When I received my diagnosis in 2017, I was still relatively normal.

I could still move about like an ordinary person, I just did my daily activities more slowly. For instance, I took longer to walk as compared to a normal person since the pressure in my lungs would be seven times more than the average woman who is my age.

But when my condition began to deteriorate severely, I started using a wheelchair as I would be too breathless to walk. Friends who used to wait for me to catch my breath, would now push me around in my little wheelchair. Life became very inconvenient.

That said, when it comes to the emotional and mental side of things, I’ve actually improved on my overall self-awareness; I have to be extremely observant of how my body is feeling and diligently document every health-related thing down.

It improved my mental wellness also, as I was forced to set up good habits and establish structures to survive through the mental pressures I was facing that came with the illness emotionally and physically.

It has taught me to celebrate and count my wins. Nothing is too small to not celebrate or to appreciate. 

With the good habits that were established during this journey, it helped me be extra disciplined with my spiritual disciplines, which many times were the main pillars that tided me through many intense episodes.

What helped was things like sitting down and processing emotions regularly, worshipping God by myself and also with my husband, and constantly fixing my eyes upon Jesus.

Tracing heaven’s handprints

Jesus has shown me consistently that He is with me every step of the way and in every moment of my pain.

Many times, I would experience Jesus in my bedroom especially whenever I have sleepless nights due to the numerous unbearable side effects of my trial drugs. On such nights, I know that Jesus is the one who sits beside me on my bed.

I also know He has the ability to remove my pain or bring immediate relief to me. Sometimes He does, but most of the time I just feel His close and evident presence to me instead.

Hence, I have concluded deeply that His presence is more precious and greater than whatever pain I may be going through.

I have also seen God loving me through those around me, such as my faithful and committed group of godly friends and church community. I often feel undeserving of the amount of love and support that I have received from them.

My community loves me through providing emotional, mental and physical support. For example, my group of close friends would check in on me regularly and help to process my emotions and feelings with me whenever a significant episode happens.

They also help to bring my wheelchair back and forth from the church office to the car, enabling me to still be in fellowship with others – even empowered to serve the young adults in our midst!

The hope of grace

Certainly, it is by the grace of God that I am able to go through each day.

I have an understanding and confidence that all that I am going through will not be in vain and will count for something.

Whatever that I am going through can be used by the Lord in the future to minister to others of various experiences. 

In addition, the support and love of my husband gives me the strength to focus and will myself to go on this journey.

I am doing my best and my part to help build the possible future that we will have together.

The help I need 

We relocated to San Diego at the start of July to obtain a drug, Sotatercept, that is available only in the US. Each jab that is administered every three weeks costs us $15,000 USD. We also came here to seek a lung transplant.

We have more or less settled down here in San Diego, and are now waiting for funds to come in to start our pre-transplant treatment at the hospital. The hospital requires us to pay $1.5 million USD in full before any treatment can begin. We hope we can start treatment by the end of the month.

Additionally, we appreciate prayer support that we may be sustained by the Lord to go through these tough times, in all areas!

My next steps are waiting for my pre-transplant programme to start. I need to get back in shape, in terms of muscle mass and nutrition, so that I may be eligible for the transplant surgery.

We will wait for a suitable donor to come by, which will take approximately 3-9 months, and continue with the transplant surgery, post-surgical care and treatment. Post-care will approximately take another six months to a year for full recovery.

I look forward to returning to Singapore after my post-transplant care to collect the keys to my BTO! I also want to resume serving with the young adults and worship ministry at church.

I long to be reunited with my community and to celebrate the adventure that I have been through as a conqueror.

If you’ve been on a similar path as me…

I believe that nothing is by chance and that the Lord is always happy to be invited into our circumstances.

Invite Jesus into your difficult situation. Allow Him to work through this difficult route with you. He knows what matters to you and is more than capable to carry your burdens. With God in our circumstance, nothing will be wasted. 

Be unafraid to be vulnerable and engage your spiritual community, involving them in your journey. They will be a great resource for you in difficult times.

As your situation may be unique, share specifically and practically on how they may support you. That will be most helpful to yourself and those around you so they can render support effectively. You don’t need many friends – you just need a handful of solid and godly ones.

Finally, I want to leave you with some key truths that I’ve gleaned from verses, which have served my heart well:

• God will reveal His good purposes and work for the good for those who love Him (Romans 8:28).
• I must trust in God with all my heart and lean not on my own understanding (Proverbs 3:5-6)
• God gives me my future and is in charge of it (Jeremiah 29:11, Deuteronomy 31:8)

If you wish to learn more about Amanda’s journey and support her, you can do so here. Thank you for making a difference to Amanda and her loved ones!