Recommendations from One Patient to Another

 

Understand your disease and the treatment protocols for the therapy you are prescribed.

Educate yourself about your blood counts, blood chemistry, as well as all of the diagnostic tests you will be undergoing and their significance in your treatment.

Keep copies and read them so you understand the process your body is going through.

Communicate with the staff – nurses, doctors, and techs. Myeloma is a part of their daily lives. They are knowledgeable, experienced, and they want to help. Be part of the team.

Don’t hesitate to ask questions if you don’t know or don’t understand something or have any doubts. Also, talk with other patients, but keep in mind that every patient is different and everyone’s experiences will vary.

Attend the Wednesday night support groups at the UAMS Family House — they provide wonderful support and camaraderie among patients and caregivers, as well as provide a wealth of information. It is a great feeling to make friends and reunite over time and exchange experiences.

Friendships with other patients take place and are very special; they help you stay connected between treatments.

Avail yourself of all resources available, in particular the library on the 10th floor, the social workers/facilitators in the Behavioral Sciences Dept., etc.

Research and understand the drugs that you will be taking and their side effects (all this information is available in the library on the 10th floor).

Be familiar with the routine testing schedules. Most importantly, be patient and be understanding of the fact that delays and changes will occur and that everyone is trying to do their best to accommodate you and other patients.

Always have water, healthy snacks, and reading material with you.

Develop a positive attitude. Be assured that MIRT is the best place to be if you are a patient with myeloma.

Acquaint yourself with Little Rock. Make it your home away from home. People in the community are very sensitive to the needs and challenges of patients and go out of their way to welcome you.

Attend the monthly complimentary dinners at the Oasis Retreat Center. They are a pleasure and also provide much needed support, camaraderie, and information.

Work closely with and take comfort in the assistance and expertise of the insurance personnel — they will get things done! in my case, I would not have gotten my 2nd transplant covered by my insurance company were it not for the MIRT insurance staff!

Take care of your body. Exercise – walk, stay active, as much as possible. Keep yourself well nourished and drink plenty of water.

Make sure your nurses/doctors provide you with a good explanation of each phase of the treatment and what you may expect, i.e., fatigue levels, effects on your blood counts. Things will change as your treatment progresses; each round of chemo may be different.

It is very important that discharge instructions are carefully explained and that you particularly understand orders concerning medications and their significance. The transition from leaving Little Rock to coming home can be crucial if these are not carefully explained and understood. For example, I was to start growth factor shots immediately upon arriving home (day 6) after chemotherapy. Although I knew I was to start a particular shot, and delivered the discharge orders to my local oncologist, I was not scheduled for the shots for two more days. I did not equate growth factor with neupogen at the time, nor did I understand the importance of those shots as ordered. As a result my white blood cell count plunged, my son happened to get a cold, and I ended up in the hospital with pneumonia for five days.

I feel blessed to have found MIRT.