Things to take your Chronically Ill friend in hospital

When you first get sick, the amount of cards, flowers & visits is almost such that you can't keep up with everything.  There isn't a day that someone doesn't come to visit you & you no longer have room to display all your gifts.

However, as time goes on & your hospital visits become the "norm", things start to die off.  When you say that you are being admitted again, people respond with "how long this time?"  Your visitors become the nurses looking after you, & those closest to you know exactly what you pack in your usual hospital bag.

Recently I have had quite a few of my fellow Rare Warriors spending some time in hospital & feeling rather overwhelmed with the whole situation.  I asked on my Facebook page what other friends would love to receive, & what ideas they had.  When I posted this, I had such a great response & realised that many friends had no idea what to bring with them or if I still wanted visitors.  With all this being said, lets jump straight into the ideas that were thrown around:

Your Time
Please don't forget about us!  Please come visit us in hospital, send us a message or give us a quick call.  Knowing that people still care about us & are supporting us through our journey means more than anything.

A Cuddly Toy/Pillow
Hospital life is tough.  There are moments that the tears flow freely or when you are completely overwhelmed at the entire situation.  Everyone's lives continue around you & sometimes all you need is a cuddle to help you through that time.  A Rare Bear is super special too as these are handmade & unique - just as rare as us!  It also helps to have a little bit of home with you whilst you are stuck in hospital.

My beautiful friend Ash - with Rarity from My Little Pony

A Soft, Beautiful Blanket

Hospital is cold, & I know that my treatment causes my body temperature to drop even further.  I have sometimes had up to 7 blankets over me just to try stop me shivering!  They are stark, white places & having something bright & cheerful can really change the whole mood of the place - my doctor always comments that she knows where to find me as she just has to look for the pink/unicorn things.

A Hot Water Bottle/Wheatie Bag

Muscle spasms & pain is common place with being bed bound; having permanent lines inserted; or even just the stress of your 'normality' being flipped upside down.  These help to ease this pain; relax your muscles; & provide some comfort.  I don't go anywhere without mine & have one at home, one at work, & one that I take with me to hospital.  They really help with headaches, period pains & tension.

Hand Sanitzer & Hand Cream

Often Rare Warriors have compromised immune systems & the hospital hand sanitizer is so strong & reminds me of being in hospital, so I love those dinky little gels/sprays that I can carry with me at all times to prevent the spread of germs & keep me feeling fresh.  These are often quite drying though, so hand cream goes hand-in-hand with this (excuse the pun!) & I am constantly applying lotion to try keep my skin feeling soft & nourished.

Lip Balm

I don't know what it is about being in hospital, but my lips are forever dry!  And chatting to fellow hospital-goers they said the same thing.  I am not sure if it is the constant air-conditioning; the change in atmosphere; or the different treatments, but my lips pay the price.  I take a massive jar of vaseline with me, & I know when I was on a ventilator this is all I wanted.

 

Colouring In Goodies

Being stuck in bed for up to 24 hours a day means you can get bored; your hands don't know what to do; & there is only so much TV that you can watch!  A friend makes the most stunning colouring in books that you can purchase online & download then print yourself.  I know that I will be taking mine in with me for my next admission.  You can buy these from Etsy or contact her directly.

Books/Magazines

I will be the first to admin that I am a complete & utter bookworm!  I have known to stay up until early hours of the morning to simply finish a book.  I love everything from Harry Potter to Jodi Picoult to murder mystery.  Recently I was sent some books by Christine Bernard & finished all of them in a week as I simply couldn't put them down.  She has just released a new one so give it a try :)  Plus she is a South African author & I always prefer to support local & celebrate this talent that we have.

Travel Sized Toiletries

With many pairs of pajamas, medication, stuff from home, work goodies, cellphone chargers & adapters; my bag literally split at the zip during my last admission.  I had to take all my toiletries in a different bag just so they didn't leak all over, or spill out of my bag.  Then when I popped into the local shopping centre I was reminded of the smaller toiletries such as body wash, body cream & so on.  It would make such a difference not just in space, but to also make us feel cleaner & prettier - & to take away the smell of hospital that seems to seep into every pore.

