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!

World Stroke Day 2014

WORLD STROKE DAY: Wednesday October 29, 2014

Today is World Stroke Day and it is also 4 months after Dom had his stroke!  The journey through rehabilitation and recovery has been long, and at times felt never ending.  The light at the end of the tunnel has teased us by coming closer and moving further away.  Specialist appointments result in a barrage of feelings from anger and frustration to elation and positivity.

Over the past month, through a host of specialist appointments, we have discovered that Dom's stroke resulted in a number of factors aligning at the same time - factors which were unpreventable.  I think this is the hardest part to accept - that we couldn't have done anything to prevent his stroke, and that there is not a lot we can do to prevent another one except ensure he takes his Warfarin.  Its the helplessness that is the hardest to process.

As a wife I want to take care of my husband, look after him, make him happy, love him for my whole life.  Some days it feels like stroke is the dreaded rain cloud hanging over a day of outdoor fun.  Its not something I can forget, seeing him in the hospital - so sick, and me being unable to do anything to change that for him.  I would do anything to switch the roles, to have the stroke so he doesn't have to go through all this.  Although when I think about that properly, Dom would probably prefer it not be me that had the stroke - I can be a moody bitch at the best of times, let alone when I'm sick or injured.

The World Stroke Organisation http://www.world-stroke.org/  is using the 2014 World Stroke Day for their 'I am Woman' campaign:

"The World Stroke Organization (WSO) is calling for immediate action to address the global epidemic of stroke. 

The “I Am Woman” campaign reinforces the fact that while stroke does not discriminate between sexes, women are more at risk of

having a stroke and in many cases are the primary caregiver to an affected husband, father, partner, daughter or son."

http://www.worldstrokecampaign.org/get-involved/campaign-advocacy-brochures.html

 Objectives of the World Stroke Campaign and World Stroke Day - http://www.world-stroke.org/advocacy/world-stroke-campaign

• Raise awareness on the profound and universal impact of stroke on human life and suffering;
• Increase understanding of the solutions that exist. Prevention is the most readily applicable and affordable part of knowledge. Key actions must be made to encourage healthy environments to support healthy behaviors.
• Translate knowledge into action. Transdisciplinary teams must be encouraged to develop expertise and translate evidence into practice. Establish simple but comprehensive stroke units. Stroke units have long proven their worth, even in their most basic form.  And, work towards building a healthcare system that responds to the needs of each individual living with the impact of stroke.

Generate a movement that stimulates collective responsibility and action. Families, community-based groups, professional societies, national governments and the international community all need to support the delivery of programs and services to all persons affected by stroke, as well as fight for better access to basic health services.

- See more at: http://www.world-stroke.org/advocacy/world-stroke-campaign#sthash.Q6Ft89ul.dpuf



1 in 6 people will have a stroke in their lifetime.  Women are at greater risk than men of having a stroke, but women are also more likely to be carers of a stroke survivor.  So today, World Stroke Day, take a moment to think about your loved ones and how 1 in 6 could effect you and the ones you love - what are you going to do to prevent becoming a stroke statistic?

Unite with me and Dom in the fight against stroke.  Contact me if you would like to purchase a Stroke Solidarity String or purchase directly from the Stroke Foundation - funds raised are donated to the Stroke Foundation.




I am woman...stroke affects me.  But I am thankful for the second chance Dom has at life, we will not waste it.  Help me raise awareness to fight stroke by sharing this blog with everyone you can.

We are still raising money for the Stroke Foundation via our Everyday Hero account; please donate if you can, and share this link so others can also donate: 

http://challengestroke.everydayhero.com/au/jessanddom 

Our Wedding Day - January 7, 2012.

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.

Rehabilitation

On August 11 Dom had his first appointment at the Rehabilitation Centre at our local hospital.  This first appointment was an assessment interview and he did some physical tests with the physio.  Dom was really looking forward to the rehabilitation sessions as he was finding the exercise program he brought home from hospital too easy now that he'd been doing them everyday for three weeks.

Happy to be back in the garden, and a very happy dog too!

Dom and his physio found that his back pain was preventing him from fully undertaking the physical therapy program and asked him to have an x-ray done to see if that showed anything.  It showed something alright!  His has a compression fracture of his L1 vertebrae and after a bone density test has now been diagnosed with mild osteoporosis - a result of prolonged use of prednisolone.   And so now he is also taking Vitamin D and Calcium tablets each day until we find out more from yet another specialist on October 9.


