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Tuesday, July 28, 2015

When Life Changes on a Dime

We have all been there--one minute you're fine, and the next, you’re not.  In my case, my disruption came in the form of a serious medical issue that interrupted my life completely. In this week’s posting, I want to talk about the experience that has changed me. I will also share some of the tips and resources that helped during some of my darkest times dealing with brain cancer.

I have always been a very active person, and I have always kept myself healthy.  I have had many wonderful experiences both personally and professionally throughout my life and probably took my good fortune for granted, as most of us do until there is an event that changes our lives.
As a nurse, I have had the opportunity and privilege to work with professionals in a team setting, in which we provided quality care to patients. I, however, never really tested our health care system personally. I always knew problems existed, but it wasn't until late November of 2014 that I had the opportunity to experience it all firsthand.

On November 24, 2014, I was diagnosed with a central nervous system brain tumor. The only symptom I had prior to diagnosis was blurry vision, which I attributed to new glasses. I went to my ophthalmologist to address this, and the doctor assured me the glasses were fine and I probably just needed to get used to them. Leaving the appointment, though, I hit the curb with my car. As a result, I got a flat tire and called my husband as I was unable to drive the car. When he arrived, he said I looked confused and was not acting like myself, so he took me to the hospital. Hours later, a CAT scan revealed the tumor in my brain. 

This diagnosis thrust me into the complex world of healthcare. I was admitted to a small community hospital where I received various tests to determine if the brain tumor was the primary site, or if it had metastasized. I was lucky, or as lucky as you can be with a brain tumor, that all of the tests were negative and the brain was the primary site.

After the testing was completed, the neurosurgeon recommended I go to another neurosurgeon at the University of Miami for further treatment. This was a relief, as I did not want to receive care for such a serious condition at a small hospital but preferred an academic setting. But getting an appointment with a specialist at a large teaching hospital is not easy. One of my colleagues called a few people and was able to secure an appointment the next day with the neurosurgeon. I was evaluated by the neurosurgeon and admitted to the hospital for a biopsy. We learned that the tumor was inoperable so chemotherapy was going to be the course of treatment. I was seen by an expert team coordinated by the Neurosurgeon. The hematologist/oncologist he referred me to specializes in the tumor type I had. He was able to see me right away, admit me and begin treatment. I truly believe that the expedited care I received from this expert team saved my life.  

As most of the early days of my journey are blurry to me, I turned to my husband for information. He pointed to four large binders that he built that detailed my course of care. Having a system to keep track of the medical records and all of the professionals who treated me was critical.  The binders also contained business cards with information for important contacts that he communicated with along the way. The information in the binder detailed the dates when we saw the various physicians/providers, what they said and what the treatment plan was. The binders went with us to every appointment so that if there were questions we could produce a discharge summary, doctor’s notes, or my husband notes on the visit to help clarify the plan of care.

It is important to keep in mind that, as a patient with a serious medical condition, you are the only constant in your care, so having a way to maintain the history and the course of care is critical. The plan of care can become confused as new players enter the picture.

Another tool that helped in unanticipated ways was our cell phones.  My husband showed me a few of the videos he took with his cell when I was having trouble communicating. The videos and the documentation in the binders were eye-opening to me, as they showed how sick I was and how lucky I am to have come as far as I have in a few months. He also used these videos to explain to the medical team what he was seeing at home and how my personality changed as a result of the tumor.

I attribute my recovery to the medical team, nurses, and pharmacists at Sylvester Comprehensive Cancer Hospital at the University of Miami. Because of their expertise and close supervision, I am here today. And through my husband’s love, patience and support, I have been safe and cared for. I had several friends who assisted us and untangled many of the roadblocks that often hinder care. I also had a very good support system made up of family and friends, who prayed for me and kept in touch, providing intangible support in times of isolation.  Having an advocate when you enter the hospital is very important. The advocate can be a significant other, a family member, a friend, or a professional.

