX on May 9 2013.

In September of the same year with the sound of tears in her voice my nurse-coordinator notified me that the lung program was closing and I would be referred to Houston Methodist. A few months later after evaluating for Methodist I was accepted into their wonderful program as a high-risk candidate. Time passed by, Houston road trips in the early morning hours for exhausting pre-transplant tests and clinic visits, declining health, failing lungs. In February I heard the words from my rheumatolgist ” Chronic Respiratory Failure.” But even after all this, life continued.

I toted my oxygen tank around while at the same time being pushed around in my wheelchair. After having one of the best breathing days I had in while, after being able to get out to a movie, having lunch, while shopping for a planned Easter party the following Sunday, on the evening of April 4, 2015 I recieved the call that there is a possible match for lungs, please come to the ER.

I can’t explain all the emotions I went through for the next few hours waiting to hear if it was a match. The words I had been praying for came “it’s a match, we have perfect lungs for you.”

I was taken into the operating room and recieved a double lung transplant on Easter Sunday April 5, 2015. I spent twelve days in the hospital. I was discharged from the hospital with no oxygen, so many meds and a feeding tube that was placed a few days after transplant. I was placed into the hands of my wonder family, who continues to this day to help me recover at home and with regular scheduled clinic visits.

I’m almost five months post transplant, i’m currently walking, doing bleachers, and riding a bike as I get ready to participate in the Stepping Out To Cure a scleroderma walk in Houston.
I’ve received a letter and pictures from my donor’s family through the Life Gift Program, we connected through Instagram, talked on the phone, and my husband Joe and I had the pleasure of meeting them on August 14 in Galveston Tx. After spending the day with them laughing, crying & sharing stories of my beautiful 12 year old donor Ben it was very hard to say good bye. I’m currently making plans for a road trip to visit my new family, to whom I’m so grateful for making the decision to donate life.
I continue to fight Scleroderma, Systemic Sclerosis-CREST Syndrome everyday along with another underlying diagnosis gastroparesis. My story isn’t over, my new lungs are just part of my journey.  These beautiful new lungs have given me the opportunity to raise awareness for this awful disease and for the wonderful gift that is organ donation. I plan on taking full advantage of that in any way that I can.