Dry Shampoo

Oftentimes you have a drip inserted, or some kind of appendage that makes a normal shower difficult, & the very idea of washing your hair is just beyond what you can cope with.  My admissions are only 5 days at a time, but I know there are many people who are in for much longer.  Hair goes greasy quickly when it is constantly against your pillow, & a little container of dry shampoo is an absolute lifesaver in making you look & feel better!  If you can't bring one of these in, perhaps offer to help wash our hair in the basin.  It will mean more than what you could ever imagine.  It's amazing the difference that clean hair can make.

Socks/Slippers

Going back to how cold a hospital can be, socks are an absolute necessity.  The best socks that my mum ever got for me had little grips on the bottom so I wouldn't slip when I got up to go to the bathroom.  If my feet are warm then my body seems to maintain heat a lot better, which makes me a lot more comfortable.

Data

I don't know about you, but I FLY through mobile data whilst in hospital.  Not all hospitals have WiFi & thus any time spent online, on Facebook or even whatsapp causes my data to run out a lot quicker than it does when I am just at home.  It is not something people think of, but this helps us keep an eye on what is happening outside of the hospital walls & also keep our family & friends up to date with how things are going.

Eyemask

Lights in a hospital are on 24 hours a day & this can make sleeping difficult.  Something that can be used to cover your eyes makes such a difference & can mean a proper nights rest - believe me we need this!  Sleep also helps your body to heal quicker so hopefully we can go home quicker.  There are some adorable masks at Typo & all sorts of pharmacies that would truly brighten our time away.

Facial Mist & Body Spray

The smell of hospital is one that is very noticeable & seems to hang around in our pores, leaving a lingering smell & reminding us that we are stuck inside & not in our own space.  

A facial mist is so very refreshing (my favourite is this one from Pink Cosmetics) & helps to cool down your skin should you have any reactions to the treatment or medication, as well as moisturising.  

The body spray keeps you smelling fresh & clean - it's great to just spray a little after a long snooze, or just before visitors pop in.

These are just a few ideas that I have collected from chatting to friends & family.  There are so many other ideas, & just anything that will get us to smile (including you!) is so so appreciated.

Thank you for loving all of us throughout our journey x

Just breathe...

At the end of last year, a friend reminded me how important it is to go for all my check-ups - I had been so focused on my MG throughout the year that everything else had fallen by the wayside.  I hadn't even gone to the gynae since my miscarriage in January 2016!  After her constant nagging reminding; I made an appointment with the most amazing doctor & went in for all the normal checks & tests.

On my husband's birthday, we got a phone call to say they had found abnormal cells & I needed to go into his rooms asap for a biopsy of my uterus - aka a "womb punch".  I have had abnormal cells before, but they lazered them away without too much concern.  However, my new gynae wanted to make sure he knew what it was before we did anything.
I went into his rooms, absolutely terrified of this unknown!  Let me tell you something now - they say it doesn't hurt, but that's a great big lie...  Take a pain killer before. You are awake & quite able to feel everything that happens.
He also told me I am now insulin resistant, so need to add Glucophage to my daily intake of meds, as well as cut out all additional sugar from my diet.  No more chocolate or sweets, but rather try get my body as healthy as possible.  We think this is all as a result of the prednisone I have been on for many years, & the horrid side effects this has.  What may help me now has so many long-term effects, & I am only seeing a lot of these now...

I am very glad I went for the biopsy though, as I needed to know the results.  As painful & terrifying as it was; when they called to tell me I had tested positive for early stages of cervical cancer; I was so grateful to my friend for pushing me to make an appointment & that we could sort it out now.

My surgery was booked for 10/01 to remove endometriosis; ovarian cysts; CA cells; do a full D&C; & remove my remaining tube as this seemed to keep blocking up & causing infection.  I wasn't too nervous as I knew I was in the best hands possible & it would be a quick recovery - I have had them often enough to know I can handle this!