Today, there are professionals such as nurse case managers and professional patient advocates with whom you can contract with privately to help you and your family navigate the complex health care system. These professionals can be a godsend for the family and the patient during a difficult and confusing time.

In the midst of overwhelming and complex treatments and developments, communication can be difficult. To help with keeping friends and family updated, my husband set up a CaringBridge site.  CaringBridge is a free service where people can set up individual web pages to update others on progress or challenges a loved one is facing. Family and friends can leave comments and well wishes. The site was a help for my husband; it alleviated the stress of making repeated phone calls with updates.  After each doctor’s appointment and hospitalization, my husband would update the site. I gained comfort in reading the comments, as they showed the support I had behind me. It was very uplifting.

My husband was able to take off from work and visit with me daily, sometimes twice a day at the hospital. This was a blessing. Due to the type of chemotherapy, I was admitted to the hospital every two weeks, usually for 5 to 7 days at a time. His presence and assistance carried me through a very challenging time.  He was a help to me when the nurses were busy and I needed a cup of ice or a soda. Since he was the only relative in the area, I depended on him for everything.

In order to ensure a similar type of support system, it is important to plan.  Families that have other members in the same area need to make a visitation schedule to make the most of the patient’s time and to provide support to the primary caregiver. If possible, find out when the medical team visits so that someone can be there to assist in receiving updates and asking questions that clarify the course of care.  Have a list of questions ready so you are prepared for the team. Another way to handle questions or problems that needs to be addressed is to ask the nurse to set up a family conference so issues can be resolved. This is a common practice in most hospitals today, so don’t be afraid to ask.

I also recommend that you share with the health care providers on your team some information about who you are. Tell them the type of work you do or did; tell them about your family, and some details about your personal life. All of these details remind them that you are not just a patient – but a person as well. While patients are very important and should be viewed as the center of the care team,  many health care professionals may become desensitized as they see so many cases and sometimes forget to consider the uniqueness of each patient. Telling the nurses, doctors and, other members of your team about yourself can change their perspective. Revealing this information reminds them that you are an individual;  you have people in your life who love you depend on you, and want you to get better. So many times, patients lose their identity in the nonstop pace of our complex health care system. Bring in photos of your family and friends so that the healthcare team is reminded of the person behind the patient.

After the third course of chemotherapy, I had an MRI which showed that the tumor was gone: I had not expected to hear this when I went to my appointment with the Hematologist/Oncologists. I had thought the doctor would tell us the tumor shrunk, grew or was the same and he would give us details on the course of care. We were shocked and grateful for this news as it meant the chemotherapy was working. The plan was to continue to course.

As part of a teaching hospital, rounds are made by a large team of professionals. The team on the unit where I was a patient was made up of the attending physician, residents, interns, medical students, a nurse practitioner and the pharmacists. The people on the team changed at different times during the month, so as a patient you are constantly meeting new people.  Again, the burden of keeping the team up to date falls to the patient and their support system so having that binder handy can help. For us, referring to the binder about various treatments, medications and plan of care helped us avoid medical errors and showed the team that we were engaged in my care and could clarify issues they could not find something in the current record.

On week five, the team visited me on daily rounds and checked my reflexes as part of their examination. On exam, it was found I could not flex my feet which meant I had foot drop in both legs. This was a sudden change that had occurred overnight. This made walking difficult to the point that I needed assistance to get up out of bed. As a result of this change, the attending ordered one of the drugs that was part of the protocol (Vincristine) be stopped as it is known to cause nerve damage.  In addition, I was seen by a physical therapist who ordered a rollator walker for me. I received this in the hospital and was able to use it to walk for short distances with someone with me as I was very weak. 

I finished my six chemo treatments at the end of February as an inpatient. My Hematologist wanted me to have two additional treatments for ‘insurance’. These treatments were able to be done as an outpatient as it was a single drug. This was a great relief as I was really tired of being in the hospital, but it was a lot of work for my husband. Once I was discharged, I had trouble using the walker due to weakness and had a few falls. As a result, my husband had to be with me whenever I used the walker so he could catch me if I started to go down. It was a very scary time as I was afraid that I would fall and break my hip or another body part.

