Port & Perm-Cath

Recently I had to be admitted again to have a port & perm-cath inserted.  This was my third anaesthetic for this year, & that thought alone terrified me as having MG is a huge risk when being put under.  We had to be at the hospital before 6am & I was second on the list to go through - so at least I didn't have to wait too long with a grumbling tummy!

I have never had a port inserted, although I know about them & have often had discussions with my doctors about having one inserted - especially recently when my veins have just been giving up on me!  The surgeon I went to has inserted all my other perm-caths & knows me well, so I knew that I could trust him completely.  He saw me before I went under, squeezed my hand & told me that everything was going to be ok.  I really appreciated it, as I was stressing whilst I was lying waiting to be wheeled into theatre (in my super sexy one-size-fits-all paper panties & hospital gown - please can someone design something that doesn't look so dreadful?).

The pics above show how the port is inserted, & what it looks like under the skin.  It takes away the horror of them having to dig for a vein as they simply insert the needle into the spongy centre part of the port.  Currently you can see the shape of the port in my chest, but as time goes on this should settle more & you won't even know that it is there!

I had my perm-cath inserted at the same time as I am still having to go in for plasmapheresis & they cannot continually insert temporary lines as my veins are filled with scar tissue & the pain is unreal when they try to break through this.  I didn't want to have to go under again, & also I don't think my medical aid would like me having to book in again!

About 3 hours after my operation I was finally wide awake enough to message friends & family to let them know that I was fine - and I took the beautiful photo above.  Can you tell I am still a bit high on the medication & very unimpressed with the pain?  Gee whiz - the pain.  It was unreal.  I felt like I had been hit by a train in my chest & was completely miserable.  I don't usually ask for pain killers, but this time I had to.  I just couldn't cope with it.  For such a small operation it sure did have a huge impact on my body!

A couple of hours after this my doctor came & said they were happy with how I had recovered so I could go home - that same day!!!  I have NEVER had such a quick hospital stay & I was so excited to go home to my own bed to recover.  I kept a cushion on my chest at all times to protect everything from my dogs as they love to give kisses & cuddles, & we couldn't risk anything being pulled out/scratched.

Since then things have got better day by day.   I am still quite tired & sore, but I am able to move around a lot more & at least I could take off some of my plasters - I react so badly to these & sometimes think that the itching may have been worse than the actual pain.

Three Days Post-Op

Tomorrow I am getting my stitches taken out & the perm-cath dressing changed with one of my favourite nurses - Jenny.  I haven't seen her since my last line at the beginning of the year & she is such a vital part of the team that takes care of me.  I can't wait!

We will be starting chemo (through my port - eeek!) in about 3 weeks time.  I am almost finished with my antibiotics for the PCP pneumonia, & once that is done I will have more blood tests & then the new treatment begins.  I am excited, but also very nervous.  Chemo is no fun, but I am hopeful this will make a difference in the quality of my life - and at least I have the pipes in for any plasma that I may need.

Onwards & upwards!

Destination Unknown

Last week proved to be very hectic with a trip to Cape Town to see the Prof about what treatment plan we can try out now. I had a round of plasmapheresis again at the beginning of April, this time using FFP - i.e. Fresh Frozen Plasma {Fresh frozen plasma is a blood product made from the liquid portion of whole blood. It is used to treat conditions in which there are low blood clotting factors or low levels of other blood proteins}. I was hoping that perhaps the effects of using fresh plasma rather than the artificial one we have used in the past would make a difference. They also really battled to get a CVP line in due to all the scar tissue that has built up - after 4 attempts in my neck & screaming out in pain, the doctor finally decided to try to insert it into my groin where it slid in easily. Due to all the trauma from the multiple attempts to insert it into my neck, I developed a massive haematoma & could barely move without flinching. I was a misery for at least a week after this, but at least I felt good with regard to my Myasthenia Gravis!

My miserable face - I was so so so sore

I was really praying that this round would last a bit longer & I was LOVING being able to be "normal" for a while - even attending a sewing class & our MG meet-up. I could chat to friends; laugh; pig out on sushi on a date with husband & just generally enjoy my life. It reminded me that I have so much to be grateful for & I really shouldn't take anything for granted.