More scars added - luckily just little ones though!

The morphine drip that was my very good friend

My surgeon was happy with the results & I was discharged the following day with strong painkillers & instructions to just rest & take things easy - follow up in a months time.

Ok, I've got this!  Not the best start to my 2018 (I was meant to go back to work on the 10/01 & instead was being wheeled into theatre), but now all the baddies have gone; he managed to get all the cancer cells & now we can focus on moving forward...

The recovery from this op seemed to be more difficult than before, & I was absolutely exhausted the whole time.  I thought perhaps the pain killers were too strong for me, as I hardly ever take them so I decided to stop these.  Still I felt completely lethargic & constantly out of breath; plus my heart would go crazy then seem to slow right down.  I researched the Glucophage to see if it could be that as my dose had been increased & I found the following:

• tiredness
• weakness
• unusual muscle pain
• trouble breathing
• unusual sleepiness
• stomach pains, nausea, or vomiting
• dizziness or lightheadedness
• slow or irregular heart rate

Well, this is pretty much everything I was experiencing, so it must just be the meds right?  My body just needed to adjust & I just needed to push through.  I spoke to some other friends who had been on it as well, & they said they also battled initially but once their bodies got used to it then everything was much better.  Right, so I'm just a wimp!  Time to put on my big girl panties & deal.

However, the following weekend my husband & I quickly went to the shops to get a birthday present for a friend's daughter & I almost fainted while we were out.  I could hardly keep up with him in the shops, & I was sweating by the time we made it back to the car.  I honestly thought my lack of fitness was catching up to me, & I was more embarrassed than anything else.  I took things easy for the remainder of the day, & missed our friends' braai so I could have an early night cuddling my dogs.

On Monday morning I woke up & still felt a bit short of breath, but knew I needed to pop into the shops to get my sister's 40th birthday present.  I parked at the closest parking possible, & made my way inside - taking my walking stick just in case.  I had to pause at every seat along the way to the shop; take a breather; & almost passed out a couple of times.  I realised something was not right.  This is more than just my meds!  So I phoned my doctor who had administered my Rituximab & made an emergency appointment to go in & see her - she had said to me that if I feel any signs of a cold or flu coming I needed to go to her so we could sort it out quickly.

I walked into her rooms & collapsed on one of the chairs in the chemo treatment room, where I promptly burst into tears.  I was absolutely exhausted & so confused about what was happening.  Why was my body doing this?  What was going on?  Am I taking too much medicine now?
My pulse was 172, & BP was 145/100 - just from walking the 10m from my car to the rooms.  They decided to do blood tests & a blood gas (from arterial blood - not fun & so painful...) & they made me a cup of tea while we waited for the results.

Surprise!  Hospital admission - urgent.

A porter was called from the hospital & I was taken straight through to the ward where I was put onto oxygen & sent for X-Rays & a CT scan of my lungs.  They knew that something was wrong, but we weren't sure exactly what.  
Their fears were a clot in my lungs & we needed to see this asap!
I was not prepared for a hospital visit - all my meds were at home, my car was still in the car park at Dr Gunther's rooms & my cell phone was about to die & I had no charger.

I rushed off to get the Xray & CT scan then returned to my room to wait for the results...  That evening my doctor came to say the results weren't conclusive so we were going to have to either do a needle biopsy of my lung or a scope to try find out more.  
"But don't worry, you will be asleep for these!"
Well thanks, I am so glad.

Just after she left, the originals were all delivered to my rooms & I got to see what my lungs were doing...

You can see my perm cath & stitches from my Thymectomy here too

Not very pretty lungs

Those white bits in my lungs?  Those shouldn't be there...

I had no cooking clue what this all meant, & sent the images to my boss & family to let them know.  They were clever - perhaps they could tell more than me.  But nobody was saying anything.