On my follow-up visit, I asked the doctor if I could go to Physical Therapy and he agreed. I went to a facility near my home as an outpatient and learned the reason for the inability to walk was due to muscle weakness. They gave me exercises that would help me start to build up my muscles but I was advised not to use the walker as I was a high risk for a fall.  As I still had chemotherapy as an outpatient to be done, the progress was slow, but it was good to be doing something to improve my condition.

As I was unable to walk I had to have help transferring from the bed to a chair, assistance with going to the bathroom and getting a shower. My husband did all of this as well as cook our meals, do the laundry and transport me to doctor’s appointments.  He really did everything for me to ensure I was safe.  As a result of the chemotherapy, I had a poor appetite and did a great deal of sleep. Many people shared ideas to help with my nutrition.  They suggested protein shakes and other types of food that would build my immune system as well as provide the nutrition I needed to heal.  This was helpful and I tried my best to eat and drink fluids. It was hard as I had no appetite so at times I felt I had to force myself.

Early after my discharge, my husband asked me; should you have really gone home with all of these problems? When I thought about it, I should not have come home as I was not safe, but no one in the hospital did an assessment or asked me if I felt safe.  I wanted to come home, so I did not push the fact that I would be difficult to care for. We were very lucky that nothing happened to me during this time as any injury would have set me back. My husband was an excellent caregiver and never left me alone but having a case manager or social worker evaluate me prior to discharge would have been a safer course of action.  If you are ever in this situation, ask your nurse or doctor for an evaluation by a case manager or discharge planner. This is important as they can help with resources such as home care or equipment that could be set up before you leave so your transition home is safe.

In early April I had finished the additional chemotherapy and went to see the Hematologist/Oncologists. Prior to the visit, I had an MRI that showed I remained tumor free. As the doctor examined me, he said that he wanted me to go into inpatient rehabilitation as it would be more aggressive and I was very debilitated and weak. He wanted me to go to rehabilitation at the University of Miami, but we could not get an appointment with the Rehabilitation doctor till mid-May and I wanted to start the process as soon as possible.  I also wanted to go to the facility nearer to my home. The facility I was going to as an outpatient did have an inpatient hospital where I knew I would get excellent care. I went to see the Rehabilitation physician there and was able to be admitted right away.  The doctor explained I would be in for a two-week stay as that is what the insurance usually approved. He said they would monitor my progress and if I needed more inpatient treatment, they would see if it was approved by the insurance company.

Looking back, going into inpatient rehabilitation was the best thing I could have done. I had physical and occupational therapy twice a day, cognitive therapy once a day and pool therapy three times a week.  The therapists were excellent and came up with creative ideas that allowed me to build my confidence and walk safely. They also explained things to me that I did not understand why I was having trouble walking and gave me exercises to build up my muscles and balance.

Through the therapy team’s guidance, I improved physically and mentally.  I found strength from my faith, support from friends and family, and from the other patients who were at the rehabilitation hospital and worked alongside me. Many were older and many had serious problems. Their hard work and progress made me see that through therapy I could also improve. I learned that the cause of my inability to walk was the result of peripheral neuropathy and nerve damage from the chemotherapy. I am told that this should resolve, but it is a very slow process. After the two weeks, I was discharged from the inpatient hospital and readmitted to outpatient therapy as there was still a lot of work to do. This time when I came home, I was more independent and could do more of the activities of daily living with minimal help. I still needed assistance but I was feeling more confident as I continued to improve.

Another important member of my team was the psychologists/psychiatrist. When life changes and the future is not clear having someone to talk to is important for both the patient and the caregiver. I had two consultations (one in the cancer hospital and one in rehabilitation hospital) with the psychiatric team. To be honest, I was having some doubts about how my life would be if my legs did not improve or the tumors returned and having someone to talk to was important. They could not give me any answers, but knowing that what I was going through was normal was important.

