Any stay in the hospital is fraught with fear and anxiety for both the patient and family members. When, however, hospitalization is lengthy, patients and their loved ones frequently find themselves living in a world that feels like an alternative universe. Days and nights blend into one another; privacy is a thing of the past; and rest becomes a foreign concept as doctors, nurses, lab technicians and cleaning people operate on their schedules and not yours.
Clearly, there is a lot that is out of your control during a prolonged hospital stay. But preparation, a good attitude, a proactive approach to staying well and a supportive family can go a long way in making that stay more comfortable and less frightening … and upping the odds for a good outcome.
I witnessed all these coping mechanisms at work during my friend Fred’s recent treatment for Acute Myeloid Leukemia-M6 and his subsequent bone marrow transplant. Fred remained determined and upbeat throughout the highs and lows of his treatment, a frustrating search for a donor, and the aftermath of his bone marrow transplant.
I recently talked with Fred’s wife and number one cheerleader, Kathy, about the dark days that followed his diagnosis and how they were able to stay strong in the face of so much uncertainty:
We were all stunned to hear about Fred’s diagnosis. I can’t even begin to imagine how you must have felt.
I am not going to lie. We had some really bad moments. We cried together and had our ‘why us’ moments. But you know, we quickly realized that feeling sorry for ourselves was not going to help Fred get better. We just made up our minds to do everything in our power to be positive. We made every day count and we did a lot of research so we knew what to expect.
Fred’s emailed updates became a kind of Internet link and lifeline to you both. How did they come about?
We quickly learned the power of email. Not only did it allow us to communicate with friends and family, but it allowed them to give us support as well. We also discovered that we needed to be conscientious about acknowledging and communicating on a somewhat regular basis. If people didn’t hear from us, they wondered…and worried.
Fred once mentioned keeping a medical journal. How did that help?
We kept a journal of all medical activities, including the stop and start of all of his meds. It facilitated our conversations with his doctors and nurses, but just as important, it made Fred a participant in his care rather than a passive victim of his disease.
Fred has always been so active. I know skiing and hiking are passions you both share. What did he do to battle inactivity while in the hospital?
Fred was fortunate in that he felt well and energized for most of his hospital stays. He made it a daily goal to get out of bed and exercise by literally walking miles in the hospital halls. He made friends with other patients and become a kind of model for others, including a 19-year-old man who also had leukemia and was awaiting a transplant. We found it was really important to get out and put things into perspective. The big plus, that even the doctors acknowledge, was that Fred stayed in great physical shape and that helped enormously in his ability to fight infection.
Not all days were good ones. How did you cope with those days when things weren’t going right?
We worked hard at taking it a day at a time. Things change fast with this illness, be it an infection, donors backing out, a bad drug reaction or the whole process. Every day is a surprise. A leap to panic is often a waste of energy and inaccurate. We decided not to consider a negative outcome when a more positive outcome might be in store.
We also discovered that what we called low-energy days needed a strategy all their own. Fred used headphones to listen to soothing music as he watched nature happen outside his window. We found photography CDs with classical music set just the right tone for such days. I would tell anyone in the hospital for a lengthy period of time to think about what reminds you of the meaning of your life. Low-energy days could be a good time to look at family photo albums, loose yourself in a CD of music prepared by a loved one, or listen to a book on tape.
Fred had a get-well wall in his room to cheer him up. What other things did you do to make your physical surroundings more comfortable and pleasant?
We had big windows that we decorated. I found a hanging paper star light that I hung from the wall above the window. It added some fun and looked great from the hall. Even the staff enjoyed it and passersby smiled at the surprise. The kids in our family cut out beautiful snowflakes and wrote messages on them. I also brought throw pillows from home to make Fred’s room more cheerful and comfortable.
Any other tips for getting through a long hospital stay?
I would say to stay busy if you can. We had a work area where Fred could sit and use his laptop to stay in touch with friends and family. Get out of bed. Work your email. Research items of interest. Eat in a chair at a table. Be as normal as you can.
We found that having a plan, working that plan and being involved and proactive went a long way in helping us navigate the ins and outs of the hospital and the ups and downs of Fred’s wait for a bone marrow transplant. Our doctors and nurses were incredible in their willingness to partner with us in Fred’s treatment. We know how immensely fortunate we were.
And how is Fred doing now?
He is half way to the critical 100-day mark when doctors will determine if his major organs have accepted his new marrow. After a 12-day battle with a stomach infection and pancreatitis, he is back on track and doing well. His new goal is to be on the slopes by the end of March. And he was recently featured in an interview on a local ABC News affiliate.
More from this contributor:
Becoming a Bone Marrow Donor: Making a Commitment…and Keeping It
Anatomy of a Bone Marrow Transplant: Journey to Wellness