The next day my doctor came back to see me & said she had found a cardio thoracic surgeon to perform the biopsy but she was currently in surgery so would come see me when possible; but they were starting me on an antiobiotic straight away just in case.
I asked her for the truth of what my scans were saying, as they all seemed a bit nervous.  She told me it was one of 3 things - a really bad infection (e.g. TB); another autoimmune disease; or lung cancer.  Given the fact that I had CA cells removed a week earlier, this didn't sit well with all of us.

My friend came & sat with me for the whole day so I wouldn't be alone with my thoughts & concerns & she was also there to help me sort through my emotions.  We discussed the reality that this could be it for me.  I may not make it through this op, as my lungs are already compromised from whatever this is; plus my muscles are so weak from my Myasthenia Gravis; plus I had an anaesthetic just over a week ago.  It really hit home for me.
I did realise the following:
I do not want extreme measures to be taken to keep me alive.  I don't want to be a vegetable or a burden on everyone else forever.
I am signing DNR forms.
When I die, I want a celebration of my life!  No sadness & tears, but a party with music & laughter & balloons - think of Kate Hudson's character in "A Little Bit Of Heaven".  That's what I want!

My friend helped me ask the right questions to the doctors & could take in more of what they were saying at that stage than I could.  She also organised for my non-invasive ventilation machine to be delivered to me so I could hopefully start sleeping better at nighttime, & rallied around to get me food, visitors & all sorts.  

So little & neat!

My sexy mask - the machine forces air into my lungs which helps a lot when I can't get a deep breath in

The surgeon arrived that afternoon, introduced herself & picked up my scans.
When she just went quiet I knew something was wrong.  
"Megan", she said, "I am not happy to take you to theatre now.  I need to talk to the anaesthetist & prepare for this operation.  We won't be doing it tomorrow, but rather on Thursday morning first thing.  Recovery is going to be hard.  With these lungs I need to do an open lung biopsy.  This means I have to cut between your ribs under your right arm & take samples of your lungs.  We may have to deflate your lung to do this.  It is going to be difficult, & you are going to be very sore.  But we need to do this."

My heart sank.  It was my sister's 40th over the weekend & we had planned a trip to KZN to see her as they had just returned from the UK.  I had been planning for this for months.  Could the op not wait until next week?  I promise we can do it on Monday!!
"No Megan, your lungs won't take the air pressure of a flight.  We are afraid that if you fly you may die in the air.  They cannot cope with that."
Right.  Ok.  Gee.  This is actually pretty serious. 
Phone my sister.
Cry.
Hand phone to friend to pass on the news.
Throw temper tantrum.
Cry some more.
Swear.

Wednesday was spent with friends from work constantly popping in with treats & spoils, visiting the cardiologist ("You have a good strong heart Megan!  Nothing to worry about here!" - good news at last!); & going for more tests.  Operation is set for Thursday 8am.  Shew.

Thursday...

I'm ready!

They bring me the super sexy hospital gown & one-size-fits-all broeks - which I promptly place on my head & wait for the nurses to say something.  I needed laughter & happiness to fill the gaps that fear & concern were making in my soul.  They told me I'm not normal & gave me a big cuddle to help ease my heart.  My friend arrived by my bedside, squeezed my hands & told me everything would be ok.  Pre-op meds were given & off we went...

This was it.  I didn't even get a chance to message everyone.  
Was I going to make it through this?  
What was the outcome going to be?  
Can I go home now?  
My mind was full of so many questions, but at the same time I was already getting sleepy from the meds & just wanted to relax into the bed - now I understand why they give you these!  We were told the op would take maximum an hour & I would then be taken to ICU so they could keep an eye on me.

127 minutes later I was wheeled out of surgery into ICU.  I had made it, & didn't even need to be on a ventilator!  They had needed to reinflate my lung, but otherwise all went well.  They also removed my perm cath so for the first time in a year & a half I don't have a pipe hanging out of my chest!!  They were happy.  I had morphine, a thoracic epidural for my lung area & I was floating - as long as I didn't try to move.  I had a drainage pipe to get rid of any muck/blood that pooled around the biopsy area & I was left to sleep for the remainder of the day - except for when the physio came to get me to sit up.
I almost vomited from the pain & they quickly realised it wasn't going to work today!