The Gauteng MG Warriors - some of us

So now, back to Cape Town...

She is so disappointed that I have not responded to the last treatment i tried (Rituximab) & due to the damage in my lungs we can’t try any new treatment until I am completely off my antibiotics. I have to be on these for 6 months & they make me feel ROTTEN! But we can’t take any chances of getting any type of lung infection again as my body would just not cope with it. The antibiotics make me nauseous & lose my appetite (it has been a great diet plan though I guess...) & I have a rotten taste in my mouth. My kidneys have been damaged from the continued use of these too, so I am trying to drink as much water as I can to try help flush them out. End of July I will finally be able to stop taking these & hopefully not have to live on peppermints any more!

Prof has admitted I am probably the worst Myasthenic she has seen as I am just not responding to treatment & my body literally hates me. The funny thing is, she isn't the first doctor to say that to me now! It's like all the little soldiers in my body have the overwhelming urge to go to war, & they don't care with whom.

So for now I am staying on my current medication, just a higher dose to see if that will kick in & help. Once I have completed my antibiotics, we are going to start chemo once again to try kill off my immune system & get it to do what it is meant to! This thought scares me as I have been through this before & the effects on my body are TOUGH. I remember making a bed in the bathroom as there were days I was too weak to make it there in time. But, if I have to go through a little bit of hell to reap the benefits & experience normality then I will take it! I won't have to rely on people for so much; won't have to miss out on social functions & can actually live a full life.

In the mean time I am going to have a port inserted (my veins are terrible & run away any time a needle comes near me!) for my treatments & will have plasmapheresis to keep me from complete crisis - although Prof said I am living in a permanent state of the cusp of crisis. I am booked in at the end of this month to go in to have the port placed & hopefully things will start improving very soon. We just need a set plan, & one that my body responds to.

Date night with husband 

I am not going to allow this disease to get the better of me! It is my 30th coming up soon & I am determined to celebrate this to the best of my ability. Life is for living, there is so much to celebrate & I am blessed in so many aspects.


Onwards & upwards!

Acceptance

My last blog was a very long time ago...  There has been so much happening & we have been trying to process it all before we let everyone in on it.  My emotions have been all over the place, & I think (thanks to a friend for pointing this out!) that I hadn't fully accepted what has happened.

It has been an extremely busy year so let me quickly try summarize what has been going on - otherwise you could be here all day reading my story & I think that will drive you mad!

I am still going into hospital to plasmapheresis - we have realised that this is what is keeping me going & unfortunately my health has declined to the point where I spend only 2 weeks at home before needing to be admitted for 4-5 days of plex.  The effects of the plasmapheresis only last for 4 days before I start declining again, & then I battle for as long as possible before needing to be admitted.  I am now making use of a walking stick to help me keep my balance & take some of the unnecessary stress off my body when I go out in public.  I am exhausted constantly - from fighting my body, from putting on a happy face & from the emotional turmoil that I have been through (more on that later).  I have been on 4 different immune suppressant drugs over the past year & a bit to try control my MG, but unfortunately these are not working.  Methotrexate, CellCept, Azathioprine & Cyclosporin are just not making a difference.  I am on 4 different other medicines on top of these as well - each with their own array of side effects.
Before I used to come in for plasma once a year (as a maintenance treatment - think of it as changing my batteries to keep me running for another year), & now I am coming in after a fortnight (my cup has a hole in it, causing my health to leak out - the plasma is replenishing the liquid in the cup, but we are in a constant battle to try fill it up & cannot find the "leak" or how to clog it up).

Feeling grim & unable to smile.

 My darling precious granny passed away earlier this year,  It was the absolute worst thing I experienced.  Gogo was so much more than just my granny, & being away from my family at this time was extremely difficult.  She passed away in her sleep, but was battling for some time with her body slowing down & her memory falling away.  I miss her every single day, & often find myself picking up my phone to give her a ring & let her know what has been happening.  She truly "got" me & could always make me smile when I was having a down day.  I am so lucky to have had her as such a big part of my life for so long, but it doesn't make things any easier. The stress of losing her definitely affected my health, & I was admitted for emergency treatment just after her passing to try lift me out again.

