Each Other's Heroes







My name is Laura Reynolds.  I have been caregiver to my disabled twin sister Lisa for many years.  Although reluctant to ask for help, the escalating medical bills associated with Lisa’s worsening health combined with the financial impact of our mother’s death and the resulting unexpected expenses have placed us in an increasingly desperate situation.  It is our strong hope that your donations will make it possible for Lisa and I to continue to live together in our handicap accesible home.  Our family has lived in our home for the past 21 years.  We cannot imagine attempting a move, and in fact, it is an overwhelming thought for us.  We believe the physical and emotional results of attempting a move would have medically devastating consequences for Lisa.   At the suggestion of one of Lisa's physicians, and at the encouragement of our friends, we are telling our story together in this GoFundMe page.  

We feel it is important to start at the beginning. In 1983 and at just 19 years of age, Lisa was diagnosed with severe Rheumatoid Arthritis (RA). RA is a lifelong autoimmune disease that affects the joints causing them to become swollen, stiff and painful.  In the worst cases such as Lisa’s, the disease can also ravage soft-tissue parts of the body, causing problems such as inflammation around the lungs and heart, reduction of red blood cell counts, susceptibility to infection and more.  At the same time of Lisa’s initial diagnosis, I was diagnosed with Systemic Lupus Erythematousus (SLE).  We were both referred to the National Institutes of Health for evaluation and treatment.  Lisa was prescribed a variety of medications, some of which included daily steroids, gold injections and the chemotherapy drug, Cytoxin.  Cytoxin, in the manner of so many chemotherapy drugs, caused Lisa to lose her hair.  NIH fortunately later determined I did not have SLE.

Even with the crippling diagnosis of RA, Lisa was determined not to let the disease rule her life.  She continued to work meaningful jobs and to continue her college education.  Because of health setbacks, it took five years, but at the age of 23, Lisa graduated from UVA with a Bachelor’s Degree in History in 1987.  While still living in her handicap-accessible apartment in Charlottesville, Virginia, Lisa began work on her Master’s Degree and to also work part-time at a women’s shelter.  Lisa was trying hard to live an independent life, but unfortunately, the progression and severity of her disease was making it very difficult.  In March 1988, Lisa contracted chicken pox and was forced to return home to Northern Virginia to recover.  Lisa was home for about a week when her prescribed daily RA medications of NSAIDS and Prednisone caused her to develop a perforated ulcer.  Lisa became seriously ill with an infection in her bloodstream and went into septic shock. Lisa required immediate, emergency surgery on March 28, 1988 by the chief trauma surgeon at INOVA Fairfax Hospital and was close to death.  Lisa spent the next six weeks in the Intensive Care Unit (ICU) at Fairfax Hospital.  During that time, Lisa was intubated and relied on a ventilator for complete life support, then transitioned to a tracheostomy and a ventilator for complete life support.  Lisa slowly recovered and was eventually discharged from the hospital in May 1988, but she suffered permanent damage to the lower lobe of her left lung.  In August 1988, Lisa hoped to move forward by joining our mom and a friend on a trip to England where our mom was judging a Labrador Retriever dog show. It was the perfect vehicle for Lisa to attempt to move past her overwhelming hospitalization and to move forward into a more positive future.  Lisa toured Oxford University and loved it.  She and our mom also got to meet the British author and Veterinarian, James Herriot.

After the trip, Lisa went back to her apartment in Charlottesville to continue working on her Master’s.  She loved living in Charlottesville more than any other place and served as a Teacher’s Assistant for one of her Professors.  Unfortunately, Lisa’s mobility and general health continued to deteriorate until, in 1989, at the age of 25, Lisa became totally and permanently disabled.  Due to her working full-time for many years, Lisa fortunately qualified for Medicare and Social Security despite her young age.  Five years later in 1994, Lisa suffered two grand mal seizures that caused her to simultaneously fracture and dislocate both of her shoulders at the same time.  Lisa was taken to the UVA Medical Center by ambulance and was admitted to the ICU for treatment and care.  Lisa was prescribed seizure medications and unfortunately, she had to stop working on her Masters and needed to move back home to Northern Virginia to recover under our mom’s care.  Lisa says the onset of having grand mal seizures and having to move away from Charlottesville and having to stop working on her Master’s was heartbreaking for her.   

