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. 

 

 

What it means to be a Stroke Survivor.

Sorry its been a long time between posts!  Life has kind of gotten in the way....in a good way!  We have been very busy with our beautiful baby girl...she keeps us on our toes and she's not even walking yet!  She is a few days off being 11 months old, so I am well under way with planning her first birthday party and I can't wait!

Lately I have found myself thinking a lot about what it means to be a stroke survivor.  I'm not the one that had the stroke and survived, obviously, but as I was explaining to Dom the other day when things happen to him they happen to me too...good and bad.  When things happen that make him happy they also make me happy.  And so, when he had the stroke and spent time with paralysis that also happened to me, in a way.  I found myself thinking about the possibility of life with partial paralysis and what that would me for us.  For example, how would I be able to help Dom?  How would Dom be able to help himself?  Would he ever be able to work again? Play his guitar again?  Walk the dog again?  Cook with me?  Clean the toilets...because that's just eeewwwwww and I don't do it!  haha.  Thankfully these questions never really had to be answered because of Dom's remarkable recovery.  But I still find myself thinking about what it must mean to so many people out there to say "I am a Stroke Survivor".

Do they say it with pride?  Do they offer it up as a way of explaining their shortcomings?  Do they use it as an excuse of some sort?  What about their loved ones, partners, children, parents?  How do they interpret the term Stroke Survivor?  Its only been in the past few weeks that I feel I myself have changed my interpretation of that term.  I used to offer it as an excuse or explanation for Dom.  I would often say: "he had a stroke"... but not in a proud way.  Don't get me wrong, I have never been ashamed or embarrassed by Dom or the fact that he had a stroke...I just used it as an excuse I suppose.  But lately, I have found myself thinking more along the lines of: my husband is bloody amazing...he is a stroke survivor!  I think it is important for Stroke Survivors and their loved ones to recognise the feat of surviving a stroke, despite the lasting impacts said stroke may still be having on their lives, as something remarkable! Despite the cause of the stroke, medical complications, lifestyle choices...whatever the cause, be bloody proud of yourself!  You beat the stroke!  You are alive!  You are here, you wake each day, you see those you love, they see you.  You may be in the early stages of your recovery and are struggling to find the motivation to ace your rehab...take it one day at a time, one rehab session at a time, one milestone at a time...but take it!  Fight for yourself!  Get back what you can and make do with what you have.  Life is wonderful, don't give it up.

For us, life after stroke has not been easy.  We had an initial cruisy six months and thought we were all well and good, we even conceived our daughter, our first child, but then it all went to shit...or so it felt!  Dom started having seizures, which led to him falling into a depression so deep at times it seemed like there was no way out.  Today, two years after the stroke, we still have challenges, but we have each other!  There isn't a day that goes past where I regret Dom's survival, despite the hard times we've had.  He survived a stroke!  He is a Stroke Survivor and I couldn't be prouder of him and the battle we have fought to get back what the stroke took!  We haven't always been upbeat and positive, there have been times where we have both been furious, frustrated and on the brink of being defeated, but we have kept on fighting and we will continue to do so.

Don't let stroke defeat you.  Fight.  Be proud to call yourself a Stroke Survivor.  I am proud of you.

Epilepsy...

So Dom has been diagnosed with epilepsy.  I think I mentioned this in my last post, but I feel like I'm only now wrapping my head around this and what it means.  Currently, his seizures are not under control.  He is on AEDs (anti-epileptic drugs - yes, new diagnosis means new terminology for me to learn!) Anyway, the AED's are not yet working properly and he is still having seizures.  Not great for him...or me and my PTSD!  (Yes, I did make that appointment with the psychologist..back under control).