With Gogo at our wedding

Together with the cousins at Gogo's memorial - bright colours for our precious granny.

Husband & I have been trying to still live our lives & suck the marrow out of it whenever possible.  This isn't always easy - especially with my health as it is.  We cannot make plans for more than a week away, as we don't know what will happen with my health or when I will relapse again.  We cannot travel too far from the hospital & need to be constantly aware of my abilities.  One braai out with friends means almost 16 hours of sleep to try recover - and paying for it for the next week.  We have amazing friends that truly understand this & take such good care of us - having husband over when I am in hospital & constantly checking up on me to make sure I am behaving!!

I was blessed to go to Barcelona, Spain for the EURORDIS Summer School on Patient Advocacy & Clinical Trials with my job for Rare Diseases SA.  What an amazing opportunity!  I met the most amazing people & came back with so much knowledge & excitement for the future.  We also managed to squeeze in some sightseeing as this was my first trip to Europe, & I really felt truly blessed.  The doctors did 4 rounds of plasma before I left so I was strong for my trip & could properly enjoy it without missing out on too much.  I did go for naps every lunchtime & pressed snooze on my alarm more often than I should have, but otherwise it was even more I could dream of.  I did choke on my food occasionally; missed out on meals as I couldn't swallow; & kept quiet more than I wanted to as talking was too much of an effort - but my heart was happy & I was determined to not let my health make me miss out on this experience of a lifetime.

With Helen from Genetic Alliance

Being a proper tourist

After our time in Spain, I stopped off to see my sister in England.  Katie is my best friend & biggest supporter - being away from her is so difficult & we talk almost every day on FaceTime.  Because I was so close to her, I couldn't miss out on an opportunity to spend time with her & get to see their everyday life.  I was spoilt rotten & it was such special bonding time.  We got to chat, cuddle, catch up properly & see so much!  I noticed myself declining during this time, & was napping for about 3 hours every day.  It was horrid missing out on time for her because my body was letting me down.

My life is enriched by this beautiful sister

Proper High Tea

And now, on to the real point of this blog...

This is so difficult for me to write, & this is why I have avoided writing anything for so long.

We have been through the stages of Grief:

1.  Denial  (This can't be real!)

2. Anger  (Why me?  This just isn't fair)

3. Bargaining  (If I get better, I won't take my life for granted; & all the "what-ifs")

4. Depression  (I didn't want to leave the house, & cried for anything)

5. Acceptance  (I am still trying to get here - but its getting better)

We have spoken to many doctors & they have met with each other to discuss my case.  This is the cold, hard truth.  We have not really sat & thought about what this means for us, until this most recent relapse.

The doctors have now said that they do not have a plan for me, & there is nothing else they can do for me.  

We were really praying that the newest medication would make a difference in my life, but I am slipping further back every time.  My relapses are coming quicker & closer together, with it now affecting my breathing.  My MG has officially progressed to the brittle, refractory form & what used to work for me no longer does.  I am in a constant fight against myself & it is absolutely exhausting.

Trying to stay positive!

We are not giving up hope, nor are we just being negative,  We are being realistic, & trying to find ways to make my lives easier to try take some of the stress off my body - hence the walking stick, having a snooze every day & listening to when my body says - woah, ok that's enough!

For so long I have tried to push it to the back of my mind & not allowed myself to "think myself sick".  But we have been told we need to face up to reality.  The longer I have my Hickman Line in, the fewer options I have.  They are concerned that soon I could become immune to this treatment, & it will not make such a big difference to my health.  Plex/plasmapheresis is what is keeping me alive.

Before coming in for this treatment, these were my symptoms:

I was unable to get off the floor; battling to swallow right from breakfast; slurring my words; unable to pick anything up from the cupboards; unable to reach for anything above my head; unable to hold my head up when bending forward; drooling constantly; unable to give husband/our animals a little kiss; I battled to breathe when lying flat on my back; I had to rest after having a shower & just felt completely drained.  I just cried constantly.

Just starting my third Plasmapheresis in this round of treatment

I am going to see a specialist in Cape Town early next month to see if she has any advice or ideas of what we could do.  My doctors here have been communicating with her, but we have decided that it would be best to actually meet with her in person so she can test my muscle strength herself.