The RA has also caused Lisa to suffer a myriad of serious complications resulting in wheelchair dependency and close to 100 hospitalizations since 1988. She has had about 43 hospitalizations n the past 10 years. Just as one example, Lisa spent 5 months either in the hospital or in a SNF (Skilled Nursing Facility) in 2004.  Lisa suffered from steroid myopathy and could not stand or walk, and she developed a serious infection in her bloodstream requiring a 10 week hospital stay in an isolation room at Fair Oaks Hospital. In 2005, Lisa had two orthopedic surgeries, osteomyelitis (bone infection), double pneumonia (bilateral infiltrates) and as a result spent 7 months either in the hospital or in a SNF.  The reality was that Lisa spent 12 months (one year) out of a 2 year period either in the hospital or having physical therapy and occupational therapy in a SNF.  One year was a very long time for Lisa to be away from home and family, but between our mom and me, one of us always visited Lisa everyday she was hospitalized or receiving care in a SNF.  We brought to Lisa many home cooked meals, including Thanksgiving and birthday meals and also strawberry shortcake (one of Lisa’s favorites at that time) to the hospital and to the SNF. Friends and family and their sweet pet therapy dogs visited Lisa, and these visits provided much comfort and unconditional love to Lisa and our family. They too brought home cooked meals and one time even planned a surprise birthday party for us.  We are grateful for all the love and support our friends and family have provided to us over the years.  Looking back, our family found ways to adapt so that we could all be together, especially on holidays and birthdays. It didn’t matter that we were celebrating in a hospital or in a SNF, what mattered was that we were together and surrounded each other with love.

In addition to her wheelchair dependency, Lisa has limited use of her limbs, sjogren syndrome, osteoporosis, chronic respiratory failure, restrictive lung disease, COPD, Asthma and severe sleep apnea. The sleep study done at the hospital showed that Lisa stopped her breathing on average 100 times in just one hour. Because Lisa’s lungs needed more support, her trilogy 100 machine settings are actually set to a ventilator setting now (AVAPS) and at a higher pressure. Lisa must sleep with the Trilogy 100 machine with the ventilator settings prescribed to help keep her airway open, otherwise she is at high risk of hypoxemia, hypercapnia (also called hypercarbia) and possible death.  The result of Lisa’s lungs needing the ventilator type (AVAPS) support settings is that all of Lisa’s hospitalizations from now on are monitored by the medical staff in the ICU. In the past, Lisa has had recurrent pneumonia, tracheostomy, bilateral knee replacements 1994, 1995, a third knee replacement in 2005 requiring an antibiotic cement spacer in her knee for 6 months prior to the knee replacement, hip fracture and surgery and placement of a rod in 2009, cellulitis, deep vein thrombosis, perforated ulcer causing septic shock requiring Lisa to be on a ventilator for complete life support in 1988 and many other life threatening infections.  Because of the risk of infection, Lisa faced the demoralizing decision in 2010 to have all of her teeth removed, an effort requiring an oral surgeon and a 6-day hospital stay.  Lisa was just 46 years old.

