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Nurses battle against Multiple Sclerosis

  • Hello from Moscow!

      13 August 2018

    The stem cell collection needed to be done over two days as I got about 60% required from the first collection and then the same again the next day. The Apheresis process wasn’t anywhere near as bad as I was expecting so two days of collection was the easy part…. So far!

    Next up was four days of Chemotherapy infusions which was fine for the first two days then the effects really started hitting. No major sickness, just off food and feeling below average. However, to protect my kidneys from the chemo the flushing infusions meant for rather frequent Loo trips! So fair to say that I’m sick of the inside of the loo!

    One rest day after chemo then the BIG day – 08.08.18 Stem cell transplantation! What an experience… very hard to put into words what an all-encompassing feeling such as reinfusion of my stem cells was. I will remember the strong smell and taste of tomato paste as they were being put back in though!

    The whole process literally wiped me out cold. It started at noon and I didn’t really come around again until 4pm when my worried husband rang to check up on me! It was Lucky he did because I was able to then join in on the celebrations with two others who received their stem cells back that day. We each got an Iris pin symbolising new life, got to spill some liquid nitrogen, and share in some cake.

    The very next day I started isolation – no mucking around! So daily bloods and infusions, regular vital signs and all that jazz. Not really impressed with the isolation clothing though – feeling like an inmate in white pyjamas! Isolation can last anywhere between 8-12 days and I’m currently at day 4…

    I’ll be doing my best to keep occupied in the routine of isolation. Cross your fingers that my numbers are remarkable enough that I’m at least allowed out of my room in ‘mask mode’ by day eight!!

    The countdown is definitely on and I’m itching to get home to my family!

    Xx Jenny

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    • 04/05/2022 by Celia

      I was diagnosed in 1996, before symptoms started. I am a pianist, suddenly unable to open my hands wide enough to get 8 keys. Nobody in my family had MS, nor my grandparents. Last year a cousin younger than me had MS, she is 40. I have primary progressive MS. I do not walk for the last 18 years, I was born in 1962. I have had 6 strokes and 1 heart attack.The Rebif (beta-1a) did very little to help me. The medical team did even less. After roughly five unending years of trauma in the family my MS developed into progressive. There have been many changes in the last 3 to 4 years. Many falls, many fractured bones, and three moves all in five years. I have gone downhill. Considerably. We tried every shot available but nothing was working. There has been little if any progress in finding a reliable treatment for Multiple Sclerosis, I started on MS Herbal Treatment from Kycuyu Health Clinic, the herbal treatment immensely helped my Multiple Sclerosis condition, i had huge improvements. Go to kycuyuhealthclinic. com. My life is back. I Adhere anyone reading this to try natural approach.

  • 11 days in :)

      3 August 2018

    Hello all!

    I am currently 11 days in now and there’s plenty to report thus far…

    After my testing day I managed to take a little tour with Alexey who showed me the sights of Moscow catered to my degree of disability. I got to experience real crazy Russian traffic (road rules are merely suggestions!) and I got to see the Red Square. Not a lot of time or opportunity for souvenir shopping but we did stop at the beautiful GUM department store for an ice cream and lunch at a delicious Russian/Ukrainian restaurant! I even got taught how to drink vodka the Russia way – with food!

    So after all my testing I was told there were no contraindications and given the green light to go ahead with treatment (which I was expecting anyway). Dr Fedorenko revealed that I have 40 lesions in my brain – which obviously sounds like a lot – but it only takes a few to really cause problems. For example, the lesions in my cerebellum, brain stem, and c-spine have the collaborative effect on my ability to walk for very far or very long.

    I had suspected since the beginning of the year that my MS was progressing without having had a relapse so I saw a Neurologist in Christchurch and tried steroids for worsened symptoms but it didn’t last. According to Dr Fedorenko my disease has likely been progressing from Relapsing Remitting to Secondary Progressive…. So needless to say I am SOO glad that I am here now before any more damage is done!

    Treatment was kicked off with stem cell stimulation, including steroid infusions and nightly injection for four days. Then for 5.5hours on Tuesday and Wednesday I was hooked up to the magic machine that separates the stem cells from the rest of my blood. From both days we successfully collected >200million stem cells!

    The next step: on Friday I start four days of Chemotherapy to wipe out the T and B (immune fighting) cells in my blood. So I guess I’ll be laying low for the next wee while as do my best to weather the effects of the chemo. The nurses have already stocked my room with protein drinks I can only assume in anticipation of minimal appetite!

    Whish me luck in this next phase of treatment! I will keep you all updated once I’m through the other side of the chemo!

    Much love from Moscow

    Xx Jenny

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  • Greetings from Moscow!

      24 July 2018

    After seven months of preparation, planning/fundraising and almost 30 hours of travelling I am finally here! I will take this chance to thank everyone who helped me on my way to Russia as the overall funds raised since starting up this page, and from the quiz night, was $41,000! That has gone a long way to reducing the loan needed to get the HSCT, so thank you all!!

