Doris Razo

When I was diagnosed with scleroderma “SSC”, I had no idea what was in store for me. In January 1998, I was an active, vibrant 39-year-old single parent with an exciting career as a Chicago police officer. Raising my two daughters and working the graveyard shift kept me busy. One night while I was working, I noticed a strange numbness in my fingertips. At first I attributed this to the extreme cold temperature. I decided from then on to be more conscientious about wearing gloves. After a few weeks I noticed the numbness became painful and tingling. I didn’t think it was serious so I self-medicated with Advil or whatever was available. When the pain began to worsen, I had my blood tested for arthritis. The results came back abnormal, and further testing was recommended.

In April 1998, I made an appointment at the Chicago Rush-Presbyterian Hospital arthritis clinic. I wasn’t nervous or worried because I was sure that whatever I had could be treated with medication. Finally my name was called. The nurse jotted down my weight and blood pressure. The doctor came in and I described my symptoms. She looked at my fingernails through a magnifying glass. She then dripped an oily substance onto the nail bed. It was after this test that the doctor informed me that I had SSC and proceeded to describe the disease. This was the first time I ever heard of this disease. She said no cure was available and that it could be fatal. Because there are several forms of SSC, it was hard to tell what type I had since it was in its early stages. She advised a treatment of D-Penicillimine. She then placed a call to another doctor to find out the dosage. At the end of my visit she told me to read as much material on the disease to better inform myself. I felt
like I had been given a death sentence. I was confused and refused to accept my uncertain future.

For the next two years, my health took a turn for the worse. I was metamorphizing into something out of a sci-fi move. Only it was real, not a dream as I sometimes wished. I tried all kinds of treatments, conventional and alternative. Nothing made a difference in my downward spiral. My weight went from 150 to 87 pounds, my fingers contracted, I had trouble breathing; my digestive system was affected, along with my skin, hair and teeth, not to mention the constant pain.

I had heard about an experimental stem cell transplant for SSC and felt it was my only recourse. The doctor involved with this treatment was Dr. Daniel Furst in Seattle, Washington. I contacted the nurse assisting him at that time in January of 2000, Gretchen Agee. Since candidates were screened and only a few selected, I was praying that I qualified for the transplant. Gretchen Agee asked me to fax a synopsis of my condition and promised that the doctor would read it and she would call me back. At last I got the call I was waiting for. I qualified for the procedure. That was just the beginning of a series of interviews with Dr. Daniel Furst and Dr. Leona Holmberg.

In February of 2000, I travelled to Seattle to meet with Dr. Daniel Furst. He was very knowledgeable about SSC and answered all my questions. In March, I met with Dr. Leona Holmberg, one of the doctors in charge of the medical team. They stressed the possible side effects, i.e. kidney/lung failure, blindness, etc. including death. I was ready because I knew my days were numbered. The protocol involved radiation combined with chemo. The hospital stay would vary from three weeks or more depending on my recovery. I was required to reside in Seattle for approximately three months in close proximity to the FHC clinic. I had to bring a caregiver to assist me in my recuperation and visits to the clinic. It was a hard decision but I had complete trust and faith that all would turn out fine. Finding a caregiver proved to be the most difficult. Even though I come from a family of seven, no one could take leave from their jobs or commitments. Miraculously, I spoke with a childhood
friend who volunteered to come with me. I could not believe the sacrifice she would make to do this for me. The last obstacle was waiting for the insurance to approve the procedure. This was the most nerve wrecking. But that came through for me as well. So now I had to make arrangements for my daughters to stay in Chicago to continue school. I closed up my home and in April of 2000 my friend Paty and I were bound for Seattle. This is where my story begins.

