I worked as a back office medical assistant nurse in an outpatient specialty department. On December 22, 1997 (when I was twenty-four years old) I was rushed to the emergency room at Holy Cross Hospital with severe flu-like symptoms. From the time of arrival to the hospital, all my vitals had dropped and my condition worsened.
After twelve hours, the medical staff concluded that an unknown virus was attacking my heart. I had every type of doctor working on me, but despite their efforts, my body continued shutting down. My family was told I probably would die that night.
Fortunately, I made it to the next day and a decision was made to transport me to UCLA medical hospital. An aortic balloon pump was inserted into my right groin area, in hopes to keep me alive while being transported to UCLA. Upon my arrival, I immediately underwent a nine and a half hour open heart surgery and I was placed on a bi-ventricular mechanical heart machine.
I was no longer conscious and remained in a coma-like condition for about two weeks. My lungs, liver and kidneys had all failed. I was put on a ventilator and complete life support. I had five open heart surgeries, and suffered severe nerve damage in my right leg. Eleven days (or so) later, my heart was taken off the machine and all my organs started functioning normally again. Six months after my release from UCLA, I returned to work part-time, and tried to resume the life I once led.
I started noticing pain in my fingers and a major change of color in them. My hands seemed weaker, especially in the cold. I went to see a rheumatologist at my work and he diagnosed me with Raynaud's Phenomenon. Soon after, I noticed my symptoms getting worse. Simple tasks were becoming more difficult for me. In March, the skin on both of my arms became very itchy and started to tighten. Within two weeks, my skin felt so tight, it was extremely painful and certain motions were becoming more debilitating.
I really started to worry once I could not hold my toothbrush or tie my shoes. My hands and fingers felt so cramped and the skin seemed so sensitive. I immediately called my cardiologist (Dr. Hamilton/Dr. Schwinger) naturally thinking this might be an aftermath of the heart failure (myocarditis) I suffered a year ago. They both said it most likely has nothing to do with my past illness. I went back to my rheumatologist, and that's when he said I might have an auto immune deficiency disease, called systemic scleroderma.
He referred me to a Dr. Clements at UCLA, who specializes in scleroderma. Unfortunately, the wait to get an appointment was too long, and with the rapid spread of the disease, I knew I should not wait. I was able to get an appointment right away with Dr. Ken Kalunian, who also specializes in scleroderma and lupus.
After a few blood tests and a skin exam, he was definite on the diagnosis and wanted me to see Dr. Clements right away. My parents, boyfriend and I met with both specialists, where they discussed the possibility of me having a new research protocol Stem Cell/Bone Marrow Transplant. They were very concerned with the rapid progression of the tightening of my skin in one month, so they concluded if I waited too long, my organs would be affected and I had a good chance of dying within five years.
They urged me to be cautious and not make a hasty decision due to the tremendous risks involved in having the transplant. Only one other person (at UCLA) had had the transplant for scleroderma,and he had died during the procedure.
Naturally, I was scared and unsure, and so was my family. But not having the transplant seemed more detrimental and would be an uncomfortable, painful, debilitating way to live. There was no promise of curing the scleroderma, but I was guaranteed that my pain would stop and that my skin would eventually soften.
We talked, prayed and cried…and in the end, I decided to go ahead with the transplant. At this time, I met with Dr. Mary Territo, who would be my oncologist and in charge of my daily care. A lot is involved prior to transplant: many blood tests, a bone marrow aspiration, lung function test, EKG, and even a cardiac stress test to determine if my heart could tolerate all the chemotherapy, radiation and ATG.
I had a few days of injections to stimulate and increase my stem cell count quickly. I then went to a clinic to have my cells harvested through a machine. A doctor inserted a catheter in my left groin area so they could hook up the machine to my catheter to sort out my stem cells and then give me the rest back.
Once my count reached a certain level, I was ready to go forward with admission to UCLA hospital. After I was admitted to the oncology floor, I had a central line catheter inserted into my chest, followed by two days of high-dose chemotherapy and two days of full-body radiation. I also had a few treatments of a medication called ATG.
All of this was to help my blood counts reach zero. Once that happened, they gave me back my stem cells through the catheter. It was during that time, while waiting for my counts to go up, that I was in the most danger of dying. The third week I was there, I developed a large amount of fluid in my lungs and had an infection, and with my blood counts up and down, my body had difficulty fighting it.
I needed a lavage done on my lungs (a bronchoscopy) and a lot of IV lasix to try to remove the fluid. I had trouble breathing and I felt very scared that I was not going to make it. Thankfully, a few days later my lungs started to clear and my counts were back up. On July 3,1999, I was finally released to go home. After being there for a month, I was ready and excited.
I can honestly say that I could not have made it without the constant love and support I got from my family. Each person played a valuable role in my recovery. My mom and boyfriend took turns staying with me during the nights, and the rest of my family (father, sister, brother, sister in-law, etc.) who comforted me during the long days. I am so grateful to all the loving friends I have who supported me during this.
My hope is that others who suffer with this disease find the courage to have the stem cell/bone marrow transplant. If the doctors can learn more about fighting and curing scleroderma, then my decision to have the transplant and go on living is worth the fight.
In closing, these rapid-onset illnesses almost took my life twice, and I have survived both, learning how precious life is and how grateful I am to still be here. Now I'm ready to live my life and hopefully make the most of it.
Email: [email protected]
Story Posted 10-24-99
Story Artist: Shelley Ensz
Radiation and Scleroderma
Stem Cell Transplants for Scleroderma
Glamour Magazine featured California scleroderma patient Jennifer Weldon in their October 2000 issue.
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
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