At the age of 48, Lisa was diagnosed with double pneumonia and chronic respiratory failure in 2012.  Lisa’s respiratory failure includes both hypoxemia (low levels of oxygen in the bloodstream) and hypercarbia (high levels of Carbon Dioxide in the bloodstream) and poor airflow (hypoventilation).  It was the chronic respiratory failure, hypercarbia, restrictive lung disease, and COPD that caused Lisa to be admitted to the ICU at INOVA Fair Oaks Hospital for a tracheostomy in March 2013. At that time, Lisa felt strongly that she did not want to live her life with a tracheostomy, as she had previously had a tracheostomy in the ICU at INOVA Fairfax Hospital for one month in 1988. However, Lisa agreed to try and to do her very best, with the help and assistance from our mom and myself, to implement her Pulmonologist’s plan of medical care. After about 10 days in the ICU at Fair Oaks Hospital, and at the direction of her Pulmonologist, Lisa was transferred by ambulance from Fair Oaks Hospital ICU to the ICU at Washington Specialty Hospital in Washington D.C. It was one of only three LTAC (Long Term Acute Care) facilities in the states of VA and MD and Washington D.C. Lisa agreed to go to the LTAC in Washington D.C for a one month stay for tracheostomy care and management. A huge downside of this was that it took Lisa farther away from her family and friends and the invaluable support system they provided to her. Two physicians admitted Lisa to Hospice Care for one month prior to her discharge to home from Washington Specialty Hospital. Lisa’s pulmonologist also transferred her to a second LTAC facility by ambulance to St. Thomas Moore in Hyattsville, MD for tracheostomy care and management.  Eventually, Lisa returned home from the LTAC with her tracheostomy in 2013, and she was still receiving Hospice Care at that time. Lisa and I worked hard for three more months to take care of and manage her tracheostomy 24/7.

Also at this exact same time in 2013, our mom was living at home with us and had been receiving Hospice Care for eleven months in 2012 and 2013. Our mom was seriously ill and had several diagnosis, including a fractured neck, fractured back requiring surgery, COPD, diverticulitis with abscess and rupture, sepsis and adult failure to thrive where her body weight went from 170 pounds to 83 pounds. She also fractured her hip in 2014 and again in 2015. The 2015 hip fracture required surgery for a hip replacement.

Three weeks after our mom fractured her neck in 2012 (a C2 Odontoid fracture), our longtime family friend, who was one of my best friends, attempted suicide by hanging.  I found our friend, Laura K. minutes after it happened.  I did all I could do to hold Laura’s body up and to relieve tension on the rope for about nine minutes until the police officer arrived and could cut the rope.  The police officer aggressively began CPR, and Laura K. was then taken by ambulance to INOVA Fair Oaks Hospital and then transferred to INOVA Fairfax Hospital and admitted to the ICU.  Laura K. peacefully passed away six days later. Laura K. was able to breathe all on her own, but was not conscious. Myself, Laura’s family and husband were all at Laura K’s bedside. I have mentioned this because Laura K's unexpected suicide and passing was a major traumatic event for Lisa, our mom and myself. It is something that affects both Lisa and me today in our present day lives.

Once Lisa returned home in 2013 from the second LTAC facility with her Tracheostomy, we realized, even with my help and the assistance of the Hospice care team, that Lisa was unable to care for her tracheostomy due to the limited use of her limbs caused by the severity of her RA. I tried to take care of Lisa’s tracheostomy for her, including any needed suctioning of her tracheostomy, but Lisa said she was completely miserable with the tracheostomy, and that she could not physically take care of it herself and had no quality of life with it. Unfortunately, Lisa suffered a grand mal seizure in May 2013 causing her to fall and to fracture her left shoulder and to fracture several bones in both of her hands.  Lisa went by ambulance to Fair Oaks Hospital, and she required treatment and care in the hospital for several days. She was discharged from the hospital to a SNF. Once Lisa returned home from the SNF and her fractures healed, exhausted, Lisa sought a second Pulmonary Physician opinion. With the support and direction from her new pulmonologist and her ENT physician, Lisa decided to have her ENT physician permanently remove the tracheostomy in July 2013. Lisa had tried for several months, but she understandably could not take care of her Tracheostomy, and it was also causing her to have respiratory infections. Once the tracheostomy was removed by the ENT physician, Lisa said she felt significant relief and could breathe so much better and felt she had quality of life back. Lisa’s tracheostomy was permanently removed five years ago in July 2013. Lisa said she believes that was the correct decision for her to make as it gave her back quality of life and independence.

Lisa’s chronic respiratory failure, restrictive lung disease, hypercarbia, COPD, and Asthma have all been contributing causes to Lisa’s multiple instances of double pneumonia all of which required Lisa to be placed on a ventilator for complete life support in the ICU at Fair Oaks Hospital in October 2012, October 2014 and again in June 2017.  
 
