10 years on...

 - Dom turned 40!

- We've had three children: all girls!

- Work promotions

- Family holidays

- Dance and swimming lessons

- School pick ups and drop offs

...the list goes on!  Our lives are so very different now when compared to 10 years ago and I'm so happy to say it's not because Dom had a stroke.  Well, if I'm honest, then yes, Dom's stroke has impacted on our lives and continues to do so, but our lives today are different because we've continued to live, to move forward.  

In terms of Dom's stroke survival and the impact it has on his (and our) lives today is not something a lot of people understand, or even remember is a thing.  Dom still has, and always will have, continual challenges with fatigue.  Some things are more exhausting for him than others.  Driving, for example.  A one hour drive to the beach and back can wipe him out for the evening/night and into the next morning.  An interrupted night of sleep (thanks kids!) can take Dom days to recover from.  And I've not always been the most supportive or understanding wife in these times.  Parenting is hard, worth it, but hard nonetheless, and in the moment when the three girls are all at me for three different things and Dom is lying in bed; well, I've been known to lose my mind a little (ok Dom - a lot).  But after the fact, I understand, and I recognise I was overwhelmed in the moment and wanted a partner to take some of the load.  Having said that - I don't think there is a better husband or father out there.  Dom is so kind, compassionate and patient.  He loves me and our girls with all he has, and we never doubt his love for us.  

In the past 10 years, Dom has recognized his challenges post-stroke and developed strategies to overcome these.  Some of the challenges he has had to overcome, and still does on the daily, along with the fatigue, is slight aphasia when he's tired and short-term memory difficulties.  These are causes of frustration for Dom, however, his ability to be resilient and overcome these challenges continues to inspire me.  He has received some work promotions and acknowledgements of his capabilities in his role over the last 10 years that when colleagues learn of his stroke they are astounded at what he can and does do at work.  

I am beyond proud of the man I married.  He is strong, intelligent, supportive, caring, loving and an inspiring stroke survivor.

Happy 10 year anniversary boo...I am so thankful you fought the odds and are by my side today and everyday! 

4 years later

Each year the anniversary of Dom's stroke gets less recognition from us.  I feel like it is similar to the death of a loved one - its not something you celebrate, it is just something that on that day I think "oh yeah, its been ... years since I lost them - wow thats gone fast", and then I go on with my day.  This year however, June 25 came and went and I didn't even think of the significance of that day.  I was a little busy with our almost 3 year old daughter and our new baby girl.  We welcomed Emily into the world on June 17, 2018.  So I may have been a little sleep deprived on June 25 this year! 

Four years on from that fateful day in 2014 and we now have two kids!  I remember at the time of Dom's stroke thinking that we would never have kids.  We'd been trying to conceive for about 6 months before Dom had the stroke.  And to have those negative pregnancy tests before the stroke, well, I just thought there's no way children will be possible for us now.  Then once Dom had recovered, well I was very unsure whether I really wanted to have children as the chance of Dom having another stroke will always be there, I just didn't know whether I wanted to be a single mother.  Turns out, my desire for children overrode my fear of raising them alone.  I didn't want to get to the point of being too old to have children and look back and regret the choice to not have them just because Dom might not be able to be part of that journey in our lives.  I thought "what if he is still here and healthy when we are in our 40s...I will regret not having kids".  So now we have two of them!  And my god do they keep us on our toes, but we wouldn't change it for the world!!

We were robbed of so much because of the stroke and then the epilepsy, but we haven't let that define us.  We have survived it and we are stronger for it - both together and individually.  I am a hell of a lot more resilient than I ever thought I could be.  I have always said "if you asked me how would you handle Dom having a severe medical emergency that would threaten his life, I would have told you that I would fall to pieces".  But that's not what happened at all.  I held it together.  I wouldn't say I thrived, thats not the right word, but I didn't just survive it, I accepted the challenge and kicked its arse!  I was heartbroken, devastated, petrified, uncertain, determined and hopeful all at the same time.  I look back on what I went through watching Dom go through those horrible couple of years and I am still shocked that I survived, that I came out the other side.  I didn't come out the same person - those couple of years changed me; not for the better and not in a bad way either, but I definitely changed. 

