My Story of Navigating the Uncharted Territory of Severe Aplastic Anemia

How did you go about seeking a diagnosis?‍

After getting a blood test, the GP informed me that I needed to go to the emergency immediately, possibly for a blood or iron transfusion. After more tests, the doctor told me that I had to stay in the hospital indefinitely, as they suspected I had leukaemia. After a week of further testing, including a bone marrow biopsy, the haematologists deduced that I likely had myelodysplastic syndrome, instead of leukaemia.‍

How long did it take for you to receive a diagnosis?‍

It took a few months for me to receive my official diagnosis, as I had to move to Singapore to continue treatment. Finding a matched donor for a bone marrow transplant as soon as possible was paramount, and my chances of finding a donor would have been higher in Singapore. When I got to Singapore, I was tested again and that's when they officially diagnosed me with Severe Aplastic Anemia.‍

How did you feel when you received your diagnosis?‍

It had been an exhausting journey getting to the point of official diagnosis. I had to say goodbye to my friends and my home in Australia, and my newly and hard-earned career as a pharmacist. I have to admit that I was naively positive, thinking that I could go back to my life easily after I received my bone marrow transplant. Little did I know of the roller coaster journey to come.‍

How did you communicate your diagnosis with your loved ones?‍

My then boyfriend, now husband was with me when I first went to the emergency department. He had to call my parents living overseas, and my work to tell them I would not be coming into work indefinitely. Even as my diagnosis changed, he was the one to provide my loved ones the updates on my condition. I wasn't in any mental and physical shape to talk about it yet. But as time went on, I realised I needed an outlet to process everything. That was when I started a blog that also served as a newsletter to update people on my diagnosis and ever-changing journey.‍

What treatments have you undergone and how have they impacted you?‍

Unfortunately, my path was extremely complicated. Apart from the chemotherapy, radiation, and bone marrow transplant for the aplastic anemia, I suffered from other skin, gut, eye and joint conditions. To name a few, I had graft-versus-host-disease (GvHD), Posterior Reversible Encephalopathy Syndrome (PRES), multiple viral and bacterial infections, cytomegalovirus retinitis and other eye disorders such as cataracts and retinal detachment, as well as osteomyelitis in my knee joint. This was what led my expected 6-month journey to bleed into 3 years.

A lot of these conditions have ongoing effects: I have permanent partial blindness in my left eye, chronic graft-versus-host-disease-induced rashes and fatigue, and just recently I had cartilage implant and bone graft surgeries on my knee. Some days I feel like I'm on top of it, some days I feel down and defeated. But for the most part, I feel like I've been through the worst and yet survived. Having been through so many surgeries, treatments, and testing, I've honestly surprised myself. I've come out knowing what it means to truly suffer and to be able to relate to and comfort others that are on a similar journey.‍

What is the most difficult part of your treatment, and how do you manage it?‍

A lot of it was difficult - the chemotherapy and radiation, the weekly eye injections, the bone marrow biopsies, suffering unexpected seizures as a side effect of my medication, and much more. These coexisting conditions made it very difficult for my bone marrow to function normally, even after the bone marrow transplant. I think it was the seemingly infinite punches my body had to take that was the most difficult thing to grapple with. I felt like I could not catch a break, going from one problem to another. To manage this, I tried to count my blessings and embrace the little joys in my life. I looked forward to spending time with my baby nephew, and playing games with my friends who came to visit. It was the little things that brought me so much joy!‍

What has been the most challenging aspect of living with your condition?‍

Due to my partial blindness, knee issues and weak immunity, I haven't been able to go back to living a full, uninterrupted life. I had to let go of who I was and the things that I used to do with so much ease. Essentially not having the freedom I used to is the most challenging.

“What you're going through is shaping you, don't let the opportunity to love and live in the midst of pain pass you by.”

How has your daily life and routine been affected by your condition?‍

I've been advised not to drive anymore, and being visually and physically impaired has made normal tasks extra challenging. I'm unable to read small texts and I have to wear bifocal lens glasses, which is abnormal for someone my age. Chronic GvHD is also something I battle with daily, it means my skin and mucosal surfaces are extremely dry and sensitive, and I have to be careful not to trigger an attack. A few years ago I had a severe second bout of acute GvHD and had to be treated with high-dose steroids again, which in turn weakened my immunity and caused further deterioration of my knee joint.‍

How has your condition affected your mental health and emotional well-being?‍

Being a transplant patient has brought out the good, the bad and the ugly in me. My emotions have been through the wire - I've been angry, hopeful, disappointed, accepting, and fearful. Sometimes I experience all these emotions in just one day. It has been tremendously challenging having to manage my emotions and thoughts for the past 7 years.‍

What strategies have you found helpful for managing your emotions and thoughts?‍

As difficult and confusing as it has been, I've learnt to process my emotions and thoughts through writing. And because I grew up dancing, I've found a way to dance, even with my limited mobility. But most importantly, I have my faith that anchors me and people that I turn to, to talk things out.‍

How has your diagnosis impacted your relationships with your friends and family?‍

My diagnosis and conditions have been exceptionally tough on my loved ones. My mum has had to drop everything to care for me. At times she's had to bathe, dress and push her daughter in her 30's in a wheelchair. My dad was my bone marrow donor - he was 68-years old at the time and was already diagnosed with Parkinson's disease, but he did not hesitate to save my life. My parents’ and brother's love for me is unconditional, and I've learnt to just receive their love without feeling guilty.

My husband has been my rock throughout - we were only 2 years into our relationship when I got sick, but that did not stop him from choosing to love me through it all. And my closest friends have embraced me and my scars so beautifully, they just know how to comfort me in my most raw moments. I'm so grateful that these recent painful years have brought me and my loved ones closer than ever. Although I lost some friendships, I'm grateful for the ones that have endured the test of this journey.‍

What support systems have been helpful during your health journey?‍

My husband, my family and my closest friends have been my greatest support. Also having the support and encouragement of my haematologist, hospital staff and church family have been so helpful to my recovery.‍

What advice would you give to someone who has recently been diagnosed with your condition?‍

My advice would be to have a haematologist you trust to treat you - it will make all the difference when you're confused about what to do. Take it one step at a time, give yourself lots and lots of grace, and trust that everything will work out the way it's supposed to.‍

What advice would you give to your past self if you had the opportunity to go back in time?‍

I would say: Yes, this is the most confusing, heartbreaking, numbing, frustrating, and disappointing time in your life, and there are not enough words to explain it nor remove all of it. No one is going to fully understand how you feel but the people who love you are trying their best to embrace you through it all. You will not be the same person you were coming into this season of your life, but you will come out of this a more understanding and wiser daughter, sister, wife and friend. What you're going through is shaping you, don't let the opportunity to love and live in the midst of pain pass you by.‍

How can others be more supportive and understanding of people with your condition?‍

Bone marrow transplant patients are usually forever changed by what they've gone through. I hope that others understand that even though we may look fine, we still struggle with things that are invisible to the eye, whether mental, emotional or physical.‍

Looking for support and resources as a fellow Severe Aplastic Anemia warrior? Click here.

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‍Are you a chronic disease warrior, or know someone who is? We would love to hear your story! Contact us at marketing@jonda.io to find out more about how to get featured on Jonda’s Patient Voices. Let's inspire and educate others facing similar challenges by sharing our unique health journeys and raising awareness, together.‍

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Disclaimer: Please be aware that the content of this patient story, is solely the viewpoint of the individual(s) involved and should not be considered as medical advice.