My First Plasma Exchange In London……Fighting Stiff Person Syndrome x

My First Plasma Exchange In London......Fighting Stiff Person Syndrome x

This is a photo of me in the London Hospital in Queens Square, preparing for my first round of Plasma Exchange. My treatment was five consecutive days of three liter exchange. This is the central line i had inserted to facilitate my treatment, in a desperate attempt to halt my excruciating spasms.
Stiff Person Syndrome was literally crushing me from the inside out.
The Plasma Exchange did not run smoothly. The effect of my daily treatment was causing my blood pressure to drop dangerously low, my oxygen levels were almost impossible to keep stable. My heart suffering the consequences. I was vomiting. Having spasms throughout each grueling day. My temperature was dropping so low, i was constantly shivering, teeth chattering, my skin changed color, like the life was being drained out of me. I was wrapped in blanket upon blanket, my husband trying to hold me to give me his body heat. However i stayed as focused as i could, staring into my children’s eyes in a photo that Jason held for me to see.
The image of my tots kept me fighting through what felt like i was in hell. How glad i was, that i was able to complete this first round of treatment, as three days after completion, i was able to straighten my legs by my own free will….and my spasms significantly reduced šŸ™‚

I was still bed bound, having a shorter time frame to each spasm. This was a major breakthrough with my Stiff Person Syndrome šŸ™‚ I was now able to tolerate light, sound, touch , movement. I could breath, talk above a whisper. This was not short of a miracle for me.
I thought this was the beginning of beating the ghost that haunted me…..Stiff Person Syndrome x

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3 thoughts on “My First Plasma Exchange In London……Fighting Stiff Person Syndrome x

  1. Hi Nerri,

    My name is Abbie Wightwick. , I am a journalist at Media Wales (which publishes The Western Mail, South Wales Echo, http://www.walesonline and Wales on Sunday).

    A link to your amazing blog has just been sent to me – it is so harrowing to read, I cannot imagine what is is like for you to be living this.
    I’m not sure how you feel about this but do you have the energy to speak to me for an interview? We could run it with a link to your blog on our website and you might find the publicity gets treatment/help speeded up or more suggestions coming in?
    I know this might be a big ask when you’re dealing with so much, but please think about it and if you want to just ring/email to discuss that’s fine.
    You can see the type of things I write if you put my name into google – I write a column and for years have done news and ‘real life’ interviews.
    Please get in touch, if you want to.
    As a mother of three myself I can relate to your terror of leaving them and so hope you can find the right treatment to prevent that happening.
    ,
    Very best wishes, Abbie
    02920 243 765 (Wed to Fri 8am to 4pm)
    07963 931688
    .

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    • hi Abbie
      i deeply appreciate you being so kind to contact me. the purpose of my blog is to raise awareness for myself and others about this one in a million illness. however as you can see sweetheart, i am in desperate need of treatment. i need to set up a fundraising account as soon as possible, which i will attach to my blog.
      my husband and are are trying to gain as much media coverage as possible, something i would never have considered in my passed as i am a very private person. however this is now my last resort…..going public, opening my soul to the world in the hope that it will help me accomplish the stem cell transplant i so desperately need
      my husband has already began by approaching our local news paper , who visited us yesterday and wants to run my story. i have also been contacted by caters magazine, who said that my story will appear in all national papers. i was emailed a contract from them last night that i haven’t read with my husband yet or signed. apparently they want exclusivity ….. is that a good thing Abbie? i am just desperate for help and i have no idea how to get the best media coverage to hopefully enhance support for much needed treatment. if you feel there is a more productive way of getting my story heard, please i am open to any advice or suggestions. as you have noticed , i am a mummy of three precious children, just like you. Abbie please, i don’t want to leave them without their mummy
      much love
      nerri xxx

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  2. reading these two letters makes me cry , I hope everyone gets to see all the publicity their are so many charities that get help this is one that should not be over looked I hope the story goes not just to the u k but to spread wider out there will be some other one person in a million with this dreadful illness , it must be hell to live it only the person suffering this awful illness knows what the pain is like we cannot imagine , Nerrick take comfort in our creator who is the God of all comforters /my prayers are with you every day and night . God is the hearer of prayers . I am sure he will send you the comfort you are needing . stay positive stay strong you can do it . xxx

    Liked by 1 person

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