Georgie's Journey

Today i celebrate one year exactly since my third open heart surgery! This time last year I'd still be in theatre during an 8hr operation to perform a septal myectomy and place a mechanical mitral valve. Frankly i wouldn't be alive to see this year through if it wasn't for this surgery and its thrown some major life changing shit at us, not being able to have children, daily meds, constant blood tests and a change in diet but i couldn't be more thankful to my surgeon and cardiologist for keeping me here and to my family & friends who have supported me the entire way through. An absolute hectic year but i couldn't be prouder of Aaron and i. This time last year Aaron was recovering from a cornea transplant as well, and we up to our absolute limit in debt with medical bills. In just a few months we've worked incredibly hard to get back on our feet and have since booked in our wedding and got our first ever brand new car. This year also taught me to be mor...

Migraines are extremely intense headaches and unless you've ever had one you can't begin to imagine how a 'headache' puts you completely out of action for a day or two. I've suffered from migraines since i was 3 years old, the same time i was diagnosed with CHD. I have no idea if they are linked or not but its an odd coincidence and something else I've dealt with since being a little girl. Migraines are extremely intense headaches that are made worse by activity and light. They make me very nauseous and i get sick almost every time. I've tried almost every medication under the sun and nothing has ever worked. I've had tests, xrays, seen nutritionists and specialist Dr's, as a little girl i was never allowed to eat foods with beef extract ( which sucked as i had a love for marmite and beef hoola hoops) and as a teenager they thought it might be dairy and i cut it out for years but cutting out these 'triggar' foods did nothing. After all ...

So it has come to my attention that people are actually following my blog as I've had a few messages asking if I've been away. Truth is i didn't think anyone actually read these and was more of an outlet for myself. So Anyway for those who do follow a few weeks ago i was admitted to hospital with a blood clot on my lung. It was fucking painful but not unusual as i have chest pain often. I was washing my hair and was literally so exhausted and out of breath i just cried and went back to bed. An hour or so later i needed to go to the pathology clinic to get my INR (blood test) done. Walking out of the clinic i was in so much pain under my left rib and also at the top of my chest and unusually out of breath, it hurt every time i took a breath. So i called my partner who immediately came home and called the hospital. Given my history and the fact i hate hospitals with a passion i didn't want to go and wasn't sure if it was a side effect to all my heart issues. The...

This last week has been full of hospital appointments (and a shit load of waiting around) for my 6 month follow up reviews. I got a mixed bag of results, Good news my pacemaker is working wonders, completely pacemaker dependent however at 100% with 8 years battery life left. My bloods are not bad, last INR was 2.3 so only slightly under range I've been given the clear to have an entire month of blood tests which is fantastic for me not having to stab myself every Friday. My new mechanical valve is working brilliant which is fantastic, BUT here's the kicker --- I've developed scar tissue below my aortic valve which is now restricting blood flow out of my heart and to the rest of my body. The only way to fix this is open heart surgery number 4 ! I'm pretty bummed, last year i made some massive life changing decisions and having a mechanical valve came at a cost of not being able to have my own children, warfarin ( blood thinners) daily meds and frequent blood te...

Between the two of us my partner and i often laugh at how life will be when we are old and senile with him not being able to see and me being powered by a battery we make quite the pair ! This week just marked another stressful week of the calendar with being told Aaron's transplant showing early signs of rejection. Thankfully we were seen by a cornea specialist who found a broken stitch that was causing all the irritation and an infection. A quick day procedure to remove the stitch. Phew I also got a call from the cardiovascular centre to say I'm receiving the new updated home monitor. I will now be able to bluetooth my pacemaker info to my phone which gets downloaded by the clinic every night. I've now reached robot update 100% with bluetooth, download features and constant monitoring. Last Saturday i spoke at the Women & Children's for HeartKids Education day, helping parents to transition their teenage heartkids into the adult health care system.  Person...

Today was no good, flat, moody, tired and just feeling meh. Some days are just rubbish and although 98% of the time I'm ok with chd a few times now and then i look down at all the years of scars on my chest and think yuck their ugly. Its ok not to have great days and i know this and i am super proud of my scars don't get me wrong but some days it would be nice to not have a constant reminder staring you in the face. Time to wrap up in all things cosy, bed, pjs, dog cuddles and pizza should do the trick. Henry knows when mum needs some extra cuddles, cute till he punches you in the pacemaker with his paw ! 🐕

First day at Cardiac Rehab yesterday, was a straight forward hour session with a physiotherapist. Was hooked up to a heart rate monitor and did a short walk and standing to sit exercise to watch the heart rate. Became a little breathless still so i need to work on getting the heart muscle strong before i can do any gym type of exercises. I've been given a at home plan to follow for one month which focuses on building heart strength rather than physical fitness, its a basic 'circuit course' where i use a resistant band, step box, stand to sit exercises and walking. very basic. Before my last surgery my physical ability was poor and i struggled for a few years with breathlessness, months before my surgery i struggled to walk down the street, perform work duties and even had to rest after household chores.. Correcting years of lack of use on the heart muscle takes time especially considering all my heart has been through, all up I'm expected to be in rehab for th...

