The power of hope
This is a story about one woman's struggle to be listened to, her fight to remain independent, and her courage in the face of a vicious disease that threatens to steal away any opportunity to live her life in a meaningful way.
It is also the story of her family, friends, and community and their spiritual and financial commitment in support of her fight.
Inherently it is also about the unenviable position millions of Americans find themselves in, isolated between insurance companies and the medical establishment of this country, forced to seek medical care beyond our borders.
"Over a two-year period, I started having these terrible dizzy spells, losing my balance, and when I would bend my head forward, I would go numb all over. I was losing my vision and couldn't hear out of my right ear. I was 25," recalled Somerset's Barb Rivard.
Rivard grew up in Glenwood City. She has three grown children and six grand children. She tended bar for 19 years, graduated from WITC in 1999, and worked as a scheduler in the physical therapy department at Westfields Hospital & Clinic in New Richmond for 14 years. She reluctantly gave up her position at the hospital three years ago because of her disease.
Ask around and you will find she has a reputation for being independent, some might say stubborn, and she wants to keep it that way.
"I don't want people feeling sorry for me. I've been called bullheaded. For me it's tough, I don't like to ask for help. I was a single mother with my boys for a lot of years," said Rivard.
When she first started experiencing symptoms, her family doctor sent her to a neurologist who concluded she had an issue causing spine inflammation and he sent her on her way.
When her symptoms persisted, nearly costing her her job tending bar, she returned to the neurologist for more testing. At the time, Rivard's mother was dying from brain cancer, leading her to wonder if she might also have brain cancer. Meanwhile, her family physician speculated it might be a brain tumor.
"The tests came back and the neurologist told me I had multiple sclerosis (MS). He said, 'You're a young healthy woman and it will never bother you again.' He sent me on my way, again. At that point, I couldn't see out of my left eye, but I thought, 'Okay good, at least we know something.' I knew absolutely nothing about MS," said Rivard. It was 1990.
What is MS?
MS presents in people in four different ways according to International Advisory Committee on Clinical Trials of MS: clinically isolated syndrome (CIS), relapsing-remitting MS (RRMS), primary progressive MS (PPMS), and secondary progressive MS (SPMS).
Rivard was diagnosed with RRMS.
MS is a chronic disease that attacks the central nervous system, (brain, spinal cord and optic nerves). Symptoms can include loss of vision, pain, fatigue, muscle spasms, impaired coordination, and numbness in the limbs. In severe cases, the patient can become paralyzed or blind.
Often the severity and progression of the disease is determined by an MRI to identify lesions within the central nervous system.
The approved course of treatment in the U.S. is any one of a number of powerful drugs known as disease modifying-therapies (DMT), taken either by injection, intravenously or orally, designed to decrease the frequency of relapses and delay the progression of the disease. Attacks or relapses are frequently treated with high doses of steroids for immediate relief. There is currently no known cure for MS.
Upset that the neurologist had failed to communicate with him regarding Rivard's condition, her family physician sent her to a second neurologist. Over the next four years, a succession of neurologists, approved by her health insurance, treated her with a prescription of DMTs. The injections can be painful and expensive.
"They kept putting me on these once-a-month injections that were extremely high priced. They ran anywhere from $2,000 to $4,000 a month and that was 25 years ago. Some of the drugs I took every day, some were every other day, and one of them was this once-a-week self-injection. They made me super, super sick. I had this big needle I had to stick in the top of my leg. It was horrible. I had big welts everywhere," said Rivard.
All in all, Rivard tried the various drug regimens for 15 years. She continued to suffer relapses accompanied by sickness brought on by the drugs themselves only compounding her frustration with her doctors.
"At one point, one of my neurologists told me I didn't know what I was talking about when it came to my own body. I wasn't so pleasant when I told him I didn't need his services any more," recalled Rivard.
Five years ago, she hooked up with Dr. Rita Richardson, a neurologist who visits at Westfields Hospital & Clinic in New Richmond.
"Dr. Richardson and I just really get along. I absolutely love her. She's one of those doctors who will sit there and listen. She actually cares. Finally, after 20 years," said Rivard.
A new approach
Three years ago, Rivard implemented a new approach to her disease, no more DMTs. She began working with a nutritionist.
"We don't eat out of a box anymore. We eat healthier and we know what we are eating," said Rivard.
She and her husband eat beef they raise themselves and vegetables and fruit from their own garden. In addition to a new diet, Rivard tries to maintain a regular physical fitness routine swimming five times a week, riding her bike and attempting a little yoga at home. She feels better both physically and financially having eliminated expensive drugs from her budget. However the MS continued to relapse causing debilitating episodes and regular spasticity particularly in her legs.
"My whole body goes wild. I can't walk. I either sleep all the time or I don't sleep. I go to the bathroom. I might as well just sit in the bathroom. Usually I feel weak, very weak. My husband can sense it coming on more than I can. I live with it, but he witnesses it. Most of the time, he'll say, 'I think I need to take you in.' After the first dose of steroids, I usually feel better," said Rivard describing a relapse.
Four years ago, Rivard had a Baclofen pump inserted to control the spasticity in her legs. Baclofen is a muscle relaxant and antispastic commonly used to address spasticity in MS patients. She resigned her position at the hospital.
"I knew I couldn't do this anymore, so I told them I was resigning so as not to leave them hanging. I miss my job, but I still have my care team. When I go in for my treatments, everybody still comes up and hugs and kisses me," said Rivard.
After years of feeling experimented on and left out of the equation when it came to managing her own care, Rivard began reading extensively about MS to educate herself about her disease. That is when she learned of hematopoietic stem cell transplants (HSCT) and Clinica RUIZ in Puebla City, Mexico.