    So, two 10 hour flights and a lot of time waiting in transit… not a lot of sleep gained during that time either. Upon arrival at the hospital I was in shock, and sleep deprived, so I cracked and had a bit of a cry while thinking “What the hell am I doing?” – thankfully that didn’t last long though. Much better after I had a shower, went for a tiny stroll, rested, and had a video chat with Hayden.

    Dr Fedorenko has become a bit of a celebrity after viewing the posts of anyone else who has been under his care here in Moscow, so when he came to introduce himself I was a little bit start struck! I am happy to find that Dr F does indeed live up to his reputation as a lovely caring man.

    I packed a nice selection of my favourite sweet only to have my new filling fall out when chewing on a Mentos! My first day here and that happens! The universe is conspiring against me to eat less sweets and chocolate!

    From what I have seen so far, Moscow has a LOT of trees… tall trees… even more so than Christchurch. I couldn’t help but think of the TV shows with Russian dash cam footage of crazy driving during my trip to the hospital. A lot of quick (and tight) lane changes that would entice a few horn blasts back home! Further to my observations, as a nurse I’m noticing odd things. Like the fact that there are no hand basins inside patient rooms for staff to wash their hands, although the staff all wear hair/head covers all the time and often masks too! Also, the bizarre ECG machine they used on me that had wrist/ankle clamps and suction cups for the leads.

    Tomorrow is a big day planned with all sorts of tests to make sure I’m fit to start treatment. After that I will get a chance to sightsee for one day before treatment actually starts.

    Until next time

    Dosvidanija

    Xx Jenny

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  • 45 days to go.. :)

      10 June 2018
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    Hey everyone!

    It’s exactly 45 days until I depart on my Russian adventure! Why so precise you may be wondering... well it just so happens that Russian Visas can only be issued within 45 days from departure so I have been waiting for this day to send mine away!

    I’ve never had to apply for a visa before so this was a daunting process, especially due to the reason and importance of my trip! However with a little help from Paul (who has just escorted his lovely wife Andrea over to Moscow for HSCT) I’m 99.9% sure it will be issued without problems 😄👍🤞

    So with that job sorted and out of my hands I can get back to prepping this Fundraising Quiz Night to be BIG fun and a BIG success!

    On that note, thank you to everyone who has paid for their table/team already. Everyone yet to pay please have payment through by Sunday 1st July so I can make sure you get the tickets before the night!

    We have three tables available at present so if there’s anyone still keen to come along please get in touch!!

    With just four weeks to go the quiz night is shaping up to be loads of fun with some awesome raffle prizes and auctions thanks to some amazing donors 🙏👏😄

    Xx Jenny

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  • Pies, Pizzas, and Plane tickets!

      26 May 2018

    Hi All!

    I now have my flights all booked and paid for! I am flying with Singapore Airlines which will be direct from Christchurch with just one stop-over in Singapore. It has worked out well as I wanted to get to Russia as direct as possible without much waiting and shuffling between connecting flights. Now I just need to get my Visa sorted which has already been a bit of a process!

    I had intended to advertise my Fundraising Quiz Night here but the amount of support we have had means that all 40 tables have effectively been booked up! The tickets have arrived from the printers so we are now in the process of confirming tables, taking payments, and getting the tickets out! 👍

    xx Jenny

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  • 12 weeks until I’m in Russia 🇷🇺!!

      2 May 2018
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    30.04.18 - This marks the day my ‘washout’ period begins - no MS drugs during the three months before treatment!

    Today was the last day I’ll be taking these little capsules which Novartis claim reduces the chance of relapse by 80%. In NZ they are one of two first line MS drugs funded by Pharmac at a whopping $2,700 a month 💰!!

    Despite Novartis’ confidence in their drug I have relapsed in the 3years I’ve been taking Fingolimod and symptoms affecting my mobility are getting worse...

    I could be feeling scared and vulnerable about stopping the meds now but considering things were getting worse even while taking them I’m not. It’s a good time to remind myself that this HSCT will have up to 90% chance of STOPPING disease progression when all the Fingolimod could do was reduce the chance by 80%... and it wasn’t helping me anyway.

    Deciding to have HSCT is the best decision for my future as a Mum, Wife, Nurse, daughter... and all the things in my life that I value while being able bodied without limitations.

    ...AND an added bonus is Pharmac can put that $ once spent on me toward funding drugs for someone who will benefit from it more than I did!

    Some news to share: I saw my Specialist (Dr Mason) on Monday and discussed going to Russia for HSCT. She did another neurological exam to document my Pre treatment EDSS (disability score) and is keen to follow my progress on my return so that my results can be added to the global collection of data for HSCT. I’m more than happy to be an example of a treatment success!!! 🤞

    I have also been referred to a haematologist to track my blood work when I get back to make sure my immune system is rebuilding as expected.

    As for today, it started out great as it was a ‘me’ day - no kids, no work, no hubby - just do what I want 😝. I got some errands done, washing done (with the sun finally out!), a small amount of retail therapy from the clearance racks...