Wow time has really flown by and i am now 16 weeks post op! Its really been a roller-coaster with some days feelings great and others a bit flat. I'd say i'm  almost   fully recovered, this recovery feels a little slower than my previous surgery which is all i have to compare with but considering i had two surgeries this time i am pretty proud of how i'm plodding along. I returned to work at week 10, just doing a few hours a week, in all honestly i could have had a few more weeks rest but i'm back up and running and enjoying getting out the house. Not sure there is too much left on Netflix to watch! I start Cardiac Rehab TODAY, so ill let you know how that goes. I'm a bit nervous. i haven't done any other form of exercise but walking and although I've managed some great distance walks i'm still a little breathless up hills so i'm looking forward to getting that new valve working hard. My scars are a mixed bag, the incision for the bypass machin...

South Australia's life style magazine published my story this month Click on the link below to read, page 5 https://issuu.com/lifestyle1-media/docs/lifestyle_1_issue_725/5

Alright so i guess I'm practically a terminator, invincible and something of the future ! I have not only my mechanical valve and pacemaker but also two wires anchored in my heart at 59cm and 69cm long, my rib cage is wired shut and i also send and receive data wirelessly, 100% battery operated, and i have two serial numbers. Superhero power is being able to ricochet bullets from the chest My weakness is magnets. But in all seriousness  I am now 100% dependant on my pacemaker due to what is called Complete Heart block and have 8 years battery left which will make me 34 at next robot update. Heart Block is the most severe type of heart block and is often caused by an existing condition, CHD in my case and complications during my last surgery stopped the electrical conductivity. Originally Dr's were hoping my heart would find its own rhythm but that wasn't to be the case and now i am completely battery operated.  My Cardiologist saw me about two weeks...

It may be valentines day but it is also sweetheart day, a day of awarness for those and their families living with Congenital Heart disease. No two people have the same CHD, it is the number 1 leading cause of death of children under one, sadly 4 children a week die from CHD and 8 babies a day are born with a heart defect in Australia. Yet there is no cure. At age 3 my parents rushed me to see a GP with a bad flu, the Dr noticed i had a heart murmur but said nothing to worry about and i would outgrow it by 10. At 5 years i had a general check up where a specialist Dr picked up that i had two holes and a leaky mitral valve, they couldn't believe that it hadnt been noticed earlier and told my parents i had a guardian Angel. I was told i would be wheelchair bound by 15 with a life expectancy of 30 without surgery and so began my heart journey. I'm proving those Drs that you can live a fulfilling life with CHD and at 26 years old im smashing it.        ...

I’m 5 weeks post op and this week I’m over it - I’ve hit that brick wall. Last week was my hardest week yet - I was very irritated, sore, tired and I was sick a few days.  I’ve been very sore, my pacemaker shoulder, collar bones, top of chest and near my drainage tubes hurt, the incision in my leg is still tender and the swelling has only just gone down. It was a pity party in my head last week, just fed up being sore and not fully being able to do things on my own, the heat wave last week really didn’t help either. Ive been resting and sleeping a lot but also working on my recovery. Ive been doing 20 minutes of walking a day and doing what household jobs I can manage.  Despite feeling a bit sorry for myself I’ve been keeping positive and my mind strong. I know that some days will be harder than others and I just have to remind myself to keep going and keep pushing through.  I managed to open the car door this week and sleep on my side for a few minutes, a...

So my parents and brother live in Mt Gambier which is a 5 hour drive from my home. After going through a big surgery i found it important to soak myself in my family love and getting spoilt ( I’m 26) but you can never out grow a good home meal and a cuddle.  I went home for one week and it really helped with my recovery - to anyone about to have heart surgery take all the help you can get and enjoy the recovery process as well, it’s not easy but easier when your surrounded by support. 

INR Stands for international normalised ratio - it is a blood test that measures how fast the blood clots. Anyone not on blood thinners has a ratio of 1, mine needs to between 2.5 -3.5. So if my level today is 2.5, it takes 2 1/2 times longer for my blood to clot.  At home INR kit  So this little kit arrived on my door step a few days ago from an anonymous sender ( I presume the hospital sent it) this machine however is $800 so I’m very happy I didn’t have to buy it like I was planning too.  This kit means I can test my blood at home and don’t need to visit a pathology clinic.  It works similar to what a diabetic would use, prick the finger and drop the blood on a strip which the machine then reads to determine how long the blood takes to clot.  The first time I used it I was very nervous I didn’t like the thought of pricking myself and got nervous and clammy- I was at the Dr’s to make sure I did it right. I tried twice but stuffed up ...

I’ve  been home from the hospital for 1 week now.  It seems longer but I’m progressing really well.  Still very sore in the pacemaker shoulder and the incision in my leg is uncomfortable and a bit swallowen still but apart from that I think I’m recovering really well.  I start cardiac rehab once I’m 4-5 weeks post op which goes for 10 weeks so still a long road to full recovery but I can see improvements each day.  Everyday things are getting easier like showering and getting dressed but I am still struggling with picking anything of the floor and everything feels extra heavy. My weight limit is only 2kg atm.  Some days are much better than others feeling tired and sore today.  My scars are healing well, my IRN is a bit all over the place so still having very frequent blood tests and Dr visits. My new zipper  Incision from bypass machine- the sorest of them all Drainage tube incisions healing well Pacemaker incision healing really well