Still fighting 17 months post transplantation 

Still fighting 17 months post transplantation 

I have finally decided to come out… of my bedroom in my mothers house in order to pursue further treatment following my HSCT treatment 17 months ago. 

This treatment that I am pursing is called Mesenchymal MSCs. 

In short, MSCs’ operate by introducing large populations of ‘blank’ cells into the body. These cells then travel to damaged areas within the system that require correcting and assist with work on repairs, in essence enhancing the body’s natural repair processes in correcting damaged cells. 

If you are not the reading type and are more of a visual person, who chooses not to see my visually pleasing blog with super fun images mainly of myself😆 (no matter, I will still give you a hug). 

If you do need more information to absorb the diagram above, just let YouTube explain everything in this clip including scary cute animations the how MSCs helps the immune response. 

I am fortunate to be living at home under the gentle care of my adorable long suffering mother whilst recovering from my major attack that left me in a terrible state and considerable damage to brain / spine. This attack occurred two years ago. *refer to previous blog posts. My treatment was subsiquently followed up by receiving myeloablative hematopoietic stem cell transplantation (HSCT) that successfully ceased my active MS. YAY! Excellent! 

This seriously was truly a life saving treatment. Now the next part of the journey begins as I seek to help repair the remaing damaged cells as they are slowly busy repairing itself. 

The best thing I can do now is to provide a new opportunity to my body and boost the repair process with mesenchymal MSCs treatment for multiple sclerosis. 

I hear you all think “what have you been doing all this time Irene aka awesome fabulous woman?” Yes, I know what you are all thinking, bless you all 👄 
Well, I have been actively focused on my rehabilitation which involves physiotherapy, mindfulness, hydrotherapy, physiotherapy, brain lazer therapy, congative, dexterity therapy, more physiotherapy, blogging of cause and recently pursuing elocqution lessons of all things…in short, a number of therapies; all in accordance with my personal directive to never give up, never surrender💪 

This October I am travelling to Bangkok to receive MSCs treatment that might  assist in repairing damaged part’s that affect nerves in by hard-working body. 

I will keep posting my progress. 

    Love Eirini xxx

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    NO ACTIVE MS! 6 months post transplant

    I am happy to report that my six (6) month MRI shows no active disease!

    So the wonderful HSCT treatment was successful in stopping my MS from attacking my brain! YAY! Although unfortunately, I am very aware that I do still have many lesions (scars) in my brain and spine.

    Check out below one of my MRI slides of my adorable brain, the white parts are damaged bits:

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    MRI slide of brain and spine
    Irene Christis

    I have been recovering since my mayoblative HSCT treatment that was performed at St Vincents Hospital in Sydney by the brilliant team under Dr Moore on 1 April 2015.

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    Irene Christis

    The treatment process and chemotherapy were ridiculously intense.

    That was the most scariest, last best hope to treat my MS – quote from Babylon 5 come on I had to get my geek on 😉

    Following a lengthy stay in Canberra Hospital that resulted from a significant MS attack leaving me immobile and unconsciousness. I was hovering around 9 on the below EDSS scale  graph. 10 is death.

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    Expanded Disability Status Scale (EDSS)

    The Expanded Disability Status Scale (EDSS) is a method of quantifying disability in multiple sclerosis and monitoring changes in the level of disability over time. It is widely used in clinical trials and in the assessment of people with MS.

    I  knew that I had get up, move and work extremely hard to be able to meet the criteria for the Autologous Hematopoietic Stem Cell Transplant (HSCT) treatment.

    I had to be 6 on graph and walk 100 meters. I started with small improvements from moving one toe to eventually walking with cruches.

    I JUST KEPT BELIEVING THAT I COULD.

    I have to say that the HSCT treatment  process was seriously terrifying, life changing and nessary for a chance of quality of life.

    Currently I am keeping busy with lots of rehabilitation both physical, mental to remap my neurological paths…kind of like renetworking a computer system.

    Plus many more medical appointments and a much needed mother daughter vacation!

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    Mum and Erini on holiday

    Back to reality doctors, medications, physiotherapists, acupuncture….blah blah. It’s all good, I’ll keep moving forward getting stronger and working on my showy off muscles 💪

    Love Irene xxx

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    Stem Cell Treatment for Irene Christis Elliott !!!

    Yay let the next chapter begin!

    I have been approved for Autologous Hematopoietic Stem Cell Transplant (HSCT) treatment in St Vincent ‘s hospital.

    i have set the target for HSCT and mapped this journey for years.

    My approach was always to never gave up, never surrender. As much as the destination seemed unachievable, I just kept going and always regularly reviewed my path toward the target.