The news of the compression fracture affected Dom more then the stroke diagnosis.  I don't know if this is because he is more alert than when he was diagnosed as having had a stroke or if it was just because he was told of the fracture in the middle of a rehab session where he was feeling really positive...he doesn't know why.  What I do know is that for a period of about 24 hours after being told of the compression fracture Dom seemed to sink into a depression.  He couldn't see anything that could be positive and for this brief amount of time he lost his motivation, strength and determination.  I found this hard to watch as he'd been so determined to get better from the get go, I didn't know how to help him.  I kept reinforcing the positives about his situation, and he finally began to see them and recognise these for himself again.  For this brief moment, a day and night, I was worried about how he was going to keep going, I was worried about how I was going to keep going.  It was tough being so positive in the hospital when I could see others weren't as positive as me, but once Dom was on the mend and interacting he was just as positive as me.  But this news knocked him for six, and for a little while I was being positive all on my own again.  But Dom snapped out of it, not to say he isn't still pissed off, and we both think occasionally "why me?" but, that isn't going to get Dom better, so we never think that for too long, or expect an answer!

An afternoon at the beach to cheer us up!

This moment of negativity led us to the National Stroke Foundation website : strokefoundation.com.au where we both found comfort in the inspirational stories available and the information easily accessed through the site.  It opened our eyes to a community of STROKE SURVIVORS (not victims!) and has helped us in Dom's recovery.  It led me to wanting to write this blog to possibly help others - to continue to community.  We are both now passionate supporters of the National Stroke Foundation and are using our work contacts and social media pages to help the National Stroke Foundation raise awareness of stroke.




Today is the first day of National Stroke Week and we have already helped to raise over $500 for the National Stroke Foundation through https://challengestroke.everydayhero.com/au/jessanddom We hope to be able to raise even more money throughout stroke week.

We are both taking the National Stroke Foundation's 'Challenge Stroke' seriously and are working at achieving it's goal of "Be Healthy. Be Aware. Be Your Best".  Please join us and share our fundraising link: https://challengestroke.everydayhero.com/au/jessanddom, the link to this blog: strokeat30.blogspot.com.au and take up the Stroke Challenge!

I'm wearing my Stroke Solidarity String to support this amazing charity!

Now that my blog is up to date with our present day activities, I will post again after the weekend as Dom has a pre-admission appointment with RMH Neurosurgery and a follow up appointment with RMH Neurology this week so hopefully we will have some positive news to enjoy and share with you.

Home Sweet Home

Dom walked out of the Sunshine Hospital at 11am on July 17; 23 days after having a stroke, 25 days after having emergency surgery.  23 days prior I worried about how I would get him home from RMH (thinking he’d hurt his back – nothing else).  25 days prior I thought I’d lose him forever…but here he was, sitting on the couch with me in our lounge room!  This was strange.  It was the first time in just over 3 weeks that I was able to sit and not have to worry about what traffic would be like getting to the hospital, did I have everything packed that Dom needed and requested, did I feed the dog and would he be ok being left alone again.  But Dom was home…more tears – happy ones this time! 

Home is where the heart is :-)

Now our focus turned to more extensive rehabilitation.  We didn’t want to lose what he had achieved at Sunshine, we wanted to build on it.  The first week of Dom being home were fairly quiet and it was nice to settle into a new kind of routine.  We were worried Dom would get bored, frustrated and without having external things to contribute to that he would become depressed.  So we came up with a list of ‘things’ for him to do when he was sick of watching TV.  He could play his guitar again, play his PlayStation, watch YouTube…we only came up with a small list and were thankful we had Foxtel. 

There were lots of things to organise now Dom was home….GP appointments, filling prescriptions, blood tests, finance management and decisions to be made.  I changed my work schedule to only going in to teach my classes, so I could come home to Dom during my free sessions. He was still getting used to the amount of concentration he needed to pay to simple everyday tasks, like getting his breakfast.  But he faced it one day at a time and set himself small goals to work towards each day. 

Dom threw himself into physical therapy.  He did two sessions a day in our home gym working on building his core strength and gaining back the muscle mass he lost during his hospital stay.  He still had weakness in the right side of his body compared to the left.  He had full movement but not the strength so he worked on increasing it while on the waiting list for outpatient rehab at our local hospital. 

Dom had lots of visitors during his first couple of weeks home and this motivated him to continue to improve, it was uplifting to have people come and visit and remark how much they couldn’t believe Dom had had a stroke a month ago…he looked so good and was so much like his old self, it was remarkable. 

Dom was so positive about his rehabilitation – he couldn’t wait to get into the outpatient program to further the progress he was making.