Aplastic Anemia and MDS: II of IV
In my previous life as a Nurse Case Manager for a Worker’s Compensation (WC) Third Party Insurance Administrator TPA, I worked with a gentleman who had Aplastic Anemia. His WC claims adjuster accepted his claim as work-related due to an on-the-job exposure to toxic chemicals. Last I heard, the lawyers were still duking it out, but meanwhile we put together a team to make sure Mr. B. received the best possible treatment. That’s the thing about suffering from a rare or catastrophic disease – you don’t want to go it alone. You can’t really. Especially with Aplastic Anemia and MDS, you are too weak and vulnerable to deal with nasty inevitabilities like insurance companies, hospital financial departments, making appointments, coordinating your care before and after hospital admissions, and transportation to and from appointments. Mr. B’s wife quit her job to help save her husband’s life, and somehow they survived financially. Some spouses choose to work even harder to provide for their families. Even with a loved one supporting him full time, Mr. B.'s family still needed help coordinating his care. If you or a loved one is faced with this situation, you will want to ask your doctor for a referral to support groups, and ask your insurance claims adjuster to assign a Nurse Case Manager to your case. Mr. B. was given the support of an internal (to the insurance company) case manager (me), an external or Field Case Manager (FCM) and a Transplant Team Coordinator at the medical center.
The Field Case Manager can be the family’s best friend, and is usually the most visible of the team members. She will call you regularly, coordinate your appointments, help with transportation, and keep the insurance company apprised of any new developments in your case, like the need for a hospital admission due to infection, or a work up for a bone marrow transplant. The FCM will often attend appointments with you; keep track of the things that need to be discussed with your clinical team such as the need for family counseling during the readjustments that occur in familial roles when a spouse must assume the role of caregiver. A good FCM is your advocate, both to the clinical team and the insurer. She will work hard to see that your needs are met as you cope with your illness. The Transplant Team Coordinator is generally the contact within the Medical Center who knows your case inside and out and can help you anticipate what to expect throughout your care.
Once you make the decision to put your life in the hands of the Transplant Team, you are essentially relinquishing control of your life. You may have held a highly responsible job and been the breadwinner for your family, but your feelings of autonomy may be eroded as you submit to the demands of rigorous treatment in preparation for a transplant. The psychological changes you and your family members endure are often as difficult as the treatment itself. Make sure you all get as much support as you can, and don’t ever be afraid to ask for help! If you or a loved one have been through Bone Marrow or Stem Cell Transplant or if you have experiences with a nurse case manager, please post a comment to this blog and share your wisdom!