Dom seems to be coping with this diagnosis much better than I am.  I think he now has a sort of 'roll with the punches' attitude...whereas I am now experiencing the "why us?" phase!  I think a lot of that has to do with us now being parents.  Dom realises how dwelling on these things has a negative impact on everything else.  I'm just finding things to be so much harder than I imagined and so I am questioning why it has to be us that has all this happen to.  We have a happy, healthy daughter so we are grateful, I'm grateful.  But I still wish I had a healthy husband too.  He is suffering from a lot of side effects to the medications, not just the AEDs and they are taking their toll on me.  I don't want him to be tired all the time, I want to be able to lean on him when I'm tired.  I don't want him to struggle to pick our daughter up or to play with her, I don't want to feel bad when I ask him to do these things because I can see how hard they are for him to do.  I just want to be a normal, healthy mummy and daddy that share the workload equally.  So why us?  Since Dom's stroke in June 2014 I have answered that question with "the universe only dishes out what we can handle"...well universe...I'm close to breaking point!

I don't want Dom to have another seizure..I hate them!  But I don't want him suffering with all these side effects either.  I want a version of normal that has us as equals again.  I wish he could easily switch medications to reduce the amount of side effects, but I feel selfish to ask him to do that when it can increase the chance of him having a seizure.

On the plus side, Dom has had two infusions of vedolizumab for the Ulcerative Colitis.  So far so good.  No seizures as a result of the infusions and some very positive signs in terms of his Ulcerative Colitis possible going into remission!  Fingers crossed we can get him there with these infusions.

The Stroke team at RMH, for us, lead by Dr Yassi, are happy with Dom's recovery so far and have agreed to follow up with him via appointments every three months.  This is great!  The less appointments the better!

We go back to see the Epilepsy Team on Monday March 7, so I'll post another update then.

2015..the year that was

All year I have been meaning to sit down and write an update but something has always popped up and I just haven't been able to find the time!

2015 started off positively!  Dom was weaning off Keppra (anti-seizure med) and was looking forward to driving again.  He had to slowly come off Keppra and be seizure free for 6 weeks and then he could drive again!  On Janurary 2 I got up at about 6am and took a pregnancy test...it was positive!!!  Dom & I had been trying for about 12 months before he had the stroke, and we had only just started trying again when I took the test!  Having a baby is something we have wanted for a few years and I was devastated that it didn't happen right away.   Then Dom had a stroke and all thoughts of a baby disappeared for the time being.  After the surgery in September 2014, we decided that we would try again.  After so many negative test results I wasn't overly hopeful, so it was the best way to start the new year!

February 17, four days after his last Keppra dose, Dom had a seizure.  It was a Grand Mal and lasted 6 minutes.  We were stopped at traffic lights just outside the police station on Flinders Street after coming off the freeway, we were on our way to an appointment with Dom's gastroenterologist.  The possibility of Dom having a seizure was always there, it had just slipped our minds.  So this seizure took us by complete surprise!  I had just asked Dom which lane I needed to be in once we cleared the intersection and he didn't answer me.  I looked over and the seizure was starting.  I froze!  I was so shocked!  A million thoughts raced through my mind...the first one, I'm sure was "Oh Fuck!", followed quickly by "shit, where do I move the car to?" I put the hazard lights on as the lady in the car in front of me got out to help me.  She could see what was happening in her rearview mirror!  The lady opened the back door and I laid Dom's seat back.  He was frothing at the mouth so I rolled him over and the lady called an ambulance.  The seizure finally stopped and we waited for the ambulance.  A policeman on his way to work stopped behind me with his lights on so that we didn't run the risk of someone driving into the back of the car.  Dom was taken by ambulance to the Royal Melbourne Hospital and I followed in the car (while shoving sultanas in my mouth!  At 6 weeks pregnant morning sickness had truly kicked in...I was hoping I wouldn't vomit in the car!)  Dom was restarted on Keppra, after having a second seizure that lasted 2 minutes in Emergency.  He stayed overnight in the short stay section of Emergency.  I brought him home on the 18th of Feb - the 10th anniversary of us being together!  A lovely nurse provided me with a handful of sickbags after seeing me sitting on the end of Dom's bed clutching one like my life depended on it!  Morning sickness turned into all day & night sickness!

