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Tuesday, June 13, 2017

Don’t Plop!



During my recovery from the brain tumor that changed my life, I spent a two-week inpatient stay, followed by weeks of outpatient rehabilitation at Health South Rehabilitation Hospital so I could regain my strength after completing an aggressive chemotherapy protocol. Of all the things that I experienced as a patient, the one thing I remember was a common term I heard over and over; ‘don't plop.'  

The first time I was told this, I asked my therapists, what she meant by don't plop? The therapist explained she wanted me to pay attention to how I was going from a standing to a sitting position. She explained that when you don't pay attention, you plop, and can hurt yourself. She demonstrated what she wanted me to do so I understood and had me repeat the motion to ensure I understood. 

I recall all of the therapists took great pains in reminding me, (and the other patients) to take our time. Be mindful of where you are and where you want to go.  Being in a weakened state, I was at-risk for falling. As a result, I had to learn to take precautions when getting up, sitting down and doing simple things that most abled body people don't pay attention to.

The therapists showed their concern about safety by watching us closely and reminding us not to plop! These efforts stayed with me over the past two years. Due to neuropathy and bilateral foot drop, I have had to adapt my lifestyle to minimize risks that could cause an injury. Today, when I go to sit, I reach for the chair and make sure I am in the right position to sit. I am very conscious when I get up to make sure my feet are in place and I am safe to take that first step. 

I do recall one time at the pool. I was talking to someone and went to sit in a lounge chair. I was not paying attention and did not judge the distrance to the chair and 'plopped down'. I did hurt myself and maybe for the first time, truly understood the words, don't plop! Since then I have been more careful. 

As I contemplated the advice the therapists gave me, I realized the message has implications for all the things we do in our lives. How many times have your rushed to get something done, only to see a mistake? If we would have taken a few more minutes, we could have avoided the mistake and accomplished what we wanted to do. When we don't pay attention to what we are doing, we put ourselves at risk. So keep this saying in mind, 'don’t plop’! Take your time, know where you are and where you want to go, and do it safely!


Have a good week. 

Sunday, June 4, 2017

National Cancer Survivors Day







I received an email from Sylvester Cancer Center informing me that June 4th is National Cancer Survivors Day. As a result, they are planning a fun-filled week of activities.  I had never heard of National Cancer Survivors Day, so I went to the website to learn about the day.

According to the website, National Cancer Survivors Day® is an annual, Celebration of Life that is held in hundreds of communities nationwide, and around the world, on the first Sunday in June. It is a CELEBRATION for those who have survived, an INSPIRATION for those recently diagnosed, a gathering of SUPPORT for families, and an OUTREACH to the community. On National Cancer Survivors Day®, thousands gather across the globe to honor cancer survivors and to show the world that life after a cancer diagnosis can be fruitful, rewarding and even inspire. It is a day for everyone, whether you're a cancer survivor, a family member, friend, or medical professional.

The day provides an opportunity for all people living with a history of cancer – including America’s more than 15.5 million cancer survivors – to connect with each other, celebrate milestones, and recognize those who have supported them along the way. It is also a day to draw attention to the ongoing challenges of cancer survivorship in order to promote more resources, research, and survivor-friendly legislation to improve cancer survivors’ quality of life.

I thought I would share this information on my Blog, as getting brain cancer was the impetus for me starting Nurse Advocate. As you know, I was diagnosed with a central nervous system lymphoma November 24, 2014. I underwent aggressive chemotherapy which worked and currently I am tumor free.  Despite complications from the chemo which has impacted my executive function, mobility and left me unable to drive, I am doing well as I work to adjust to my ‘new normal’.

My doctor has cautioned me, that the tumor can re-occur so I get an MRI and blood work frequently so we can catch ‘it’ early if there is going to be a re-occurrence. When I think about it, my doctor and I have not discussed re-occurrence in detail except to say, if I have any problems to call him right away. When I asked the doctor what problems I should look for he said, I don’t want to tell you what to look for, just call me if you notice anything out of the ordinary. If I am honest, there are a lot of things that are ‘out of the ordinary' in my life today. In fact, I usually have a list of things that I noticed that are different today than they were prior to finding the brain tumor. I bring my list to the doctor’s visits and share my concerns, but as my scans are clear he does not seem to be worried about them. So I keep on going.

I am not sure if I qualify as a survivor, but I am grateful to have had a good outcome and to be alive today. 

