Debra Cruz de Groot, RN

(Debra’s inspiring story was revised in May, 2009 following a stem cell transplant and a bilateral lung transplant.)

Three weeks before her marriage, 28 year old Debra Cruz began to notice joint pain, swollen joints, and extreme fatigue. Despite the discomfort, she proceeded with her wedding plans.

One morning, she woke up with Bells Palsy and thought she had a stroke. After four months of testing and exhibiting many varied symptoms, she was finally diagnosed with lupus. She started taking prednisone and plaquenil.

Debra married a man who had two small children, ages 6 and 1 ½ years old. Her hands were full of new responsibilities including fulltime work as a dialysis nurse for an outpatient dialysis company, caring for her new family, and trying to manage her disease. Her symptoms were very noticeable the first four years of their marriage.

Due to taking a high dose of prednisone over a long period, she developed Diabetes, Type II, which requires oral medications and insulin. Each time the doctor increased her prednisone dose, the diabetes became very difficult to manage. After six years, the symptoms finally subsided and her tests returned to normal.

Fortunately, for the next 14 years she didn’t have any significant symptoms and was not required to take any medications. Although her lupus improved and became more manageable, her first marriage ended after ten years.

Debra remarried 16 years ago. Neither Debra nor her second husband, Jan DeGroot, had children. During her first marriage, she had been advised that she should not have children of her own. In lieu of raising children, she and Jan acquired three dogs and two horses. They enjoyed traveling and camping and Debra kept up her home and work responsibilities.

In September 2003, Jan and Debra were camping with their dogs when she noticed a shortness of breath as they were hiking. She had a past history of asthma, but these symptoms were not a familiar experience. In December, her symptoms worsened. Her physician thought she had a severe attack of asthma and prescribed prednisone. Debra noticed improvement.

In February 2004, she returned to her doctor with severe breathing problems and was referred to a cardiologist for an evaluation. She failed the tests and was hospitalized for severe shortness of breath. Her symptoms of lupus returned which included fever, sore throat, fatigue and joint pain. In May, she was again hospitalized; her physicians believed they were treating severe asthma. After having lung biopsies, another hospitalization followed, and test results revealed pulmonary hypertension involving heart and lungs, secondary to lupus vasculitis and sleep apnea. At that point, she was forced to apply for permanent disability. She began a regime that included 24-hour oxygen, prednisone, plaquenil, and the use of a BiPap machine. Debra was now homebound.

In October 2004, Debra noticed severe leg swelling along with shortness of breath. She was hospitalized again for four weeks. Her doctors inserted a cardiac catheter that determined the extent of her pulmonary hypertension and was prescribed diuretics for her swelling. They determined she had a fungal infection in her lungs. Unfortunately, in treating the infection, she had a reaction to the antibiotic and developed pancreatitis. Her symptoms of lupus worsened once again and she began treatment with Cytoxin which required monthly IV infusion over four months.

She then experienced her worst flare of lupus. Because of her significant flare, her doctor increased prednisone and her diabetes again became very difficult to manage.

Over two months Debra was tapered off prednisone. Because of her diabetes flare, two more medications were added--bringing the number of her required daily prescribed medications to 15. Her health has steadily improved. In spite of being on 24-hour oxygen, she was able to walk daily with her husband and three dogs, go shopping, run errands, and do all her regular household tasks. She was grateful that her life was becoming much more normal. In fact, she started part time work at home as a computer program consultant with the company that employed her for many years in the past.

In February 2007, Debra was approved for a stem cell transplant clinical trial at Stanford. To participate you have to have a donor. All three of her siblings were willing to be her donor and were tested for compatibility, and her sister, Lisa Ponce, was the perfect match.

The procedure destroyed her immune system through radiation and chemotherapy. She then received her sister’s bone marrow transplant. She had a very bad reaction to this procedure and nearly died due to a reaction to the chemotherapy. She was hospitalized three months at Stanford. While there she developed two infections simultaneously while hospitalized. She was on reverse isolation---she had to be protected from nurses and when anyone came into the room. Everyone had to be masked and gowned when entering the room.

The stem cell transplant worked for four months after she left the hospital. Her immune system was building up. Quite suddenly, in August of 2007, her blood showed she no longer had the transplant.

In September of 2007 she became extremely short of breath. She was on oxygen since October 2007 continuously, gradually increasing to six liters a day. She became increasingly more fatigued, short of breath and unable to complete her daily tasks. She was hospitalized in October of 2008 at Stanford. At that time her physicians decided that she needed a lung transplant. The physicians at Stanford refused to do the transplant due to her past complications of lupus.

She was referred to UCSF and she was accepted into their transplant program. She was in ICU at UCSF and on the nationwide lung transplant donor list from October 2008 until January 9th, 2009, when she had a bilateral lung transplant.

That surgery went very well. While still hospitalized, she had one infection and a partial collapse of one lung requiring a traecheostomy. She was discharged on February 23, 2009 to a local hotel that houses organ transplant patients. She was finally able to come home at the end of March, 2009.

She is now doing well and is off all oxygen. She is able to do most of what she used to do. She walks every day with her husband and her dog and rides a stationary bicycle. She is able to shop and do her necessary home chores. She is looking forward to being able to swim in her home pool, to work in her garden, and returning to work as a nephrology nurse. She hopes to return to work fulltime by July of 2009.

Debra remarked, “I can’t imagine managing lupus, diabetes and the pulmonary hypertension without the support of my husband, Jan. He has physically and emotionally cared for me, accompanied me to doctor’s appointments, and carried my oxygen around. He is an incredibly supportive husband. I don’t know where I would be today without him. I am so blessed with the support of my family and many friends.

Debra remarked, “Spiritual faith has helped me through these very perilous times. I don’t know what I would have done without Jan, my family and friends.” She continued, “The LFNC website has been very helpful in providing information regarding lupus and treatment methods. Since I have not been able to attend their periodic conferences, I have borrowed from their video lending library. I also ordered medical articles and books that provided very helpful information.

When Debra’s health was stable, she became involved as one of the instructors for the LFNC education classes. She commented, “I get a lot of satisfaction out of teaching people about lupus and empowering them with information so they can become an advocate for themselves.

“Never give up hope. Try to think positive thoughts even though you may have days where you will be experiencing discomfort. On the good days, cherish them, and on the bad days, never give up hope. Keep yourself informed through the resources of the LFNC and be well prepared when you visit your doctor.

Debra concluded, “Lupus doesn’t affect everyone in the same manner. Just because I was affected severely doesn’t mean other lupus patients will be. I remember that I have lupus—lupus doesn’t have me. Utilize the LFNC for information and support and seek regular medical attention. The LFNC’s materials are medically accurate—not everything you find on the internet is current and factual.

On April 15, 2009 Debra was enjoying a brief get-a-way with her husband, Jan, at Chuckchansi Casino in Coarsegold, CA. She was quite excited to win $200 and then her cell phone rang. The caller was Rene Astudillo, the new ED of the LFNC. He notified her that her name had just been drawn as the grand prize winner of the LFNC Spring Drawing--a 7-day Alaskan Cruise for Two aboard Holland America Lines, including R/T air travel by Southwest Airlines. Debra was very surprised to be the winner because she had forgotten that she entered the drawing. She and Jan were delighted and this was certainly one of her luckier days! In fact the next day she won another $200! It’s about time her luck changed!