Coping with Myelodysplastic Syndrome

Meanne is flanked by her siblings, Michael (left), Mark (right), and Grace (standing)

FEATURE STORY

A life of repeated hospitalizations, expensive chemotherapy and blood transfusions (190 bags and counting) is far from what a career-driven young woman would have in mind. Marie Anne Concepcion-Magpantay shares how she’s coping with her costly and disabling health problems, hanging on with deep faith in God and to whatever hope medical science could offer

By Mylene C. Orillo


Meanne goes through regular blood transfusions

Forty-year-old Marie Anne Concepcion-Magpantay or “Meanne” admitted that dealing with her illnesses has been a really a hard battle. It takes a lot of struggle to be okay, and there were times she wanted to give up.

“Honestly, it was really a hard battle for me dealing with this condition since 2016. There were times I thought of giving up. I find my strength in God and my support group, which is my family. I love them so much. They are my treasure. I’m just trying my best to stay strong and be positive in all things. I know God has a purpose for me and He will perform a miracle anytime soon,” revealed Meanne.

Meanne was diagnosed with Myelodysplastic Syndromes (MDS), categorized as refractory cytopenia with multilineage dysplasia in February 2016. It started with a feeling of dizziness, which she thought at first was slight anemia because her hemoglobin levels were always low. But after a bone marrow biopsy at the National Kidney and Transplant Institute (NKTI), her hematologist finally told her she’s suffering from MDS.

MDS refers to a group of disorders characterized by poorly formed blood cells or immature dysfunctional cells. The problem is attributed to a disorder in the bone marrow. Risk factors include older age, treatment with chemotherapy or irradiation, exposure to certain chemicals such as pesticides and industrial chemicals (benzene); and exposure to heavy metals such as mercury and lead.

A fact sheet published by the American Cancer Society explained that MDS is group of cancers in which immature blood cells in the bone marrow do not mature and therefore do not become healthy blood cells.

Some cases are mild, while others are more severe, and carry a high risk of becoming acute myelogenous leukemia (AML). Supportive care for MDS patients includes transfusion of red blood cells (RBCs) that are deficient and treatment of infections.

Meanne during her most recent hospital confinement

Her ‘old’ lifestyle

The second child in a family of four, Meanne was born to a very religious but humble and supportive family. While her parents provided her a very good comfortable life, sent her to a good, exclusive school where she spent most of her happy childhood and student years, she was taught how to become responsible and hardworking to support herself and her family.

“I’m very workaholic. I used to stay up late. My work stressed me out because I used to handle payroll and company benefits so I don’t go home until it’s done,” Meanne said.

She used to work long hours in a multinational automotive manufacturing company for 15 years as a human resource associate. She would leave the house as early as 5 a.m. and goes home at 10 p.m.

When she was 18 years old, Meanne suffered endometriosis, a painful disorder in which tissue that normally lines the inside of the uterus – the endometrium – grows outside of the uterus. She would experience heavy bleeding during periods and her periods would usually last longer than five days to a week. Studies show about onethird of women with endometriosis have trouble with fertility and struggle to get pregnant.

She was married on September 17, 2005, and because of her alarming anemia which was initially believed to be due to her issues with her reproductive organs, Meanne and husband wanted to have her ovaries and uterus removed, but after consultations with several obstetricians, they all advised otherwise. They assured her that it was not her ovaries that were causing the fast dropping of her hemoglobin levels, and that it would be safe to conceive a baby.

Everything is going to be okay!

Surprisingly after a year of marriage, Meanne and husband finally conceived a “healthy” baby in 2006, but a week before delivery, the baby died inside her womb.

The couple wanted to know the reason, but since autopsies usually take two to four hours to perform, preliminary results can be released in 24 hours, and the full results may take up to six weeks to prepare, they didn’t push through with it anymore.

It wasn’t until after she was diagnosed with MDS in 2016 when Meanne finally concluded that maybe her condition had something to do with her child’s death inside her womb 10 years ago.

Treatment

Treatment for MDS aims to prevent complications of the disease and this might involve administering chemotherapy or a bone marrow transplant.

Apart from blood transfusions, Meanne receives oral chemo, which costs her P15,000 per one bottle with 30 tablets (or one cycle). Unfortunately, iron deficiency is a common complication in cancer patients so Meanne has to undergo iron therapy which costs P10,000 per session to restore iron balance in her body.