HSCT treatment for MS essentially rewrites a diseased person's immune system. A person's stem cells are harvested; their immune system is wiped out taking with it any memory of the disease. Their stem cells are reintroduced to a disease free environment where they repair and reconfigure neural damage done by the disease. Ideally it halts any progression of the disease and returns function to varying degrees depending on the individual without the use of any DMTs.
Rivard initially applied to the only HSCT program in the U.S. being conducted at Chicago's Northwestern Memorial Hospital. The program has been in place since 2015 but is highly selective and expensive, $125,000 per patient. She was rejected for the program due to her age and her MRI revealed no active lesions. However, through the Chicago program's website, Rivard connected to an online community where alternatives to the program in Chicago were explored. That is where she met Bill, who lives in Roberts, and Nancy, who lives in Amery, fellow MS sufferers who had both undergone HSCT at Clinica RUIZ in Mexico.
"I had the information sitting here for about two months. Finally I talked to Dr. Richardson about it and she said, 'Go for it.' The clinic has an application process online. It took me a half hour to fill out. I applied on Sunday and was accepted the next day," said Rivard.
Clinica RUIZ is operated by Dr. Guillermo Ruiz Argüelles in Puebla City, Mexico. Ruiz Arguelles has conducted more than 700 stem cell procedures since 1996. According to his web site, hsctmexico.com, a simplification of the grafting process (collection of the stem cells) refined over the years, has resulted in a substantial decrease in cost to the patient. It has also enabled most of the procedures to be conducted on an outpatient basis. Ruiz Arguelles and his staff have produced numerous academic articles and received numerous awards and recognition including election as a Distinguished Mayo Alumnus and Master of the American College of Physicians.
Rivard relapsed three times between January and May this year. The prospect of hope and promise of a high percentage of success (better than 80 percent of patients experience some degree of success halting the disease's progression and better yet, reversing their disability) was all encouraging to her, still it was Mexico and so far it was just words.
Seeing actual, physical results in the persons of Bill and Nancy and being able to ask them questions about their personal experiences convinced Rivard this opportunity was the real deal.
Nancy was diagnosed with MS one year ago. She returned from her HSCT treatment at Clinica RUIZ on March 27, 2017. She is 44 years old. She also shares Rivard's neurologist, Dr. Richardson.
"I saw these two pictures posted by a woman. One of her the day she was leaving the hospital in Chicago after she received treatment four years ago. And the other was that day, after she had finished a ten-mile run. I asked myself, 'Why am I waiting? I can't run.' Even if this treatment did nothing but stop it, I was happy to try it. I had started to use a cane, which was mentally difficult for me. It's not my goal to need a neurologist to aggressively treat me. My goal is that I beat this. I just need somebody to help me if I need it. Dr. Richardson has been really accepting that I had this radical treatment. This treatment has helped me way more than I had ever hoped. This morning I posted a video of me doing hopscotch. I saw immediate improvement during treatment. I ditched my cane two weeks into treatment. Now I'm working out at the gym. I'm getting my balance back and learning how to jump rope," described Nancy.
In May, Barb paid $54,500 to Clinica RUIZ in advance of her treatment. Her health insurance will not pay a dime toward her treatment. As of mid June, numerous fundraisers organized by friends and family including a live auction, meat raffle and spaghetti feed have raised more than $41,000 to steadily chip away at the financial obligation. In exchange for a rusting antique grain truck engulfed in weeds in her backyard, Rivard will receive three round-trip airline tickets to Mexico City courtesy of her brother-in-law.
"He's had his eye on that old truck for years. That's a win, win for me," said Rivard with a big smile.
The next step
She will leave for Mexico Saturday, Aug. 12. From the airport in Mexico City, it is a two-hour bus ride to the clinic in Puebla City. On Monday, Aug. 14, Rivard will be assigned to one of four groups of five patients and undergo a full day of testing. The clinic has the capacity to treat 20 patients at a time.
Over the course of the next three weeks, Rivard will undergo potent chemotherapy to kill off any infections and eliminate memory cells in her immune system. She will then receive a series of injections to stimulate the growth of her stem cells. Stem cells from her own body will then be harvested using a process called aphaeresis. Following the harvest, she will receive a second round of chemo preceding the reintroduction of her previously harvested stem cells back into her body. Once the stem cells have been transplanted she will enter a neutropenic period during which her body is very susceptible to infection. She will eat a specific diet to help her body recover and have very little contact with the outside world. During that period the stem cells are beginning to grow in an environment cleansed of the previous disease beginning to repair and reconfigure any neural damage done by the disease. Before she leaves Mexico, she will begin receiving a course of Rituxan injections intended to hold her immune system at bay killing off cells, which would otherwise attack the new stem cells impeding the recovery process. Those injections continue every other month for nine months. Staff at Clinica RUIZ will be in contact with her hematologist, Dr. McCormack, before she leaves to begin monitoring her recovery. To aid in Clinica RUIZ's research, Rivard will continue to update her progress every three months using an online report form. Provided everything goes as planned, Barb will return home Sept. 9.
The range of recovery stories is amazing. People restricted to wheelchairs are walking. Rivard's friend Nancy went back to work, sans cane, two weeks after she returned home. Her friend, Bill, is continuing to improve a year and a half removed from his trip to Clinica RUIZ. Studies indicate patients can continue to improve for two or more years after treatment.
"Nothing else is helping me. I've been reading about this for a long time. The biggest drawback is, it doesn't work. I have to do it. I'm excited to go."
Follow her journey on Facebook at: www.facebook.com/bean.langness.