We do not know if we will get any more answers, or if she will have a plan.  This could be the time to try make my life as comfortable as possible; or it could be something completely off the grid that she thinks of that could work.

We are not giving up hope of a miracle, but we are also acutely aware that there may not be a way forward for my Myasthenia Gravis treatment.

My heart is heavy, & writing this blog is extremely difficult.  I don't like to face up to this reality, & never, ever want to be seen as being negative.  Being positive & seeing the good in life has got me through so much.

Please stand with us in prayer.  

We need a miracle.

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

An unexpected addition

When I finally moved to Jo'burg to be with husband, (the short story is that I was not coping health-wise anymore, & could not even make it through a full day of work without feeling like I was going to pass out driving home & so came to our new home earlier than expected.  I was worse than I have been in years & was terrified of hitting full-blown crisis & thus being separated from my husband for even longer.) I had an appointment with my new neurologist in order to discuss our plan going forward.

She examined me after discussing all my previous medical history & treatments; & said weakness of my facial muscles is pronounced, with my talking very nasal & my uvula not moving at all.  I could not get off the floor without assistance; could not hold my head up against any resistance; my eyes do not close; i couldn't hold up my arms for any amount of time & I was absolutely exhausted.  She was concerned at just how bad I was & sent me for a battery of tests to see if we can get any further answers.

Straight away I went to have blood tests to check my antibody levels; liver function & all sorts of other things - they drew 10 vials of blood in total (yes, I almost passed out & had to sit quietly once they had finished - I am still a huge wimp when it comes to needles).
I then had to go for a CT scan of my chest in order for them to check if my thymoma had come back (I had my thymus gland removed 2 months after I was diagnosed, but if they had left anything behind, this can grow back & cause further antibodies to be produced).  With a CT scan you have to lie very still - you have to hold your breath whilst they are taking the "pictures" so that nothing moves.  They run a drip of dye in that helps them to see everything more clearly - this drip makes you feel warm all over; gives you a metallic taste & makes you feel like you have wet your pants.  Not something they always warn you about so it can give you a bit of a fright!

In my sexy hospital gown waiting for my CT scan

The doctor & I discussed our plan going forward to try get me back to some form of normality & hopefully give me some enjoyment of life.  She has decided that I need to have a permcath inserted as I will need to go for multiple sessions of plasmapheresis & I cannot always have a temporary line inserted - this has become very painful & I have extreme scar tissue build up on the inside that makes it more dangerous & difficult for the doctors.  I will not be able to work for probably the next year due to all my treatment, & the fact that I will be in hospital for at least a week at a time for my plasma sessions.  This places huge financial strain on my husband who now has to carry both of us, & this stresses me out a bit.  However, my CT scan came back clear which is fantastic news!

I was admitted last week Thursday & taken to theatre - right before I went under they were still discussing if they were sure they wanted to insert the perm cath as my MG was really misbehaving, & I am already a risk going under anaesthetic.  We didn't want to take any unnecessary chances!  However, the necessity of getting my strength up outweighed the risks & after a quick prayer I was told to count backwards from 10; & the next thing I knew I was in recovery coughing out the pipe that was down my throat.

The ladies taking care of me in recovery were lovely & took such good care of me.  They stick this amazing pipe under the blanket that blows hot air on you so you feel toasty warm!  They came to take x-rays of my pipe to make sure everything was in the right place, & then I was taken to High Care (where husband was patiently waiting!) where I would spend the next couple of days for my plasmapheresis sessions.

An illustration showing what was done to me & how the pipes work

I had no idea what I looked like, or how much was actually sticking out of me.  I had acted like an ostrich with my head in the sand beforehand & didn't research anything - in fact I thought I was having a little port fitted like what chemotherapy patients have done.  So I got quite a shock when I had a look down & saw all these plasters & 2 pipes coming out of my boob area!

During my very first plasma session after having the permcath inserted

I was very sore that first day & didn't want to move too much - luckily the anaesthetic kept me quite sleepy & the pain killers pretty much knocked me out after that had worn off!  I didn't try be a hero & cope without pain killers as I have learnt my lesson from this before.