There is never a minute when I don’t wonder how I got brain cancer and if it will it come back. I know no one can give me the answers to these questions, so I go on with my life the best I can and try to live every day to the fullest.


Thank you for reading Nurse Advocate and for supporting me with your thoughts, positive thoughts, and well wishes. They are much appreciated!

Friday, May 26, 2017

Let the Summer Begin


In this week’s post, I wanted to share some tips you might consider doing this summer.

Get in the pool: as a result of the complications from the chemotherapy that eradicated the brain tumor that changed my life, I have been doing water aerobics and swimming at least 4 times a week. I feel the most normal in the pool. I am not afraid of falling and I can do what everyone else does. The picture above is my water aerobics class at Central Park, in South Florida.  Can you pick me out? 

Send me the name of a book that you read this year that has stuck with you. Every July 4th for the past 8 years, I have compiled a Summer Reading List and shared via social media. Each year around this time, I reach out to social media friends, family and colleagues and ask them to send me the name of the book or books they read this year, the one's that have stuck with them, helped them learn new or escape from our crazy world. So by way of this post, I ask: what have you read over the past year? Send me, the title of the book and the author of the book or books you would like to share so others can read.  I will add them to the summer reading list! Here is the link to the 2016 Summer Reading List. My email is allewellyn48@gmail.com 

Unplug: Disconnecting from social media, the news, and other stressful activities is something that we all should do from time to time. There is so much information coming at us from all directions that it can be overwhelming so unplug and enjoy the silence!

Take in a ballgame game! Baseball is synonymous with summer so if you have a professional team, a semi-professional team in your area, pick a date and take the family. If you children or grandchildren play a baseball or another sport, summer is a good time to catch a game!

Take a vacation: Where have you always wanted to go?  Do the research and book the trip! 

Reflect: take some time to reflect on how YOU are doing? Are you happy with your life, your career, yourself in general? If not, what can you do to change the situation? Summer is a good time to commit to changing things that we realize cause us stress or unhappiness.

Attend the Case Management Society of America’s (CMSA) Annual Conference. Every year, toward the end of June, I attend CMSA’s Annual Conference. If you are involved in case management, this is the premier conference for professionals involved in the practice case management/care coordination. This year, the conference we will be in Austin Texas. If you can attend, let me know so we can connect. Here is the link to review the agenda and register! 

Last, take a minute to remember the holiday we are celebrating, Memorial Day!  Click here to watch a video that put’s Memorial Day into perspective.


Have a good weekend!  

Saturday, May 20, 2017

Taking the Time to Reconnect, It May Be Your Last Chance

   




Over the past few months, I have lost three friends. Two to cancer and one to natural causes (she was 96 years young).  The two friends with cancer were diagnosed around the time I found out I had a brain tumor. Once you are diagnosed with cancer, it seems you are put into a select group of people who you share a common bond and it brings you closer because having cancer is not something you can understand till you have it.


In this post, I share a photo of a few friends and a little story about each.

Pat Genardo, upper left photo. Pat is to my left. Pat is a case management colleague. We have been friends for over 20 years but only saw each other at the Annual Case Management Society of America Conference. Pat was active in her local chapter and had been the chair of her chapter, CMSA of Chicago, annual conference for as long as I can remember.

In January of 2017, she messaged me via Facebook and asked me to call her. I did and we talked for a while. I knew she was not doing well after battling Ovarian Cancer for several years. When she got around to why she asked me to call her, she said she wanted me to be the Keynote speaker for their conference in late April. The theme was, Rounding Up Your Passion for Case Management and she thought I would be a good person to speak on this topic. I told Pat I would love to speak, but only if she promised me she would be at the conference. Pat, true to her word, was there and looked great! We got to spend some time together and catch up. The next day, her daughter put a post on Facebook that Pat was admitted to the hospital and was on Hospice. She passed a week later with her entire family with her.
  
The next photo to the right is a group of colleagues from my time with Contexo Media which was located in SLC. I decided to go to a conference in Salt Lake City, I thought it would be great if we could bring this group together for dinner.

The main reason that this was important to me is that I wanted to be able to spend some time with one person, in particular, Jerry Okabe who is on the far right. He had contacted me a few months before and told me he was diagnosed with Pancreatic Cancer. When my plans to go to SLC were finalized, I called a friend who contacted the entire group to see who could make the dinner. Everyone knew Jerry was not doing well and wanted to come together so we had a good turnout! We had a great time and got to share some fun memories. I got to sit next to Jerry so we could talk and have a few laughs. I learned from his daughter via Facebook, a few weeks later that Jerry passed quietly with his family with him. 

