Several years ago when I was working with people with rare bone marrow failure diseases (aplastic anemia and MDS), we noticed that some patients were more successful in dealing with their disease. They were more in control. We asked a lot of them what they did and got lots of interesting answers from patients, their care givers and family members. Since many of the challenges these people face are very similar to people living with CLL, there may be some valuable lessons to share.
While there were a wide variety of tips, techniques and practices, they tended to be grouped into 5 main “pillars “ –all related to patients becoming effective self-advocates. So we developed a program called “Standing Up For Your Health” based on these 5 pillars. We subsequently found that they had application to most any patient dealing with a newly-diagnosed disease or illness. They certainly have application for patients, families and care givers living with CLL.
Here they are:
- Build your Healthcare team
- Learn as much as you can about your disease and treatment options
- Prepare for your medical office visits or treatment sessions
- Keep thorough medical records
- Build your personal support team
A few thoughts about each pillar:
Building your Healthcare team:
- Find a specialist who treats CLL patients. You might start with the doctor who made your diagnosis. Ask her/him how many other CLL patients they are treating. You may have to reach out to major medical centers, medical schools or teaching hospitals to find a specialist.
- If you are significant distance from a specialist , ask if they will coordinate your care with a local physician
- Be sure to coordinate your CLL care with other physicians you are seeing for any other health issues you may have.
Learn all you can about CLL:
- Certainly the CLL Society website, information meetings, support groups, etc. can be great resources. There are lots of other websites too, but be careful. Anyone with a smartphone, tablet or computer can access thousands of pages of information—some of it excellent; others not so much. Access to information isn’t the issue, discerning what is of value is.
- You can always trust the CLL Society to have the most accurate, verified and current information available
Preparing for medical office appointments:
- Make a list of questions you want to ask and write them down with the most important ones first
- Take notes on what the physician says. If you’re not sure you understand, ask again—it’s YOUR life.
- Many people take another person with them to the appointment and yes, into the exam room. That person can write down the answers to your questions while you focus on your doctor. If you have a hearing loss like I do, this is even more important.
Keep thorough medical records:
- Organize all of your information including lab results, tests, medications, etc.
You can do this electronically or in hard copy. A mobile app or a three-ring binder work well. Use whatever you are most comfortable with.
- Special tip—if you are travelling take the information with you in case you have a medical emergency away from home. Emergency department staff are great, but it’s not likely that they have seen many CLL patients.
Building your personal support team:
- Identify , talk with and ”recruit” people close to you who can help, whether it’s getting to appointments , helping organize your information or simply someone to talk to about what you are feeling and living with. These might be close family members, people you meet at a support group, or friends who are also dealing with chronic illnesses. Again, here’s where the CLL Society can help. As Founder Dr. Brian Koffman always says, “We’re all in this together”
We’ll share more details about each of these pillars in future issues of The CLL Tribune, but this will get you started in “Standing Up For Your Health “.
Please, be sure to share what has worked for you!
John Huber has more than 45 years of senior leadership experience in both national and international nonprofit organizations. Most recently he retired from the Aplastic Anemia and MD International Foundation where he served as Executive Director for the past 8 years. He has served as Executive Director of the American Urological Association Foundation and the Lupus Foundation of America, as well as Vice President of Membership Services and Leadership Development at Goodwill Industries International. His expertise includes creating and implementing new organizational models, programs and strategies, securing financial resources, developing patient-centered services and training nonprofit executives and board members. John holds a Master’s degree in Adult Education from the University of Wisconsin, Milwaukee. In his off time, John enjoys playing guitar and driving his classic 1963 MGB.
Originally published in The CLL Tribune Q3 2016