Dom was (still is) my everything.  But I now have the quiet confidence that I would be ok without him if that situation ever arose.  I remember conversations we have had over the years, before the stroke, that I would demand Dom die after me, that I could never handle losing him.  That I wouldn't survive and didn't want to go through that.  I still demand that he not die before me, but not because I wouldn't survive - I am confident I would...but now I just think he owes it to me after all he put me through to wait til I pass before he does.  Fair is fair isn't it? haha. 

So, we are we at now? Well we have two beautiful daughters.  Dom works full time, one day per week from home which helps him to battle and overcome the residual tiredness (thanks stroke).  He drives himself to and from the train station.  He gets up to Grace in the middle of the night, he reads her stories, plays games with her, guides her through her gymnastics classes when he can get to them and teaches her all about the solar system (her obsession - his as well coincidently).  He changes Emily's nappies, has fed her bottles on the occasions she has them (she's exclusively breastfed), he sings her songs, settles her down when she's upset.  Yes, he has some limitations but nothing overtly noticeable to the girls or anyone other than him and I.  He's an amazing father - as I knew he would be.  He hasn't let the stroke or epilepsy take that away from him. 

He is a wonderful husband.  He supports me, encourages me, helps me...he's everything he always was.  Yes, there are some slight changes in his personality compared to before the stroke, but I'm really the only one aware of them and in the past 4 years I have fallen in love with Dom 2.0 as I call him.  Some of the changes in him are a result of the stroke and some are a result of the medication.  I don't particularly care about the cause, or even the change.  Within him I can still see the man I fell in love with when I was 18 years old.  I can still see us growing old together and I look forward to each and everyday in between.  Yes, some days are not great - but I don't think the stroke or epilepsy is to blame - I think there are good days and not so good days in any relationship.  We disagree, but don't fight - we never have.  Some days I think "my god, I'm going to kill you" ...but what wife doesn't have those thoughts? I'm sure he wants to strangle me at times too.  We have a healthy relationship and a healthy outlook on life.  Our work-life balance has changed to life-focused, as opposed to work-focused.  Our girls, health and happiness are our priorities and that's the way it should be. 

 

 

Neurology follow up appointment: Friday January 16, 2015.

The lead up to this appointment involved a lot of planning: what questions do we want to ask, what will we find out?

Dom has been back at work full time; 2 days in the office & 3 days from home, for about 2 months now.  The most obvious hurdle to resuming life pre-stroke has been Dom not being allowed to drive.  So the goal for us was to get a plan in place to see Dom driving again ASAP...so that he can stop driving me crazy! :-)

Dom had an MRI in December & we got the results on Jan 16.  The MRI showed that the clot is shrinking!  This is fantastic news & is exactly what the Neurology team were wanting to see!  The MRI also showed a small number of dead brain cells; this was expected as the stroke did cause brain trauma for Dom.  After the doctor asked some questions regarding Dom's cognitive and motor skill abilities it was determined that there has been no effect (at least not an obvious effect) as a result of these dead brain cells.  It is an extremely small number and so the doctor was not surprised by this either.

The changes in Dom that we have noticed since he had the stroke could possibly be caused by the anti-seizure medication, so we are hopeful that these small differences disappear once this medication is no longer needed.  The changes are small, and we are now used to them.  Dom & myself are probably the only ones that really notice these differences; other family and friends wouldn't even realise that there is a difference.  For example, Dom is now more short-tempered and gets very angry, very quickly.  Having said that, he is aware of this and does try to control himself...not so well when Carlton lose though!  Another small change is that Dom speaks his mind more in public than he ever did before.  We are both very open with each other, but would always keep some thoughts to ourselves when out in the big wide world...at times, to me, it seems like Dom forgets where he is and will say something to me that has me cringing & looking around to make sure no one else overheard him!  Again, this is tiny, and others wouldn't notice these changes, but I do & initially, it seemed to be major to me, but now that I'm used to what I lovingly refer to as 'Dom 2.0' it is not a big deal.