The last photo is of a friend I met over 12 years ago through a volunteer group I belong, Quota International. I was contacted by one of the members that several people were driving up to West Palm Beach to take our friend, Miriam McIlvane (far left) to lunch to celebrate her 96th Birthday! I was glad I was able to attend. We had a great time and Miriam was so grateful that we all made the effort to celebrate with her. Miriam passed a few months later.

Each of these three friends were connected in various ways and touched based from time to time to catch up. With Pat and Jerry, our relationship changed once we found we had the common bond of cancer. As a result, we connected more often and took the time to share things that were personal and meaningful. We knew we each were facing a complex and scary fate causing our lives to take on a new meaning. 

As I noted, Miriam was a friend through a volunteer group (Quota International) that I am involved. She was an inspiration to many of us especially as we all aged! I always looked forward to seeing her at our District Conference (she never missed one in 50 years!) What I remember most about her, was that she always had a smile on her face!

One thing I have learned since being diagnosed with cancer is, that you have to live every minute to its fullest as you don't know when things will change and you won't have the opportunity to do the things we all put-off.  

Now I make a point of keeping in touch with people who are important to me. I try to send a note just to say hello! I take the time to make a call to someone who is on my mind and when I can, I try to visit in person.

I remember when my father was dying of lung cancer, many of our family members called our home to see how my dad was. I always encouraged them to come and visit while he was alive versus attending his funeral. Many did and although it was hard, they were grateful for having that last visit. 

I was so happy to visit each of these friends and I know my visit meant a lot to them. We got to talk, share our thoughts, laugh at our memories and take a picture that would become a lasting memory.

So in closing, my message to everyone reading this post is to stop what you are doing. Send a note, make the call and plan a visit to a friend or family member who has been on your mind! You will be glad you did! 

Sunday, May 14, 2017

Everyone needs an advocate when they are thrust into the complex world of health care





As a nurse, I was the one in our family who had healthcare experience and was looked to by family and friends when a healthcare challenge emerged.  But when I was diagnosed with a Brain Tumor in November 2014, it was my husband who stepped in as my caregiver and healthcare advocate.

Corky and I have been married for 29 years, and he has always been my biggest supporter as I moved forward in my career. He has always been the levelheaded member of our family. He also remains calm and respectful regardless of the situation. He has no healthcare experience except for the stories he has heard from me and my friends over the years. Yet, when the time came, he stepped up, took charge, and was my advocate through the most challenging time of my life.

When I got sick, he did his best to listen to the doctors and ask questions so he understood what they were telling him about my diagnosis, treatment options, and prognosis. I was cognitively not able to participate so Corky had to make decisions regarding my care and my life. Luckily we had discussed our wishes so he knew me, what my wishes were, and he advocated for me.

When my diagnosis was made, he realized this was a very serious situation. He called a good friend of mine and a fellow nurse case manager to help him understand what he was being told and what the options were at this point.  My friend, Marilyn was there to listen, support and help as she could. She was able to come to the hospital when we met with the neurosurgeon who explained the plan of care. It was at this meeting, they both realized I was not in the most appropriate hospital for the severity of my condition. As my advocate, Marilyn stepped into her case management role and took to the phones, till she found a neurosurgeon at the University of Miami who agreed to take my case. I was discharged from the small community hospital and went to see the Neurosurgeon the next day. 

I very sick when I met with the neurosurgeon at the University of Miami. He recognized this and admitted me right away so I was in a safe place and could be stabilized. He scheduled the brain biopsy for the next day so they were sure of the type of tumor I had and decide on the plan of care. Once the pathology report was back, I was referred to a hematologist who specialized in the type of tumor I had. I saw him right away and he ordered aggressive chemotherapy to be started. I truly believe this expedited care saved my life.

My husband took another piece of advice from Marilyn, that proved helpful throughout my treatment. She suggested he get a binder to keep all of my records.  Corky did this and collected reports, test, scans, lab work and notes that detailed my care and recommendations from everyone who saw me along the way. He took his own notes on what he was told by the various professionals who cared for me. He brought that binder to each appointment and when I was an inpatient in the hospital he had the binder with him every day. When the team made rounds, he listened to what they said and asked questions. Many times he was able to produce a report or a lab test that they needed but was not readily available in the chart. They would thank him and proceed with the orders.