The next day I could already smile!  One treatment down & I felt like a new woman!

The top plaster is where they went in - they feed the tubes from here into my heart, & then use a guide wire to feed the tubing under my skin & out a little lower down to attach the outer connections to.

Showing all placement - excuse the heart monitors but these are a necessary fashion accessory in High Care!  You can see some of the bruising already coming out.

After 2 sessions of plex (plasma exchange) I could already feel a huge difference.  For the first time this year pretty much I was able to swallow my supper without choking & wasn't having to toss my head with every mouthful.  The doctors were super chuffed with my improvement & decided I would have 6 sessions this time around & then I would come back in 3 weeks for another 6 sessions.  Having them closer together will help to remove all traces of my antibodies before my body stores up too many again & hopefully I won't head towards crisis again!

I was so lucky to meet a fellow Myasthenic who I have been chatting with online & is in a support group.  She has always been such a sweetheart, so positive & always encouraging.  In fact she was the one who recommended my new neurologist & made me feel safe about starting with someone new.  Dyanne  was admitted into the bed next door to me for her rounds of plasma & it was such a treat finally being able to meet face to face.  She had had a really long journey to receiving her diagnosis & had initially been misdiagnosed with all sorts of other diseases before her drooping eye gave the doctor her "aha" moment that this is MG.  It was so lovely meeting another snowflake & having someone I could talk to, knowing that I was completely understood & wasn't being judged.  We laughed together, bonded over our new book (both of us had bought "Harry Potter & The Cursed Child" to hospital with us to take our mind off things) & just chatted about life in general.  I am truly blessed to have made a new friend, & know that we would probably not have met were it not for our MG!

Dyanne & me showing off our ports!

The doctors & nurses couldn't believe the difference in my talking, swallowing & general strength after a few sessions of plasmapheresis.  I had some special friends come to visit me in hospital & they commented on how they couldn't believe it was the same person!  It always makes me feel so good hearing that other people are seeing a difference in me & when they can get excited with me.
The only thing that frustrates me is when certain people make out I am so much worse than I actually am in order to make use of the sympathy card for themselves; or when they tell my family outrageous stories that aren't true,but make it sound even more exciting - not cool guys.  I don't need any more drama/spice added to my health issues thank you very much :)

I was discharged & am now at home relaxing, taking things easy, but also loving the fact that I can crochet again & have a bit more energy to cope with life in general.  My bruising has come out a bit more since being at home & is now a beautiful dark purple (thanks cortisone for making this look even more dramatic!)

The bruise starting to come out a bit more

The pipe you can see under my skin.

These pipes can stay in for the next 2 years if I take care of them properly.  I am not allowed to get anything wet & have to go for a dressing change once a week where they will properly clean everything, flush out my pipes & replace the waterproof dressing (oh, did I mention that I have developed an allergy to this plaster, but just have to suck it up as there is no alternative!).  Showering is rather tricky & I am trying to figure out how I can wash my hair without getting any water down my chest, but I am sure that over time this will be something I can do without any stress.  I also can't wear a bra as my pipes are just in the wrong place & I can't risk moving them by having a bra rubbing against them throughout the day (#freethenipple was not something I ever thought I would be supporting!).  These are just a small price to pay to feel like I do & to have the quality of life I do right now compared to only a week ago.

Appreciate your health & never take for granted the miracle that your body is in its constant functioning.  It is only when things go wrong that you begin to realise how amazing the human body truly is!

The ugly face of MG

It has been a rough couple of months & we have been trying so hard to keep our heads up & put on a smile, but today I am broken.  The straw broke the camel’s back & the tears continue to flow with no way to stop them.

In April I was re-admitted into hospital for my usual plasmapheresis.  I was really not well, & my doctor admitted she hadn’t seen me this bad since my initial diagnosis.  I was unable to talk, swallow & even get out of bed on my own.  The anaesthetist said he would prefer to put me under when inserting my pipes due to the pain, but because I was so bad we could not take a chance with that.  I couldn’t even swallow my spit & really felt miserable.