    This next part of this journey is going to be rough but there is hope.

    I am staring the first round of chemo and stem cell collection in December 2014, with the massive chemo session planned in January 2015.

    For now I am still learning the walking bit – keep reading my blog during this
    Life changing treatment.

    Love Erini xx

    The MS monster returns

    So I’ve finished the steroids and just on cue the disease rears it’s rotten head. Day 2 of non steroids and my situation is getting worse.

    I did quite well (well as best as I could) in the install stages whilst on steroids, and and now I’m back to how I was in my initial relapse.

    So I called Dr Andrews right way to start Mitoxantrone – this hopefully will hold me until my Stem cell treatment.

    I have applied for Autologous Hematopoietic Stem Cell Transplant (HSCT) treatment, in Italy and Germany, I will also apply for treatment under Dr Burt in Chicago.

    Bugger, I’m right back to when I started, pretty rotten.

    Omg I have active lesions!!!

    That is the last thing I need to be treated in Sydney!!!!! This is so freaking amazing 😀

    I do have an massive relapse and so im on a 5 day course of methylprednisolone (steroids) – poor little Gus…he has fur now, but can’t say if his fur will be there or the same colour during this week 😀

    If I don’t get into Sydney which is not confirmed, im getting the plan B-Italy, and D-Germany organised. Its all good. I just hope to walk again, kinda sick of falling.

    MS – Fertility, blessing, curse

    MS is a bloody rotten illness; it takes over your life your partners, your family and the community.

    For my family the illness has taken so much. The constant medical efforts, multiple Doctors, Neurologists, hospital, surgery, masses of medications, MRI & blood tests…the list goes on and on.

    HOPE is a wonderful beautiful blessing. The hope that was lucky to have received is called HSCT.
    I am so fortunate to have an amazing husband and a brilliant family who offered the gift of hope. Plus I am blessed to be good friends with HSCT champion Carmel Turner who shared her HSCT experience and provided hope of a quality of life.

    How amazing is the hope of news that there is a treatment that has promise to rid my MS!!! Wow it’s like all my Easters (better than Christmas in the Greek culture) and birthdays combined!!

    Fertility & HSCT
    In June 2014 I will be receiving HSCT, which means freedom from MS! and hope for quality of life for me, my family and my community.

    I am totally super happy about that and at the same time I can’t help but think about everything that I lost or did not have the chance. My thoughts about fertility are deep and intense. I am so annoyed pissed off that I may not have a family.

    I am 36 now and there is no secret that I have always wanted to have children.

    We have wonderful clever birds, two adorable dogs and coy fish, perfect buddies in our family and maybe even kids.

    Up until now the journey has been pain survival and the unfortunate situation now is that I might be in a better position to be a mother (to human kids that is).

    The fact is that we are getting older and really want to do things together like travel, hike, ride push bikes together, bucket list things.

    My wonderful husband and I have been talking together about the kid thing, the risks if the illness comes back, of the kid gets my rotten MS, how my body will cope with pregnancy. There is a lot to consider.

    I was planning to have our embryos frozen for the choice (false or other) to have kids when I recover from Chemotherapy.

    There is still so much tho think about for example we could adopt, we always considered this even pre-MS. It would be a gift to have the opportunity to be parents to a child that needs a home.

    Still so much to think about …. Keep reading my blog and any thoughts are welcome

    Love Irene

    WOW – treatment overseas!

    I am really getting this treatment!!!!

    I received the most amazing news ever from Dr Admit – I have been accepted for HSCT in India!!!!

    It has been a few weeks since I received this wonderful news and to be honest I am still in shock, terrified and so very elated all at same time. At the moment, I’m pretty terrified. But so very happy!!! Oh yeah, and still a bit shocked.

    Thank you so much everyone for helping me with my Big Fat Greek Fundraiser, your amazing support is amazing and so beautiful. The process from now until treatment in India is crazy overwhelming and the support from my fundraiser is a tremendous help.

    I have been trying to get access to this treatment the last best hope for myself for so long now.  I read the acceptance email over and over. And tuned off my computer and then re-read the email. Had some lunch and re-read the email.

    I still have so much to do organise a timetable and create an end-to-end schedule, Visa, will, accommodation, flights, travel insurance, doctors now and also on return including Haematologist, freeze my eggs, organise HR leave without pay, bills, sell cars…wow this is huge.

    The amazing outcomes from the Big Fat Fundraiser are all the amazing conversations that have stated from this event, which have led to more discussions with MS mates, members of Government and hopefully actions.

    This is so amazing!

    I look forward to sharing my journey with you and hopefully chat with you on Skype.