The other year, she was diagnosed with yet another illness, Bartter Syndrome, a condition caused by a defect in the kidneys’ ability to reabsorb sodium and she is losing too much sodium through the urine.

And as if all her medical woes are not enough, she was also diagnosed with a heart condition which makes her retain fluid, causing pulmonary congestion and generalized bloating.

No matter how hard the battle is, Meanne tries to keep a positive outlook in life

Her doctors call her “living miracle” for surviving her condition and its many complications, but they worry because she has already received 190 bags of blood. Blood transfusions can be lifesaving; but excessive transfusions are not without adverse implications.

And while doctors don’t limit the number of blood transfusions over a person’s lifetime, having to get that many blood transfusions can result to greater risk for side effects.

Dealing with depression

At present, Meanne lives with her family where she finds comfort. It’s been three years of in and out of the hospital, struggling financially, emotionally, and mentally, blood transfusions here and there, but instead of improving, her condition is progressing.

“According to my hematologist, my condition is quite aggressive. Lately, I’m always confined at the hospital, receiving my blood transfusions twice a month for a minimum of 10 bags. I’m going to undergo a bone marrow biopsy again to check the latest progress of my case. I’m also strictly taking oral meds, weekly injections, which is quite costly (10,000 units of erythropoietin) to increase my RBC count. But despite it, I’m just positive that soon everything will be fine. I trust God. I’m keeping the faith!” said Meanne.

Meanne revealed her family has already spent more than PhP 2 million for her hospitalization, medications, and confinement alone. Her recent hospital confinement cost her P200,000.

Good thing there are different charitable institutions like Department of Health, Philippine Charity Sweepstakes Office, Department of Social Welfare and Development that can be tapped to augment her medical expenses. She also receives monetary donations from friends, family, and anonymous people from time to time, which is a great help to her and her family.

But like many other sick patients, Meanne admits undergoing depression, which was aggravated by her father’s untimely death from cancer early this year.

Meanne with her very supportive and loving mother, Myrna

“I try to be strong. People praise me for being strong based on what they see on Facebook, but honestly deep inside, I’m really in pain. I want to give up. I just try to be okay,” revealed Meanne as tears flow down her cheeks.

“Sometimes I’m happy. I feel blessed and grateful. But there are times, I wake up one day and think I’m going crazy. They don’t understand, even I don’t understand myself. I cannot control my emotions, partly because I’m in pain. I’m super sensitive maybe because of the blood reactions in my body. Sometimes, I’m slow in comprehension. I also find myself disoriented. Sometimes I don’t remember my age anymore. At my worst, I just sleep and vomit and don’t want to talk to anybody,” Meanne added.

Living one day at a time

But life must go on as they say. Meanne tries to live a normal life. Every day she wakes up, she starts her day with a prayer. She tells God how grateful she was to be given another day to live, bond with her family, despite everything. She makes sure she does something productive even at home. She also ends her day with a prayer.

“Time is important to me. When I’m discharged from the hospital, I cannot lay in bed or stay at home all day. I do everything I can to make me happy. I try to look my best. I live one day at a time,” she said. One day, when she finally finds herself better, Meanne vows to go back to church and serve God.

Meanne misses her number one supporter – her daddy!

She will testify how God healed her and helped her through it all.

“I just want to live a normal life like before. I really want to help my family, to let them enjoy more. I also want to travel and get involved in charity institutions as a volunteer. That’s what’s missing in my life. Just like the prodigal daughter [in the Bible], I want to go back to Him. Honestly, I almost lost my faith when I got sick. I’m not perfect. Nobody’s perfect, but why me Lord? But just the thought that I’m the one who’s sick and not any of my family, I’m [already] okay with that,” she said.

Looking back, Meanne only wanted a simple life, a healthy and happy family, a stable job until she retires that can help her family and other people. But now she’s sick, she can only advise other patients not to lose hope, pray, and always believe in what God can do.

“Miracles happen all the time. Just stay positive and strong! We don’t own our life, we don’t know when we are going to die, even healthy people can die anytime. Even if you’re sick, try to be a blessing to other people and become an inspiration to other people that life is still good and God is present in our lives. I’m still thankful, I’m still alive. I’m a living miracle. With God all things are possible,” she said.

For those who wish to help, any amount of donation would be sincerely appreciated. Please deposit to Marie Anne Magpantay (Metro Bank: 020 3020 193094, BPI Family Bank: 005843 1945 77, or Western Union: Marie Anne Magpantay)

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