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!