Currently, I am able to walk with a walker and transfer independently. This has been a big confidence booster for both me and my husband as it means he can leave me alone for short periods of time. This progress has allowed him to go back to work and do others things that he could not do as I was not able to be alone. I still cannot work or drive so I find things to do at home that occupy my time. This Blog was born out of the need to share my experience while providing ideas and recommendations that could help others to navigate the healthcare system safely.

Next week, I will detail the various healthcare professionals who cared for me and were there to assist me in every way. It is helpful to understand each professional’s role and how and when to access them.

If you have a comment or a question, feel free to leave them in the comment box. If you want to talk to me please email me and we can set up a time to talk or you can reach me via email at

Thanks for visiting Nurse Advocate and have a good week!

To summarize, here is information and a link to some of the tools and resources mentioned in this week’s blog:

Binders: You can go to any office supply store to purchase a binder. If there are multiple hospitalizations, have a binder for each hospitalization or separate by date. The binder can fill up quickly so buy a large one as they are easier to go through to find information. You may also want to buy dividers if the person is being seen by multiple providers. You can get inserts to hold x-ray discs so they remain with the appropriate doctor’s visit. Keep in mind that you are entitled to these records. You may need to pay something for copies and sign a consent form to release information, but having them will be important as you move through the continuum of care.

Asking Questions: Clarifying the plan of care: As the patient and caregiver, don’t be afraid to ask any question. Many times it may be overwhelming to ask questions to doctors or other staff members who are busy or you may be intimidated by. DON’T….they are in place to care for you and your questions, concerns are important for them to address. I do recommend that you take time to formulate your questions in advance of seeing them so that you are organized. Try and find out when the doctor will visit you. If you are in a teaching hospital, the team usually makes rounds at a set time. Ask the nurse or the resident what time the team will be making rounds. If you are in a community hospital call the doctor’s office and find out what time he is expected at the hospital. In my experience, the floor nurses usually don’t know this as their times change according to the office hours and workflow.

If you want to look things up on the internet, ask for websites that would be good to visit. There is a lot of information on the internet and a good deal of it might not pertain to you or may be accurate. 

Ask the nurse, doctors, or case managers for some sites that they recommend you to visit. They probably utilize the same websites, as they are reliable, help them understand your diagnosis, and explain treatment options and tools. If you don’t understand the information, print it off so you can bring it to your visit. Also, ask the doctors or nurses for information on your condition. They may have printed information ready that will save you the time.

Caring Bridge: A Communication Tool: this site allows you to set up your own website to make posts on your plan of care, progress or lack of progress. This helps communicate information to a number of people at one time and allows well-wishers to communicate with the patient/family. Here is the link

Sunday, July 26, 2015

Celebrating 25 Years of the Americans With Disability Act

A friend who is a paraplegic once told me that 'We are all temporally disabled'. Today, I am disabled as a result of chemotherapy. The chemo worked to rid my brain of a brain tumor, but left me with nerve damage in my legs and chemo induced peripheral neuroapathy in both hands and legs. I am improving through rehabilitation, but have a long way to go.

I understand firsthand what it means to be disabled and am grateful for the ADA for what it has done to make the US more accessible for everyone.
None of us realize the impact of a disability until we are thrust into this situation. Having accessible sidewalks, bathroom's, doorways, counter tops, ramps or lifts into pools allow those with disabilities to be as independent as they can be.
As you will read and hear information on the radio, the TV and the newspaper about the ADA as the US celebrates the 25th Anniversary of the American's with Disabilities Act you will learn that we still have a long way to go in the areas such as employment, housing and business opportunities.
I feel I can say this; people with disabilities don't want handouts, but do want the opportunity to work, travel, and enjoy life. The ADA is making this possible for many.
Today, I am thankful for the American with Disabilities Act, the healthcare professionals;  such as physicians, nurses, physical, occupational, speech therapists, psychologists, and other providers who provide services that assist those injured reach beyond their potential.
I also thank my family, and friends who offer support and my husband who is my caregiver, the love of my life and my rock. I am so grateful.

