The MDS Patient Diaries: Five Days in the Life

Blood tests, transfusions and doctor visits consume Mary Ellen Kelly’s time and energy.

In 2011, Mary Ellen Kelly was diagnosed with myelodysplastic syndromes (MDS), a disorder in which the bone marrow does not produce enough healthy blood cells. As a result, her red blood cells often do not mature and function properly, causing anemia. Other blood cells, such as white blood cells and platelets, may also be affected, but the most common sign in MDS is a shortage of red blood cells. In order to maintain her health, Kelly’s priorities have shifted to focus on managing her condition. A significant part of this management involves receiving frequent blood transfusions, which treat her MDS-associated anemia and help with her excessive fatigue – one of the most prevalent symptoms among patients with MDS.

Neil Horikoshi, CEO of the Aplastic Anemia & MDS International Foundation, advocates for patients like Kelly and is vocal about the struggles they face. “Everyone with MDS will experience some fatigue, even if they have improved blood counts after transfusions,” said Horikoshi. “It’s the nature of bone marrow failure disorders.”

Patients are feeling the exhaustion. According to a survey, one-third of patients describe transfusions as a burden to their family, and two-thirds would prefer a therapy that lessens their need for transfusions. For this year’s National Aplastic Anemia and MDS Week, Kelly provides a diary detailing five days during one of her transfusion weeks to raise awareness of how her chronic and rare disease affects her daily life.

Monday: Blood Work

For Kelly, each week begins with a 20-minute drive to her local hospital for a blood test to check her red blood cell count. “If it’s too low, the doctors and nurses schedule a transfusion for me within the next day or two,” Kelly said. “The lower my count, the more units of blood I’ll receive. Typically, it’s one. But if it’s extremely low, I get two.”

Each visit takes about three hours. By the time she gets home in the late afternoon, Kelly is ready for a nap. In fact, she typically naps for about an hour every afternoon due to the persistent fatigue associated with MDS. In one survey, 89 percent of patients with MDS reported experiencing excessive fatigue—a persistent sense of physical, emotional and cognitive exhaustion.


MARY ELLEN KELLY HAS BEEN LIVING WITH MDS-ASSOCIATED CHRONIC ANEMIA SINCE 2011 AND RELIES ON HELP FROM HER SISTER FOR DAILY TASKS WHEN SHE IS FATIGUED.

 

Tuesday: Yoga, Laundry and Shopping

In addition to naps, Kelly manages fatigue by attending yoga classes twice a week. This also helps her to manage her stress and to sleep better at night. “I find that it gives me more energy to get through the day,” Kelly said.

Energy is something that she tries to conserve as much as possible. She sets priorities, paces herself and asks her sister to help with chores, such as grocery shopping and carrying the laundry up from the basement.

“My pace of walking is slower than most people’s, and I have a hard time walking upstairs,” Kelly said. “I avoid really big stores because I can’t deal with all the walking. I can’t run around the store and get something quickly.”

Fatigue often affects other patients with MDS in a similar way. About 25 percent of patients report that it takes an effort to engage in normal activities, and 16 percent said they could not perform active work at all.

I devote a lot of time to my blood transfusions. It’s not what I want to be doing, but I’ve gotten used to it…

NEIL HORIKOSHI

NEIL HORIKOSHI CEO OF THE APLASTIC ANEMIA & MDS INTERNATIONAL FOUNDATION BELIEVES THAT BONE MARROW FAILURE DISORDERS HAVE A SIGNIFICANT IMPACT ON THE LIVES OF PATIENTS AS WELL AS THEIR CAREGIVERS.

Wednesday: Blood Transfusions

By Wednesday, Kelly is ready to go back to the hospital for a transfusion to boost her blood count levels. While transfusions do not treat the underlying disease, they do help to relieve the symptoms of her chronic anemia.

The transfusion process can also be lengthy and draining. “If I’m getting one unit of blood, it takes about a half day,” Kelly said. “If it’s two units, it could be seven to eight hours depending on the wait time.”

When she was still working as a paralegal, Kelly couldn’t afford to take time off for her transfusions. So she would bring her laptop and work from the transfusion center.

Now, three years into retirement, Kelly spends her time in the transfusion center napping, reading books or catching up on the news. On most of these days, she is alone.

“I devote a lot of time to my blood transfusions,” Kelly said. “It’s not what I want to be doing, but I’ve gotten used to it over the years.”

Thursday: A Free Day to Plan for Some Fun

What Kelly would prefer to be doing is traveling more. In June, she’s going to see her favorite singer, Barry Manilow, perform in Las Vegas.

“Sometimes, I take trips during the year,” Kelly said. “But I cannot be gone longer than a week at most, because I need my treatments. So, I could never go to someplace like Australia.”

The few times she did travel for longer stretches, Kelly felt like she pushed her limits. Earlier this year, she had to get a blood transfusion a couple of days after returning from a weeklong cruise because her blood levels were so low.

For the most part, though, Kelly spends her free time gardening in her backyard, meeting friends for lunch or dinner, or going to the theatre or movies. She’s recently seen—and highly recommends—A Star Is Born.

Friday: More Medical Appointments

Aside from the hours spent in the hospital for blood tests and transfusions, Kelly also has regular follow-up visits with her doctors, during which she gets a check-up and has the opportunity to discuss her symptoms and treatments.

Her doctors watch for warning signs that her MDS is progressing to acute myeloid leukemia (AML). Kelly counts herself as lucky to have low-risk MDS, with only a 20 percent chance of developing AML. Others with high-risk MDS have more than double the chance of progressing to AML.

With such a high risk of progression, attention to treating MDS and other bone marrow failure disorders is increasing, according to Horikoshi. For instance, over the past decade, Congress has invested more than $35 million in research for the prevention and treatment of bone marrow failure diseases through the Congressional Directed Medical Research Program.

For patients like Kelly, treatment advances cannot come soon enough. “I hope researchers find better treatments for MDS. But for now, and for as far as I can see, MDS is a significant part of my life,” she said.

To learn more about the progress in understanding MDS, read “Searching for New Ways to Help Red Blood Cells Mature in Myelodysplastic Syndromes.”