Friday...
Sleep, & I managed to sit up in a chair thanks to the physio.  They said I needed to fight through this as we needed to start expanding my lungs & get them working again.  I was determined to be able to breathe better asap so I didn't give my body a chance to back out.  We still didn't know what this was, but my samples were being tested & I knew we would have answers soon.
I even managed to walk to the entrance of ICU with a walker & the physio holding on to me very tightly!  However, going off the oxygen is not an option as my stats dropped every time we tried.

Saturday...
Drainage pipe out!  Catheter out! Arterial line out!  Woop woop!  I manage to walk to the bathroom on my own with the walker & don't pass out.  I still can't move too much without pain, but every day is progress.
The doctors come that evening to say that the blood tests etc have shown that I don't have an infection as my white cells are completely normal - so no TB.  This is good news, but at the same time it says that this is most probably lung cancer.  I don't know how to take this.  My mind is going crazy.  How is this happening to me??

Sunday...
Morphine drip removed - I was managing without it & didn't want to become addicted.
I sent the following message to my family:
"Hi guys.  Managed to sneak my phone in.  Still in ICU - had a bit of a scare this morning when they thought I had an embolism in my lungs but luckily it seems to be ok.  Tests for TB & other infections have come back clear, but we are still waiting for the others.  I was on antiobiotics just as a precaution after the op too!  I'm very sore but managing to walk short distances on my own.  I'm going to be on oxygen for a while now until we can sort my lungs out but I'm feeling positive :)"
My heart kept going into V-tac & they sent me for more xrays, & the cardiologist came back to see me.  Everything came back clear & we just put it down to my crazy body.
Still no clear diagnosis as to what was wrong with me though.

Monday...
My sister & Dave arrived from KZN to come see me.  They spent nearly the whole day at my bedside talking to me & keeping me calm.  Just after they left for the evening, both my doctors arrived at my bed & I went absolutely cold.  This was it.  I could feel it...
"Can I phone my husband?"  I asked them before they could say anything.
"No Megan, it's ok!  You don't have cancer.  You have a very rare lung disease called PCP Pneumonia.  It is common in AIDS patients.  Because you have no immune system from all your treatment for Myasthenia Gravis, you white blood cells couldn't fight it & thats why it didn't show up in your blood results."
They went on to tell me that they have never seen this so advanced in anyone that was so alive, & by my results I should be either frothing at the mouth or 6 feet under.  I should not still be sitting up & talking to them, let alone walking around.  The technician who did the biopsy asked if it was part of an autopsy!
I was immediately started on very strong antibiotics, as well as nebulizers & I finally slept through the night.

People asked why I was in ICU for so long if it was "just Pneumonia".  For one, I needed to be constantly monitored as my oxygen levels were dropping; secondly my lungs are so damaged that I cannot breathe properly; & thirdly this isn't your average case of pneumonia!  I wish it was that simple...

I was finally discharged on Wednesday at about midday, after receiving an oxygen tank for the trip home & my own machine to provide me with oxygen for whilst I am away from the hospital.  My sats kept dropping when I went off the oxygen & we didn't want to take any chances!

So now, this is where I am.  I am taking 4 antiobiotic tablets 4 times a day; along with 12 prednisone every morning.  Add to that my pain killers, anti-nausea, tablets to prevent stomach ulcers & sleeping tablets means that I seem to be swallowing more tablets than food.  I don't have much of an appetite, but am now managing to be without oxygen for much longer periods of time & can even walk up stairs without needing a break!

The doctors told me that they were convinced it was cancer & they were terrified to tell me that - they also didn't think I would make it through the op so I am a walking miracle.  So now, now I am going to live my life.  I am going to take a deep breath in, breathe out & march forward through everything that life has to throw at me!