We're expecting a girl!

Dom and I naively believed that once he went back on Keppra he would have no more seizures and life would go back to the way it was with all our focus being on our baby.  That was not to be.  Dom struggled a bit with the seizure because it took quite a while for him to recover - physically and mentally.  He remembered about the first 10 seconds of the seizure and those memories terrified him.  He remembered being in immense pain and actually fractured another three vertebrae in his spine.  The stroke and seizures from June 25, 2014 left him with a compression fracture in his L1, the February seizures resulted in compression fractures in L2, L3 & L4.  Since June 2014 Dom has now shrunk 6cm! I joked that because I love him so much he will be able to fit in my bag if he kept shrinking, then we would go everywhere together!  And so the road to recovery began, again.  The fractures have made a lot of things quite difficult for Dom.  He cannot hold things in front of him with his arms outstretched, he struggles to bend over as well.  Over time this has improved, however weakness is still evident and the pain often leaves him extremely fatigued, but he pushes on!

May saw another seizure.  This one happened at home.  We were going to bed (well I was already snuggled in), Dom was in the ensuite, he came out and as he walked through the door the seizure had begun in his arms.  I managed to get him to hear me telling him he needed to lay down on the floor.  Being 4 months pregnant I was reluctant to do a lot, but I managed to lie him down and this seizure lasted about 4 minutes.  I called an ambulance and my mum.  I needed her with me in case I was too tired to drive.  Funny how I thought of things like that once I was pregnant.  Back in June 2014 I drove after a couple of hours sleep.  Amazing how my thinking and concerns changed!  The ambulance took Dom to Werribee Mercy where he had some blood tests and was sent home at about 2am.  I came home with more sick bags - thanks to that lovely doctor!  From May things got a bit worse for Dom.  He struggled with the fear and anxiety surrounding his seizures.  The idea of another seizure terrified him.  He would constantly say to me "I'd rather die than have another one" or "if I have another one I hope it kills me".  This thinking was insane to me.  I had watched every second of his seizures and I could see the pain he was in, yet not once did I think he would be better off dead.  Dom's Keppra dose was increased and he suffered the side-effects of that.  He became highly anxious, extremely depressed and by July he was having suicidal thoughts resulting in him making plans and giving me passwords and advice on how to manage money once he was gone.  I didn't trust Dom to not harm himself while I was at work so he couldn't be left alone.  His dad, brother or cousin would stay with him while I was at work.  I remember one Friday quite vividly.  We woke up in the morning to my alarm and I was feeling quite tired, I said to Dom that I wished I didn't have to go to work.  He said to me that I should take the day off.  I thought about it, but decided I couldn't.  I'd missed too many sessions with my classes because I'd stayed home with Dom or taken him to appointments.  My Year 12 class had a SAC and I needed to be there.  He was disappointed I said no, but there was nothing I could do.  We got ready for the day and as I was leaving I gave Dom a kiss goodbye and asked him "will you be here when I get home?"  He had hardly spoken to me since I had said I couldn't take the day off work.  He replied "today, I'm not sure, I don't think so.  Remember I'll always love you"  Well, shit.  Walking out the front door after hearing that was the hardest thing I have ever done.  I told his brother not to let him out of his sight and to call me if he needed me.  I cried the whole way to work!  He was perfectly happy a couple of hours later when we spoke on the phone and had no idea I'd spent the morning crying because of what he had said...I wanted to kill him!  Ironic huh?

