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!

Time flies when you're.....attending appointments?

Where has the time gone?  It has been just shy of 6 months since Dom's stroke and they have been a crazy-busy few months for us.  Dom has had a number of appointments to attend which have been educational and a lesson in calendar management!

On September 11 Dom had to attend RMH for a Pre-Surgery Assessment to ensure he was ok to have the operation to replace his bone flap that was removed on June 27.  This surgery took place on September 18 and was a success!  All went well with no complications – such a relief! 

This surgery was a strange moment for me and an exciting one for Dom.  When he had the bone flap removed on June 27 it was such a rush to get him through to theatre and my consent on the paperwork that I didn’t get to say goodbye to Dom before they took him in for the procedure…I’m thinking I would prefer this option, not the crazy, it's-the-only-life-saving-option, but having the operation sprung on me in circumstances where I didn't have time to think and dwell on the not so positive possibilities, and I think, for me, this more preferable than having time to process the procedure and all of the associated risks standard to any procedure.  I had a whole week to dwell on Dom having this operation – it seemed like the longest week ever!  I had a lot of time to think about the what-ifs…not even going to revisit them to write them out for you!  Needless to say, I lost my positivity at times and was scared about what could happen.  It was wonderful to be able to talk this through with Dom though and share how we were feeling about the procedure this time.  Dom was excited at getting his bone flap back, he couldn't wait to look and feel 'normal' again.

 

An excited Dom before the operation - September 18.

When they took Dom to go through for the operation there were lots of tears…from me…and kisses from Dom to stop the tears!  Turns out there was no need for the tears, he was fine!  He gave Mo (neurosurgeon) a thumbs up in recovery and asked for me to be called as soon as he was transferred to the HDU in 4 South.  Apart from feeling sleepy he was great!  He had a chat with me and my brother, then with his parents, brother and sister-in-law when they arrived, then my mum when she arrived.  He was all settled and asleep when I left for the night…nothing like deja vu walking out of the room that night! But it was nicer to leave knowing he was communicating normally and that it would only be a short stay.

Dom in HDU after the operation.
(Not impressed with me taking a photo!)

On September 19 Dom was moved to the ward in 4 South and on September 20 I was able to bring Dom home.  

Smiling once again - September 20.

He was feeling pretty good, good enough that we were able to go to his cousin's 18th on September 21!  Something Dom and I both didn't want to miss.  Dom had already missed three of his cousin's 21st birthdays because of the stroke and he was determined to not miss another milestone birthday!  He was more fatigued than normal for about 5 days after the procedure, but now he’s as good as new!  In fact, today (Nov 18) was Dom's follow up consultation with Neurosurgeon John Laidlaw at RMH.  John was impressed with Dom's overall recovery and from a neurosurg perspective Dom is healing well and so John has discharged Dom to the Neurology team...so one specialist is now off the list!  

Bronte's 18th - September 21.

We have had a lot of appointments in the past three months!  September 12 was the first follow-up appointment with the Neurologists at RMH.  We saw Dr Bruce Campbell.  Dom remembered seeing him during his initial few days in HDU after his first surgery, so he was excited to be able to have a chat about what happened to him and where to go from here.  We will have another follow up appointment with the Neurologists in January 2015 Dom has an MRI/MRV in December to see what, if any, brain damage has occurred and what the clot size is…if it’s still there.  In the mean time Dom is still on Warfarin to keep his blood thinner so it takes longer to clot.

Dom has also seen a Haematologist to look into the possibility of a genetic predisposition to clotting.  After a blood test it turns out Dom is one of the 3 - 4% of the world's population that is more susceptible to clotting that the rest of us.  This is something that was passed down from one of his parents and many people with this condition live a perfectly happy, healthy life without knowing about this condition.  However, in Dom's case, this was a contributing factor to him having a stroke.  Almost like all the planets aligning...for Dom several factors were in place at the one time resulting in a clot and stroke.  All of these factors are being individually explored to put preventative measures in place.  And so, due to this genetic tendency to clot, the haematologist has recommended, very strongly, that Dom continue to take Warfarin in order to prevent his blood from clotting again.  Won't argue with that suggestion!  So fortnightly blood tests to determine Dom's INR are now the norm for us.

We have also been seeing an Endocrinologist to investigate Dom's mild osteoporotic diagnosis, discovered after an x-ray confirmed a compression fracture of his L1 vertebrae which lead to a bone density test revealing the osteoporosis.  Dom will receive medication on December 19 through an IV which will try to halt the osteoporosis and possibly reverse the low bone density Dom has. This IV treatment will happen once every 12 months for 2 - 3 years and, hopefully, by then his bone density will have improved.

The compression fracture in his L1 has been causing Dom quite a bit of pain so we have been going to Elyas at Optimum Function in Truganina.  Elyas is very knowledgable in the impact stroke can have on the body and of course what the L1 fracture was impacting on including Dom's range of movement and also his posture.  Dom is now a regular client of Elyas and after only two weeks of consultations we are already seeing immense improvements!  

Dom returned to work - full-time from home in November.  This was successful and he has been able to complete full days without experiencing ridiculous amounts of fatigue.  His stamina for daily activities has improved.  On Thursday December 4, Dom returned to work in the Melbourne office.  He caught the train to and from work and worked a full day!  I was nervous and anxious!  I went with Dom to Melbourne for the day.  I needed to, for me.  The last time I said goodbye to Dom before he went to work in Melbourne, he didn't come home for three weeks!  It was an emotional day for me.  I am so proud of Dom for how far he has come in his recovery.  I am inspired by his determination to get past the stroke and get on with life.  Despite working the whole day, and travelling on the train as well, you couldn't wipe the smile off Dom's face that evening.  He was excited that he had done it, that he could do it, and was looking forward to the next time he could get back to the office to work.  Meanwhile I was exhausted....lots of window shopping between Melbourne Central to Collins Street...Emporium is amazing!

The appointments are still coming in and we are still juggling the calendar but we are grateful that we have the opportunity to do that and often think of the other scenarios we could be facing instead of this one…it could be so much worse and for many stroke survivors it is so much more challenging than what it is for Dom & I.  If that’s you then please hang in there…visualise the light at the end of the tunnel and enjoy the small pleasures in life, especially when Melbourne gets a rare visit from the sun to brighten your day; like on a weekend a few weeks ago where we spent Sunday at the State Rose Garden Show!

 

We look forward to celebrating Christmas with our friends and family.  We are grateful for the second chance at life we have now got and won't take it for granted.  However, bring on a happier & healthier 2015 please!