Now 54 in 2018, Lisa requires full-time caregiving and handicap-accessible housing close to her physicians and to the hospital.  Our sources of income are Lisa’s Social Security disability payments and the caregiving compensation that I receive from the company that I am employed by full time. We feel it important to emphasize the financial impact of our mom’s death.  Our total family income had been combined from the earnings of the three of us: Lisa’s Social Security disability payments, my full time working income, and our mom’s Social Security.  After our mom died in late 2016, her Social Security payment was discontinued, and that drastically reduced our family income by $1,600.00 each month. In addition to grieving the loss of our mom, and also to losing her income, Lisa and I immediately had many new, additional and unexpected monthly financial responsibilities that resulted directly from the aftermath of our mom’s death.  It is important to note that when Lisa is at home, I typically work 50 caregiving hours or more each week. However, whenever Lisa is admitted to the hospital, the work income I receive for Lisa’s care is completely suspended. Lisa has been admitted to the hospital for about 6 weeks out of the past 6 months, and the financial impact has been disastrous.  Because of the complexity of Lisa’s case, it is also imperative that I am with her in the hospital room to act as her advocate and to assist with her care.  This is a full-time effort usually taking about 14 hours each day Lisa is receiving care in the hospital.
 
Lisa and I want to be able to stay in our home for many reasons but most important is its close proximity to her physicians and to the hospital for Lisa and our family.  Our home is on one level and is close to Fair Oaks Hospital, and that is crucial for Lisa’s frequent emergency room visits and hospitalizations.  For several decades, Fair Oaks Hospital employees have provided outstanding care for Lisa and her unique and complicated needs. They have also provided tremendous support for myself and our family.  In fact, we feel the Fair Oaks Hospital community has become part of our extended family.  The overall care and treatment we have received over the years has been compassionate, innovative and respectful.  We are grateful to the staff as they have saved Lisa’s life on several occasions.  Their dedication to excellence is something we have the privilege to experience every day we are in the hospital.  An important part of Lisa’s overall treatment plan is that her care team ensures that Lisa receives palliative care to help with pain control.  The INOVA palliative care team provides healing touch to both Lisa and to me right in Lisa’s hospital room.  The healing touch has definitely helped to reduce pain and to induce relaxation and sleep.  Lisa and I are very proud to share with you that Fair Oak Hospital was the very first community hospital in the United States to be awarded advanced certification by The Joint Commissions’ Gold Seal of Approval for their Palliative Care Program.  
  
We do want to emphasize that it is extremely difficult for us to ask for financial help.  The sad fact is that we both have been struggling for a long time, and as Lisa just said to me, the high stress level over the last several years has been unrelenting.  We have been considering writing this GoFundMe page since July 2017, but we are private individuals, and we are much more comfortable giving help and assistance to others than asking for help and support for ourselves.  Any financial relief this page brings in will help with our medical bills, home maintenance expenses and repairs, outstanding bills, and hopefully will make it possible for Lisa and I to continue to live together in our handicap-accessible home.  While we are weighing difficult alternatives about the future, we are currently inundated with and overwhelmed by bills we cannot pay.  For whatever time she has left, Lisa says she wants to stay in her own home and to have me stay with her as caregiver and advocate.  Our situation is desperate, and our need is right now, and that is why we are asking for immediate financial help through our GoFundMe page.
 
I do want to say that for most all of my life, Lisa has been an inspiration to me, and she is someone I dearly love (to the moon and back) and admire.  Even though Lisa has suffered severe, daily pain and near-countless surgeries and hospitalizations, Lisa never gave up hope.  She rarely complains and tries to see the good in everyday and in everyone.  Lisa tries to meet each day with a positive attitude.  Lisa is compassionate and kind and is determined to live her life with joy and love.  Lisa just said to me that she feels we are each other’s heroes.  We appreciate all of you taking the time to read our story.  Our most sincere thanks for visiting our GoFundMe page.
 





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Organizer

Laura Reynolds 
Organizer
Fairfax, VA
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