Having Corky at my side and armed with useful information saved me from getting repeated test and experiencing medical errors. Many times the team would be talking about a direction they wanted to go and my husband would mention something my doctor had told him. He asked that they check with the head hematologist before writing the orders. Each time, they came back and said they were going to follow the current plan of care as directed by the Hematologist.

Once I improved and was able to participate and ask questions, my husband stayed involved and reminded me of various things that I was not aware of. He was always patient, respectful and willing to listen. Yet, he did not hesitate to ask a question or suggest that a resident, nurse or another member of the team check with the attending physician to ensure what they suggested was in line with my plan of care.

My experience reinforced to me, that every patient needs an advocate when they are thrust into the complex world of healthcare. It is evident to me more than every that the health care system is set up for the system and not the patient or their caregivers. Patients need to have someone by their side who is there for them. 

This is because so much information comes at you, at such a rapid pace at a time when you are least able to comprehend it. Having an advocate allows another person(s) to hear the information ask questions to help to clarify things and be able to repeat things over and over so you and other family members can make understand what is going on, so all are clear on the plan of care being designed on your behalf. 

Advocates can be a family member or friends. For most of us, this is all we need, another set of eyes and ears.  But for a complex situation, having a professional patient advocate is important.

Advocates are objective members of your healthcare team and are in place to ensure you have a voice, are able to ask questions and do research to look at alternatives that might match your plan of care so they meet your goals. Advocates address barriers and help to ensure your care needs are met. 

Independent Patient Advocates are paid privately by the patient or the family, so they are not under the restraints of the organizations which they work. There are Hospital Advocates in place who are also able to help. They are in place to represent you and ensure your needs are met when you or a loved one are in the hospital. Generally, they have the autonomy from the Hospital leadership to be your voice and to advocate for you when issues arise. In addition to Independent and Hospital Advocates, there are others such as Billing Advocates to help you review medical bills, address denials by your insurance company and negotiate bills so you can set up a payment plan that protects you. There are also Housing Advocates who can help find alternative living arrangements when needed. 

There are a number of ways you can find an advocate. Many have websites so they show up when you do a simple google search. When considering an advocate, take the time talk to them to make sure you are both clear on what they can do as well as have the experience to meet your needs. 

Keep in mind advocates do not provide hands-on care, but rather do research, meet with your health care team to understand the plan of care to ensure it meets your individual needs.  Advocates work on your behalf to break down barriers that exist in our complex system and ensure you are safe and have the information and resources to navigate the system and make decisions to address your individual needs. They ensure you have a voice in your care and are at the center of the health care system.

Here are some resources to help you learn about the emerging practice of Patient Advocacy.

Patient Advocate Certification Board: Advocates come from a variety of backgrounds. Currently, there is no national certification in place to help the consumer differentiate one advocate from another, but this is changing. Today, the Patient Advocate Certification Board is working to develop a national certification that will provide consumers and all members of the healthcare team with information they can use when choosing an advocate. You can add your email address so you can get updates on the progress of the project. 

Alliance of Professional Health Advocates (APHA) is a national/international organization designed for independent patient/health advocacy and care management professionals in the United States, Canada, and other countries around the worldAPHA provides support and resources advocates can use to start a practice or grow an existing practice.  

Aging Life Care Association: The Aging Life Care Association (ALCA), a nonprofit association with over 2,000 members. The mission of the organization is to lead the community of Aging Life Care Professionals™ through education, professional development, and the highest ethical standards.

Beryl Institute: Patient Advocacy Community: The Patient Advocate Community is a group that is your connection to other professionals who represent and advocate for consumers across the healthcare continuum.

National Association of Healthcare Advocacy Consultants: (NAHAC) is the is the professional organization for healthcare advocates dedicated to the improvement of patient outcomes through continuing education, promotion of national standards of practice, and active pursuit of policy change that lead to excellent person-centered healthcare.

Professional Patient Advocate Institute: The Professional Patient Advocate Institute exists to help professional advocates navigate the increasingly complex world of healthcare. As more advocates answer the call to aid those with complicated health and financial challenges, the Professional Patient Advocate Institute offers training to improve skills, and ultimately outcomes, for experienced and beginner advocates alike.

Today, there is a call for all of us to be active members of the healthcare team. Most of the time, we can do this for ourselves, but when you have a health care challenge that is complex and life changing, you need an advocate to be there for you! 

If you have questions on want to share how an advocate helped you during a time of needs, please leave a comment in the comment box or email me at allewellyn48@gmail.com

Have a good week!