Wednesday, July 22, 2015

Welcome to Nurse Advocate

Welcome to my blog, Nurse Advocate. I decided to develop my Blog, Nurse Advocate as a way to share my experience as a nurse, a case manager, a nurse advocate and, most recently, as a patient.  Through weekly posts, I plan to share information about my experiences, which has clarified for me the challenges one can go through in the health care system. 

My goal is twofold--to help others understand how to better navigate patient-centered care and to empower all to have a voice in your care. 

In the posts that follow, I will outline the health care system as I know it, the people who work in it, share how each interacts with the patient regardless of where or how that patient enters the system.  I will try to post every week, add resources, and share information that will help all who read better navigate their choices and experiences.

As you read along, please feel free to share your thoughts, your own anecdotes, and your ideas for future posts.

This blog is intended to help patients, families and loved ones, members of the health care team, payers and others who play a role, so all have a better understand how the system works. YOU can make your experience better by being an active participant.

I would like to thank my friend Kendall Spera for her help in editing the content of this blog. Kendall has a B.A. in Journalism and Political Science from the University of Maryland College Park, and a Masters in Social Work from the University of Maryland Baltimore. She currently works in the field of geriatrics in an assisted living community. Together we will work to bring important, relevant information that you, your family, and friends can use to promote a safe and positive health care experience.

Anne Llewellyn

Thursday, July 9, 2015

About Anne

My name is Anne Llewellyn. Some people (family and close friends) call me Nancy, but professionally I go by Anne. I live in South Florida and am married to my best friend.  I have two brothers and one sister. My husband has three sisters and one brother. We are both the oldest of our siblings. Between our two families, we have a blend of wonderful people who we love.

Throughout this Blog, I  will share my background, my latest healthcare experience so you will understand my journey to the here and now. So here it goes!

In 1972, I went to Nursing School at St. Mary’s in Philadelphia. I went on the suggestion of my cousin who was a practical nurse. We were in Wildwood, New Jersey on our family vacation and I was going into my senior year of high school and not sure where I was headed. While sitting on the beach one day, my cousin suggested that I look into being a practical nurse. She explained it was a one year program, so there wasn’t much to lose--I could see if I liked it and I would not waste a lot of time if I didn’t . I mulled it over on vacation and when I got home, I called for an application. I completed the application, mailed it and waited. Then the letter came--  I was accepted! I was also excited as I learned that two friends were going into the same program.Together we started a journey that has defined who we are and has left  us with strong friendships today.  The profession of nursing was a good fit for all of us and has opened many subsequent doors.

My nursing career has been varied with a wide range of experiences that have spanned Medical-Surgical Nursing, the Emergency Department, and finally the Respiratory Intensive Care Unit. Each step of the way, I learned more about being a nurse and caring for patients and the workings of the healthcare system. This has translated into an education in being able to really listen to my patients, their families and to understand that the human spirit is resilient, particularly when quality care, competent clinicians and care providers, and a strong support system are in place. 

 I returned to school in 1978 to become a Registered Nurse and my earned my Associates Degree in Nursing. You have to know that I am someone who has always been open to new ideas, and I challenged myself to continually develop and evolve in my field. So when an opportunity presented  in a Risk Management position, I jumped. An Emergency Department colleague  told me about an opening at a company with I inquired and was asked to come in for an interview. I met with the head attorney, who explained the nuances of the position and of what my duties would consist. He gave me a test of various situations and I had to write down what I would do in those scenarios. Keep in mind, I really had no clue what a risk manager did, but I was intrigued. I found the situations interesting and used my nursing skills in answering the questions. I was offered the job, accepted it, and began an exciting career as a Risk Manager in 1984. One thing that I have done throughout the majority of my time as a nurse has been to continue to work part-time in the Emergency Department on weekends to keep up my skills. This has allowed me to keep current with changes and advances in the health care industry as well as grounded in the role and function of our complex healthcare system.