I was truly blessed to have special visitors every single day of my hospital stay, & constant messages from some wonderful people.  Let me tell you, it doesn’t matter how often you get admitted to hospital, it is never fun.  It is not something I look forward to or enjoy, & receiving that little whatsapp or even a facebook message can change my day completely.  So thank you to everyone that took that time out of their day to contact me & make me smile.

I was discharged after 6 days in hospital & went straight home.  I was feeling amazing & again was blown away by the difference that the plex made to me.  I loved feeling normal & able to do things that a girl my age should be able to do without the huge effort.

Alas, 3 days after being discharged I was already starting to slur my words & battling to swallow.  Within a week & a half I was back to where I was before I was admitted.  I battle to bath myself, dress myself (doing up buttons is really tricky when your hands don’t want to co-operate) & at times even cut my food.  I am exhausted every single moment of the day.

I have always been one to jump out of bed excited for the day ahead.  I love every day & try so hard to be positive & find the good wherever I can.  It is not always easy, but it is something I have set for myself.

Currently I can barely drag myself out of bed.

I am on new medication that could take a while to kick in, so we are praying for results with that.  However after almost 3 months I am still not feeling much different to how I was before I began them.  I will never lose hope but I currently I am terrified.

My Myasthenia Gravis has now developed into a resistant strain – meaning medication that worked for me before is no longer doing what it should.  Hence why the plamsapheresis effects didn’t last as they should have.

My husband has recently relocated for work & I have been lucky enough to be able to stay with my aunt & uncle for the past month.  They are very understanding & do all they can do make my life easier – food goes into the magi-mix so I can eat my “baby food”; I get sent to bed just after 8pm & I am allowed to rest whenever I want to without being made to feel like I am lazy.  It has been so good for our relationship, but it has also reminded me how little I can currently do on my own. 

My talking is terrible from when I wake up, & although there is so much I want to say, I cannot physically get the words out.  It is an effort to talk & many times people cannot understand what I am trying to say.  Once I get flustered or stressed it makes it 100 times worse!

The same with my swallowing & chewing…  I choke on my food every day.  Sometimes I have to cough just to try get the food down.  When I sense that people are watching me, I often put my food to one side or feed it to my husband (thanks babe!) rather than have to answer any questions about if I always eat like that/if I am battling/would I like something else.

I am physically, emotionally & mentally exhausted.  I am not coping, & I cannot put on my strong face today.  I never let people truly see just how bad things are, but today I decided to be honest & let you in to my life.

Once I move to JHB I am going to have to change neurologists (GULP!).  My current doctor is like my other mother & she has been treating me for over 12 years now.  She knows what has worked for me & what has done nothing.  She knows I don’t make a fuss of what I am coping with until I can’t physically carry on.  Going to someone new terrifies me, although I am hopeful that the new doctor will have a brainwave with what may help me & maybe there will be a difference in my life.

The other thing I am terrified about is meeting new people.  Do I tell them about my MG when I meet them?  Or do I just act normal until they start giving me funny looks when I can’t talk?  Do I get husband to explain it?  Should I carry little cards with a basic breakdown of what MG is & hand these out whenever people need to know?  The people I have met so far were so kind & welcoming towards us, but I am scared of how things will change or if I will be seen as “the sick one”.

I am really battling with the lack of understanding being shown toward me currently.  I have been told I am rude for not talking, or that I overreact with what is going on.  I have been told I just need to eat, or have a smoothie if I can’t swallow food (NOTE: if my muscles aren’t working, that means I can’t swallow anything.  Sometimes I even have to mop up my spit coz it won’t go down).  I have been told I need to be more positive.  I have been told so much; & every single word is like a sword through my heart.

I am really trying to create understanding & am grateful for each of you who have shown me compassion, love & understanding during this very trying time.  Thank you to my friends who have cried with me when I am battling, & who have never given up praying for me.  Thank you for understanding when I cannot talk, & for sitting in silence with me or for being the one to chatter away.  Thank you for including me & for loving me, regardless of how “thspecial” I am at that particular moment.

My heart is breaking at the moment. 

I do not enjoy being sick for one single moment.

I hate having to explain myself & feeling judgement from people around me.

