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

    Advertisements

    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:

    image
    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.

    image
    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.

    image
    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!

    image
    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

    Posted from WordPress for Android

    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.

    THE RELAPSE – what happened to have gotten to this stage

    There was a state long weekend and it was on the public holiday when I happy drive 30 odd kilometres across town to visit my drear friend and her baby on Monday. No drama, everything was all good, I was a bit wobbly but walking just fine. I played and spent time with my dear friend, at the end of tge visit I was very tired, but playing can do that to one.

    The next day I was due to have an MRI and so I popped into my car to drive there but as soon as I turned the corner, just like that, I lost the feeling in my legs. I pulled on the emergency brakes and roght away called my aunt who lives a couple of blocks away (yes , I get it, how very typically Greek to live so close to my family and lucky for me) I was in tears and ask her to come and help.

    She picked me, she was also teary, she is amazing and took me to the soon to be life changing MRI appointment.

    MS can effect you just like that. Attacks are so quick, unexpected and doesn’t discriminate.

    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.

    Crap – not getting treatment for my MS

    OMG I receive an email from India that the Manipal Hospital – Bangalore are not accepting any cases for Stem cell treatment towards Multiple Sclerosis from immediate effect. This is as per discussion with the scientific committee.

    Including me!! WTF!! 

    I will not be getting treatment for my MS…well in the few months anyway.

    I had planned to fly out first thing in June. I had made significant perpetrations for the journey, paid for all three airline tickets (mum, husband and myself), resigned from my job and gained the required Visa’s for my treatment. I am now left with no treatment options.

    This decision could have not been worse been so close to my agreed start date for HSCT at Manipal hospital.

    It feels like I was jumped by faceless thugs, kicked over and over in the gut and still feel winded. As you can tell I am left deeply distressed…well frankin pissed off!

    Just to rub salt into the wound further, my tests for the progressive multifocal leukoencephalopathy (PML) returned positive that means I am at risk of the nasty JC virus which affects heaps symptoms include:

    • Abrupt or significant personality changes
    • Recent or sudden change in cognitive behaviour
    • Unusual difficulty with speech
    • Other physical changes

    Currently no known treatment, prevention or cure for PML.

    So I will be applying for treatment in other overseas hospitals keep watching for my progress

    Love Irene