Friday, 11 November 2016

Under the effects

Yesterday I was re-admitted into hospital to have a new permcath fitted (it was taken out last month after it was constantly blocking during treatment & giving me all sorts of hassles - let me tell you, being free of it for a whole month was better than I could have ever expected!) & a fistula for future treatments.

We were at hospital bright & early, & did my admission so they could start prepping me for surgery.  The idea of going under anaesthetic is never something I look forward to.  With Myasthenia Gravis your muscles are already so weak, that going under & getting certain muscles relaxants causes huge stress to the body & it can be fatal. So even though it is just a small operation, I always start to panic when I know what is coming.  I signed all the necessary forms then waited - and waited.  I was starting to get hangry (angry from the hunger, as the last meal I ate was 7pm the evening before!) & the longer I lay there the more my thoughts started going crazy.

Eventually they wheeled me into theatre at about 1pm & started scanning my veins to see where they could insert the fistula.  It was not good news.  My veins are so tiny & run away the moment I come into hospital so the vascular surgeon said it is impossible to do a fistula as my veins wouldn't hold.  The vascular surgeon scanned both arms & even in my neck but none wanted to participate.  The anaethetist even said I have baby veins & took about 15 minutes just to find a vein that she could put the drip up into.  But, she got one in eventually!

I woke up after the op feeling good & my permcath in with no complications.

They have inserted it more along the side of my chest, rather than down the centre. So movement is a lot easier & the only real pain I am battling with is in my neck.  I think the surgeons are a lot more rough on us when we are under anaesthetic than we realise.  Plus this is the original incision site & where they insert the pipes so its expected to be sore!

My doctor who oversees my plasmapheresis came to see me & she said she hasn't seen me this good in ages, so it actually looks like everything is working now!  She was ok with the fact that they couldn't do the fistula as we are now hoping I won't need this on such a long-term basis.  Wouldn't that be great??  So this permcath will stay in for another 3-4 treatments & we will reassess to see if we think I should get a fistula fitted, or just come in every couple of months for a 'top-up'.

For now though, I would like you to meet my new friend...

Every day I now have to squeeze this stress ball - not only to help get rid of any stress I may be fighting, but also to try strengthen my veins & build them up in case I need a fistula to be fitted.  So it really kills two birds with one stone!  Hopefully this will help make it easier to take blood as well, as this is never a pleasant experience.  I'm telling you, my veins know when it is hospital time & go running to their secret fort, only to return once I am home safely...

Be safe, be kind, be strong xxx


  1. Just heard your story on 3 Talk with Anele. You such a brave person and I wish you all the best. Keep fighting and please do enjoy every moment you spend with your family. I'll start reading your blog from now on. Cheers!

  2. Hi, I saw your interview with Anele yesterday. I wanted to jump and hug you because I know. I am living with MG diagnosed 5 years ago and I am the few of the lucky ones not to have it bad. I never been hospitalised, only on medication Azathioprine and Mestinon, I was fortunate to have the Dr who diagnosed me within a year since it is not a common illness.
    I wish you well, I am looking forward to communicate with someone whom knows the struggle of severe fatigue, nasal sounds muscle weakness, not being able to blow a balloon. God bless you
    Yolanda in Cape Town

  3. Hey Megan! This hug is coming to you all the way from India. As I kept reading your blog posts I kept smiling all the while, thinking...bizarre! Is this your blog or mine. Ha ha...
    I am glad you are doing well in the hospital. I have just got back after a fortnight in the ICU after a respiratory failure. I had become a tree. I was breathing in CO2 and breathing out O2! Been struggling with Myasthenia Gravis for a decade now. I have been in and out of remission a number of times and have undergone 3 major surgeries and thymoma that is n number of chemos and radiation sessions, IVG...I am right now on house arrest and am working from home.
    This blog is so similar to mine its not funny. Whenever you have the time do visit it....its http:/ It's about me and MG and life beyond MG.

    Girl hold on right there. We are all fellow travellers here.