I arrived in Seattle on April 18, 2000 and settled into my apartment. The next day I had an appointment to meet with one of the doctors to go over the procedure and possible side effects. The following two weeks involved extensive testing to determine my physical ability to handle the procedure. This included an endoscopy, EKG, echo, lung function, gastro bariam, blood work, bone marrow biopsy, etc. Once the base work was established the first step in the process was having a double line catheter inserted into my chest. This would stay in throughout the treatment and served a double purpose: to administer drugs and withdraw blood. This procedure was completed on May 5, 2000. Caregivers are required to attend classes to learn how to flush the lines and change the bandages daily.

I should mention the volunteer system in Seattle is fantastic! A volunteer family or couple would be assigned to you upon your arrival. They would take you shopping, to appointments or assist you in all your needs. There were also activities available for families to go to such as: ball games, opera, boat rides and so forth at no cost to the patient and family. This helped alleviate the mental stress and boredom. Keeping my focus on improving my health also helped take my mind off the pain.

On May 5, 2000 I was admitted to the Swedish Covenant Hospital to begin the process. The room I was given had a beautiful view of Mt. Ranier. The first procedure I had was a test for a drug called ATG, to see if there was any adverse reaction. Thankfully there were none. The type of transplant I chose is called an autogolous transplant, which involves using your own stem cells versus the donor transplant which is more costly, and requires a bone marrow match. There is also the risk of GHDV (or) body rejection. Prior to admission I underwent feresis where my stem cells were removed and stored in preparation for the transplant. Radiation shields were prepared and custom fitted to protect my lungs.

On June 7, 2000 I began a series of radiation treatments. There was no discomfort during the administering of radiation but I did get very nauseous afterwards. I received round the clock care by a great team of doctors and nurses. To offset the nausea I would eat small portions of bland foods. In addition to radiation I was given chemotherapy. Of course my hair fell out but I felt it was a small price to pay. Cleanliness is crucial because of the risk of infection. So I was constantly washing my hands and taking daily showers.

At the hospital computers were offered to patients to help pass the time or to e-mail friends and family. This was a great benefit I took advantage of. Even though I was surrounded by caring and supportive people, I was homesick and missed my daughters very much. But I plowed ahead no matter what. I counted the days until I went home. I had problems sleeping at night so I would tease the doctors saying now I know where “Sleepless in Seattle” comes from.

On June 12, 2000 my “so-called” 2nd birthday, my stem cells were returned to my body. My volunteer helper, Melissa came by with balloons and a card to celebrate! After a few days I noticed my skin got darker from the radiation followed by peeling. On the 13th, I started the ATG phase, which gave me headaches. Nurses would check on me every 3-4 hours, even throughout the night. I handled the procedure very well and was ready to get discharged around June 22, 2000. However, I developed a slight fever and ended up in isolation for five days. This was no fun since by this time I was ready to get back to my apartment for some real rest. Finally, I got discharged right before the 4th of July and I was ecstatic. My daughters were out of school and came to stay with me and my father was care giving at this time. I was very happy. I was given record sheets to keep track of what I ate and drank on a daily basis and made daily trips to the clinic to do blood work and monitor my
health progress. I was given strict instructions about not eating foods that were already prepared such as buffet foods or carryouts.

My last week in Seattle was July 21-27th and I finally returned home! I did have a few adverse reactions. The skin on my hands began to peel off and I lost the tip of one finger due to necrosis and I developed unusual acne on my face. I didn’t notice any immediate improvements at the time. However, after my one year follow-up there was a 25% improvement in my lung function which was a great sign. It’s been three years now. I no longer get finger ulcers, I can reach my feet, I can straighten my arms better, I’ve gained weight, a whopping 106 pounds, and my digestive system has improved. These are all great improvements. I still have contractures in my fingers and knees and have osteoporosis. However, I don’t have as much pain in my muscles and joints as before. I am able to perform more activities now. I’m on minimal drugs, ultram for aches and prilosec for heartburn. I have more energy and strength and don’t tire easily! As an example, I can spend a few hours at the mall, non-stop! I believe this procedure saved my life. I especially thank the doctors responsible for conceiving the idea of using the stem cell transplant for SSC!