So the outcome of the Neurology follow up appointment:
- Dom will come off the anti-seizure medication over the next 4 weeks; gradually reducing the dose.
- 6 weeks from the last dose of anti-seizure medication Dom will be able to drive again; provided there are no relapses now the anti-seizure medication has ceased.
- Dom will remain on warfarin as the clot is still there (but shrinking), and his Ulcerative Colitis and genetic predisposition to clotting has him at a higher risk of having another clot.
- Another follow up appointment has been scheduled for March, 2015 to review his progress again.

Dom & I were both really happy with the outcome of the appointment & I am already thinking of places Dom can take me on a date once he returns to driving!

Chillaxing in Lincoln Park, Carlton before the Neurology appointment at RMH.

This has been a wonderful start to 2015 & we look forward to continuing improvements in Dom's health as well as going on lots of adventures!

Stroke Week: Raising Awareness through Dom's Journey.

On Wednesday September 10 Dom & I got up nice and early to go into RMH to attend a presentation Dr Matt was giving on Dom’s stroke.

It was an amazing experience to sit in a presentation being delivered to professors, doctors, surgeons, scientists, registrars, medical students and I’m sure a whole host of others we weren’t even aware of!  We got to meet and thank Professor Davis, and also Mo, the Neurosurgeon responsible for the successful hemicraniectomy procedure on June 27. 

Dr Matt explained that he chose to present Dom’s case as it was Stroke Week and he thought it was a great way to contribute to raising awareness about stroke.  Dr Matt explained Dom’s background - you know the key stats i.e. age, pre-existing medical condition etc.  He then went on to detail Dom’s journey from his arrival in the RMH ED right through to his transfer to Rehabilitation, stopping to explain all the CT scans and MRI/MRVs in between!  I had a strong understanding of this whole process as Dr Matt was remarkable in ensuring I was kept up to date and informed about each scan and what they were considering in the early stages of Dom’s treatment.  Although I’d explained all this to Dom (and of course he read my blog!) it was a fantastic chance for him to hear about it all straight from the Dr! 

Dr Matt showed these CT scans along with many more.  As you can see the clot is quite obvious (of course once I knew what I was looking for it became obvious - kind of like a pre-natal ultrasound I suppose...it all looks like a black & white mess until the obvious is pointed out!) 

This scan shows the affected area of the brain - this isn’t a bleed, although there is a slight one, this area is the part of Dom’s brain that was affected due to the clot.

This scan is after the hemicraniectomy – as you can see quite a large section of the skull was removed and now that it’s out of the way, the brain has swelled to outside the area enclosed with the skill!  This was obvious after the surgery – one side of Dom’s head and face appeared to be swollen – turns out it was!

It was amazing to see this pictures as part of Dr Matt’s presentation and very educational!

Dr Matt went on to show these video's he took of Dom six days after surgery.  It shows how severe the paralysis was (although movement had begun to return when Dr Matt recorded Dom).  It also shows how confused Dom was.  When Dr Matt asks how long Dom has been in Australia for Dom begins to go through his numerical process where he would normally solve this type of problem by taking the current year, 2014 and then subtracting the year of his arrival from it.  He continues to repeat ‘2014’, and he either cant remember his arriving in 2000, or he is unsure what to do after determining ‘2014’.  This is hard for me to watch because as Dr Matt moves on and asks the next question I can see in Dom’s eyes that he is still thinking about the previous question and trying to work out how long he has been in Australia for.  He is unprepared for Dr Matt’s next question and cannot move on from the previous question.  It’s almost like he gets stuck and can’t let it go to continue answering other questions.

This visit to RMH was Dom’s first since being transferred to rehabilitation.  It was good for him to go back – he remembered sitting in the wheelchair in the cafeteria with his visitors.  He remembered going up and down in the elevator when we would ‘escape’ Stroke Ward for a break and fresh air.  This visit gave him a bit of closure as he was able to ask questions and continue to piece the memory fragments and bits and pieces from my blog to form full days.