Please just love me through this difficult period, & understand when I can’t always join in.

Sometimes all I can do is hug you to thank you for all you have done for me, as I cannot get the words out.  Please know that my hugs are filled with every single word I wish I could say & I am sending constant love to everyone in my life.

Please pray for a miracle. 

Pray for a cure. 

Pray for hope.

Pray that I can feel “normal” again.

xxx

Communicating with Aliens

 I have just returned home after an 8 day hospital visit, & boy oh boy am I happy to be back!  In my own bed, with my husband & furry creatures - life could no get much better than this.

I had a slight set back about 2 weeks ago & I just felt like I was slowly being pulled down into my dark hole again.  Rather than risk a huge setback, my doctor & I decided to tackle it early on & go through 5 sessions of plasmapheresis.  All the arrangements were made, more time had to be taken off work & we set off for Durban bright & early on Monday to be admitted.

I went straight into ICU where I was welcomed back with open arms!  The nurses know me by name now & have become like my second family.  We even laughed because I went into the same bed I was in last time - they joked they were going to get a plaque installed that read "Megan Hunter's Bed".  My doctor came to visit me, ordered blood to be taken & then I had to wait for the anesthetist to come to put my pipes in.  The nurses battled to find a vein to put a drip in, so decided to wait for the doctor to do it when he came as well.  I generally have very low blood pressure & my veins go into hiding the moment a needle is mentioned!

The anesthetist arrived & told me exactly what he would be doing...
Drip in, pain medication & something to make me "float" would be given through the drip.  Then he would give me a few local anesthetic injections in the area & the the feeder wire would be fed through my jugular vein into my heart, before the CVP tubing would follow & then the wire pulled out, & the tube stitched in.

Me, miserable after having the CVP line inserted.

It is painful.  It is not pleasant.  It is most certainly not the worst thing I have been through, but it is not a walk in the park!  Plus these were put into my neck, so looked like an antennae that I was using to communicate with extraterrestrial life!

Desmond (the chap that does my plasmapheresis) arrived to start my first treatment & gave me some terrible news...  The wrong pipes have been put in!  Somehow there was miscommunication or a misunderstanding & the anesthetist had put in a CVP line, & this was meant to be a dialysis catheter.  Very different.  The CVP line is a lot smaller with 3 heads coming off it, whilst the dialysis catheter is thick with only 2 pipes showing.  I was horrified!

2 hours later the anesthetist arrived back to insert the correct lines.  He apologised profusely, held my hand & talked me through what was going to happen.  A feeder wire was to be fed back through the CVP line, this was going to be removed, & then the thicker dialysis catheter would be pushed down.  He explained this would be more painful as it is a much thicker tube, & my body is already injured from the first time around.  He gave me more pain medicine, as well as something to help me relax; & then the correct line was inserted.   

Me, tearful & fed up.

We also discovered I am allergic to the OpSite plaster they had put over the previous pipe, as I had gone red & itchy with tiny pimple-like bumps forming just in that time.  

The nurses held my hand through both procedures & cried along with me.  They brought me cool drinks, spoke kindly to me & phoned my doctor as soon as everything was correct.  The X-ray department came down to check the pipe was in the right place & then they left me to sleep.  No plasma for me on this first day as they decided my body had been through enough & they just wanted me to relax & get over what had happened.

My sweet husband & mum came to visit me that day to cheer me up & keep me positive.  They were there for me almost every day; taking it in turns to come visit.  Unfortunately the hospital I go to is about an hour from home, & half an hour from mum so not close enough for anyone to just pop in anymore.  Also I think friends & family no longer think me going to hospital is such a big deal.  I have done it so often & am in every year at least once that I think it has become boring for them!  I remember having masses of visitors when I first used to get admitted, as well as cards, toys & flowers galore.  Now that I am a regular, this has tapered down a bit & some visiting hours it was just the nurses there keeping me company.  It is understandable though & it doesn't upset me - it is simply the norm for some people that I am back in hospital.  Almost like I am going to stay with a relative.  I do appreciate those friends that could make it through to visit, as well as all the lovely messages & encouragement I received throughout this time.