Dom started seeing a psychologist and his Neurologist at RMH referred him to the Neuropsychiatrist as the suicidal thoughts were alarming.  Dom's Keppra dose was reduced and he was started on Sodium Valporate to try to control the seizures, he also started on anti-depressants.  He improved.  His moods improved.  He was no longer suicidal and was handling the idea of another seizure much better.  He became more positive, I felt like I had gotten the old Dom back.  On August 3, my first day of maternity leave, I drove Dom into Melbourne so he could work in the office, rather than from home.  I treated myself to some retail therapy and enjoyed bumming round the city.  I was looking froward to doing it again!  That night Dom had another seizure.  It lasted two minutes and he was able to call me before it began.  He was on the couch when it happened, so I supported him so he wouldn't fall off, very challenging at 7 months pregnant!  Called an ambulance and my mum - I have a very well established little routine now!  The ambulance took Dom to the Footscray Hospital. Mum and I witness some interesting people during our little stint in the waiting room! I think my poor mum is traumatised for life!  We came home a few hours later.

Again Dom was pretty shook up after the seizure, but he handled it better than I expected.  After talking with each other about what scared him most with the seizures we were able to come up with a new plan to reduce the anxiety around the seizures.  Dom would remain incoherent and incommunicable for approximately 30 -50 minutes after the seizures would end.  In that time I would have already called and ambulance and so after each seizure the first thing Dom consciously remembered was being surrounded by strangers - the paramedics.  Which would freak him out.  He wouldn't know where he was, what happened, how long it had happened etc.  Hence, the fear.  And so we decided I would only call an ambulance if he was injured during the seizure or if it lasted more than 4 minutes.  This plan was supported by the Neuropsychiatrist, Neurologist and the Psychologist.
During Dom's sessions with the Psychologist, which, in the beginning, he wouldn't go into unless I went in with him, the Psychologist was able to pick up that I was suffering Post Traumatic Stress Disorder (PTSD) from the seizures.  I already knew that, but had thought if I ignored the nightmares and flashbacks I would be ok.  Her concern was how that would increase the chances of me suffering Post Natal Depression after I had our baby.  And so I began to see the Psychologist and started using some strategies to help with the flashbacks and nightmares, which in turn helped reduce Dom's anxiety around seizures.  I had gotten so bad that I was seeing people, not just Dom, but anyone and everyone around me having a seizure from a simple movement.  A lady at worked sneezed and I almost pounced on her thinking she was having a seizure.  A guy in the car in front of me was brushing his hair while we were stopped at traffic lights - I saw it as him having a seizure.  Dom would roll over in bed at night and I'd think it was a seizure.  Very stressful way to live and not good for me, the baby or Dom!  I am now much better.  Still have my moments though they don't happen as often.  Still, my fear is not good for me, the stress is not healthy and can increase the chances of my baby developing anxiety now or in the future.  (Really need to book an appointment with the Psychologist again...will once I finish this!)

Daddy & Grace- only minutes old.

Our little family Sept 18.

In the countdown to my due date, September 13, the stress my being in labour would place on Dom was a big concern.  We were worried he would have a seizure while I was in labour or in the days following the birth.  How the hell would I handle that along with a newborn?  Labour lasted 54 hours, starting at 4pm on the 15th of September.  By the 17th we went to hospital at 4am and our little girl, Grace Alice, arrived at 6:38pm that night.  Of course it couldn't be straight forward.  My blood pressure was scarily high so I had to have an epidural.  Then the placenta wasn't in tact and I ended up being taken to surgery to have a D & C and given two blood transfusions.  What was supposed to be a 2 day stay in hospital turned into a 5 day stay.  The nurses were well aware of Dom's medical history and were lovely to us; helping me with night feeds and nappy changes so we didn't wake Dom.

Mummy looking worse for wear!

First family portrait
 Grace 8 weeks old.

Dom had a seizure on October 31st.  It lasted 2 minutes and left me shaken.  No idea why this one scared me more than the others.  I just know I felt so alone when this seizure happened.  Maybe it was my hormones after having a baby?

