FAQ's

 

 

Why Russia?

Dr. Fedorenko is internationally recognised and his protocol supported by peers.

He has treated 100s of international patients. He is a humanitarian that treats not only the disease, but the patient as a person.

The protocol in Moscow is 100% inpatient; this also streamlines the process into approximately 30-35 days and reduces the risk of complications and infections from outside sources.

Can you not get HSCT in Australia?

HSCT is possible in Australia for MS, but only under trial conditions and very strict criteria. Should the trial progress through its phases, it may be approved as a recognised treatment in 2022.

The very nature of MS is that it's unpredictable and time is of the essence, before the nervous system is further attacked and destroyed beyond repair.

Existing approved medications available in Australia will only delay the progression, it may take weeks, months or years, but progression is inevitable.

The aim of HSCT is to halt the progression of your MS.

You look really well; do you need to have HSCT?

The simple answer is yes . . . Since diagnosis, I have been on three different medications to try and slow down the progression of the disease and overall, I have done well over the years. The available medications are no longer suitable for me due to recently testing positive to the John Cunningham virus (JCV). For further details read my story section on this site.

How much money do you need to raise?

Working on current exchange rates cost for treatment and travel will total approximately AUD$80k inclusive. This includes testing, treatment, hospital stay, flights (business class) and transport to and from the hospital. This amount may go UP or DOWN between now and when I am required to pay for treatment in June. It all depends on the strength of the Aussie dollar. Fingers crossed . . . !

We are grateful to all who are able to assist in raising the funds needed for this treatment.

Anyone wanting to make a donation can just click on the link 'Donate'...

Why do you need to fly business class?

Business Class flights are encouraged due to the nature of the treatment, especially on the return journey. The patient will be weakened due to treatment and at an acute phase of recovery and susceptible to infection. Travelling business class will allow for comfort, but primarily isolation from other passengers, limiting risk of infection and cross contamination.

Is this going to fix you?

Fix. That depends on your definition of the word, much like *cure*. HSCT will stop the progression of the disease. Symptomatic improvement is common, but not assured; it's like a free gift with purchase, but without any guarantee. HSCT is the ONLY scientifically recognised treatment to destroy the underlying disease.

 

Are you scared?

I am more scared of the unknown future of MS, rather than the known success of HSCT.

When do you leave?

I will be departing Sydney Airport on 24 June 2016 to head to Moscow, Russia!

How long will you be away for?

I will be gone for about 35 days, however on returning to Australia I will be staying with my parents in Sydney for a few weeks to be close to my haematologist.

Will you lose your hair?

Yes I will. Some people decide to shave their head prior to leaving for Moscow so it is not too much of a shock when it starts to fall out. I haven’t decided what I will do yet, but I am sure to update things on my blog and Facebook page when I know.

The chemotherapy is the cause of this hair loss and it is considered a good sign that the drug is doing its job!

Who is looking after Tea, Sofia and Meja while you're away?

My mum and dad will do their best to keep things running smoothly.

My husband Jonas will be working away and supporting our family. I am lucky to have such wonderful friends and family who will also assist with the occasional sleepover or weekend activity. 

What is involved in your treatment?

The treatment that I am going to have is called a Autologous Hematopoietic Stem Cell Transplant (HSCT).

For a more in depth explanation please view the What is HSCT section on this site.

How many other Australians have had the treatment in Moscow?

Kristy Cruise first underwent HSCT in Moscow in August 2013. Since sharing her story, approximately 170 other Aussies have completed the treatment under the watchful eye of Dr. Fedorenko. 

Over a 100 others are booked in to have the treatment over the next two years and many, many more have been placed on a waiting list well into 2018!

 None of these figures include international patients, which there are many.

What will you tell Tea, Sofia and Meja?

The girls understand that my MS has been getting worse due to my recent hospital visits and are already feeling a little sad about me going away. I have sat with them and watched the 60mins story about Kristy Cruise and told them that I will be travelling to Moscow to try and stay well.

Like any child, they have concerns about their mum . . . This will be longest time that I have been away from my little ones. I am not diving into the detail too much for them and will stay in touch and try and stay positive.

How long will you be in isolation?

I will be in isolation for around 7-10 days.

What are you most concerned about?

I am most concerned about germs once I am released from isolation, particularly in the airport and plane on the way home. Because I will be immunosuppressed, I will be masked up, wiping every surface with Dettol and hand sanitizing every minute!

Are you worried you could die?

I would be lying if I said that this had not crossed my mind . . . The care and experience at this hospital is exceptional. All treatment protocol follows the guidelines of the World Health Organisation. No MS patient has died here from the treatment I am getting. I will stay positive and focus on being as healthy as possible. I have full faith in Dr. Fedorenko and his team.

Does the hospital staff speak English?

Most of the nurses and administration staff know very little to some basic English. Most doctors and specialists have basic to good English and Dr. Fedorenko and his assistant Anastasia speak very good English. Communication has been no barrier though.

What happens when you come home?

I will need to basically hibernate for the first 3 months due to my suppressed immune system. I will need to ensure everything is as sterile as possible and be careful with what I eat until my strength returns.

How long will recovery take?

This can take up to 6 to 12 months to recover from treatment, with full benefits achieved by 2 years.

Can we visit you when you get home?

Initially I will not be able to have visitors due to my low immune system, but phone and digital contact will be very much appreciated! Over time this should improve.

If you have any additional questions, please contact me.

Hope. Love. Live.

Megan x