They tried to give me pain tablets to take, but I battled to swallow them.  This was especially difficult as I usually toss my head to get food etc down when I am battling, but now I couldn't move my neck properly given the position of the pipes.  So it was kiddies syrup for me!

My first plasma treatment started early on Tuesday morning...

It is such a weird sensation, & I always get freezing whilst it is happening - hence why I am all bundled up under about 5 blankets!  But these new machines are wonderful.  It only takes about 1 & a half hours to complete it; compared to the old machine which used to take 4-5 hours.  It isn't painful, but you can feel the vibrations of the machine - my lips feel like they are buzzing...

Midway through treatment, & after all 5.

Last photo as an alien!

I love how quickly I can see results with plasmapheresis.  In the photos above, you can see how initially my smile was lopsided, & my one eye was more open than the other.  The other 2 photos are after all 5 treatments & show both my eyes open properly & my normal smile!  It is always so exciting to see these results; to hear myself talking clearly; to be able to brush my hair without having to support my one hand with the other; to lift my head off the pillow without having to physically lift it off using my hands.  It is the small things that bring me so much joy, & the nurses & doctors celebrated along with me in every small victory!

The biggest concern was my blood pressure through this.  I usually suffer with a low blood pressure, but it dropped right down to 80/40 (healthy BP is 120/80) & I often felt faint & dizzy; & the nurses had to help me to the bathroom.  My doctor came to check on me at least once a day, & even came in on her weekend off to bring me a flower & show off her new haircut.  She is my other mum & I am so grateful for all she does for me!

When you are in ICU it is not easy to escape.  You are constantly connected to heart monitors, a blood pressure cuff & a thing that goes around your finger that measures oxygen saturation.  I called this my ET finger as it glows & makes for good entertainment!

After all my treatments were completed, my pipe was removed & I was kept in for another day for observation.  They always prefer to be safe with us snowflakes & ensure we are the best we can be.  No chances can be taken!

Then I was transferred to my old home, Medical Ward 2.  I have been coming to this ward since my diagnosis.  The nurses know me, my family & my husband.  The have seen me through my good & bad times.  They have been there to help me bath when I am too weak, they have held back my hair when the chemo made me sick.  They have fed me when I couldn't do it myself, & given me more hugs than I can even count!  It was like seeing all my friends again.  They made a plan to get me a private room (due to my lack of immune system I can pick up any illness very easily) & quickly settled me into a room fit for a queen!

I changed out of my hospital gown as soon as I could & put on my normal clothes!  What a good feeling...  I could now also wash my hair, which after a week of doing nothing was looking pretty grim!  I had another reaction to the plaster that had been put on, so the nurses helped me change this to a smaller one & I was set to relax, sleep & recover.

Itchy itchy!  The reaction to the plaster

The lady who brings the meals around remembered me, & knows I like tea with no sugar throughout the day then a hot chocolate at night.  She knows I don't have dessert, but do like yoghurt with my breakfast.  She was so sweet & it was so lovely being able to catch up with her & learn how her family has grown since the last time I have seen her.

So although this was a horrible experience with the pain, low blood pressure & being in hospital longer than expected; it was lovely being able to see all my friends again & make some new ones.  I hope I don't have to go back any time soon, but if I do I know I am in the best hands ever & will be looked after.

It was dreadful when the 12 year old boy next to me who was waiting for a heart transplant died in ICU, & it reminded me that life is short.  We never know when it is out last day on earth.  We need to live every day as if it is our last.  Be kind to others.  Smile as often as you can.  Make friends.  Never give up hope.  And pray every day.

Little bit of a squiff eye - I hadn't had my morning nap yet!  Otherwise all muscles working perfectly.

I am home now, relaxing with my animals & my sweet husband is waiting on me hand & foot.  I feel strong.  I can talk well & even managed to do some loads of laundry this morning.  I am going to cut my hair this afternoon (long hair with MG is not easy - there are times I cannot even brush my hair, let alone tie it up) & other than that I plan to take it very easy.  Tomorrow I go back to work & hopefully can catch up on some of it that I have missed.

Thank you to everyone for your love, support & kindness through this awful time.  May the next time I have to go into hospital be when I am giving birth to our miracle baby!