Sunday, May 7, 2017

National Nurses Week: Reflecting on a Job Well Done



Nurses are the backbone of the healthcare system, yet many times we wonder if anyone notices. Well last week, Jimmy Kimmel, shared a personal story to millions of viewers about how an attentive nurse noticed his newborn baby boy had a problem. 

In his monolog, he noted as the nurse performed the newborn assessment, she noted that the baby had something wrong. She noted the child had a heart murmur and was a ‘little purple’. The nurse immediately took the baby out of the room to the nursery, summoned the team so that the child could be assessed and treated. Hours later, the baby was transferred to a specialty Children’s Hospital where emergency surgery was done. Today, (at the airing of the show) the baby is home and doing well. According to his Dad, he will need to be watched closely and will need additional surgeries to repair the heart defect, but… because of one nurse who noted a problem my son is alive today.

From a nurses point of view, the experience Jimmy Kimmel shared, happens every day in every corner of the healthcare system. As a father, he was grateful and humbled. But to me as a nurse, I was grateful that Jimmy Kimmel used his platform to showcase the important work that nurses play in today's healthcare system.  

I was moved by his monolog and thankful that he took the time to share his experience - it could not be a better introduction to National Nurses Week! In case you missed it, click here.

As I watched the monolog, I felt proud to be one of the 4.1 million nurses who quietly do their jobs every day in hospitals, managed care organizations, home care agencies, rehabilitation centers and other areas where care is provided for the millions of people who transition through the broad healthcare system. 

Most times our jobs are routine and matter of fact, but everyone once in a while, we recognize a problem and leap into action. Nurses are able to do this because of their training, their expertise, and their professionalism. They use the skills they have to educate and encourage their patients and their families. 

In Jimmy Kimmel’s monolog, he shared the experience intelligently and with emotion. Through his words, you could tell he knew the diagnosis, the plan of care and the severity of his son’s condition. You can tell he had been educated and empowered by the team of professionals who cared for his son and was already advocating for his newborn son. It was a wonderful example of patient empowerment and all nurses should be proud.   

This week is National Nurses Week. The theme the Amercian Nurses Association has chosen for 2017 is Nursing: The Balance of the Mind, Body, and Spirit. 

To all my nursing colleagues, take the time to celebrate the work you do and know it is appreciated even when no one tells you!  

For patients and caregivers, when you encounter a nurse this week, thank them for what they do! 

To all members of the healthcare team, make sure your nursing colleagues know they are appreciated and valued!


Have a good week! 

Sunday, April 23, 2017

Empowered Work Environments: Ensuring a Culture of Success




Today, the term empowerment is used in all aspects of the healthcare system. Before we can empower patients, healthcare teams need to ensure their workplace cultures encourage education and a forum where learning and growth are nurtured. 

In this week's post, I would like to explore the word empowerment and what it means to today's workforce. 

The term empowerment refers to the activity of the leader to give power to others to enable them to control their destiny and protect their rights.  Leaders must give the power to their subordinates in a way that they feel they have control over their destiny and therefore is the key to the road to a successful work environment.

Kanter, the most recognized theorist on structural empowerment, identified five components that must be present before participants of a workforce will be empowered. They include:


  • Opportunity (growth, mobility, promotion and recognition)
  • Knowledgebase (opportunity to learn and grow)
  • Necessary resources (having the tools and the staff to do the job safely and effectively)
  • Information (data, monitoring of improvement and technical skill to do the job)
  • Support (guidance and feedback from leaders, peers, and subordinates)


Kanter’s research has been found to demonstrate that by providing these conditions to employees, it has been shown that there is increased job satisfaction, commitment, trust and a marked decrease in job burnout. 

So how is your work environment? Take time to see if you work in an empowered workplace! If not, take the time to collaborate with your team to change the culture of your workplace. 

Do you work in an empowered workplace? If so, share how this environment has improved the outcomes you and your team have produced. Make a comment in the comment box below or email me at allewellyn48@gmail.com and share information about your work environment. I will share comments in a future post.

Resource: 


 A new book just released by an expert in Medical Improv. If you are looking for a way to improve your organizations' culture, communications and empower your teams to be the best they can be, check out Medical Improv a New Way to Improve Communications! The book explains the theory behind medical improve and also provides specific exercises you can include in staff meetings, in-services or other staff activities. Take advantage of the publication release discount.  Click here to order your copy!