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I was diagnosed with Multiple Sclerosis (MS) in December 2019. I've had the disease for ten years, but due to some unusual medical errors wasn't diagnosed.
The disease was active in those ten years, with in excess of 30 lesions (areas of nerve damage) on my brain, and too many more to count on my spinal cord. I suffered loss of vision, rapid fatigue, numb hands and legs and a host of other, often embarrassing symptoms. Like most sufferers I worked very hard to hide them of course!
I took a decision to pursue the most effective treatment available. Specifically a form of aggressive chemotherapy coupled with stem cell transplantation that is effective in putting MS into remission. it's called Hematopoietic stem cell transplantation (HSCT).
The decision wasn't taken lightly. There are serious risks and recovery takes almost a full year. But ten years of active, untreated MS is also serious. The more advanced the disease the less effective any treatment is.
The treatment is on clinical trial in Australia, but was not available to me in country. I was forced to go overseas, specifically to one of the world's foremost clinics in Moscow. If you're interested you can read more from the Russian clinic here:
https://hsct-russia.com/general-information
My MS is now likely in remission, though it's not known for certain for a long time. Success is measured by no evidence of disease activity (NEDA), so the longer nothing happens the better! My symptoms are already greatly reduced though.
The twist in the whole story is COVID-19. When I left Australia it was a non issue. By the time I had.my first dose of chemotherapy it was an emerging pandemic and the Government was calling us home. But too late for me by that stage :/
3 weeks later I was almost ready to leave Russia. HSCT destroys the immune system, killing MS at the same time. But it requires a period isolated in a sterile hospital room, only allowed to leave when blood counts reach prescribed levels. My blood levels went very low too. To the point I not only had no immunity to anything, but I couldn't walk 20m without feeling faint and had no platelets to clot my blood. Nose bleeds were constant.
When I was able to leave Russia had blocked all commercial flights. I would normally be fine to wait in the hospital, but a Presidential decree had also been made that all public hospitals were to start admitting COVID-19 patients in 2 weeks. Quite terrifying. To have no immune system, no way home and pandemic patients coming to the same facility!!
A fellow Australian patient and I, with the support of our amazing families back home organised a private jet from Moscow to Heathrow, where we could get commercial flights home. Unfortunately I had to fly via Perth. Brisbane flights weren't available. It was an unplanned $40,000 expense that we'd share, but what choice did we have.
And so we did. We escaped Moscow. But on arrival in the UK, as if I hadn't suffered enough, Virgin had shut down all domestic operations in Australia. I had no refuge in Perth, no immune system (hotels not an option!) and no way home apart from... another private flight. Another almost $40,000. And nobody to share this cost.
The great escape from Moscow cost my family $60,000 thanks to COVID-19. Instead of the $4,000 (business class) flight I had already booked.
The journey was 40 hours, through 4 airports on 5 planes, 1 day after emerging from isolation. I was exhausted, suffering chemo side effects and required wheelchair assistance at every stop.
Now back in Australia I am isolated at home for the remainder of 2020. Normal return to work is about 3 months, but with COVID-19 and no functional immune system the rules have changed. The plan was to support my family with my redundancy from Kaufland, but it's gone. Spent on charter flights. Not by choice!
And that's why this GoFundMe page exists. COVID-19 took the funds I had set aside to support my family while I recover from life altering medical treatment. A return to work was planned for 3 months post treatment, but thanks again to COVID-19 that's now likely to be 12 months. The money we no longer have needs to last longer than we'd ever planned :(
Any contribution is hugely appreciated. We'll come back from this, but 2020 is a genuinely tough year.
I chronicled the whole journey in a private Facebook group. if you'd like to see the whole journey you're welcome to join. Send me a reply if you're interested [email redacted].
The disease was active in those ten years, with in excess of 30 lesions (areas of nerve damage) on my brain, and too many more to count on my spinal cord. I suffered loss of vision, rapid fatigue, numb hands and legs and a host of other, often embarrassing symptoms. Like most sufferers I worked very hard to hide them of course!
I took a decision to pursue the most effective treatment available. Specifically a form of aggressive chemotherapy coupled with stem cell transplantation that is effective in putting MS into remission. it's called Hematopoietic stem cell transplantation (HSCT).
The decision wasn't taken lightly. There are serious risks and recovery takes almost a full year. But ten years of active, untreated MS is also serious. The more advanced the disease the less effective any treatment is.
The treatment is on clinical trial in Australia, but was not available to me in country. I was forced to go overseas, specifically to one of the world's foremost clinics in Moscow. If you're interested you can read more from the Russian clinic here:
https://hsct-russia.com/general-information
My MS is now likely in remission, though it's not known for certain for a long time. Success is measured by no evidence of disease activity (NEDA), so the longer nothing happens the better! My symptoms are already greatly reduced though.
The twist in the whole story is COVID-19. When I left Australia it was a non issue. By the time I had.my first dose of chemotherapy it was an emerging pandemic and the Government was calling us home. But too late for me by that stage :/
3 weeks later I was almost ready to leave Russia. HSCT destroys the immune system, killing MS at the same time. But it requires a period isolated in a sterile hospital room, only allowed to leave when blood counts reach prescribed levels. My blood levels went very low too. To the point I not only had no immunity to anything, but I couldn't walk 20m without feeling faint and had no platelets to clot my blood. Nose bleeds were constant.
When I was able to leave Russia had blocked all commercial flights. I would normally be fine to wait in the hospital, but a Presidential decree had also been made that all public hospitals were to start admitting COVID-19 patients in 2 weeks. Quite terrifying. To have no immune system, no way home and pandemic patients coming to the same facility!!
A fellow Australian patient and I, with the support of our amazing families back home organised a private jet from Moscow to Heathrow, where we could get commercial flights home. Unfortunately I had to fly via Perth. Brisbane flights weren't available. It was an unplanned $40,000 expense that we'd share, but what choice did we have.
And so we did. We escaped Moscow. But on arrival in the UK, as if I hadn't suffered enough, Virgin had shut down all domestic operations in Australia. I had no refuge in Perth, no immune system (hotels not an option!) and no way home apart from... another private flight. Another almost $40,000. And nobody to share this cost.
The great escape from Moscow cost my family $60,000 thanks to COVID-19. Instead of the $4,000 (business class) flight I had already booked.
The journey was 40 hours, through 4 airports on 5 planes, 1 day after emerging from isolation. I was exhausted, suffering chemo side effects and required wheelchair assistance at every stop.
Now back in Australia I am isolated at home for the remainder of 2020. Normal return to work is about 3 months, but with COVID-19 and no functional immune system the rules have changed. The plan was to support my family with my redundancy from Kaufland, but it's gone. Spent on charter flights. Not by choice!
And that's why this GoFundMe page exists. COVID-19 took the funds I had set aside to support my family while I recover from life altering medical treatment. A return to work was planned for 3 months post treatment, but thanks again to COVID-19 that's now likely to be 12 months. The money we no longer have needs to last longer than we'd ever planned :(
Any contribution is hugely appreciated. We'll come back from this, but 2020 is a genuinely tough year.
I chronicled the whole journey in a private Facebook group. if you'd like to see the whole journey you're welcome to join. Send me a reply if you're interested [email redacted].
Organizer and beneficiary
Jill OBrien
Organizer
Michael Jones
Beneficiary