As a risk manager, I covered four hospitals in the Philadelphia area. I would visit one each week day and on the fifth day, I would go to the office to review my cases with the company’s attorney and the other risk managers. And then there was the paper work.  It was during this phase that I learned that the hospital was a dangerous place, despite the fact that competent and expert professionals strive to provide good care. I was also made aware that what happened in one section of the hospital could also happen in another area. Reading through the incident reports allowed me to see patterns or education opportunities that could improve quality and safety within hospital. 

My job was to review incident reports that came into administration and conduct interviews so we would know what happened, how the incident had occurred, and how the patient currently was. If the incident was serious, I would write a report in the event of a lawsuit.  I worked with the doctors, the patients and their families, and the hospital administrator to understand what happened and to relay that the commitment of the hospital to analyze and correct any medical error or mistake.  would investigate the incident while the details were fresh in everyone’s minds and work with the team to design solutions that would prevent such an error from happening again. It was an interesting role, it opened my eyes to the complexity of the hospital. I learned how bad things could be prevented by the team working together, encouraging the patient and their family to ask questions, and educating staff on how to handle a negative situation if it did arise.

In 1988, I was married. My husband was working in Fort Lauderdale at the time so after the wedding, we moved there which is where I began my married life. I moved to Florida as a traveling nurse and took a position at a community hospital in the Emergency Department. It was a slower pace than I was used to, but I adjusted. We used our off time to explore South Florida and find a new home.

I had kept in touch with many of my friends in Philadelphia and was talking to a good friend one day who had just moved into the area of case management. She shared that the company she was working for was looking for nurses in the Fort Lauderdale area. I called, got an interview. Again, not really knowing what case management was as the supervisor who interviewed me to explain the role. She said that case management was just good nursing, ensuring the patient got what he or she needed in the least restrictive setting for the most cost effective price. I did well on the interview and was offered a job! I signed up to do 20 hours a week in addition to my position as an Emergency Department Nurse.

I fell in love with case management and felt it closed the circle of nursing.  As a nurse, I saw people who were so sick yet recovered enough to go home or to a nursing home or rehabilitation center.  I attended many meetings with patients and families regarding the plan of care as a nurse, but as a case manger got to see the what challenges a patient had when they went home or to another setting depending on their condition. This experience provided me with a different perspective. – As a case manager, I learned how people who were sick, disabled, on dying, could adapt to their situation with an advocate by their side. I saw how having an advocate helped to ensure they transitioned through the system safely, avoided duplication and progressed through the process in a positive way. This meant adapting to a lifelong injury or chronic disease, or accepting and planning for a dignified death. My role was to make sure the patient and family had the resources they needed to meet their personal goals.

In November 2014, I experienced the role of the patient when I was diagnosed with a central nervous system lymphoma brain tumor. There were no interviews this time, but there was a learning curve for sure. It is amazing how your life can change on a dime.

Even through I was a nurse, I was not capable of making serious decisions so my husband became my advocate and was at my side every step of the way. Hearing the doctor say, “you have a brain tumor” closes your ears to the plan of care and next steps. My husband was able to listen, and to ask questions that I could not formulate. As we moved forward in the journey, we talked about these situations and I learned a lot about what I missed and how much he had to do to keep me safe and save my life. I will be forever grateful to him. 

I was lucky to have an excellent team of physicians, nurses, social workers, and rehabilitation professionals who worked to save my life. Currently the tumor is gone and I am in rehabilitation to address complications from chemotherapy. I am improving slowly and appreciating every day.

I am writing this blog to share my experience and share tips that I learned that can help others to navigate successfully through our complex, and sometimes scary and dangerous health care system. I am glad you are going to join me on this journey and I look forward to your questions and comments along the way.