    It was good, but I must have overdone it and my legs were rather lethargic. Arriving at ABC to collect Georgia I tripped up the steps 😖. Thankfully I didn’t get hurt. I might not be able to stop myself due to shitty balance but so if I do fall it’s usually a slow clumsy fall and not a great whallop!

    My pride and resolve takes a hit with each fall and I have a bit of an internal pity party, but I have to keep on keeping on... it won’t be like this forever! Bring on July23rd! ✈️🇷🇺😁

    Xx Jenn

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  • QUIZ NIGHT - 5th July. Tickets available soon :) Save the date!

      23 April 2018

    Hi Everyone

    13 weeks until I depart for Russia!

    The fundraiser is fast approaching and we have been trying hard to source prizes and items over the last few weeks.

    I’m excited to say one of the main auction prizes is a return helicopter flight to Pegasus Bay Winery for [4] people piloted by none other than Richie McCaw, kindly donated by Total Ceiling Solutions. A three course meal and wine tasting is also included courtesy of Pegasus Bay along with copies of Richie’s book 148 kindly donated by Whitcoulls!

    I am so heartened by the generosity of others and the support both individuals and businesses have given to my cause.

    I hope to put and update up soon with more prizes which will be on offer on 5th July and if anyone would be in a position to donate items or services or know of any businesses who would be able to do the same we would be so grateful for any support.

    Tickets for the fundraiser will be available soon and will be sold as tables of 8 so get your team together 😁

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  • 16 weeks to Go :D

      3 April 2018
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    16 weeks to go!

    Warbirds Over Wanaka was amazing!! We had such a good time at the Airshow and Easter break with my Dad and Sister. Lots of reminiscing of times spent during our childhood wandering around the Airshow while Dad organised and displayed his Warhorses.

    It was great going back although very different as I spent the majority of the show parked up enjoying the displays and much less time wandering around. Big props to my support crew who chased after the kids and lined up in queues for far too long to purchase food/drink!

    We’re already planning to go back in 2020! Although by then I plan to be much more mobile as I’ll be 20 months post HSCT and hopefully not held back by MS symptoms!!

    During February I saw a Neurologist about the recent decline in my mobility and tried Baclofen. It didn’t help so I was then prescribed some steroids which initially helped but unfortunately it didn’t last. The side effects of the steroids are unpleasant enough that I really hoped it would all be worth it in the end, but it hasn’t turned out as beneficial as I’d hoped. It feels like the right leg/foot drop issues are cropping up again... So this might just be how it’s going to be until I get the HSCT in July/August 😞😕

    My sister Alice has organised a ‘High tea at the races’ event on Saturday 21st April from 10am at Riccarton Park Racecourse. For $32.50 you get a glass of sparkling wine (or OJ), High Tea treats and eats, and enjoy some race action. $10 from each ticket sold will go towards my HSCT fundraising. If this sound like you then keep the date free and get in touch with me or email alice@riccartonpark.co.nz for more info and tickets.

    No rest for the wicked - I was given the opportunity to do a sausage sizzle to raise some money so we’ll be busy dishing out the sausages to kids and parents at the Huxster MTB Trust School Team Relay at McLeans Island on 4th April. We also plan to continue our appeal to businesses for support for the fundraising evening so we can offer lots of goodies on the night!

    Hopefully soon I will have my flights sorted so I can tick another box in preparation for Russia!

    Xx

    Jenny

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  • Update from Jenny, change of date :D

      8 March 2018

    Hello everyone!

    First up I have to say a massive THANK YOU for the incredible support I have received so far! I am very touched, and encouraged by the many messages and well wishes from people far and wide. It’s true that you don’t know just how much people care until you’re the one in need of a little help!

    Unfortunately during the time since New Years my ability to get around has declined rather quickly. There is an element of foot drop in my right leg which is especially troublesome with worsening stiffness and fatigue in my legs. The neurologist I saw did not feel it was another attack so I was given medication to treat the stiffness. The meds did not help my mobility so I’m feeling a little like this is the way it’s going to be until I get to Russia… I have another appointment with the neurologist coming up so fingers crossed there’s something else to try that will keep me going for longer!

    In happier news I have managed to get my treatment date moved forward to 23rd July 2018! There is much relief with this change as I had been feeling very anxious that the wait until November only gives the MS more time to cause problems. So 20 weeks feels like enough time to continue with the fundraising and organise everything for the journey.

    We have a fundraising event in the pipeline for June so we’ll keep you all up to date with date/time and venue soon. We’re planning on a fun quiz night which will hopefully include spot prizes, raffle(s), and hopefully some special items to auction. Watch this space for more details!

    Again, thanks for all your support in every way shape and form.

    Xx Jenny

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    • 12/06/2021 by Jacqueline

      I was diagnosed of Multiple Sclerosis a couple of years ago, I had severe fatigue, difficulty with mobility and sleeping. I was given medications which helped but only for a short while. So i decided to try alternative measures and began on MS HERBAL TREATMENT from Kykuyu Health Clinic, It made a tremendous difference for me (Go to www. kykuyuhealthclinic .com). I had improved walking balance, muscle strength and improved vision