Daddy & Grace watching TV

I rang my mum, she came and looked after Grace while I looked after Dom.  Dom was fine.  He felt it coming so sat on the couch.  I stayed with him through the seizure then helped him afterwards.  This seizure was the worst in my mind because of how angry and aggressive Dom became after it.  He was confused (nothing new after a seizure), but this made him frustrated - he was frustrated he couldn't go where he wanted to without my help, he couldn't find the bathroom and so he got angry.  Dom never gets angry with me, despite how much I may spend on a shopping spree!  So this was new and scary because he was still not with it properly and so he wasn't listening to me when I explained things to him.  He has no memory of these 45 minutes, but has apologised endlessly which breaks my heart.  He has no idea of what's happening or what he's doing yet he apologises anyway.

Grace's arrival in our lives was so wonderful.  She gave us a new focus.  We almost forgot about seizures and the anxiety and stress surrounding them.  We were happy and tired, grateful and tired, in love with our little girl and did I mention tired?  Being a parent is the best thing ever, tiredness included.  Its been hard but wonderful.  A baby has led to a lot of adjustments in our lives.  We had to shift our focus from Dom to Grace.  I felt like I was the mother of two children instead of one at times.  I have had to learn to take a step back from hovering over Dom and he has had to start putting Grace and I before him.  We have fallen into a great routine and as Grace has gotten older Dom has been able to do more things with and for Grace.  At the start he struggled to pick her up because of his back, but he has persevered and is now able to bath her and everything!  He absolutely adores his little girl!  Nothing brightens my day more than to hear him talking to Grace and her responding chatter that only she understands.  His smile when I bring Grace to him is blinding.  He is no longer as fearful of seizures, he has accepted they quite possibly could be a permanent part of his future.  A future he talks about, a future he plans for, a future he is looking forward to.  I haven't given up hope that his seizures will be controlled with meds, but Dom doesn't like to dwell on hoping for that in case it can't happen.  He just wants to be able to move forward, and if that includes the occasional seizure then so be it.

And so here we are on December 31, 2015.  Dom hasn't had a seizure since October 31, Grace is 15 weeks old and chattering to us non-stop (something she gets from her mummy).   She has her daddy's smile and eagerness to know everything, while she got my temper and hopefully strength.  The twist in our roller coaster of a life has taught me a few things.  One, I didn't realise how many people doubted my love for Dom until they've said to me "good on you for staying with him".  Let me make it very clear, not once, ever, in the past 18 months did I ever contemplate leaving Dom.  Yes, I thought about life without him in it, but the only way he wouldn't be in my life would be if he had died, not because I chose to leave.  When I said "for better or worse, in sickness and health" I meant it.  Please don't insult me by commenting on my staying with Dom, I'm his wife, with him is where I belong and where I want to be.  Two, friends have not stayed friends, but others have become more.  I am sad that not all of our friends have been as understanding as we've needed, but I choose to look past that to the friends that have continuously gone above and beyond for Dom, Grace and I.  You know who you are and we love you so much.  Three, despite the challenging times we have faced, Dom & I have come out the other side stronger and now with our beautiful baby girl.

Dom now has epilepsy as a result of the stroke.  He will be on warfarin for the rest of his life, along with anti-seizure meds.  He will begin a new treatment for his Ulcerative Colitis in the new year.  We are looking forward to the idea of having the UC under control.  Doctors are still working on stabilising the epilepsy and are positive that they can get Dom seizure free.  He still can't drive as he has to be seizure free for 6 months before he will be allowed to drive again.  This gets him down but I just point out that he has the best looking taxi driver at his disposal :-)  We are looking forward to 2016.  We have set ourselves some goals and will work towards achieving them.  Dom wants to go back to working in Melbourne rather than at home and he wants to be able to take the train in and out of the city to do it.  While 2015 didn't go the way we would have liked it to, and it did seem a hell of a lot harder than 2014 ever was, we've survived it and have starting living again, rather than getting through each day, we are living each day.

Our little family bright & early
on Christmas morning.

Present time!

We are looking forward to a happy & health 2016.

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!