Taking The Next Step

After my last blog, we received such an amazing outpouring of love & support.  It honestly blew me away & made my heart feel so full & happy.  It reminded me of the wonderful people that we have in our lives, & how many people TRULY care.  So thank you!

Following my last blog, we have more of a plan going forward...

My boss flew me to Cape Town to see the top neurologist in Myasthenia Gravis in South Africa (Prof Heckmann at Groote Schuur Hospital).  We were at the hospital for close on 3 hours having muscles tests & talking through my previous treatments, as well as my symptoms.  I was having to use my cane again, even though I had only been out of hospital for just under 2 weeks.
Prof Heckmann has advised that I am classed 3B at best, & I was 4B at my appointment.  The table below shows the severity of this, & how close I am to needing intubation.

I have never been informed of my classification, so when I saw this I was quite shocked!  It is never a great feeling to be shown in black & white just how terrible your health truly is.

Anyway, Prof said that I am bad, but I am certainly not the worst Myasthenic that she has seen - every little bit of positivity counts right??  She has given us a way forward with regard to treatment & trying out something new in order to try improve my quality of life.

We have increased my Ciclosporin dose to 175mg twice a day - and these tablets are not for sissies!  The 100mg look like they could be suppositories, & I have nicknamed the little ones "ticks" as that is what they remind me of.  The number of times I have choked on the big ones & had them dissolve halfway down my throat - bleaugh the very thought makes me miserable!

Another important point that she brought up is that I am depressed.  People so often hide their mental health issues, & when she told me this I actually burst out into tears (proving her point I guess...).  I have never wanted to admit just how tough this journey has been on me, & always try to show up with a smile on my face & showing a positive outlook on life.  It has got me through a lot, but everything has come to a head this year.  I have been put onto a very low dose of antidepressant in order to just try take the edge off things & help me cope a little bit better - it has been almost a month & I can already feel a difference in my stress levels & I am not bursting into tears every 5 minutes.

Another point of her plan is the necessity of supplements - due to all the side effects of my medication that I need in order to live; I need to take some other supplements to help me through this & protect my body.  I am now taking Calcium, Slow-K (Potassium), Iron, Vitamin D & a Multivitamin.  Although this seems to increase my pill intake to a ridiculous amount, if it will help prevent further damage I will take them without a single complaint!

And now for the exciting part...
Prof Heckmann wants me to start on Mabthera/Rituximab.
Rituximab is a monoclonal antibody, which is a type of biological therapy.  It is a treatment for chronic lymphocytic leukaemia (CLL) and some types of non Hodgkin lymphoma. It is also used for some non cancer related illnesses. 
Rituximab targets a protein called CD20 on the surface of the leukaemia and lymphoma cells. The antibody sticks to all the CD20 proteins it finds. Then the cells of the immune system pick out the marked cells and kill them. In other words, it has been specially formulated to target the B-Cells in the body & attack these (this is where my antibodies are).

It was quite a mission to get authorisation for this, as it is not currently a proven treatment for Myasthenia Gravis & from what I understand, it is still in the trial phase (as such).  However, my medical aid has been amazing & authorised 4 rounds of the treatment so far.  We were hoping for at least 6 to be authorised, but we are currently discussing this with them & Prof has sent them papers proving the importance of this therapy.  Holding thumbs these will be authorised soon, as the drips are over R60,000 each!!

I had my first treatment last week Tuesday.

I arrived at the Day Clinic at 9am, & husband collected me at 4pm - so it was a very long day.  We started out trying to find a vein for over an hour, before they eventually put a hot wheatie bag on my arm & leaving this for sometime to try bring my veins to the surface.  These poor little veins of mine hear the word needle & burrow as deep into my body as possible, trying to stay safe.  Even when I spoke nicely to them & tried to encourage them to show face, it was of no use.

We managed to get a vein & have a line put up before beginning the rigmarol of all the premeds & actual treatment.  It went something like this:

Saline Solution

2 x Panado tablets

Cortisone Drip

Anti-Nausea Drip

Antihistamine Drip

Rituximab

Saline Solution

I had to be under the eyes of the nurses so my comfy chair was right under their noses - there is a chance of reacting to the treatment & we weren't taking any chances.  Luckily I didn't react while I was there.  All the meds just made me very very sleepy so I caught up on my lack of sleep in one foul swoop.

Wednesday (the day following my treatment) was a tough one.  Because my immune system is being attacked, I am more prone to infections etc, so when I went out to collect my medication from the pharmacy, I had to wear a medical mask.  I was so terribly nervous about how people would react, but the amount of kindness I was shown was amazing.  Smiles from people, people offering to help me & no funny looks - I honestly think sometimes I expect the worst which is not at all fair to others.

Snapchat mask - still looking for one that is this pretty!

I went out to get my medicine, & when I got back home I felt extremely short of breath & so nauseous.  I do not usually like reading up what the side effects are as I think your mind is a very powerful tool & can make you experience these symptoms...

I messaged my friend/boss, who sent me the following info:

Get emergency medical help if you have any of these signs of an allergic reaction: hives; chest tightness, trouble breathing; swelling of your face, lips, tongue, or throat.

Some people receiving a rituximab injection have had a reaction to the infusion (within 24 hours after the medicine is injected into the vein). Tell your caregiver right away if you feel dizzy, weak, light-headed, short of breath, or if you have chest pain, wheezing, sudden cough, or pounding heartbeats or fluttering in your chest.

Rituximab increases the risk of a serious viral infection of the brain that can lead to disability or death. Call your doctor right away if you have symptoms such as confusion, trouble concentrating, problems with speech or walking, vision problems, or weakness on one side of your body.

Call your doctor at once if you have any of these other serious side effects, even if they occur several months after you receive rituximab, or after your treatment ends.
fever, chills, body aches, flu symptoms, feeling weak or tired;
ongoing cold symptoms such as stuffy nose, sneezing, sore throat;
headache, earache, painful mouth ulcers, skin sores, warmth or swelling with skin redness;
pain or burning when you urinate, urinating less than usual;
severe skin rash with blistering, itching, peeling, or pus;
weak pulse, fainting, overactive reflexes;
muscle weakness, tightness, or contraction; or
lower back pain, blood in your urine, numbness or tingly feeling around your mouth.

Other common side effects may include:
mild stomach pain, nausea, or diarrhea;
muscle or joint pain;
back pain; or
night sweats.

OH JOY!

The nausea has been something out of this world, but luckily my breathlessness seems to have come right.  But I am on "house-arrest" now in order to try protect my body & get the most out of this treatment.  I don't think I actually realised how much this would take out of me, or how crap I would feel.  I have slept for at least 2 hours every afternoon & struggle to find something that appeals to my stomach at the moment.  I am hoping that my body will adjust to this new treatment, & hopefully things will get better as time goes on.  Positive thoughts people!

The ladies that I work with have taken up a roster to bring us food, meals & happiness so I don't have to risk an infection going out shopping & I can focus on getting better during this time.  I honestly don't know what I would do without them & I really feel so blessed by their friendship & compassion.  It has made my life so much easier & seeing friendly faces when I have been cooped up in our little house makes the world of difference.

So, this is where we are right now.  We don't know when/if we will see results.  They have advised that it will be at least 3 weeks before we see any improvement at all, & I am going back to Cape Town after 3 months to reassess & see what our options are.  This is an exciting time, & although it may be difficult - it is only for 3 months & may last for a lifetime :)

50% of patients with Refractory Myasthenia Gravis go into remission on this treatment & thus we are praying that I am one of those!

In other news, I was recently interviewed about living with MG & you can view this at https://www.youtube.com/watch?v=zbEUqF9q_K4&sns=fb  Any awareness created for this horrid disease is something I really appreciate & I was so grateful for this opportunity.  Plus my furkids made their first TV appearance & stole the show!!

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.

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!